My Story-My Battle with Pseudomyxoma Peritonei (PMP)

Annual scan and 2year anniversary of my MOAS....

2012-02-06T12:31:00.000-08:00

Last week was a busy week .......
Monday was the scheduled date for my 2nd annual CT scan at Basingstoke and North Hampshire hospital. We made the usual drive to Basingstoke after a relatively early start. The weather conditions were not great and there was snow on the ground in Bristol and it was still snowing a little. However by the time we had passed Swindon this seemed to disappear and gave way to cold winter sunshine.

We arrived early at the hospital and headed straight for the CT scanning department. My appointment was not until 13:15 but we were hopeful that we could be seen before then. Luckily this was the case and I was soon issued with my Barium drink after some frantic calls to my local GP who had not sent the egfr blood test results through to the CT department as requested.

We then headed down to the bloods clinic for bloods to be taken and then back to the CT scanning department. Whilst waiting we got chatting from a couple from Norfolk (John & Dinah). As it turns out John was a fellow PMP patient who had undergone his surgery only a couple of weeks before me and left a day or two before I arrived. They both knew a couple of the fellow PMPers that we had become friendly with whist at the hospital (Paul & Ann and Margaret, if you are reading John and Dinah send their best regards!) and we had a good old chat.

Soon my name was called and the usual routine kicked in. I got changed into my gown, went through to the next cubicle to get the cannula fitted before finally heading through to the scanner. The whole process was soon done and I was back getting changed into my civvies and looking forward to a bite to eat!

We stopped in the canteen for something to eat and a coffee before heading back down the M4 to Bristol. Unfortunately time had run away from us and we did not have time to stop at C2 and say hello as we had to be back to meet the girls when they arrived home from School.

So now the nail biting has kicked in, I have spun the PMP wheel of fortune and await those all important CT results. If I haven’t heard anything by Wednesday then I’ll give them a ring....

Then on Thursday 2nd of February it was the 2nd anniversary of my MOAS. It’s hard to believe that two years ago now I faced such major surgery. It’s true what they say, some of the memories are starting to fade a little whereas others are still very much burned into my mind. I have to give thanks that thus far I have been well and that I have been very lucky when compared to other patients I know.

I have continued to keep myself busy and continue to raise funds for the hospital over the last few weeks I have been making up bird nest boxes and selling them locally. 100% of the proceeds are being donated to the hospital as the materials have been donated to me. I have had several orders that will now keep me busy at the weekend for the next few weeks and will kick start the fundraising for this year!

A New Year and time for the annual CT scan!

2012-01-13T05:17:00.000-08:00

We had a great Christmas and New Year this year. It was pretty quiet all in all; we saw Tracey’s family on Christmas Eve, spent Christmas day on our own and then Boxing Day with my family.

It was the first Christmas day on our own in years. Normally we are rushing to get the girls presents open and to get ourselves ready before heading out to visit family for dinner. This means that I’m usually driving and can’t have a drink so it was nice to take everything at a much more leisurely pace this year.

We got up late, all sat in bed and opened our stockings and then ambled down stairs for breakfast. Then to the main presents! After that I cooked dinner and sipped on a nice glass of red wine along the way-chefs treat! The rest of the day was spent relaxing together and enjoying each other’s company.

The holidays themselves whizzed by and before I knew it I was back at work and back to the normal hum drum.

Over Christmas my physio has allowed me to start running again and I have been out a few times now. Just taking it easy and doing a flat 3 mile route for the moment but it’s nice to be back out again. I have put on some weight in the time that I have not been running and am keen to try and loose it again. Of course us PMPers always have that worry in the back of our minds that it may not be weight gain through the normal means and in fact something more sinister....

My annual CT scan appointment came through yesterday. I have to go to Basingstoke and North Hampshire Hospital on the 30th January for the scan. The usual plan of action is in place; I have to have an EGFR blood test on the 19th to test my kidney functionality before having the scan and on the day of the scan itself.I also have to get bloods taken for tumor markers.

So the next few weeks are a nervous time for us and any of you who have been through it will understand just where we are right now. The scan itself is no big issue, its awaiting the results that is difficult.

I know that Tracey struggles with this. It plays on her mind constantly and whilst she puts on a brave face I can tell it worries her greatly.

We try not to put things off pending results but it’s difficult, so many plans to commit to for the coming year all of which would come crashing down if the results are not good so we have found ourselves putting some things on hold for the moment.

We have a list on paper of the things we’d like to do this year and have been planning the details on many of them but just not committing to them. Hopefully, with a bit of luck and gods grace, in a few weeks time we will be able to make good on our plans. This includes another fundraising event in June....

You may remember that in my last post I mentioned that one of the Christies forum members was in surgery as I was typing undergoing her MOAS. We’ll I’m pleased to say that we heard from Carole yesterday and she informed us that she was back home and on the road to recovery after spending three weeks in hospital. We wish her well with her ongoing recovery.

What Do You Want For Christmas?

2011-12-20T06:38:00.000-08:00

It’s been a fairly quiet few months for me and I am pleased to say that I have had no PMP related problems to report! The end of October brought with it the annual flu jab which I now have to endure and around a week after that I suffered a very heavy cold that saw me forced to take some time off work and told to start on the emergency antibiotics. Whether or not the two were linked I’m not sure!

I’m slowly making a return to running with the assistance of my physio and hope to start caving again over the Christmas period.

Things have been very busy both at work and at home. I have managed to get a link to the blog site added to the PMP research foundation website in the US, have been active on both the MacMillan and Cancer research websites and recently was asked to do a live radio interview with BBC radio Bristol about rare cancers (sadly this got axed 1/2hr before it was due to air by the radio station! Maybe next time....)! So really trying to help raise the PMP profile.

I have added some additional functionality at the bottom of the blog page that now allows readers to e-mail me direct if you want to make a comment or ask a question and don’t want it to be read by all.

As we near the Christmas period and prepare for all the parties and festivities I have been very much aware of fellow PMP sufferers around me that are still battling. As I type, a new member of the Christies forum is undergoing her MOAS at Basingstoke Hospital.

My thoughts are also with a number of fellow sufferers who I am aware have had reoccurrences and now are undergoing chemotherapy treatment, some of whom had their MOAS around the same time as I had mine. I think regularly about those that have been told that there is no other treatment and that they only have a limited time left with their loved ones. These are people who I have grown to know well via the forums’ and who offered me so much support when I first joined. People who I am privileged to call my "cyber" friends. My heart goes out to them and their families at what I’m sure will be a difficult time and I hope they enjoy their Christmas’ together.

I had been talking recently to good friends of mine; Steve and Tracey Treweeks. Steve is a fellow PMP sufferer and celebrated his four year anniversary this year and walked the Snowdon Horseshoe with me to raise funds for the Christie. Tracey as Steve’s wife, supporter and carer when he was ill agreed to write down her thoughts as the wife of a PMP sufferer and asks.......What do you want for Christmas?

“It's that time of year when we hopefully get together with loved ones and enjoy a glass of mulled wine, sing carols around the piano and . . . wait a minute. That's what it looks like on Christmas cards and John Lewis adverts but for many of us the worry of what to get Aunty is outweighed by other more significant questions.

Anyone who has nursed someone through the recovery of Cancer surgery will know that at times life comes down to its most basic functions: food, drink, warmth, love; both for our loved ones and ourselves. We live in a world of 'that will do' or else beat ourselves up on what is not getting done, such as the housework, the ironing (I find the sniff test really comes into its own at times like these) or the washing up.

I recently asked our 3 year old what he would like for Christmas. After a thoughtful pause he asked for 'a really big cake'. No long wish list, no massive expense just a moment of pure pleasure in his insular world.

My list making dried up many years ago. We live in a society of such consumerism and luxury that in the main most of us struggle to name something we truly need. How wonderful.

But for some the wish list is not something that can be cooked up or shop bought. It is that those we hold most dear make it to the next stage, get through this one and we pray we have the strength to get there with them. I have told my family I already have my Christmas present. My husband was told he could move to 12 monthly scans from his current 6 month jaunt. I cry with joy at the very idea of not facing the roller coaster quite as often.

I guess in some ways our Christmas has come down to its most basic form: food, drink, warmth and love. No carols around a piano, but a focus on each other and the blessings we already have. So I wish each of you the strength that comes from love, that you have a full heart and raise a glass to better times to come”

So to all who are reading this and have been touched by PMP in some way I wish you a very Merry Christmas and a happy, healthy New Year.

Dave

Ten Facts about Psuedomyxoma Peritonei

2011-10-09T05:01:00.000-07:00

1. Pseudomyxoma Peritonei literally, this means false (pseudo) benign tumor with mucinous features (myxoma) of the abdomen (peritonei). PMP is sometimes known as "jelly belly". Source-PMP awareness.org

2. The first case was described by Carl F. Rokitansky in 1842. Werth in 1884 coined the term pseudomyxoma peritonei, describing it in association with a mucinous ovarian tumour. In 1901 Frankel described the first case associated with a cyst of the appendix.Source- Wikipedia.

3. The overall incidence is ~1-2 per million per year. It is slightly more common in women than men (male:female ratio = 9:11).Source Wikipedia.

4. Symptoms may include abdominal or pelvic pain and/or bloating, distension, digestive disorders, weight changes, increased girth and infertility. Source Wikipedia.

5. For the majority of people with true pseudomyxoma an adenoma is found in the appendix. Like many other tumours, pseudomyxoma can occur in people who lead healthy lifestyles.Source-The Christie

6. There are three approaches in the management of PMP- Watch and wait, Debulking and Cytoreductive surgery and peri-operative chemotherapy. Source-The Christie.

7. Cytoreductive surgery is an extensive procedure that lasts on average more than ten hours. If complete tumour removal has been possible, intraperitoneal chemotherapy has been given and the tumour is at the benign end of the spectrum, 50-80% will have 10 year disease free survival. Source-The Christie.

8. A picture of Pseudomyxoma Peritonei.

9. What does MOAS mean?-"Mother of All Surgeries!" - it refers to CRS/HIPEC - CytoReductive Surgery combined with Hyperthermic Intraperitoneal Chemotherapy), sometimes known as HIPEC or perfusion surgery. The phrase was coined by Sheri Telesh on her web site "Brian's Story" about her husband Brian who had PMP and has been cancer free for over 8 years. Source-PMP awareness.org.

10. Well known sufferers of PMP have been the late Audrey Hepburn (actress) who died of the disease, Steve Prescott –Rugby league player-St Helens,Wakefeild,Hull,Ireland and GB Lions Tourist.

2nd Birthday post MOAS and the Bristol 1/2 Marathon

2011-09-21T05:06:00.000-07:00

Last week saw my second birthday post MOAS. It was mid week and turned out to be a very busy day. I went to work and slogged away at my desk putting together an official tender document so it was all a bit heavy really! Then on the evening we did the family weekly shop and it was getting fairly late before I was able to finally sit down and eat my evening meal and relax! I spent what was left of the day with Tracey and the girls and my sister in law popped in to say hi and pass on birthday greetings. Before I knew it the day was gone.....

Part of me thinks I should be making more of the day having been through so much but part of me is also happy to see our old life returning with barely having two minutes to stop and think! It’s a sign of us recovering as a family.

I also met up with my good friend and fellow PMP survivor Steve Treweeks. I walked the Snowdon Horseshoe with Steve in August last year as our main fundraising event for Basingstoke and North Hampshire Hospital and The Christie and we had agreed to run the Bristol half marathon together this year and my fundraiser. Unfortunately I have suffered an Achilles tendon injury which I am awaiting a referral on and have been told I can’t run for at least three months.

Steve still came to Bristol to do the run and we were lucky enough to meet him and his wife Tracey and son William the evening before for a meal and then I met them in Bristol at the start of the race to cheer Steve on. The weather forecast was awful but on the day it turned out perfect and the sun shined. Jon also joined us and knew Steve from the walk as he was also part of the team. We saw Steve at several points around the course and he finished the race in 1hour and 51 minutes.

Spectating on the day was great but also just rubbed salt into the wound as I really wished I was taking part with Steve......maybe next year.

I have also been busy in the last few weeks trying to raise the PMP profile a bit on some of the major cancer charities sites in the UK. MacMillan have just re-vamped their site and have a number of groups that people can join to hold discussion including a Pseudomyxoma group-

http://community.macmillan.org.uk/cancer_types/pseudomyxoma_peritonei/default.aspx

There are very few entries on this group thread the last one being some five months ago. I remember when I first was diagnosed this was one of the sites that I first looked at and found not a great deal to be going on. I’m sure newly diagnosed sufferers would also do the same so it’s my intention to try and get things moving a little so that any new patient might be able to make contact and get some support. Come join the community and let’s get some conversation going on a site that newly diagnosed sufferers may turn to first looking for information.....
Similarly I have tried to do the same on the Cancer Research site and am trying to get some threads going. Again I feel this is a site that a newly diagnosed sufferer may go to first....

http://cancerchat.cancerresearchuk.org/thread/5499
Dave

Injury puts paid to Bristol Half Marathon....

2011-08-30T05:38:00.000-07:00

Unfortunately I have no option but to pull out of the Bristol half marathon due to injury. For some time now I have been nursing an Achilles tendon injury in the hope that it would get better. As is often the case with this type of injury it has in fact got worse. I have had a weakness there for some time and it is an old injury that re-occurs from time to time. As a baby I was born with a club foot and had an operation to straighten it and spent the first two years of my life in plaster from my hip to my toe so I guess I’m lucky that I can run at all......!

I plan to go and see the doctor this week as I have developed a significant lump around the Achilles that is very tender. It’s all very frustrating as far as fundraising for Basingstoke Hospital Pseudomyxoma and Colorectal cancer trust fund is concerned.

My good friend and fellow PMP survivor Steve Treweeks will be running the race however (we planned to do it together) and we will of course be there to cheer him on.

I will still continue to take donations to those who wish to donate to this very worthy cause. And have just sent £250 to the hospital who has confirmed that they have received the cheques.

I have had some good news however. The first year or so of my blog that covers my appendix perforating, initial diagnosis, MOAS, Stoma reversal, the Snowdon fundraiser and my recovery has been turned into a hardback book by a friend- Mike Donoghue. Only one copy has been produced complete with colour photos and is being kept by the family as a record of our journey. Our worry is that the blog exists only on the web and as part of a third party site over which we have no control. Mike has done a fantastic job putting the book together and we are very pleased with the result. Thanks for all your hard work Mike!

I continue to feel very well at the moment (apart from the Achilles!) and am pretty much back to normal. We have enjoyed some great days out over the summer holiday with the family doing day trips and visiting places. As I am currently unable to do any running, walking or caving due to my injury I have instead concentrated on my quieter interest such as fishing and recently caught a personal best 19.5lb Mirror Carp from my local lake.

I have to say that PMP is further from our minds now than it probably has been since the whole ordeal. We do still think about things and from time to time it comes up in conversation. I look at the Christies forum daily along with the Cancer research and MacMillan forums to see if I may be able to offer some help somewhere. But that’s all. The PMP Albatross as I call it weighs light at the moment..........times are good!

28/06/2011 Enjoying life......

2011-06-28T05:30:00.000-07:00

It’s been a while since my last post, mainly because as far as PMP is concerned I have nothing too much to report. I have had my first annual scan and the results have come back clear, so that’s it until next Feb I guess.
However I have been very busy making good on a promise and generally enjoying life. One thing that the whole PMP experience has shown me is to make the most of those special moments with family and friends and appreciate them for what they are. Take time, stop and linger in it and enjoy. Too many people let them slip by and take them for granted.

The biggest thing that has happened is that I made good on a promise I made to the family immediately after the MOAS and we have just returned from two weeks family holiday in Mallorca. We stayed at a family member’s apartment in the resort of Calla Millor. We spent the entire holiday relaxing, swimming in the sea and at the pool and enjoying the summer sun. The daytime temperature averaged around 33 degrees! We spent evenings walking the long seafront promenade and eating at the various restaurants along the way. It was just what we needed.

Our time there was real quality family time. No TV to stifle communication, no phone ringing, no work to worry about. We all sat around the table at meal times chatting and laughing. We spent time playing in the pool with beach balls, inflatable’s and snorkelling. Chloe became far more confident in the water and took her first steps in learning to dive and swimming underwater. Jess, ever confident often leading the way.

It was also a great holiday for Tracey and I. Both of us relaxed and rested for the whole two weeks. It was our first real opportunity since the MOAS and we enjoyed sharing our time together.

As well as our holiday I also have spent time getting back into caving and I did my first “Big trip” some weeks ago. I met with my friends Mark and Andrew and we completed the “Round Trip” at Swildons hole in Priddy on the Mendip Hills. We followed a circular loop negotiating waterfalls, climbs, squeezes, ducks and free diving sump 1. It was hard work and I really noticed my weak abdominal muscles but it was also very rewarding.

Free diving sump one-Swildons Hole, Priddy,Somerset.

I also spent a day pursuing another interest of mine; flying birds of prey. I had been treated to the experience by my parents as a birthday present last year and had waited until the nicer weather before arranging it. We spent the day just outside of Gloucester with a well known Falconer Ben Long who allowed us to fly Barn Owls, Harris Hawks, Peregrine Falcons and Saker Falcons. It was a fantastic day.
I now plan to enjoy some fishing in the next few weeks.

The one thing I found with my holiday however was in the quiet moments when my mind wasn’t particularly occupied (usually when sunbathing!) PMP constantly crept into my thoughts. I guess this had been prompted a bit by a few people I talk to on the Christies forum informing us that they have sadly had re-occurrences of PMP. Some of these people have barely done a year since their MOAS. They and their families must be devastated. I’m realistic, I know I too may be faced with this at some point but we all live in hope that we just might be one of the lucky few who seem to have been cured and have now done several years without re-occurrence.

It shows how the busy lifestyle we lead keeps the mind occupied and muffles the PMP thoughts. But in those odd quiet times it re-surfaces showing that it’s never far away, just quietly lurking in the back ground.

Training update for the Bristol ½ Marathon Fundraiser.

Things have been going well until quite recently when an old Achilles tendon injury re-surfaced. I had been regularly running 8-9 miles and was doing well and on target with my training plan. However the increased distance coupled with some worn out running shoes has aggravated the problem and I’m currently resting it! I plan to get some new training shoes this weekend and hope this will help solve the issue; it’s worked in the past.
Fundraising has started in earnest and we are now up to £295. We plan to start doing some Car Boot sales in the next few weeks now that the good weather is here so this should hopefully boots the sponsorship further.

MOAS + 15 Months.....

2011-04-27T05:40:00.000-07:00

How time flies. On May 2nd it will be 15 month since my MOAS and I thought it was about time that I did another update.
I now feel better than I have done in a long time. This may be down to my improving fitness levels but I’m sure is also down to my body continuing to heal. I remember speaking to Sue Alves (the specialist nurse) on the day I was discharged and she told me then it would take up to a year to recover fully from the operation and I can say that now, looking back its true.

Physically my recovery continues to go well. The scars are fading and I’m less conscious of them now when changing in front of people. The real test will be sitting around the pool on holiday! I do still suffer with aches and pains occasionally and these are particularly noticeable after exercise.

The only thing that I do notice from time to time is that I still have some tenderness around my right pectoral muscle. Its one particular area and I think is directly related to some problems I had with a chest drain immediately after the MOAS. I remember not long after coming around from the operation suffering some severe pain in my chest due to the drain being in too far. This was quite surprising due to the fact that I was on Ketamine, Morphine, intravenous paracetamol and had an epidural at the time! This was the only discomfort I felt throughout the entire ordeal and was very quickly rectified by the ICT nurse who pulled it out slightly and sorted it out. Nevertheless it still feels tender and I’ll have to raise it with my GP next time I’m there.

I also feel that a weak area for me is my lower back and abdomen and this is something I’m hoping to rectify at the gym.

My lung capacity has returned to normal now and I think is largely down to the fact that I’m back running three times a week. I re-took the Spirometer test last week and can now max the thing out every time (5000ml). This is in line with my pre MOAS readings and it’s hard to believe that immediately after the operation I could only manage 1000ml. The work I’m doing in the gym will also help improve this.
Internally things seem to have settled too and my bowels seem to have settled right down and are back to normal. Food portions have not increased and to be honest I don’t think they ever will.

Mentally the recovery continues. This is still probably the hardest area of the recovery for both Tracey and I to overcome. The images are still very vivid in both of our minds and can sometimes easily creep up and consume you for a brief moment. But, I have to say that personally these are becoming less frequent and that only recently I realised that a whole weekend had passed and I’d not thought of PMP in any way. Usually I check the forum, check the blog and any mails on a daily basis but I’d been away from a PC the whole weekend!

Training for Bristol ½ Marathon.

For this year’s main fundraiser event I have entered the Bristol half marathon. Training is going well and I am now running three times a week. I manage 4-5 miles on a lunch hour on a Tuesday and Thursday and then a long run on a Sunday. The long run I am now managing around 8 miles and have been running the Bristol to Bath cycle path. This works out really well as Chloe is able to cycle along beside me and enjoys the ride, chatting along the way. It’s great! Quality time and excercise at the same time. Who says men cant multi task?
As hinted at above I’m now starting to supplement this with some light weight training. This should help stabilise my core muscle groups and give me a good solid platform to run off of as well as help build strength and improve lung capacity.

Tomorrow’s lunchtime run is being cancelled this week though as I have arranged to go caving straight from work. The plan is to go to Swildons Hole and take some film footage free diving sump one. It’s a fairly strenuous trip in itself and will be a good workout. Watch out for the trip report and film footage in the caving blog.......!

A simple case of Travel insurance........or is it?

2011-04-12T01:34:00.000-07:00

So now that I have had the first annual scan and got the all clear it was time to get that long awaited holiday for the family organized. We were lucky enough to be able to arrange two weeks at a relations apartment in Majorca. In fact as soon as we heard that the two weeks we wanted were available the flights had been booked within ten minutes of us putting the phone down!

That was the easy bit.

I knew getting travel insurance for me that would cover PMP would be difficult but this was the first time that I had actually needed it. So it was a good opportunity to see just how hard it was....

So firstly I targeted the big names-

Direct Line- Would not offer cover.

AVIVA- Would not offer cover.

Churchill-Would not offer cover.

LV- Would not offer cover.

Swinton-Would not offer cover.

Surprisingly I found that More Than would offer cover but it was terribly expensive. £269 for two week’s cover for me and then I would have to cover the family separately (about £39).

I then tried MIA who I had previously been recommended and who specialize in offering cover for people with serious medical conditions. £51.50! I could not believe the difference!

All I had to do to get cover was to get my GP to make a note on his computer system to say that I was fit to travel on the dates of the holiday. The earliest I could arrange the cover was 60 days before hand but that was it.

Needless to say MIA will be getting my money.

The frustrating thing is that the chances of anything happening that is PMP related is absolutely minimal. PMP is such a slow growing cancer that it would take a long time for it to cause a problem. It’s so frustrating.

However, I have it easy compared to those people who have had some kind of re-occurrence. I know of at least two people who currently cannot get any insurance cover, even from MIA as they have had some kind of PMP re-occurrence. Both are on a watch and wait with their specialist centre and perfectly able to take holidays but can’t get insured. Dilemma, do you go on holiday un-insured or not? If something were to happen the UK is only a 24hr flight away. Fact is, with what these fellow PMP sufferer’s have been through and with the uncertainty that they face at the moment both they and their families probably need that holiday more than any one.......

Fundraising Again.....!

2011-03-24T06:55:00.000-07:00

Once again we are trying to raise as much awareness of Pseudomyxoma Peritonei (PMP) as possible and also raise as much cash as possible for the Basingstoke and North Hampshire Hospitals Pseudomyxoma and colorectal cancer trust fund.
It’s already been cited that the original number quoted of one person in every million being diagnosed with PMP per annum was probably wrong and that it is now more like two or three. This has only been brought about due to raised awareness of this rare disease within the medical profession and therefore more patients being referred to specialist centre’s like Basingstoke for treatment.

Therefore as a PMP survivor I feel it my duty to try and do my bit to raise further awareness of this devastating disease to anyone I can. The more people that are aware of it, the more the word spreads and hopefully more people correctly diagnosed and treated.

By raising cash to help support the Hospitals Pseudomyxoma and colorectal cancer trust fund we can also help fund improvements to the already outstanding specialist ward C2 at the hospital, help buy vital equipment and most importantly help fund the important research being done with Southampton University to try and find a cure.
Last year our Snowdon challenge raise a magnificent £5,200 which has been used to help fund the research and to also buy equipment for a physiotherapy room for recovering patients.

This year we have a number of events planned throughout the year and need as much support as possible to raise as much cash as we can. Let’s see if we can beat last year’s total?

So far we have planned to hold car boot sales where all the proceeds will go directly to the Pseudomyxoma and colorectal cancer trust fund. This is something the girls are looking forward to getting involved in.
I have also committed to run the Bristol Half Marathon on September 11th 2011 to raise funds and awareness of PMP. As many of you know I’m quite a keen runner already but have only been doing short runs. My first (and the last) half marathon was Stroud Half Marathon some 5 years or so ago so it’s going to be quite a challenge.
I’m pleased to say that Steve Treweeks (Bumper for those of you from the Christies forum) will be joining me for the run.
So needless to say I have to pull my finger out now and start pushing myself further.

To help with the fundraising I have once again opened a “Just Giving” page and will be adding a link shortly.

People being diagnosed with this rare cancer are on the increase. We need your help to raise awareness, raise funds and try to find a cure......
Please support us, dig deep and try to help us beat last year’s total.

Thank you

Dave

Wednesday 23rd February- 1st Annual Scan Results.

2011-02-24T04:07:00.000-08:00

The last week or so has been agonising for us all. Waiting for the phone call to come or the letter to arrive constantly played on our minds.

I had been lucky and work was extremely busy with some major projects underway that meant my mind was occupied and the days flew by. The problem was that when I got home and relaxed the mind started churning things over and the “what if’s” thought about. This coupled with the tiredness from a busy days work and not the best night’s sleep meant that as the week progressed the worry and stress levels grew.
Tracey also worried. And like me it became apparent that the waiting was taking its toll. She had a few tearful moments and it was almost like re-living the initial diagnosis all over again.

Things came to a head today. I had been out for my first lunchtime run in a week, it had been hard and I’d really struggled. I didn’t feel on top of the world and the stress was getting me down. On top of that I worried about Tracey and how she was coping and there were signs that the girls were anxious too.

I was showering after the run and had a moment where I felt I was struggling to control things.
“This is stupid” I thought to myself. The only way I was going to put us all out of our misery was to call the hospital.

So dried and dressed I headed back to my desk and picked up the phone.
I rang the specialist nurse and left a message.

Within about half an hour my mobile rang and it was them. The moment of truth had arrived. Nervously I picked up the phone. It was Vicky.

Fantastic news! The scan results were clear and “There was no evidence of a re-occurrence” I was overwhelmed.
“ You’d better ring your wife!” She told me. It was the first call I made.

I also enquired after Lauren and was told that she was well and up and about and making good progress. More good news.

Tracey met me on the doorstep when I got home and we hugged and shed a few tears. Cancer free for another year.......

I tucked Chloe & Jess in last night and both were beaming and obviously happy with the news.
Chloe looked up from under her duvet and said..
“Three good things have happened today”
“Whats that?” I replied.
“It’s Aunty Lisa’s birthday and we had chocolate cake, Emily is coming to play on Saturday and your scan results are clear”
I gave her a big hug close to tears.......

A cancer free year ahead and a huge weight lifted from the entire family.........

Feb 14th 2010-First Annual Scan.

2011-02-16T05:22:00.000-08:00

So it was that we found ourselves on the now familiar road from Bristol to Basingstoke. My appointment was at 10:45am so we had an early start. I had not been allowed to eat or drink for four hours before the appointment and made a special effort to get up early enough to allow me to have a light breakfast as I can’t start the day without food!
Traffic was not too bad but we drove into the sun all the way which was low in the sky and reflected off the wet tarmac.

We arrived at the hospital an hour early. Tracey grabbed a coffee from Costa and we headed for the X-ray department and the CT scanner. The nurse advised us that whilst we had arrived early they were busy and would not be able to see me before the allocated time. I also had to have some bloods taken so we decided to go and get this done first.

The Pathology department was busy and we waited for an hour before I was seen. The nurse who took my blood advised that the week before they had closed the department as there had been a two and a half hour waiting time and patients were still arriving!

We headed back to the CT scanner and they started me on my “drink”. Basically it’s a liquid they give you that you have to drink over a 45minute period prior to the scan to clearly define the bowl when you are scanned.
Time passed fairly quickly and as we watched the comings and goings of the department. I was soon called and had to strip off and change into a gown. From here I was lead into the medical area and a cannula was inserted into my right arm at the inner elbow. I was then lead into the new scanner which was opened in October 2010. I made myself comfortable on the bed and was moved through the scanner and emerged from the other side. The nurses then connected the cannula to the scanner. A liquid would be pumped into the cannula when the scanning process started. It gives you a strange warm feeling that starts in your ear drums, you can taste in your mouth and makes you feel like you have wet yourself! It’s not unpleasant just very strange and I guess dilates the blood vessels to ensure a good image is achieved.
The nurses then left the room and proceeded to talk to me via the intercom. Initially you are passed through the scanner once without the injection to line up the image and then the scan starts proper. The now familiar instructions to “breathe in” as you pass through the scanner sounding over the intercom. The new scanner has a monitor on it that allows you to see the image as you lie there. I’m always fascinated by this sort of thing and if I’m honest was watching it all the time to see if there was anything out of the ordinary on there, not that I would know what I’m looking for!
And that was it. All done in the space of around 25 minutes. I made my way back outside where the cannula was removed and got changed back into my clothes. All done.

Tracey and I then headed for the canteen and ate dinner. I was starving and munched away enthusiastically on my tuna mayo rolls! We decided at this point that we would head up to ward C2 just to say hello to the team who looked after me and to see if we could stop in and see Lauren (a lady I had been talking to on the Christies forum) to wish her luck as she was having her MOAS the following day.

When we arrived on the ward we bumped straight into Sue Alves the specialist nurse and had a lovely chat with her. She told us that some of the money we had raised with the Snowdon walk had been spent on research into Pseudomyxoma which is currently being done with Southampton University and that they are also opening a physio room for patients and will use some money to buy equipment for that. Sue also told us that the incidents of PMP are now on the increase and it’s more like 2 people in every million per annum that will contract the disease. The belief is that the one in a million number was probably wrong in the first place and that only through raising awareness of the condition throughout the medical profession as lead to more correct diagnosis and patients being referred. All the more reason to continue to fundraise to try and help come up with a cure!

We then made our way onto the ward and said hello to the team who cared for me whilst I was there. There were a number of familiar faces and a few new ones too. I also met Vicky Stone who is also a specialist nurse and works alongside Sue. I had talked to her on a number of occasions over the phone but we had never met and it was great to finally put a face to a name.

Next we headed to see Lauren. We’d never met and had only communicated via the forum. We found her in room 4 and sat with her Mum. She was understandably nervous about what was to come but otherwise in good spirits and seemed pretty focussed. We did our best to answer any questions that she had and hopefully set her mind at rest with a few worries that she had. We talked for about 15-20 minutes and we wished her all the best. I hope that in some way my visit might of helped her in the same way that talking with Margaret prior to my operation helped me. Vicky seemed to think I was a good advert for her as I look so well a year down the line.
Time was pushing on and we still had the long drive home to contend with. We were not going to make it home in time for the girls for School so mum came over and waited for them to arrive home at our house.

Later that evening we were both tired and the stress of the day finally caught up with Tracey. The year anniversary had thrown up all the old memories and the images still as vivid as ever in your mind.I'm sure it's really hard on her going back and seeing it all again.She had a few tears.... Now the waiting game. The PMP Albatross weighs heavy around our necks at the moment. Sue had said that she would try and get my results to me by the end of the week, let’s hope so the waiting in no man’s land is not easy for any of us.

I settled into bed and thought of Lauren. I remembered my final evening before the operation and how I felt and the thoughts that ran through my mind......

The following morning we got up and at 07:15 Tracey said to me “She’ll be heading for theatre now”. We’d both been thinking the same thing. I clock watched all day yesterday and thought of Lauren and her family. On the day of my operation Tracey and Mum didn’t get to see me in ICU until 23:30 some 16 and half hours after we had said our goodbyes. For me this is where the struggle really began, ICU was tough....

2nd Feb 2011-MOAS +1 year.

2011-02-02T05:39:00.000-08:00

So here it is, the one year anniversary of the MOAS. Where did that year go? It’s funny but it has stirred up a whole load of emotions that I thought I had buried.....just goes to show that it still lurks just below the surface whilst I happily go about my daily do, never far away.
As soon as I woke this morning it was on my mind “today was the day this time last year....” . I think that the fact that my first annual scan is also coming up has added to the moment as whilst I’m not actively worrying about it as there is little I can do about the outcome one way or another, again subconsciously it’s there, just below the surface.
On a positive note my recovery (whilst still ongoing) is going well, but a year down the line I’m still not quite up to full speed. I am running twice a week now and looking to step it up to three times a week with a long run on a Sunday within the next two weeks. The runs have become harder, longer and faster and I have a good group around me now who help me keep motivated. I have pre-registered for the Bristol half marathon in September and hope to run it with Steve Treweeks (Bumper from the Christies forum) and other friends and family who regularly run it. I need now to get some serious training in and plan also to do the Frenchay 10k in April.
I still get aches and pains particularly around the site of where the stoma once was and again put it down to the fact that I’m starting to push my body physically and re-building the core muscles. Again hopefully the CT scan on the 14th will confirm all is going well with the healing in that area. To compliment this I have also started working out again. Initially with resistance bands and then will move onto light free weights. This should then give me a good strong platform to run off again but must be done carefully to prevent things like hernia’s occurring.
My bowl has settled nicely now and it’s only in the last month that I can really say that I’m probably back to a point near normality. I have to still be careful about what and how much I eat but I think that this will be the way of things for me from now on.
In recent weeks I have also had a real push on trying to eat as healthily as I can. It’s always been a thing that I have tried to do with things like ensuring that I have my five a day with plenty of wholegrain thrown into the mix. I also drink green tea a couple of times a day. This should also help me with my training and building a stronger, healthier body again.
I’m really looking forward to this summer. We are trying to book a holiday somewhere at the moment and it will be great to spend some time with the family in the sun and enjoy being together as a unit and planning fun things to do together.
This last year would have been so much harder if I had not had the full support of so many beautiful people around me to help me get through it. My darling Tracey who has been a rock throughout all these difficult times, my beautiful daughters Jessica & Chloe, Mum and Dad, Joyce, Stephen & Lisa, Tina & Paul, Scott, Jon, Andy & Mark, Mum & Dad Bates, Dave & Carol, Steve & Anne, Derek and “H”, Steve Treweeks ,all the people from work and of course the Christies forum. And most importantly to the medical team at Basingstoke and the District nurses who got me through it all. Thank you all for all your help and support getting me through this last year you made it so much easier for me. So I raise a glass to you all and here’s to a healthy future......!

A Letter Arrives..........

2011-01-18T05:06:00.000-08:00

I had my letter arrive this weekend for an appointment at Basingstoke for my first annual CT scan. The scan is on the 14th February at 10:45am.......Happy Valentine’s Day!

I rang the hospital yesterday and spoke with Sue Alves to confirm my attendance who advised that as usual I can’t eat anything for four hours before the scan and that on arrival at the CT scanner they will issue me with a “cocktail” to sip over the next hour or so to ensure that the images are good quality. Whilst sipping my “cocktail” I will also need to head down to pathology to have a blood test for Tumour Markers all pretty standard and as I have done before.

The only difference this time is that new guidelines have been issued regarding CT scans and that I now have to book an eGFR blood test before having the scan with my GP. EGFR stands for Estimated Glomoruler Filtration Rate and basically measures how well the kidneys are functioning and removing creatinine from the blood. From this test you are given a score based on the results of the test combines with your age, sex and race to calculate your eGFR. A normal eGFR is a score or 60 or more, any lower and it may suggest kidney disease. However the eGFR test apparently is not suitable for under 18’s, pregnant women or people of a very muscular build.

At the moment I feel really well and as previously reported am back running regularly and caving as often as I can. In fact I have now added a link to my new caving blog listing trip details and showing photo’s and film footage from within the caves for those that are interested!

I’m not too worried by the up and coming CT scan....what will be will be and there is no use wasting time or energy worrying about what might happen. I do feel that this first CT scan is important though as it will tell us how well the MOAS really went and how well my body has healed. The feedback from the surgeons was very positive and they were confident that all the tumour had been removed.....I guess I’ll find out for sure in a few weeks time.

Christmas was good and we had a great time with the family, far different from the year before. The snow that had fallen a week or so before was still hanging around and meant that for Tracey, Jessica, Chloe and me we saw our first ever white Christmas even if it didn’t snow on the day.

New Years was spent at the local rugby club and a good night was had by all. Just after midnight we crept outside to see the usual fireworks and this year’s craze seemed to be Chinese lanterns as masses of them took to the air.

The snow has all now long since melted and we are enjoying a spell of milder weather. The bulbs are pushing through in the garden and buds already starting to appear on some of the plants hinting that spring is just around the corner..........ahhhhh those warm sunny days, I can’t wait!

Christmas Eve 2010

2010-12-24T01:06:00.001-08:00

24th Dec 2010

I just wanted to take a moment to wish everyone a very merry Christmas and a Happy New Year!
2010 has been an eventful year to say the least and I won’t be sorry to see the back of it and welcome 2011. However, that said if I hadn’t been through what I have been through then I would have missed many good things that have come out of a bad situation.
I have been lucky enough to meet so many wonderful people along the journey both face to face but also via the web. People who are battling various forms of Cancer and who are so brave and inspiring offering support to all those around them in the same predicament. And people caring for loved ones who are ill and day after day look after them with so much care and love and often under immense pressure and with less recognition than they deserve.
I remember clearly this time last year being full of so much doubt as to what the future might hold, so much uncertainty as to what life would be like post MOAS. Yet here I am a year down the line having recovered so well and having achieved so much. Back to living a normal lifestyle, running, climbing and caving again.
My journey has really shown me the importance of making the most of the time you have with family and friends and savouring them. Stop and recognise those magic moments for what they are. I recently did this when out enjoying the snow with Tracey and the children. We had found a good hill not too far from the house and were having race’s on our sledges in the snow. Tracey sat on the back with me and the girls sharing the other sledge. The air full of screams and laughter as we hurtled down the hill together. We all collapsed in a heap at the bottom, the thrill of the ride was fantastic. And we shared those moments together. Priceless.
So to all of you who might be reading this full of dread as to what’s around the corner and what the future might hold. Be encouraged by what I have achieved, hopefully you will too. We are so in debt to the experts at the hospitals all around the world who mend us when we are broken and do such a great job. I can’t thank the team at Basingstoke and North Hampshire hospital enough for all that they have done for me.
Last night I was given the best Christmas present. I was handed a cheque for another £500 made out to the hospital as a donation to our Snowdon walk we did back in August. This now takes the total raised to £5262 and means we have smashed the £5k target we set ourselves. Fantastic news!
So to you all, Have a very Merry Christmas and a Happy and healthy 2011!

Dave

The Ten Month Anniversary of the MOAS

2010-12-11T12:45:00.000-08:00

The 2nd December was my ten month anniversary. Ten whole months have passed since the MOAS already....where did that time go?
To think that in that short space of time I have also been lucky enough to walk the Snowdon Horseshoe, start caving again and return to running. I have been lucky.
Regarding my on-going recovery physically I’m doing really well. My weight is holding steady and I’m eating pretty much what I want. I still can’t eat big volumes and have accepted that is the way things will be from now on. If we go out for a meal then I can’t manage a starter or dessert and have to make do with just a main course so I make sure I have something really good to make up for it!
The scars are healing well and I have no pain or discomfort at all even when exercising and this was encouraging when I did my first caving trip a few weeks ago. I also plucked up the courage this week to get my scars out in public for the first time and go for a swim at the local pool. It was all fine; I don’t even think anyone noticed! Life really is returning to normal again.
I do still suffer with the mental scars though. You bury them for a while and don’t think about things for a while and then something triggers in your mind and the images all come flooding back. A week or two ago I found myself led in bed unable to sleep and running through my earliest recollections after the op and wondering if it was real or just another hallucination? I remember either Mr Cecil or Mr Moran stood at my bedside to my left. To my right a nurse busied themselves, I was aware of their presence but couldn’t tell you who it was or what they were doing. I could barely focus and only recognised the consultant by their voice as I couldn’t see properly. I remember them saying “David.....the operation went well and you are in ICU. I’m off to talk to your family now.....” I couldn’t respond as I was intubated (on a ventilator) and to be honest was completely out of it. I remember looking at the ceiling tiles in the room and they seem to come in and out of focus and swirl around. I tried to stay awake so I could see Tracey and Mum but don’t remember much after that.
I was completely out of it but remember the images as clearly in my mind today as if they only happened yesterday....I don’t think they will ever go away.
Then this week, after not thinking about things for a while it came flooding back with a vengeance. It sounds daft but there was a soap opera on the TV that showed a guy in ICU who died. The machine alarms were sounding and images of my worst hallucination came flooding back to me. It really shook me up and I don’t mind admitting it brought a few tears. It unsettled me for a while after. I still really struggle with this particular hallucination......I know that its exactly what it was but at the time it was so real that part of me still questions whether it really did happen or not? I guess it’s all part of my mind trying to process things.
Christmas is coming and we are busying ourselves with preparations for the festive season. New Years will be strange as last year with the MOAS looming it was all a bit flat to say the least. This year my first annual CT scan will be looming and I guess it’ll be at the back of all our minds. What will 2011 bring?
It’s no use worrying about it though. It’s a waste of time and energy. What will be, will be and I have to give thanks that right now at this moment in time I fell fit and well. Today I have enjoyed a great day with my girls and with a bit of luck there will be many, many more......

Back Underground!

2010-11-23T05:37:00.001-08:00

On Friday 19th November I did my first caving trip since the MOAS. I’d been holding back for a while, making sure that I felt well enough and fit enough to deal with the tough environment experienced in caving. It’s a sport where you use every muscle in your body with a particular focus on upper body strength. An area of my body that has undergone a huge amount of trauma in the last year.
We kept it easy and did an easy trip into Swildons Hole in Priddy on the Mendip Hills. Luckily enough we also had two novices with us who had never been caving before so all the more reason to take things easy. The plan was to take them along the “Long dry way” , down the “water rift” to the old “Forty” and then on to the “Twenty”; a twenty foot deep waterfall where the stream plunges over the edge and a caving ladder and life line is required to get down it. At this point we would see how we were feeling and either go further or turn around.
We headed down to Mendip straight from work and met at the Wessex cave club cottage at 18:30. Here we got changed and then headed for the cave. The entrance is quite dramatic where you lower yourself straight into the stream way via a manhole! Just after that there is a boulder ruckle to negotiate all of which had moved since my last visit a year ago so it was interesting to see how things had changed.
As planned we headed along the narrow crawls of the pretty long dry way. I stopped to take some movie footage only for the camera to beep at me to tell me the memory card was full so not much to show there I’m afraid. From here we headed deeper into the cave and the passage steadily grew larger. We met the stream again at the water chamber and headed along the water rift. Soon we were at the first real waterfall, a tricky 8ft climb. Again the passage grows wider and taller and as you head deeper you can hear the rumble of the Twenty growing ever closer.
We got to the top of the waterfall and stopped as planned. Mandy and Alex were doing well and felt fit enough to go on a bit further. I too felt surprisingly good with no aches or pains at all. So we rigged the pitch and gradually made our way down. First me, then Mandy, Alex, Jon, Andy and then finally Mark.
We then headed on deeper into the cave. Again the passage grows quite lofty with stalagmites, stalactites and curtains adorning the cave. We all successfully negotiated the double pots and then down the deep rift below Barnes loop; tight and tricky! We followed the stream way a bit further and then headed up onto the once beautiful Tratmans Temple where we decided was the turnaround point and stopped for a rest.

We made our way out steadily taking a detour up into the fantastic Barnes Loop to show the newbie’s the beautiful formations. Steadily we climbed our way out, Jon providing entertainment at the double Pots by falling in the pool and Mandy on the ladder by showing us how not to do it! Rather than go out the same way we came in we headed out via the wet way and it was interesting to note how the change at the entrance had diverted the stream lower down the cave.
We exited to a cool November evening, time was cracking on and we needed to be quick if we wanted to get a pint and a chilli in the Hunters Lodge Inn.
Showered and in dry clothes we soon found ourselves sat in the warm and busy pub tucking into a well earned pint and food.
I personally was really pleased with how things had gone. It was my first trip since the MOAS and I was a little nervous as to how well I’d cope. Things couldn’t have gone better. I felt fit and well and ready to make a return to caving properly. On the way home in the car I plotted my future progression back to the tougher, longer trips that we were used to and the technical aspects of SRT (Single Rope Techniques). It’s great to be back!

A Huge Thank You!

2010-10-30T12:53:00.000-07:00

Friday 29th October.

Today we took the bulk of the fundraising money from the Snowdon Horseshoe charity walk to Basingstoke to present to the team who looked after me whilst I was undergoing my treatment.
We had an uneventful drive up from Bristol and arrived early enough to sneak in to the restaurant for a coffee and a pain au chocolate! We made our way to C floor and met Francis and Brendan Moran in their office as agreed. A short time later a photographer from the press office arrived with her camera and we made our way to C2 ward to say hello to the staff and have some photo’s taken. For Jessica and Chloe it was the first time they had been onto the ward. They commented on how light and airy the ward is and how friendly the staff were. We said hello to the team and all remarked on how well I looked. Sally, the ward sister didn’t even recognize me until I spoke! Everyone was full of smiles and pleased to see us. They were also amazed by how much money we had raised. So far we have raised the bulk of our target of £5k. We were pleased to hand over £4,762 today and still have the Just Giving page open until November 21st and have at least another £500 pledged still to come. The ward was just as I remembered it and there was an empty bed space in the room I occupied whilst I stayed there.
I would like to take this opportunity to thank everyone who has supported us and donated money to a very worthy cause. I would also like to give a very special thank you to all the team members who took part and went to the effort of raising the money and take the time to gather it in after the event; it’s not an easy task! So a huge thank you to- Jon Mason, Stephen Mason, Mark Adams, Steve Read, Dave Bates, Andy Jackson and Rhys Wickham. And also to my daughters Jessica and Chloe,to Mum and Dad and to Mum Bates who also raised money on our behalf. I would also like to give a massive pat on the back to Steve "Bumper" Treweeks and Jake who raised a significant amount of money for The Christie Hospital where Steve had his MOAS in 2007.

The money raised for Basingstoke Hospital will help go towards fitting out a new family room on C2 ward. It will be somewhere where patients and family can meet on the ward in a friendly and relaxed environment and save patients having to leave the ward to see their loved ones at a time when they often feel unwell. It will also help with infection control and be somewhere carers can relax at a time when they are under a lot of stress whilst loved ones are in surgery.
Whilst talking with Brendan Moran he showed me his waiting list of patients who require treatment at the hospital and already the schedule extends into the New Year with others still to have dates confirmed. Sadly it appears that PMP is becoming more common, with Mr Moran saying that the frequency had increased to 2-3 people per million per year. All the more reason to keep supporting the team that work so hard to help people like me. The team here work long hours and it isn’t uncommon to see Brendan, Tom and the team on the ward at 07:00 and still there at 23:00 (that certainly was the case on the day of my surgery). I can’t thank them enough.
So with this in mind we will continue to support them as long as we can.......plans are already in place to do more fundraising in various ways next year including a main event in the summer. Let’s see if we can’t beat this year’s total? In the mean time I will open another Just Giving page to run in the background allowing anyone who wishes to donate.

Once again, thank you all so much for your support, people like me need you.

8 Month anniversary- tell tale signs?

2010-10-05T04:36:00.000-07:00

Saturday 2nd October was my 8 month anniversary. My recovery continues to go well and I am getting back to my normal routines. I have spent the last month working on the garden pond project and doing one day per weekend digging or the building work that goes with it. Saturday I finally got around to putting in the liner. One day is enough though as its been pretty tough work and I ache quite a bit afterwards.
I have been blighted by a couple of colds which has meant that my running hasn't progressed quite as quickly as I would have hoped. I'm still running around 3.5miles but struggling to do two runs a week at the moment which is pretty frustrating. Its also affected my plans to go caving in much the same way but I hope to get out towards the end of October. No point in rushing these things.
Other than that my general health is pretty good. The scarring is healing well and I don't really suffer with too many aches and pains. My bowel has gradually settled down and there are less visits to the toilet each day! I still find that I get tired and my stamina isn't where it was prior to the operation I get home from work each night and I'm pretty wiped out.
My weight continues to hold steady and over all I'm pleased with the way things are going. I have recently received my invite to go to the local GP and have my annual influenza vaccination but have yet to receive my appointment for my CT scan at Basingstoke.

I have been thinking allot recently about my history and whether there were any tell tale signs that things were not as they should have been? I have always suffered with my stomach in one way or another and wonder if it's been related?
My earliest memory of stomach related problems is when I spent a night or two in hospital at the age of around eight years or so. I had been suffering with stomach pain and was admitted with a "grumbling appendix". I spent a couple of days in the children's ward and gradually improved and they decided not to operate. I really wish that they had now as it would have saved me all this trouble!
Later into my teens I started to suffer with more problems. I would often wake in the night with terrible stomach cramps that would last for some time before I ended up in the bath room using the toilet and often being sick. This would last for a couple of hours and then would ease and I would end up sleeping for nearly 24hrs. The family doctor at the time diagnosed it as "abdominal Migraine". These episodes lasted for most of my adolescent life on and off but gradually got better and less frequent.
However I was always left with the problem that should I get excited or nervous it usually affected my stomach and I'd end up needing the toilet. My bowel seemed very sensitive to my mental state. Again I would suffer with cramps and would need to find a toilet.

Some years ago I visited a palmist. A friend of my father in laws but someone I had never met. He was a nice chap and seemed completely honest and didn't push for answers through loaded questions. He simply looked at your hands and told you about yourself. He didn't predict the future as he didn't believe in it but could advise you on medical treatments and ailments. I always remember that he told me to "be careful with my stomach and to stay away from spicy food" somehow he knew that I experienced problems in that area even though I had never told him about the problem. It was the first time we had met.

No so long before my appendix perforated I again had been suffering with some pain on the right hand side. The doctor at the time sent me for a scan of the gall bladder as he felt it might be gall stones and of course that came back clear. I hind sight, with this being so close to the appendix perforating I'm sure this was related in some way.

So were these early tell tale signs that all was not well....? I'm not sure really but it's worth making a note of. Perhaps others have suffered in a similar way?

Tuesday 14th September 2010

2010-09-14T05:04:00.000-07:00

So here it is 14th September, my 37th birthday and 1st post MOAS. I feel like it should feel more important bearing in mind what I have been through this last year but if I'm honest it just feels like any other day. Perhaps thats a product of my current well being and good health.
Physically I'm continueing to improve although still not quite up to full speed and if I'm honest I wonder if I'll ever fully recover the high level of fitness I had prior to the op. I'm back to running now and going twice a week. I have improved in terms of speed and am up to 8 minute miles but only over a short distance at the moment. The most I have run distance wise is about three and a half miles but this ia also quite a hilly route and is a good challenge. In the next two weeks if all continues to go well then I will step it up to the four mile mark and throw in some more hills to build my stregth. As I start to push a bit harder I get various aches and pains. These tend to be centred around my core muscle groups as these have taken such a hammering. I get a feeling of bruising underneath the rib cage on the right side, not sure what it is but the only time I had any discomfort after the MOAS was a chest drain on that side that was in too far and had to be pulled out a bit. Whether its related or not I dont know? I have also found my lower back muscles are weak. They have had a good work out though recently as I have been digging out a garden pond!
My weight is pretty constant now and I'm probably a stone and a half lighter than I was. I havent found any restrictions regarding food and can and do eat just about anything. I have tried to start to impliment a healthy regime again ensuring I get my 5 a day and eating plenty of wholegrain too. This will hopefully not only compliment my running and training but help to protect my immune system throughout the winter months. In terms of colds I do seem to be picking them up more regularly than before. I'm on my second now and supping a Lemsip as I type! This I'm sure must be down to the lack of a spleen and I continue to take my antibiotics daily.

I have my first annual CT scan looming. It's planned for some time in October and is on my mind more and more. It'll be a tough few weeks awaiting the results, thats for sure. I do find myself contemplating what the future might hold more and more lately. How long have I got? Will the PMP return and if so when? In my mind I have set targets. If I can get the Mortgage paid off then great,the family will be OK financially. If I see my girls get married then that will be brilliant! If I see my grandkids then that would be fantastic!! Beyond that I really am not sure.... Just recently I am aware of a number of fellow sufferers that have lost their battle with PMP and I think thats what has made me contemplate things too. The constant reminder that this thing does kill. Its a reality check and to a certain extent keeps you real. Make the most of now,make the most of today, enjoy those around you and celebrate life.

The Snowdon Horseshoe Fundraiser

2010-08-31T00:54:00.001-07:00

In the week leading up to the walk the final arrangements had been made, kit sorted out, car sharing arranged and the final team put together.
The final team consisted of-
Walking for Basingstoke and North Hampshire Hospital-
David Mason
Stephen Mason
Jon Mason
Mark Adams
Andy Jackson
Dave Bates
Steve Read
Rhys Wickham

Walking for The Christie(Manchester)-
Steve Treweeks
Jake Treweeks (13yrs)

Friday 20th August.
Jon, Mark, Stephen and I all travelled up together. Luckily Mark had the use of a people carrier for the weekend that meant there was far more space for the masses of kit that we all took. The weather in Bristol was overcast but warm, the odd shower creeping through but otherwise OK. Traffic was slow and we ended up having to take a detour due to congestion as people made their way to the "V" festival. We stopped at one point to stretch our legs and have a wander around Sainsbury's to get some shopping for the weekend, lunch and of course a beer or two!
After a short break we soon hit the road again and gradually found ourself entering the rolling Snowdonia countryside. As we got closer to Snowdon the weather changed and we hit heavy rain. My heart sank.
The rain continued to pour as we made our way through Betsey Coed and then took the turning for the Llanberis Pass. The mountain stream at the side of the road was in spate and silver slivers of water tumbled down the steep mountainside to emerge at the bottom as rushing waterfalls. The walk was going to be a nightmare if the weather was like this.

Then, as we entered Llanberis the roads suddenly dried up and people were walking around in T-shirts. Apparently it had been dry there all day whilst only a mile up the Pass the rain poured. We found the campsite up a small turning off the main road. The lane rose steeply through fields occupied by other campers and we made our way to reception to book in. It was now around 17:00hrs and we had been on the road for 5hrs! We found the flattest ground we could and set up the tents and got ourselves comfy.

Steve T then rang to say that he and Jake were about half to three quarter's of an hour away so we decided to head down to the village for some dinner. By the time we sorted ourselves out and walked down the lane Steve and Jake were just coming up in the car so we stopped for a quick chat and agreed to meet them after dinner back at the campsite. We headed on down into the village and found Pete's Eat's. A well known walkers and climbers cafe that served up good sized portions of grub at cheap rates. And luckily for us served beer!
Whilst we were sat eating Dave B then rang to say that he and Steve R were only about half an hour away. We arranged to meet them at the campsite and help put up the tents and get a brew on and a fire lit. Andy and Rhys were joining us in the morning.
We finished our meals and took a steady walk back to the campsite to find Steve and Dave already there and tent up! Steve and Jake were also now all set up and after a trip to the Chinese returned with their dinner. So we put on a brew and got the fire going. It was a mild night with clear sky's full of stars and the odd cloud skittering through on the brisk wind.
We sat and chatted, discussing the plans for the following morning opting to catch the 08:40 Sherpa bus up to Pen Y Pass where we would meet Andy and Rhys.The rest of the night was spent with the usual banter and ribbing and everyone straining their necks to look at shooting stars racing across the night sky. It was a perfect start, everyone had arrived without issue and was now ready for the long day ahead. The last of us climbed into our sleeping bags about midnight after the last of the logs on the fire had burned away and conscious of the 06:30 start to get breakfast on in time to meet the Sherpa bus.

Saturday 21st August-The day of the walk!

I awoke at 06:00 after a fitful nights sleep. There was a fairly noisy group that had arrived at around 02:30 and the wind had got up a bit at times. I got dresses and emerged out of my tent to find sheep grazing in the field. The sun was not quite up and over the mountains as yet although it was quite light. I trekked off to the toilets to have a wash and clean my teeth. When I got back Mark was also awake and there was rustling noises coming from the other firmly zipped up tents! I quickly got a brew on and we started organizing breakfast.
The sun broke over the mountain opposite to reveal clear skies and a warm day as the bacon and sausages sizzled on the stoves. We started with cereals and tea and then tucked into bacon and sausage sandwiches ensuring we cooked enough for dinner on the mountain too.

Time was ticking and I soon found myself "faffing" around trying to sort my kit out for the day and pack up the breakfast stuff in a most disorganised fashion! Rhys rang to say that they were about half an hour away after a very early start to get to us and should be on time to meet us at 09:00 as arranged. Another sigh of relief! We headed down the lane to the village all kitted up about 08:20. Andy then rang to advise that they had parked further down the pass as Pen Y pass was full.This worked out perfectly as they actually got on the same bus as us as it made its way slowly up the steep and winding pass to the drop off point. The team was complete. On the way up I handed out a couple of small posters I had done advertising our charity walk that could easily be tucked underneath the elastic on the back of the ruck sacks, they looked great and even prompted some people to hand over some cash on the way around the walk so well worth the effort.
We arrived at Pen Y Pass and even here the difference in temperature was noticeable even with the sun shining. We stopped to use the loo's and take some group photo's. A stop to look at the weather forecast and a quick chat with the mountain rangers office soon revealed that Crib Gogh was getting battered with 50mph winds. We were advised not to do it especially as it was our first time up there and the ridge is pretty exposed in places. I was a little disappointed but that was soon dispelled when we got going on the Pyg Track.
The path starts by winding its way through the mountains directly behind the car park and is immediately quite rocky with some large steps.The start of the impressive Crib Goch(923m) looms to the right. The track then bears slightly to the left and you soon find yourself in the bowl of the Snowdon Horseshoe with the waters of Llyn Llydaw beneath you, Y-Lliwedd (898m)dominates the skyline opposite who's steep cliffs plunge down to the lakeside and Snowdon (1085m) itself sits menacingly round to your right its summit draped in cloud.

The track is lined with rocks and climbs steadily towards Snowdon. It was pretty busy already with people making their way both up and back down the track. We immediately reached for our camera's and snapped away at the view's. The sun was shining with the occasional cloud moving through and not too hot. Perfect walking weather.
We walked for an hour and a half or so and then found a quiet grassy ledge to stop for a brew and a bite to eat. It was off the main path and commanded magnificent views of Y Lliwedd on the opposite side of the Horseshoe. Its steep craggy sides silhouetted against the sky line.

We soon found ourselves on the path again, as we climbed higher over streams cascading down from the Crib Gogh summit the temperature dropped and we were soon entering the cloud base. Visibility reduced and the air took on a cold,damp feel. Further up the track we stopped to look at a post on the edge of the track that had coins pushed into it from its base to its top. Penny's, five and ten pence piece's, Euro's and all other manner of currency wedged into the wood.

The track wound higher and higher towards Snowdons summit and we soon found ourselves at the start of the "zig,zags" a winding steep section of the path that leads to the col between Crib Gogh and Snowdon itself. The top was in sight now but the path was very steep. Suddenly there was the whoosh of steam as the steam train made its way to the Snowdon summit cafe straining to push the passenger laden carriages,puffing its way up the mountain just out of sight. We stopped again for a brief rest and munched on Jelly Babies.
We made the final push to the top of the track and immediately felt the effects of the cold wind blowing across the ridge line. The track beared around to the left and climbed further. Finally and with great relief we soon found ourselves at the foot of the busy summit cairn,perched on the top of a 20ft high outcrop of rock. We made our way to the top and jostled for space around the cairn. Perched precariously on the top we posed for photo's proudly holding the posters I had made.

We didn't hang around long and soon made our way into the warmth of the crowded summit cafe. Here we stopped for 3/4hr or so for a break and a hot drink. We decided not to do lunch here and instead find a quiet spot further along the loop out of the cloud base where we could all sit in comfort. A quick look at the O/S map and compass pointed us in the direction of the next path.No one in the group had walked this section and it was completely new.
We took a right out of the door of the cafe and followed a steep path down for 100m or so before swinging left down a steep scree slope.Here the path became very steep and less defined. We picked our way down the steep slope through the mist and cloud,placing each foot carefully. Suddenly about half way down the cloud parted and we were treated to cracking views of the way ahead and the jagged ridge of Y Lliwedd. Everyone stopped and reached for their camera's. Next there was a yelp as Dave spotted his rucksack tumbling down the steep scree slope beneath us! "My bag!". The bag kept rolling getting closer and closer to the cliffs that dropped away below. Luckily the bag was undone and was dumping its contents as it rolled. This had the effect of slowing the bag down until it finally stopped just short of the drop off. Some very careful traversing on Dave and Steve's part soon retrieved the bag and its contents and they returned safely to the path much to my relief. From this point Dave was nick named "mountain man!".
We continued to pick our way carefully down the path, Dave hanging onto his bag tightly. Finally we reached the col between Snowdon and Y Lliwedd.Here we found a quiet corner and tucked into the sausage and bacon sandwiches and cups of tea from the flasks.

A nearby rock perched on others provided the perfect spot for yet more photo's. We looked on at Y Lliwedd ahead of us. The path peeled off the main route and disappeared between the rocks as it rose steeply up towards the pointed summit, steep cliffs falling hundreds of feet away to the left. This would test the nerve of those of us that suffer with vertigo!
We took the left hand fork in the path and started the steep climb up to the summit of Y Lliwedd. An easier path wound its way around to the less steep right hand side of the peak disappearing and then reappearing between the huge slabs of rock. The path snaked its way around the mountain and we soon found ourselves facing two options, an easier climb around to the right or a short exposed climb up a rock face on the left with the cliffs plunging away beneath us to the grey, cold waters far below us. It wasn't technically difficult but tested your nerves a bit as there was little room for error. It was exciting and challenging, this was what it was all about!

A short section of further climbing and we were soon on the summit ridge with fantastic views all around us. For the first time the cloud had parted from Snowdon's summit and we could see the tiny, ant like silhouettes of people on its summit. It was breathtaking. We picked our way along the ridge. Taking things carefully and avoiding the huge holes that appeared on our left from time to time. The path slowly began to descend from the final peak in the Horseshoe and made its way down towards the lake and that busy Miners path far below.
By this time some of the guys had gotten further ahead threatening a stop for a swim in Llyn Llydaw's icy waters! Dave, Steve, Jake and I had stopped for a breather at Jake's request as his bag was rubbing his back. I could see the guys were now at the lake side quite some way below us and there was definitely the glint of sunlight on flesh!"Are you guys really going for it?" I called over the radio.
"Sure are" Andy replied.
"Steve,Rhys and Jon and Stephen"
"Are they going swimming?" suddenly piped up Jake from the rock he was perched on.
"Yep" I replied.
And quicker than you'd believe Jake shouldered his pack and shot off down the path!
"Well I guess his back isn't that sore!" I joked to Steve.
We watched as he streaked his way down the mountain to meet with the others at the lake side.Suddenly the radio crackled again.
"Hello it's Jake"
"Hello Jake" I replied.
"Can you ask Dad if I can go swimming" he asked?
" I was waiting for this" replied Steve. "Yeah,OK!"
"Your Dad says yes" I relayed the message and he was soon stripping off to join the others in the water.
We arrived not long after to find Steve,Stephen,Jon and Rhys swimming in the water with other walkers spectating from the path with chins on their chests!

Jake however was paralysed with the cold at only knee deep.
"I'm getting out" he shivered.
"Oh no your not" called Jon " No man points for only going in knee deep" he laughed.
Jake gave in to the pier pressure and launched himself into the water!
We hung around for a bit whilst the guys got themselves out and dried before picking up the now well worn and busy miners path. The track was easy,the end in sight and we all chatted about the events of the day. Finally the Pen Y Pass car park came into view and there was the Sherpa bus sat waiting for us.Perfect timing!

We all crammed into the top deck of the bus and chatted and looked at some of the photo's on the camera's as we made our way back down the pass. Andy, Rhys and Mark got off at the stop for Andy's car and Mark showed them the way to the camp site. The rest of us got off the bus and made our way up the steep lane to our tents. Legs aching and weary but content in an excellent day out.
When we arrived at the camp Andy's tent was up and the stoves were soon fired up and kettles boiling. The beer was cracked open and we sat back and rested in the sun supping on a well earned beer. Gradually we headed off to the showers and got changed ready for the night ahead.
Steve T's family also arrived that afternoon and we met them back at the campsite. It was great to finally meet Tracey and the rest of the family.
Once all were ready we headed back down to Pete's Eats for dinner and a pint or two. We all crammed around a couple of tables and tucked in.
When finished we made our way back to the command grabbed a couple of bags of wood for the fire. It was soon burning well and we all sat around having a beer. Dave announced that he had a bottle of champagne for us to celebrate with and it was passed to me to do the honours. We had no glasses and had to pass the bottle around but it was great!

The night was more overcast and cooler, we were glad of the extra fire wood to keep us warm. Gradually the team dwindled as people made their way to their sleeping bags, Rhys curled up in front of the fire weary but warm! Around midnight we all decided to go to bed.

Sunday 22nd Aug

We arose to yet another nice day. Steadily we all got up and put the kettle on. We washed and had some breakfast and got dressed. The next task was to pack up camp. All the bags were packed and the tents folded and stashed away. The gear was crammed into the cars and finally everything was packed away and ready for the journey home.
First we headed to Pete's Eats for the final time to treat ourselves to a full English breakfast. The walk to the village was a painful affair for most of us as the aching muscles we called upon to work once again. On the way back Jon flatly refused to climb the steep hill back to the campsite instead asking Mark and I to pick him up at the bottom of the lane!
We said our goodbye's to Steve and his family and climbed back into the cars ready for the long journey home.
A couple of hours later I had a text from Steve commenting on what a great weekend it was and with a picture attached of Jake fast asleep in the car! I smiled to myself and wondered if he was dreaming of climbing mountains and swimming in the clear waters of a mountain lake. Part of me hoped that we had ignited a spark somewhere inside of him and given him a taste of the outdoors that he would carry with him in the future and not get stuck in the rut that other kids do with their Playstation's, X boxes and Nintendo DS's. We'd achieved a great weekends walk,had fun and raised a substantial amount of money for both Basingstoke and Manchester hospitals PMP fund. But hopefully also given Jake a great adventure with the boys!

You can do a Google Earth Flyby of the route we took by clicking here-

Snowdon Horseshoe

Starting to exercise again

2010-07-27T05:00:00.000-07:00

Over the last few weeks I have really started to feel well again. The tenderness from around the stoma reversal site has gone away and I'm really starting to feel strong again. So I have taken that as a sign that its probably ok to start doing some proper exercise.

Initially I started with just some light work on the exercise bike. Next I have started to add in some weight training although I'm using very light weights and doing lots of reps. I'm also using free weights, the idea being that this should also start to work my core muscle groups without hitting them hard with things like crunches or sit ups which I feel would be just too much at the moment.

Last weekend we did our first "proper" walk over tough terrain in preparation for the Snowdon Horseshoe fundraiser. We did about seven miles in awful conditions on Pen Y Fan and you can read the full and eventful account on my separate Snowdon Horseshoe fundraising Blog (the link is listed in the useful links section).

This weekend I vowed to tackle a tree stump in the back garden that needed digging out. I had been particularly wary about doing this as it would put the core muscles under quite a bit of pressure. So I vowed to start it and see how I got on. Typically the tree stump that "was from an old palm and only has a ball root that wouldn't take much digging out!" went down much deeper than I expected. In fact at the end of an afternoons digging I was now in a three foot deep hole and the root was still going! Luckily we plan to put a fishpond in its place so the soil I dig out was deposited around the garden and the pond project is now officially underway!
I have to say though that I thoroughly enjoyed doing it. I had no aches or pains and no discomfort whatsoever. In fact it gave me confidence and backed up the feeling I have had of being stronger and ready to get back to some sort of proper training regime.

So yesterday I went for my first "run" since the MOAS. The last time I ran was the last week in January and I did about 4 1/2 miles on a lunch hour. I remember it clearly as at the time I did wonder if I was ever going to be able to do it again.
It felt great to be finally pulling on the running gear again and I did smile to myself as I laced up my running shoes. I decided to take things easy though and had planned to run "The Rut" as I had previously nicknamed the route. It was called "The Rut" as its the easiest of all the routes we run on a lunch hour and lots of people would just do that run as it was so easy and didn't push them. I hated it and wouldn't run it, but that was then and it was with some irony that I found myself planning to do this route to get back into my running again! The route is a dead flat featureless three mile loop and not particularly inspiring but more than enough for me at the moment.
The weather was hot (24 deg) and humidity was high. I was also just getting over my first cold minus my spleen and was still a little bunged up but my theory was the run should help clear the muck off my chest. Jerry ran with me to make sure I didn't keel over along the way and we just took things easy. It felt good to be out pounding the streets again. It didn't take long for me to realise just how out of shape I am at the moment and my pace really started to slow and my breathing difficult but I pushed on. The area I really seemed to notice it was my lungs, I felt that I couldn't get a good lungful of air in. The heat, humidity and my cold couldn't of helped but it was clear that my lung capacity had shrunk. This will return with time and exercise though and I'm just going to have to be patient. I felt like the new boy starting all over again.
We pressed on and soon met the only small climbs over the motorway bridges that bring us back into sunny Avonmouth!I was determined to run these climbs as hills are usually my strength and I really enjoy them. However they were a real struggle today and I wouldn't let myself stop until I was at the top but stop I did and walked for a short way cussing myself at every step. I soon got going again and managed to maintain a slow pace all the way back in.
I warmed down a little frustrated with myself at such a poor performance compared to where I had been before the MOAS but Jerry reminded me at what I had been through and it made me feel a little better. It was good to get out though and I enjoyed every minute of it and cant wait to go again later this week.

The only side effects that I have felt a day later other than the obvious aching legs is that below my rib cage on both sides I feel bruised. This again could be down to the battering that my core muscles got over the last few months but also could be a side effect of the surgery itself.

I am determined to take things slowly though and not push myself. I dont want to pick up any injuries between now and the Snowdon walk as there is a lot riding on that now. In a way its a good thing as it will have the effect of holding me back a bit to begin with and just taking things easy. But at the moment the future looks good again in terms of getting back into the things I enjoy. Learning to run again will be a challenge but I'm a stone and a half lighter and that can only help! And once I get Snowdon out of the way I can plan my return to caving.......

How the children coped.....

2010-07-22T04:36:00.001-07:00

I have to say that I am proud of the way that my children coped with fact that I had cancer. Not only the fact that I was very ill and that worry that I may die but all the subsiquent disruption they had in their lives whilst both Tracey and I were away in Basingstoke. In the end they did very well and showed just how strong kids are, their school work didnt suffer and they didnt appear to have been too traumatized by what they had been through. So I wanted to share with you how we approached the whole subject in the hope it may help. I realize that every family is different and each will deal with things in their own way but hopefully we can provide just a few ideas that anyone in the same predicament can consider.

Breaking the news.....
This was probably the hardest thing to do as at this point we were still very traumatised ourselves and our knowledge of the condition and the treatment that I was to undergo was very small. Initially in the first few days we just told them that Dad wasnt well and tried to have our conversations when they were not in the room. Inevitably this lead to conversations having to be cut short and bits being overheard. It didnt take us long to realise that they were not stupid and needed to know the truth. I know my eldest (13) had a good idea what was going on already and had even discussed it with her school freinds. So we decided they needed to know the truth. We sat and told them everything we could and read some great books that we were given by MacMillan together. I will never forget sat reading "When Mum or Dad has Cancer by Ann Couldrick" to the children on the sofa. Jess under one arm Chloe under the other. It covered every eventuality and there were a lot of tears that night but at least they were prepared for every outcome. That I felt was important.

We then made sure that they knew what was going to happen when both Tracey and I went up to Basingstoke for my MOAS. We had arranged for my Aunt to come and stay at the house with the children. That way they would be in their usual surroundings,with their toys and freinds nearby and it would limit the dissruption they were already experiencing with both Mum and Dad not being there. We also gave them jobs to do whist we were away so they could help out in their own way. I have to say I think they had a great time in the end, getting involved with preparing meals, doing the cleaning and generally helping to run the house. And as you can imagine they were pretty spoilt along the way with visitors coming in and out and treating them!

We also made sure that we asked them if they had any questions about what was going to happen at regular intervals. Usually this was met with a "no" but it opened the way for them to be able to feel that they could approach us about anything and more often or not the questions would come when you least expected it, sat eating a meal together or watching TV. Completely unprompted and out of the blue but that was a good thing, just what we wanted. We also taught them that it was OK to cry if they felt upset and not to worry about upsetting mum or dad as holding these emotions in was a bad thing and they needed to be let out.

Whist Tracey and I were away we had planned to do a daily video call with them using Skype however we couldnt use the broadband at the hospital on the netbook and a Dongle wasnt fast enough. So we made sure we phoned them every night and kept in touch using e-mails. Initially I wasnt well enough to make the calls and Tracey kept them up to date with progress. However I remember very well the first time that I called them, the squeels of delight when they heard my voice even roused Ron in the bed opposite me!
They also made the trip to Basingstoke every weekend. Initially they just visited Tracey at the flat as I was not well enough and then later on I was able to meet them off of the ward in communal areas.

So to summarise, the lessons we learnt were-
1. Be honest, kids are not stupid, they know when things are not right. Tell them the truth (within reason) so they dont worry and feel that they cant talk to you.
2. Try to limit the dissruption as much as possible. Keep them in their normal routine.
3. Encourage them to ask questions and share your emotions together.
4. Dont be afraid to seek support and advice from people like MacMillan or Cancer reasearch.
5.Offer them all the love and support you can. Dont forget that they are there because you are so busy dealing with your own emotions.

We wouldnt have been able to get the children through this without all the help and support we recieved from our family and freinds. So a big thank you to Mum and Dad, Auntie Joyce, my brother Stephen and his wife Lisa, Auntie Tina and Uncle Paul and everyone else who helped out along the way.

Friday 2nd July-MOAS Five Month Anniversary.

2010-07-02T12:15:00.001-07:00

I went for a walk at lunch time today. I've been back to work three weeks and it had been a very busy morning. I'd got into work early to finish my board report, answered the numerous e-mails and telephone calls and done two meetings already. It was now 1 pm and I needed to get out and get some air and clear my head.
As I was walking it dawned on me that exactly five months ago to the day I was in the operating theatre. In fact, I'd been there for six hours already and had another six hours to go. I imagined the scene in the theatre.Today all around me people went about their daily business, whizzing around in their cars, hurrying here and rushing there, just as they would have on that day five months ago. Oblivious to what was happening to people like me up and down the country in the numerous hospitals and operating theatre's. We all take life for granted.

My recovery continues to go well. I was given the all clear by the nurse this week and no longer have to do the twice weekly visits to the surgery to have the stoma closure wound checked. Its healed up nicely.
I have also been given the all clear to start some light exercise. I have started using the exercise bike and intend to slowly increase the time on the bike and the resistance settings. I can also do some light weights to try and re build some of the muscle wastage that was lost whilst in hospital. I have also promised to take the girls swimming in the next couple of weeks. All good cardio and light impact.
I also have been doing plenty of walking in preparation for our fundraising walk up Snowdon and have a 10 mile walk in the Brecon Beacons planned for the 18th July. The fundraising is going very well and we hope to make a sizable donation to Basingstoke and Northampsire Hospital PMP fund.
I still get the odd aches and pains. The area around the stoma site can be tender especially when doing my shoes up. From time to time my lower back will ache and there are other odd niggles from but nothing I cant live with.
I have finally started putting some weight on too which can only be a good sign that the body is starting to recover.
Eating is now pretty much back to normal and my portion size's have increased (I guess that's why the weight is going on, coupled with my reduced exercise routine).
I still get a little more tired than I used to and again that's probably the recovery from the op and the lack of exercise.
Mentally I'm doing OK. There are odd days now when I don't think about the PMP but these are still few and far between. Last week I heard on the forum that one of my fellow PMP sufferers sadly lost his battle with the disease. He was about my age and had a wife and young family and had kept himself fit and healthy. The MOAS had not gone so well and there had been complications yet he battled on for months. The news shook me. I do hear this type of news on the forum occasionally but for some reason this one really got to me. Images of my hallucinations came flooding back to me as clear as when they happened.I felt down for a couple of days. Its so unfair that I could get through this relatively easily and this person should loose their battle.

Tonight I soaked in the bath, relaxing. I looked at my watch it was about 7pm. This time five months ago I was just coming out of theatre and being transferred to the intensive care unit.
I washed and went to get that strange blue fluff out of my belly button and stopped........oh yeah, I aint got one! I smiled to myself.....old habits die hard!

Who cares for our carers?

2010-06-13T09:53:00.000-07:00

Throughout all of this blog so far I have talked about me and my experiences. But now that I'm recovering well and there is less to report my mind has turned to other aspects of the effects of having cancer.
I have been very lucky throughout all that I have been through in the way that I have had a very strong support group around me. Tracey never left my bedside throughout (except when she had a bout of sickness and couldn't come),my parents who supported us throughout,my aunt who dropped everything and came to stay with the kids whilst we were in hospital, my friends who really showed how special they are when the chips were down and even my employer who also supported me throughout.
Very often when people visited us they would ask how I was and how I was doing but only a few would ask Tracey.
I can only imagine the immense pressure that she was under throughout this whole experience when most of the attention focused on me. From the point that we first found out I know she was devastated but we both adjusted with time and came to terms with what was happening. Always with a brave face she has been there with words of comfort when I was down.
On the day of the MOAS it must have been awful knowing that such major surgery was being carried out and that the outcome wasn't certain Tracey sat and waited patiently for the calls from the surgeon with updates on progress. Finally after 12hrs of surgery and a few more whist I was settled in ICU she was allowed in to see me. It must have been both a relief but also awful to see me in such a state. Tubes and pipes coming out of me everywhere and ranks of machinery keeping me alive. I understand the visit was about 23:30 and only brief. I can only imagine how she felt at the time.
I know from talking to her that through those first few days she watched the machines and monitors like a hawk. Every time I was turned over in bed my heart rate climbed and blood pressure rose this would worry her and she would not take her eyes off the machines until I was settled and they began to return to normal.
I'm not the best patient when I'm ill. I can become quite introvert and conversation is difficult often we just sat in silence but happy in each others company.I would also get frustrated when I became uncomfortable in bed and it seemed to take ages for the nurses to get help to turn me over. More often than not I complained to Tracey and asked her to do it but of course she couldn't do it, it needed trained staff to move all the drains and tubes. She must have felt helpless.
Throughout all of this she was also separated from our children which I knew also upset her. Stuck between looking after me and the children I know at times she felt torn even though we knew they were both in good hands.
When We finally got home of course it was relief and some of the pressure was lifted but new ones were added. Now there was no nurses around to help us and in the first few days it was difficult adjusting. Tracey struggled to sleep as she listened to my every movement worried that something may be wrong.
When I finally started taking walks it was Tracey at my side, holding my arm,holding my hand. Later on as I grew stronger and started walking on my own there was always a text asking if I was OK? Showing that whilst I was recovering well she still worried about me.
And now I'm back to work she still watches me like a hawk, looking for signs that I might be overdoing things....
But now that I have recovered well and we are returning back to normal I know that there is still one thing on her mind........the future. What does it hold for us? Will we have to go through it again?
The yearly scans will be difficult times.

I am so lucky that I have such a strong and loving wife who has been there for me throughout. No one should have to be put under that sort of pressure or deal with the issues that Tracey has had to over this last year.
But the reality is that this goes on every day and that there are thousands of other people supporting cancer patients, wives, husbands, mothers and fathers and children. Putting on a brave face, offering support, keeping strong and then crying into their pillows at night.
We need to not forget that they need support as all too often they are the unsung heroes who quietly get on with things while us patients get all the attention.

So I want to say thank you Tracey for everything, for loving me and supporting me through this terrible time. I love you, you're the best xx

Getting back to normality...

2010-06-01T12:04:00.000-07:00

Its now nearly a month since the stoma reversal operation and things are slowly returning to normal.
I'm feeling well but am being a little held back by the wound from the operation. Its healing well but taking its time due to the nature of it. Its a round, open wound that heals from the inside out and this is whats taking the time. The nurse is changing the dressings on a Monday and Thursday and insists that all is going very well and that I'm doing very well. I anticipate it being at least another three weeks yet though.
This means that I still cant really get back into the exercise routine in any real meaningful way so in the meantime I just have to be patient. I am walking regularly with a pack for added resistance and am going to get the exercise bike out and have a few gentle goes on that to do some easy cardio. Once the wound heals I hope to start some light weights again. I'm ever midful of the fact that I have arranged the sponsored Snowdon walk and have to get fit for this but at the same time have to get fit sensibly and not overdo things and set myself back and jepourdise the walk.

The good news is that I started back to work today! Only half days to begin with and then will build it up from there. It's great to be back at the sharp end again and for me its another clear indication that I'm now well on the way to recovery.

We also had a great family day out this weekend. We took the family across to the Forest of Dean and walked the Sculpture Trail. Tracey's sister and her husband Paul (a childhood friend of mine) came too along with my two nephews Danny and Jamie. It was the first time for them and we were blessed with great weather. We had a picnic first and then did the walk. We all had a really good time, especially the kids who could run,climb, get dirty and generally have fun. It was great, I really apreciate these days now. They are so valuable and should be cherished....

The Snowdon Horseshoe Fundraiser

2010-05-24T02:41:00.000-07:00

I'd decided whilst in hospital at Basingstoke that once I was better I was going to do some fundraising to help the hospital. To try and give some thing back.

I racked my brains to try to come up with something that I could do that would be a challenge but not out of my reach considering what I had been through and the fact that I wouldnt be as fit as I had been.
The obvious thing that sprung to mind was the descent and ascent of Titan in the Peak district. This was a caving trip that we had booked last year but was cancelled due to my appendix bursting. Realistically this would be too tough at the moment though. The cave shaft is higher than the London eye and whilst the descent may not be too much of a problem the subsiquent prusik back up would be a killer and I just wont be ready for it. Maybe next year....

I'd recently done some walking and enjoyed it. Two weeks before the MOAS me and a group of freinds had walked Corn Ddu, Pen Y Ffan and Cribbin in about a foot of snow and sub zero tempretures. It was a big change from caving but we had all enjoyed it.
Walking would be easier, all I'd have to do is decide what and where?

Some months ago I had seen countryfile or something like that where the presenter walked the Watkin path on Snowdon. It looked great. I knew that it formed part of the famous Snowdon Horseshoe a tough and challenging walk. So I started some research.
The walk itself is only about 7 1/2 -8 mile long but is very challenging. Snowdons summit is some 3560 feet above sea level (Pen Y Fan 2907 ft). There are a few routes up the mountain but the Horseshoe takes in the daunting Crib Goch traverse which is only possible to be done in the right weather conditions. The walk takes around 6-7 hours on average to do. It sounded perfect!

So with the challenge sorted I then had to work out when would be the best time? I had to consider my fitness levels and giving myself time enough to get fit for the challenge coupled with getting our best chance with the weather and of course trying to get a team together that would all be available on the same weekend?

Finally we have decided on the weekend of the 20th,21st and 22nd of August. Leaving after work on the Friday and camping at Llanberis overnight. Doing the walk on the Saturday and again staying overnight and returning Sunday.
The team so far is

David Mason
Stephen Mason
Tony Mason
Jon Mason
Andrew Jackson
Rhys Whickham
Steve Read
Scott Bates

All have agreed to help fundraise. I have also set up a seperate blog page for the walk so you can follow our progress with training and of course report back on the big day itself. Most importantly a "just giving" page has also been set up to allow donations to be made on line. Links to both pages are in the useful links section.

The money raised will be donated to the Basingstoke and Northampshire Hospitals charity and specifically the Pseudamyxoma Peritonei fund. The money will be used to help fund research into PMP that is being done in partnership with Southampton University and also to buy equipment for the specialist ward.

If you wish to donate than you can either see one of the team members listed above or of course do it on line via the "Just giving" site. All donations are gratefully recieved and will be put to good use helping sufferers of PMP and funding research into this devestating desease........Thank you!

Getting back to normal......

2010-05-24T02:08:00.000-07:00

I've been home a couple of weeks now and am recovering well. The wound from the stoma closure is taking a while to repair itself due to the type of wound that I have. The nurse is coming every few days to re-dress it and clean it up. I anticipate it being another three weeks or so before its properly healed.

It's great to be home though and whilst I cant do everything yet due to restictions on lifting and so on I'm doing most things now. I will be glad when I can get back to some rough and tumble with the kids and take them swimming again. It'll be a while yet before I can get back to caving due to its physical nature but I have been out walking.

I have found myself thinking about PMP less in the last week or so. Sure there is not a day goes by where I dont have to tend to the dressing I have in some way but in terms of PMP its no longer the heavey weight I have been carrying around with me for the last year. We are starting to plan for the future and have some things to look forward to.

The big news is that I return to work on the 1st June. Initially just doing 1/2 days to get back into the swing of things but I hope to very quickly be back to normal and doing full days. Again another step back to normality.

On 15th of May I had an anonomous comment from a follower that really made my day. This person is a fellow PMP sufferer in the U.S.A who has been following my blog. They had their operation about the same time as me in Portland, Maine. The comments that this person made really made me happy and have made all the effort writing this blog worth while. They said that my blog had helped them and that they enjoyed reading it. Knowing that I have helped just one fellow PMP sufferer is just reward and I was touched by their comments.It's exactly why I wrote this blog and I hope it will help others too. So this is a personal and heartfelt thank you to that person for those kind words and I wish you luck with your story.

Stoma closure day +5 Weds 12th May

2010-05-17T02:09:00.000-07:00

I awoke bright as a button this morning. The sun blazed in through the window and the ward was stuffy from being shut up all night.
" I slept well" I commented to Graham who now occupied the bed to my left.
"I know you did, I could hear you" he replied.
Apparently I had been snoring most of the night which was unusual for me unless I have had a few beers!
I felt revitalised, the muzzy, tired feeling of the day before had gone, I was in no pain and my stomach felt fine.
I sat on the bed crossed legged with the latest issues of Trail magazine and Descent when suddenly I was surrounded by the doctors! They had come early on their rounds. Both Mr. Moran and Mr. Cecil were there.
"Blimey, you look better than when I last saw you" Mr. Cecil commented.
"He was sat out front last night" replied Mr Moran.
They asked how I felt, I told them that once the N.G tube had been fitted things had started to work within hours.
"That's interesting" they said
"In future I think we should just bite the bullet and do it" Mr Moran said to Mr. Cecil giving me the impression that they had perhaps experienced something similar before.
"So go home today?" said Mr. Moran.
"Today?" I said a little surprised.
"No reason why not, your well enough" he said.
"Great!" I replied and thanked them for all they had done.
I grabbed the phone immediately and phoned Tracey. She was pleased. The next thing was to try and arrange a lift back to Bristol at such short notice. Dad was working and his weekly day off wasn't until tomorrow so we may have to stay an extra night.
After a few calls Dad decided that he would come up and pick us up after work and then he could have a full day at home tomorrow.
I tidied my stuff up and got dressed into my civvies. The nurse came again to change my dressing and gave me some extra for the district nurse to use when we got home.
I had a wander down to C2 ward to see if anyone was around who I knew just to say hello. They were all pretty busy and there were a lot of new faces there. I then stopped by Sue's office but she too was out on he rounds.
Finally the time came to leave, Dad was arriving late afternoon and the nurses wanted my bed so I decided to go back to the flat with Tracey. I said my goodbye's to the chaps on the ward and wished them all luck. It was like a mass exodus, both Albert and Colin were also leaving today, Paul was due to leave the following day, leaving Graham and Dave.
We said our goodbye's to the nurses and left them a box of chocolates as thanks and then headed down to the flat. It was good to be out. On the way I bumped in to Sarah, one of the nurses who had looked after me on C2. We chatted for a while and she remarked on how well I looked. I thanked her again for all she did for me whilst I was in her care.
Once down at the flat we made a cuppa and sat with the T.V on awaiting Dad's arrival. The T.V was full of election news that David Cameron was the new Prime Minister. Whist we sat there I noticed one of the male nurses stood outside having a cigarette. It was Vasili the nurse who looked after me for the biggest part of my stay in ICU. He'd looked after me very well and I wanted to thank him for everything he'd done for me.
"Good to see you standing up!" he said witha smile in his Romanian accent.
"How are you Vasili?" I enquired.
We chatted for a while, him telling me how things were going on ICU.
"We have good month's and bad month's" he said. "Sometimes the Pseudo patients are moved from ICU onto the ward only to come back again a week later with chest infections or other problems. It goes in fits and starts. The one thing I have noticed though in my 12 months here so far is that it's all about the patients attitude. If you go into it already admitting defeat, feeling down then you will struggle. If like you Dave, you are positive and fit and healthy you will do well. I cant believe just how much your mental attitude towards it has such a big part to play in the outcome"
I'd always thought this was the case and people always say it. But to hear it as an observation from an actual ICU nurse couldn't be any clearer. If you are going to get through this without too many problems then a positive mental attitude must be adopted. Fact.
We chatted a little longer and then I thanked him again and we said our goodbye's.
Dad arrived a little after 16:00, we had another cuppa and then loaded the car and made our way home. Isn't it just typical, the one time you really just want to get home and you get caught in traffic. A poxy hole in the ground just outside Newbury held us up for ages.
We arrived home early in the evening during a heavy shower. Chloe was at the door waiting for me and Jess in the window. It was great to see them again, I'd really missed them. I grabbed my coat and pulled it over my head and made a dash from the car to the house. I hugged the girls who were excited to see me and then hugged Mum.
They were surprised to see me in such good condition and expected me to be in a similar state as to when I came home from the MOAS I think.
It was great to be home.
Just before bed I jumped on the scales. I was down to 10 stone 11lbs. That's bang on a 2 stone weight loss since the point I was admitted in February.

Stoma closure day +4 Tues 11th May

2010-05-17T01:13:00.000-07:00

The nurses awoke us at our usual time of 06:00. I was tired from a busy night walking back and fourth to the bathroom wheeling my drip stand and holding the drain for the N.G. tube. I stayed in bed and dozed,quietly content that things were finally working as they should. I felt much better, the acidity and gastric reflux I was suffering from had gone I felt completely different.
The doctors came around about 08:30 and advised that the N.G. tube could come out and that the drip could also come out when it had finished. The timer on the stand showed another five hours yet though. I couldn't wait to be free of all the attachments and get in to the bathroom and have a nice long shower. The nurse was prompt and she came back pretty quickly after the doctors has left to remove the N.G tube. This was far easier to deal with than having it put in. The trick as with allot of these things is to just relax and go with the flow. A few seconds and it was all over with and felt so much better. You could constantly feel the tube in your throat when it was in and it was made worse when you turned your head as the tube moved. But I was free now and it felt great!
I sat in the chair at the side of the bed and waited for the drip to finish. I kept myself amused with books and the DVD player and waited patiently for the drip to empty. I found myself watching the digital countdown on the drip getting more and more excited as the time drew near for it to finish. Before long the alarm sounded to show that there was less than five minutes remaining and I notified the nurse. She arrived back not long after and removed the drip, capping off the end of the cannula. One trick I have found useful is that if you have a cannula in not being used get the nurses to put some tubigrip over the top, it stops it getting snagged on clothing and so on.
I called Tracey and we arrange to go for a walk before lunch was served. We strolled down to the foyer and sat in the chairs for a while watching the hustle and bustle of people coming and going. I headed back just before lunch, I was feeling really well and apart from the odd stomach cramp was in no pain at all. I was told I may suffer from cramps and indigestion as the bowl returned to life.
Lunch was served and this time it wasn't just a drink I was given. I had soup, jelly and ice cream. I have to say that hospital ice cream is weired stuff, it doesn't melt, just gets warm and still holds the same shape and texture. Not sure what its made from but was very welcome to someone who hadn't eaten for days.
The nurse came around in the afternoon and changed my dressing again. Shortly afterwards Tracey arrived and we sat for a while and talked with Paul next door. We went for another stroll, I had a craving for some chocolate and bought some Cadburys Giant chocolate buttons. Yum!
To help the time pass throughout the afternoon I scheduled in a number of tasks at certain times throughout. I wouldn't let myself do the said task until it was time so as to try and keep myself as busy as possible and string things out. The best thing I did was go take the long awaited shower. I started first with a shave as to have the shower first would have meant that the mirror would be steamed up making things difficult. Once shaved, I stripped and then prepared the shower. It was at this point that I caught a glimpse of myself in the mirror for the first time properly since the operation and it was a poignant moment. I no longer had the stoma bag hanging from the right side of my abdomen. I felt quite choked. In its place was just a small post op dressing. I hadn't realised just how much "the bag" had affected me, I'd just blocked it out as part of the coping process and now I was free of it. It felt good, I felt almost normal again. I enjoyed that long hot shower.
I sat quietly the rest of that afternoon waiting for dinner to be served and then to see Tracey again. Tiredness was catching up with me but I couldn't sleep,there was just a glimmer of excitement that I might just be going home in the next day or so. That evening Tracey and I took a walk again, we took the stairs rather than the lifts to get some additional exercise. I'd missed the doctors on their rounds somehow as I'd assumed they might not come around as they would be busy in surgery as Tuesday is MOAS day. However we bumped into Mr. Moran on our walk, he was busy chatting to some other doctor dressed in his scrubs. He saw me and waved "your looking better"he said with a smile.
"thanks" I replied and he carried on chatting with his colleague.
I was desperate for some fresh air in my lungs so Tracey and I made our way outside of the main entrance and sat on the benches. The rain had stopped and the sun had come out and it was a nice evening, cool but refreshing after the stuffy air of the ward. We sat for half an hour, my arm around Tracey.It felt good. Mr. Moran then breezed past this time in his suit and on his way home. He tapped me on my knee as he passed.
"Good to see you looking so well" he said and kept walking.
"thanks" I replied.

Tracey and I made our way back to the ward shortly afterwards. My eyes were dry where I was so tired but still I couldn't settle down to sleep. Tracey left and I led on the bed. I grabbed my MP3 and put on some nice relaxing classical music. It felt good, I was so relaxed the music was amazing and I led there like that for over an hour just chilling to the music, feeling good, feeling relieved, contemplating what the future might hold. Was this ordeal now over?

Stoma closure day +3 Mon 10th May

2010-05-14T05:14:00.000-07:00

I immediatly felt better today after a descent nights sleep. Again I still was only on a liquid diet so went without breakfast again today. As I was feeling ok (ish) I met Tracey in the morning and w went for a walk and sat down on some benches where we could look out on some ponds with fish in. I was still not right though,constantly shifting around as i couldnt get comfortable.
I again had a liquid lunch but I could feel things backing up again. There was still no sign of any movement and there was much interest into my bowl movement and flatus!
Tracey arrived at 14:00 as ususal and could see I was still not right and was going downhill fast. I was in constant pain, felt sick and bloated.
I called the nurse and said that I was feeling unwell and that it was not a case of if I was going to be sick but when. For that I got another antisickness jab in the bum which made me feel equally woozy again. So now I felt faint, and in discomfort. The doctors were called.
They arrived promptly and both Mr Moran and Mr Cecil were there, they could see I was suffering. I asked for the N.G tube. They were surprised. People dont generally ask for this as its not a nice proceedure. Basically the tube is fed via the nose down the throat and into the stomach where excess liquid is then drained out into a bag. All the time you are wide awake. But I was in pain, I felt awful, I needed this.
"O.K" they said "We'll do the N.G tube and insert a drip as you are getting dehydrated".
The nurse's arrived back promptly and got straight on with it thankfully whilst my mind was made up. It was horrible. I have to say it was one of my worst hospital experiences so far and was pretty sick. But the effects were immediate. I sat quiet for the next couple of hours with the curtains drawn around the bed whilst I settled from the whole experience.
Tracey came to visit me at 18:00 and by then I was feeling better although the n.g tube does irritate your throat. The sickness had eased and I was feeling a bit better. I had a quiet evening and didnt do much at at all.
Around 22:00 though things started to change, I needed the toilet. I got up quickly and made my way to the bathroom.
Celebration time! Things were starting to work! I emerged from the bathroom with a big grin and bumped straight into Moana one of the nurses.
" You been?" she said in her phillipeno accent.
"Yup" I replied smiling.
"Thats brilliant Dave,hooray"
I walked into the ward and all eyes were upon me. I said nothing just gave the thumbs up and a huge cheer went up! It was really funny. I think secretly they just all wanted a good nights sleep. They got it. It was a busy one for me though!

Stoma closure day +2 Sun 9th May

2010-05-14T04:32:00.000-07:00

I awoke feeling much better, still getting the odd stomach cramps but not feeling quite so sick. The doctors arrived quite early. One of my consultants said that i shouldnt have been given the food and should only have been on a liquid diet until by bowels had started to move. Basically what had happened is after the operation the point where the bowel had been joined back together had obviously swelled as all wounds do after injury. This had the effect of closing the bowl temporarily until the swelling eased, in effect acting as a break. What then happened is that as I ate the food backed up in my stomach until the only way out was by vomiting. I now had to take a step backwards, only taking in liquid until my bowels started to work and then introduce food slowly.
Whilst there the doctor looked at the wound. Its a circular type wound that has a single stitch running around it like a "purse string". The centre of the wound is then left open with some gauze in it so the wound heals from the inside out and then any unwanted gunge ouzes out and is absorbed by the gauze rather than get trapped in. Over this is a small dressing. Everything was fine and the dressing was changed.
Throughout the morning I felt ok but again, taking in liquids throughout the day this seemed to back up and at 16:00 I was sick again.Afterwards of course I felt better again.
The doctor called again later and advised that if the vomiting did not settle and my bowls started to work then I would need a drip and possibly a Nasogastric tube (N.G tube).
I had a ok nights sleep but was still uncomfortable and suffering with bloating and indigestion.

Stoma closure day +1 Sat 8th May

2010-05-14T03:27:00.000-07:00

I had a good night, I'd been moved to the next ward down late yesterday evening and now had new room mates but had slept well and again felt ok.
In the usual manner we were awoken at 6am by the nurse doing the observations;blood pressure, o2 saturation,heart rate and temperature and then the meds round. Most of us dozed in between.
Breakfast was served at 09:00 and I had some rice crispies and toast. As people surfaced and became more with it the introductions were made. I was in a middle bed in two rows of three. To my right was a chap called Paul, an older fellow who'd been the CEO of some engineering company. He'd lost his right big toe due to diabetes. Opposite him was a chap called Colin who like to be called "Micky" owing to the fact that his surname was Finn. Opposite me was Albert, in his 90's and acutely deaf he'd sit in his chair missing out on the conversation around the ward,reading his paper with his hearing aid whistling! To my left was Terry a quiet but well spoken chap who had been in for some fairly major bowl surgery and opposite him was Dave, a captain Nemo look a like with a broad Lancashire accent. We all hit it off well.
The day rolled by slowly as they often do in hospital. Tracey couldn't meet me until 14:00 so we spoke on the phone and text each other. Dinner was served at 12:00. A mild chicken curry with rice. This was the straw that broke the camel's back. Throughout the afternoon I increasingly felt worse and worse. Stomach cramps,bloating,heartburn and pain. I felt sick. I started vomiting around 4pm and didn't stop until 4am on Sunday morning. I felt awful,in pain and tired. The night duty doctor was called and came to see me I had been given Omeprezole to help with the reflux, Cyclizine tablets. The doctor advised that if the vomiting didn't stop they may need to do some x-rays to see what was causing it. They gave me a further two anti sickness injections in my backside that made me feel really woozy and then I slept.....

Operation day.... 7th May 2010

2010-05-14T02:01:00.001-07:00

I had a good nights sleep. I was surprised, often your nerves get the better of you the night before and op and I was also in a room with six other chaps that wasn't particularly dark or quiet. Perhaps I'm getting a little too used to this hospital life.
Again I didn't feel too nervous about the operation. It was only a small one where I was only expected to be knocked out for around and hour and a half. "A walk in the park compared to the last one" Sue had told me. I had a shower and got myself ready.
The porter turned up at 09:30, quite a bit earlier than expected so I had to ring Tracey to come up and see me off as there were now strict visiting hours in force around the hospital to reduce infection.
I walked to theatre! Tracey was with me most of the way and we stopped at the entrance to say cheerio, hug and kiss. "I wont be long" I said. I then turned and made my way with the porter into the theatre pre op rooms. A deep breath.....here we go again then and focus....
In pre op I hopped onto the bed and made myself comfortable. The room was the same one as where I had my central line changed before, the bed in the middle, stainless steel tables down each side of the room with cupboards on the wall stuffed with surgical gadgets and equipment. Infront of me were two double doors into the operating theatre, one was open and I could see the operating table with the huge pivoting light above it.The door was quickly closed.
The anaesthetist started to talk me through what was happening, they removed my glasses and put them to one side. The nice thing about it is they always work quickly at this point and don't hang around keeping you waiting. I was soon fast asleep.
The next thing I knew I was in recovery, that was quick! again my memories of this are pretty sketchy but I was far more aware than any of the two other ops I'd had before. Tracey was on the ward to see me back and I was pretty sleepy for a while. I soon perked up though and remember feeling really quite well, far better that ever before. My worries about suffering from hallucinations were unfounded and I had no problem with anything like that.
As the day wore on I dipped in and out of sleep but was increasingly well. Surprisingly I was allowed onto a light diet, so I ate some soup for tea that evening (big mistake).

Stoma closure admission day.........6th May 2010

2010-05-14T01:17:00.000-07:00

We arrived at Basingstoke at around 09:30 after an early start but thankfully uneventful journey. The next job was to once again get Tracey booked into the on site accommodation. This time rather than her own flat she shared with other people so it gave her some company.She was a little nervous being on her own but as soon as we walked in we bumped into a member of the Christies forum which helped break the ice and settle Tracey.
We the headed to Costa coffee for a bite to eat and a drink before heading for the X ray department for my 10:30 appointment. At this point I was pretty relaxed about the whole thing. I felt that nothing could be as bad as what I went through last time and I'd managed that so I could manage this.
At the X ray department they were running on time and I didn't have to wait long. I was soon called and made my way to a cubicle where I had to change into the usual hospital gown. I was then shown through to the X-ray room. It looked a pretty standard piece of kit to my untrained eye. I was expecting something slightly different given what they were doing but this wasn't the case.
The nurse explained thoroughly what would happen. The whole procedure would take less than 10 minutes. A small tube is inserted into the back end and a series of pictures taken to establish where the join has been made in surgery. The photos have to be taken at different angles so it did involve shifting around to different positions on the table. Once they were happy then the dye is injected via the tube to check for leaks, again the photos are taken from different angles and that's it, job done.
The experience certainly wasn't painful but at the same time not enjoyable! You just have to get on with it, it has to be done. You are then ushered to a bathroom to tidy yourself up and get changed. All pretty straight forward really and over fairly quickly. I was back in the waiting room by about 10:50.
Next I made my way to "C" floor Elective Surgery Admissions as I had been instructed. The nurse went through the admission papers and explained that "C2" was full and that I was to be admitted to a bed on a mixed ward on "C4". I was a little disappointed but what could I do. As we were there early they didn't need me for a while so again we were free to go off to the restaurant for some lunch for an hour.

I made my way back to the ward and was shown to my bed. I got myself settled and was soon visited by one of the doctors. She took blood and inserted a cannula in the back of my left hand. It seems that surprisingly my veins hadn't recovered properly from the last op yet and she struggled a bit. This was unusual as normally they have no problem with me as I have a pretty good cardio vascular system due to all the running and stuff.
I was also given an E.C.G. This was a bit of a strange one? So we asked, and to my surprise was told that post MOAS they has discovered that I had a small amount of fluid around my heart! I was shocked, this was the first I had heard about it. I vaguely remember having a heart scan when I was in ICU but it was all a bit blurred due to my drug induced state but I clearly remembered the lady saying that a I had a "beautiful heart" and to be honest would have been shocked at anything else again due to the fact I don't really drink, don't smoke and the sheer volume of exercise I do.
The doctor explained that the E.C.G results were fine, it was just a precaution and that the fluid around the heart post MOAS was caused by the trauma of the operation as the body often will store fluids around the body which then is re-absorbed. Phew!
Then that was that, I made myself comfortable and settled down with an episode of "Band of Brothers" on the DVD player.
I was second on the list to go down for surgery in the morning. The consultant just wanted the radiographer to check my scan results before she proceeds. I anticipate going down around about 10am. I'm nil by mouth from midnight so tuck into a pack of Jaffa cakes for supper......

Off to Basingstoke and making tentative plans for the next adventure..

2010-05-05T11:35:00.000-07:00

So here we go again, early tomorrow we head off to Basingstoke for yet another stay in hospital. It'll be my third in a year. Hopefully though this one will be much easier than the last one. My appointment for the water soluble enema is at 10:30 am so will mean we will have to be on the road by 07:00 to do battle with the rush hour traffic.
The aim of the scan is to inject a dye into my bowl allowing the doctors to watch the dye's progress as it travels through my system. They will be looking for any leaks in my bowl where it has not healed properly from the MOAS allowing the dye to escape into my abdominal cavity. Hopefully that wont be the case and the dye will stay within the bowl and this means its healed properly allowing the stoma closure operation to go ahead on Friday.
Once the scan is completed I then have to go up to "C" ward for admission and to get myself settled while we await the results of the scan.
I don't feel too worried about the prospect of yet another operation, third time lucky! That said I haven't slept too well in the last few nights and will probably use some chemical help tonight to ensure a good night and arrive at the hospital well rested. I'm hoping I'll be re-admitted to ward C2 where I know I'll get a peaceful nights sleep but that's not guaranteed.
The operation is far less invasive this time and only takes around 1 1/2 hrs so not too much anesthetic. I'm hoping that this will mean that I'll feel a bit better when I come around and will recover quickly. I'm keen to get back to normal now,start work again and all the other things that I enjoy and also book that holiday with the family.

I plan to do the same as when I had the MOAS and write a detailed diary whist in hospital that I can update here once I'm back home. The estimated stay in hospital is between 3-5 days so I hope by Wednesday of next week to be back home. We'll see....

In the last few days I have been up to my old tricks and planning the next big adventure. It of course relies on me making a good recovery and being strong again by the end of August as that's is when I'm planning it for. "What is it" I hear you ask?
well you'll just have to hang on a while as I'm not going to announce it properly until I'm confident that I'm well enough to do it, I don't want to tempt fate. But its going to be good and its going to be a fundraiser for the hospital and research into PMP. The plans are firming up however and a team is in the process of being put together. We know what we want to do and details are being finalised. I just have to get fit!
It's been good actually as its meant that I have had something to focus on,something to organise, and to look forward to. Watch this space.......!

One week to go.....

2010-04-29T06:33:00.000-07:00

Its only one week to go now until my next visit to Basingstoke. It's strange, on the one hand I'm excited to get rid of the stoma and finally get back to normal whilst on the other hand it means going under the knife again and feeling poorly for a few weeks after.
Hopefully though this time the recovery should be much shorter and I'm hoping that within about three weeks after the op I can consider getting back to work.
The nice thing is that I can really start planning for the future again and can start looking forward to plans that I'm hatching! Number one is to book a nice holiday with the family. We have all been through a lot this last year and deserve a couple of weeks in the sun. Next I'd like to start planning a few adventures with the boys again and tie it in with some fundraising!

It's hard to believe that about a year ago all of this nightmare we have been through started.Looking back at my blog entries from the early days things were very dark and we thought our world had ended. Sure we went through some really rough times especially when the MOAS was done but we got through it. Talking to other PMP sufferers on the Christies forum its clear that I have been very lucky so far. Many people have suffered far worse than I have, not being able to have the MOAS, complications and the hospitals being unable to remove all the disease. I have been lucky indeed.

In terms of recovery from the MOAS all has gone well, my scar(s) have healed well and without problems. I have not suffered with any pain at all and feel really well. The patches of hair loss (two small patches at the back of my head) that I lost due to the chemo (I think) have now grown back. Shame about the one big patch on the top and front not caused by the chemo! In terms of weight I am still the same and havent put any on. I'm presuming this is due to the food I do eat only being in my system for 50% less time than usual and I'm just not getting the calories from it that I normally do. Once the stoma closure is done I'm hoping this will rectify itself. Whilst my food intake is increasing its still not as good as it was and portion size is smaller. I'm also missing some of the foods that I used to love, salad's, spicy foods, fruit and fizzy drinks. Again once the stoma closure is done I can get back into these and am looking forward to a curry and a beer.Energy levels are good and I'm doing without the afternoon naps and early nights. I have continued to walk and am managing some good distances now and hope that this will again help with my recovery from the next op. I'm also hoping that my overall fitness levels havent suffered too badly so that I can quickly get back to running and caving.

We are not sure what the future may hold for us but we have to make the most of our second chance and enjoy life to the full. Get this next op out of the way and then making good on our plans for days out and holidays and of course getting back to work.

Stoma Reversal....the letter arrives.

2010-04-20T08:45:00.000-07:00

I got the letter today that I'd been waiting for. I have been invited back to Basingstoke for the stoma reversal on the 6th/7th May.
I have to go up on the 6th for a Water Soluble Contrast Enema and providing that the results show that there are no leaks and that my bowl has healed properly then I will have the stoma closure operation done the following day.
The operation itself is only 1 1/2hrs long so quite a bit shorter than my last ordeal. In all I expect to be in hospital around 5 days to recover properly and to check that all is working properly. Luckily I have been booked into C ward again and hope that I'll benifit from their outstanding facilities and care.
I'm really looking forward to getting this done and out of the way. Obviously no-one looks forward to having an operation of any kind but for me it marks the end of a long drawn out ordeal that has been very stressful and taken us right to the edge at times.
I'm anticipating my recovery to be around three weeks or so and can then start to return to normal.Plan days out with the family, book a holiday, return to work and of course my passion for the outdoors with caving,climbing,walking and running.

Tuesday 13th April- Ten week anniversary.

2010-04-13T11:21:00.000-07:00

Ten weeks,where has that gone?! Its hard to imagine that this time ten weeks ago I was still in the operating theatre (19:30hrs GMT) having started at 07:00hrs. This last few weeks have gone really well. I feel well, better than I have done for ages and am now ready to carry on from the point I left off. I feel that I can start thinking about doing some of the things that I did prior to my operation. Of course I have to take things easy, slowly getting back to normal and taking note of what my body is telling me and when it complains, take a step back.
The stoma I feel is now holding me back a bit. When I do go out for the day I have to plan carefully and ensure that there are facilities nearby for me to use periodically. When you enjoy the wilderness, walking and caving this can limit you. So these things will have to wait a little longer.
I visited work last week for the first time since the operation. It was good to see some friendly faces and catch up with whats been going on. I discussed starting to do some work from home. I'm lucky enough to have access from home and have identified a number of non time critical (non stressful!) projects that I can do for a couple of hours a day. This way I can phase my return to work and keep myself busy whilst also contributing a bit.
I did manage a couple of walks over the last few weeks. Over the Easter weekend we walked from Oldbury Court to Snuff Mills. Just Tracey,Chloe,Jess and me. We took a picnic and sat and ate before heading for the playground for the kids to have some fun. It was a great few hours and nice to get out, quality family time.
The following week I managed to walk the furthest so far. My good friend Jon and I walked the Bristol cycle path to Bitton station and back. It was a beautiful sunny day and there were loads of people about. At the station we stopped for a rest and and sat and ate an ice cream. We took a steady stroll back and luckily for us at the point where we get off to head back to mine there is a pub so we stopped for a pint and watched some of the Grand national on the big screen.
Physically as well as feeling good, results and tests are going well too. I phoned for the latest blood test results today and found out that my platelets have fallen below 700 and are now at 535. This should mean that I can now finally stop the Aspirin,I find out for sure tomorrow. If this is the case then all I'm left with is the penicillin and as I now have no spleen will remain on these possibly for life. My weight still hasnt changed and I'm holding stready at just below 11 stones. I'm eating well now but still not quite back to normal in terms of volume. I dont think that this will change until after the reversal.
I have also spoken to Sue Alves(specialist nurse) in the last week who has indicated that the Stoma reversal should take place in "early May". This will mean another stay at Basingstoke and Northamptonshire Hospital for around a week or so and then recovery at home after that. Then hopefully I get back to normal, return to work full time, book a family holiday, start walking (Pen-Y-Ffan & Snowdon are planned for this year) and caving (next year I hope to be fit enough to go back to Derbyshire and tackle Titan),pull on my trainers and go for a nice long run. I cant wait.......

Eight Week anniversary

2010-03-28T08:11:00.000-07:00

It'll be my eight week anniversary on Tuesday 30th March since having the MOAS. I have to say that the time has passed quickly and all those pipes,tubes,drugs and nightmares seem a long time ago now,thankfully. I'm pretty positive at the moment and concentrating on getting fit again and building up my strength. Food is becoming easier, my portion size is growing and I am eating more. My weight however hasn't moved, I havent dropped any and I haven't put any on either. I am finding the supplementary Fortisips shakes not so nice now and haven't had any for days.
I have stopped taking the cyclizine and Omeprizol (stomach settling drugs) as I wasn't suffering any sickness or acidity.
At the last set of blood tests taken around a week or so ago my platelet count had dropped to 744. Once it falls below 700 I can then stop the Aspirin. The nurse will be back in around two weeks for the next test and hopefully I'll be below the 700 mark then and able to stop the Aspirin.
I still have a numb area at the base of my back. From what I gather this seems to be fairly common and is down to nerve damage done during the operation. In many cases sensation returns with time.
I went to the stoma clinic this week and they are very pleased with my progress. Usually they aim to see patients again in another two months or so but that should fall around the time of my reversal so they deemed it not necessary. Its been left that I call them if I need them.Good news I think.
I have been doing some research on insurance in recent weeks. Travel insurance looks possible through specialised insurers (see link in useful links section) but in terms of life insurance post op no-one will touch a PMP patient. A few years down the line and this may change providing one stays PMP free.
I have been walking regularly and gradually going further and further. I can do an hour of constant walking quite easily now and spent a lovely afternoon with Chloe last weekend out walking (see photo) just Chloe and Dad time. I'm lucky enough to live very close to the Bristol and Bath cycle path and am making use of it. The path is flat and easy to walk with plenty to look at and semi rural. I'm hoping to walk to Bitton station this week. It'll be twice the distance I have walked previously but I feel if I take my time then I'll do it. There are also a number of places along the way where I can stop and take a breather if required. I'm looking forward to it as it's almost like I'm starting to get back to normal..and I'm setting myself challenges again and starting to think about future challenges once I'm back to full fitness.
I have to take it steady though and not overdo things. The nurse keeps reminding me that whilst I feel well my insides are still healing and I should take it carefully but they do recognise that I'm making remarkable progress and at the same time don't want to hold me back. Its just a case of listening to my body and reacting accordingly. If I'm tired, I sleep. I fell asleep on the sofa yesterday afternoon something I haven't done in a long time and could have been a result of my long walk the day before.I just have to be sensible.
Mentally both Tracey and I are doing well. Things are starting to get back to normal and that helps. I think once the reversal operation has been done and I have returned to work we will truly start to return to normal and be able to plan our future. Holidays,days out,family get togethers, all the things we took for granted before. Finally it seems that the black hole that was my future pre op is starting to look not so black and there are hazy glimpses of future plans and dreams.
However PMP is now our Albatross. It will always be there in the background even on the very best of days and will become all too apparent around the yearly scan dates. Tracey is struggling with this more than I and often asks "will it return?", "if so, how long will it be before it happens". No-one can answer that question, not even the consultants and we cant live worrying about that. If it happens we will deal with it when it happens, who knows I could be knocked over by a bus next week. No-one knows what the future holds.
So for now, I'll keep enjoying those walks, plan my future challenges..Pen-Y-Ffan(again!), Snowdon, fishing,caving and most of all time with my family. I'll get the reversal done and we'll get back to normal and enjoy the second chance that the staff at Basingstoke have given me.

9th March 2010 My five week anniversary.....MOAS + 5 weeks

2010-03-09T02:47:00.001-08:00

Its now five weeks to the day that I had the operation. How things have changed! In the last week I have finally started to put on a couple of pounds and this has coincided with a huge improvement in my strength. The picture above was taken at the weekend when I went walking with my family on the Bristol to Bath cycle path. We are lucky that is so close and the semi rural surroundings make it a joy to walk. I'm now managing walks of around 3/4 hr regularly and am thinking about increasing it a bit more next weekend. I am treating my walks just like my running training. I have a long flat route to build endurance, a shorter hilly route to build strength and a short flat route for when I'm just too tired for the others (which I haven't done for a while now).
Mentally I also feel stronger and far more lucid. As time has passed dealing with what I have been through has become easier and the hallucinations are fading into the past although still make me uncomfortable when I think of them. I have finally also started planning my future a bit. Something I hadn't done pre op. We have tentatively talked about a family holiday later in the year after my second operation has been done and I have a few months work under my belt again. Never the less something to look forward to.
The caving and climbing will have to wait a bit I think until I am really fit. In the mean time I plan to do some fishing through the summer months and continue with my walking. Who knows I may get back up Pen-Y-Fan before the year is out. I also want to take the kids camping and do some of the things we have been putting off.

Food is becoming easier and slowly the volumes are increasing. I still cant manage a full meal at the moment though so am still supplementing meals with the Fortisip shakes.
I have no pain so have cut out all the painkillers totally although I am still taking medication to help settle the stomach and of course the Penicillin which I will have to take for at least the next year now that I am without a spleen. My Platelets are still high (1700) so I am also still on the Aspirin to thin the blood.

In all things are really starting to look up and I'm feeling pretty good. Just need to keep working on my food intake and getting back to full strength although I think that could be a slow and frustrating process.

Adjusting to life at home and coming to terms with what we had been through....

2010-03-09T02:13:00.000-08:00

Once we were home and settled things seemed a little strange. I was still weak and tired from my ordeal and needed to sleep on an afternoon to get through the day. Food was still extremely difficult to get down and I was only eating small amounts. I weighed myself and had now dropped down to 10 stones 13lbs. I'd lost nearly two stones since the operation.
The day after we came home the district nurse came by to check on me and to remove my staples. I wasn't looking forward to that bit as I thought it may hurt. In the end it wasn't too bad, led on our bed the nurse removed the 47 staples that had held me together for so long. The wound was healing nicely. She also re-dressed one of the chest drain dressings.
We ordered more medication to be delivered to the house to ensure we had plenty, she also organised my sick note for work and in light of the fact that I was loosing weight also sorted me out some Fortisip shakes. These are high calorie milkshakes designed to boost your calorie intake. Bloods were also taken to measure my platelets count (previously over 2000).
A few days after that the local stoma nurse came to visit to check on how I was doing and to check the measurement of the stoma to ensure I was cutting the bags to the right size. Whilst I dislike every minute of having to have a stoma its a necessary evil and for me luckily a temporary thing.
Tracey and I were sleeping in separate beds for the first week or so. Tracey was so conscious of not bumping into me and hurting me or woke every time I moved worrying that something was wrong it resulted in her not sleeping at all the first night and it was important that she was well rested and strong so she could care for me during the day. This only lasted about a week and once she was a bit more relaxed things got back to normal.
In the immediate weeks after returning home both of us were shell shocked I think. We looked back at what we had just been through and realised what a complete nightmare it had been. Whilst you are in hospital you become so focused on what you are doing that you block everything out. Its only when you get home and start to relax that it really hits you. We struggled to discuss the events of the last few weeks and were both quite emotional for a while. The hallucinations still haunted me. There were three in total that really upset me, the one in intensive care when I thought it was the end and then I had two instances (one in intensive care and one on the ward) where I awoke from sleep not knowing who I was,where I was or why I was there? Each time it took several minutes for me to rationalise things and be talked down by the nurse. They scared me.
I started doing the short walks that the physio wanted me to do. Initially just to the end of the close and back (about 50yrds!). This soon turned into circuits of the close and then further.
I was still tired and found conversation difficult. I was happy just sat quietly and to be honest couldn't concentrate enough to hold a lengthy discussion. This resulted in Tracey and I often sat in silence. It wasn't an uncomfortable silence but it was silence never the less and was starting to bother me. I also felt that I wasn't interacting enough with the children and that upset me too. As my strength started to grow things did start to change and I became more "chirpy". Some days were better than others but I was making progress. There was a lot of adjustment to be done and some rationalization needed in my head in order to get back to something resembling normality.

Monday 15th Feb- MOAS + 13 GOING HOME DAY!

2010-03-06T03:53:00.000-08:00

Today was the day....I was going home. I was well ahead of schedule and had surprised allot of people. We had been advised prior to the operation to expect to be in hospital for three to four weeks. I had done it in two. I can only put that down to the fact that I had been so fit and well beforehand and had looked after myself beforehand. For me I didn't just get fit for the operation I had been keeping fit and eating well for years, it was a way of life for me.
The morning passed by quite quickly. One of the doctors popped by to say that my platelette count was very high (over 2000) and that I would need to take Aspirin to thin the blood until the platelette count fell below 700.
I was also weighed I was down to 11 stones 7lbs from 12 stones 13lbs prior to the op.
After lunch the nursing staff asked me to vacate my room as they needed my bed for another patient. I got dressed into my civvies for the first time. It felt strange I was becoming human again but was apprehensive about venturing outside of my bubble.
Sue came by around 14:00hrs and de briefed us. She ran through all my meds and had produced a spreadsheet telling me when to take what and when. A real help. She also went through the operation in detail explaining what had been done thoroughly. I was glad that we had left it so late to do this as I was finally lucid enough to take it all in.
Then we were just waiting for my meds to be issued by the pharmacy. This took ages and we didn't leave until 15:30. Venturing outside was great, finally getting a lung full of fresh air. But it was a little daunting. Now for the 2hr journey home.
By the end of the journey I was tired and had enough. It was good to be home and the girls had made me welcome home banners!
Joyce had also cooked a lovely roast dinner. Tracey was glad to finally have some proper food, I struggled with it a bit.
It was great to be home at last!

Sunday 14th Feb-MOAS + 12

2010-03-06T03:42:00.000-08:00

I had a quiet day today. It was Valentines day and Tracey and I exchanged cards. We had been out for a meal prior to me being admitted as we knew that I wouldnt be up to it afterwards.
It was a quiet day. All my pipes and drains had been removed and the nurses were only administering pills as and when I needed them.
The highlight of the day was that the family were coming to see me. The girls, Joyce,Stephen and Lisa and of course Tracey, Mum and Dad. It was great to see my girls for the first time and it was a tearful re-union. I managed about an hour and ahalf and then grew tired and had to leave them. They spent another few hours at the flat with Tracey whist I rested.
The stoma nurse came by and again I went through changing the bag. This went without a hitch and she issued me with my stoma kit and ordered supplies to be delivered to our house mid week so I had all I needed. She was happy and signed me off.
The last hurdle had been overcome.

Sat 13th Feb- MOAS + 11

2010-03-06T03:33:00.000-08:00

More good news today. The Potassium levels from the bloods I had taken yesterday again came back fine.
Managed breakfast fine and today managed to eat Rice crispies and a piece of toast. woo hoo!
Jon came to see me today as he was going to London for the weekend to visit family. It was great to see him and catch up on all that was happening at work etc.. It really brightened up my day and we sat an chatted for around an hour or so. He brought a bundle of get well cards and messages from all my friends at work. It was great and I was surprised at just how many people had bothered to send me messages. It meant a lot to me and I was touched by it.
I came back and ate some lunch but again it was a struggle.
I felt tired today so decided it was wise just to take things easy. The doctors came around and advised that all being well I should be going home on Monday.Cant wait!

Friday 12th Feb- MOAS +10

2010-03-06T03:14:00.000-08:00

Today I had my central line removed. This was done on the ward and was ok. The nurse simply Unpicked the stitches and removed the line. I had to lie still for 15mins afterwards to let things settle. All was fine.
The stoma nurse came by as expected and I managed to change the stoma bag without any problems. I still hate it though. She gave me a bundle of leaflets to read on the stoma care and dietary requirements. She would come back over the weekend for the final sign off.
The physio nurse also came by today. I had been walking short distances around the ward quite a bit and felt reasonably strong. So she suggested that we walk down through the next ward and do "the stairs". I had heared so much from other patients about "the stairs" and how difficult they were in our weakened state. As we left the room Ron offered to come too as the nurse was a pretty young blonde and I think he was quite jealous! I headed down the ward without problem and came to "the stairs". I was quietly confident and didn't think it would be a problem. I was right, I climbed them steadily and made my way back down without a problem. I had done well and we took a casual walk back to the ward chatting along the way.
"well as you have done so well I dont need to see you again" the physio said.
"I'm signing you off"
Another hurdle overcome and another step closer to coming home.
That afternoon I took a walk with Tracey down the the WH Smiths shop in the foyer. It was probably the furthest I had ventured so far and we used a wheelchair to come back as I was quite tired.
Tracey also gave me my first shower, it was bliss. A proper wash. I was finally feeling clean.
My bloods again showed the potassium was high and a second test was done. Again it came back fine.

Thursday 11th Feb -MOAS +9

2010-03-06T02:54:00.000-08:00

Tracey could come and see me today as she was now clear of the virus. Typically she couldnt get to see me until 10:30 as I had my second chest drain removed. They also started to reduce the TPN (high calorie liquid food) that was fed through my central line as I had started to eat proper food. The plan was to stop it late that evening and then I could have the central line removed. I'd done well for breakfast and managed 1 1/2 pieces of toast. I also managed a walk again today.
Again I had to get another X-ray done as I'd had the second chest drain removed. I had a second blood test today as my potassium was high. The doctor explained that this could be simply because they took too long getting the bloods to the lab and the blood hemotised causing the potassium to spike. The second test came back fine.
For lunch I managed some mashed potatoe and a few green beans. To be honest I was just going through the motions as I really was not interested in food. I didnt fancy anything as I wasnt hungry, food was a real chore.
That afternoon the stoma nurse came by to show me how to change the stoma bag. I'd been emptying the bag myself for a while. This was the one thing that I was struggling a bit to come to terms with. I reasoned with myself that it was only temporary and that 3 months would fly by and then the reversal would be done. It was there to ensure that everything healed ok and to give the bowel a rest.I just had to deal with it for a bit. Tomorrow the nurse would come back and I would have to change the bag myself. Do it well and she would sign me off.
Tracey and Mum left me around 19:00hrs to watch a DVD. Now that I was loosing all the pipes and tubes mobility was getting far easier and sleeping was much better as I was not restricted by anything.

Wednesday 10th Feb -MOAS +8

2010-03-06T02:33:00.000-08:00

Mum visited me again today as Tracey still couldnt. I had managed to have a shave and a proper wash and was sat in the chair.
I had my right chest drain removed as the central line had come out. This was followed by an X-ray to check that the lung was fully inflated and all was ok. At the same time I also had ultra sounds on my legs to check for blood clots. This took about 1/2 an hour and reminded me of the last time we were at the hospital for ultra sounds for when the children were being born. The results were good and there were no problems.
I was allowed some lunch today and had soup and jelly and icecream for lunch. I also started using the the spirograph today in ernest to try to improve my lung capacity.
I again had jelly and icecream for tea and was told that if I kept it down I could have toast for breakfast tommorow! Oh joy!
I also spoke to the girls today on my mobile. It was the first time since the op and they were very excited. It was great to hear their voices and I was quite choked afterwards.

Tuesday 9th Feb MOAS +7

2010-03-05T07:12:00.000-08:00

It was now exactly one week since the MOAS and I was doing ok. Unfortunately Tracey was not and had been up all night with D & V. The ward told her that she was not able to come visit until 48hrs after her last bout of sickness. She was gutted.
Both Mum and Dad came to visit me instead though. I had slept well and was feeling OK. Mum finally got my shaving kit ready for me as I was sporting a great beard by now!
That afternoon 5 of the six stomach drains were removed as I no longer needed the chemotherapy. It was a strange feeling as the drains went in quite a way and you could feel them being pulled out. No anesthetic was needed but I did use the PCA to give me a extra hit of morphine just in case!
I managed to sit in the chair and was a little tired. Unfortunately the fun did not stop there. A short while later I was wheeled down to Theatre again to have the central line in my neck changed from the right side to the left. This is done weekly to prevent infection. Its also done only under local anesthetic.
I led on my bed with my feet slightly raised whilst the surgeon basically cut a slit in my neck to find the major artery and then made an opening in it and inserted a piece of wire that was then stitched into place! Nice. I was then taken to recovery where they did an Xray to ensure that my lung hadn't been punctured in the process!
I was then brought back to the ward. Just as I was settling down after all the excitement the physio arrived and it was time to go walk about. I managed to walk out of my room, to the nurses station and then back again. All of about 25ft but it was a start and I actually felt that I had achieved something.
When I got back the nurse was waiting for me yet again, this time to remove all the dressings from the main wound to allow it to breathe. She was pleased with the way it looked and said things were healing nicely.
I again made it into the chair and had a bowl of water to wash my face properly for the first time in ages. It was hard work but worth it. I cleaned my teeth properly too.
I was also allowed to start drinking tea and squash so was quick to open a bottle of blackcurrant that I had waiting. I really struggled to get the lid off where I was so weak.

After all the fuss I was tired so hopped back into bed. I started to chat with the other chap in the room- Ron Thorn. He was 80 years old and a colourful charactor.
"what was your line of work Ron?" I asked.
"You don't want to ask me that whilst your in here" he replied.
"why is that?...go on..."
"I'm an undertaker" he replied!
HE was great to talk to and really helped the time pass with some fantastic stories about his job. He was a real craftsman too as he also did all the stone masonry and made the caskets as well as providing the cars etc. The business had been handed down by his grandfather ti his father and then to him. His sons and grandsons have also taken on the business which is in a small village called Alton not far from the hospital.
Outside it was cold and snow showers blew though although not amounting to much.

Monday 8th Feb-MOAS +6

2010-03-04T02:12:00.000-08:00

When Tracey and Mum came to see me this morning I apparently gave them my first smile since the op. I know this meant a lot to them as it showed that I was feeling better. I had slept through the night and was feeling pretty good. Mr Cecil came to see me and told me that I was doing really well and that they hoped to move me later today and that they were just waiting for a bed on the ward to become available.
My temperature had returned to normal and as I was doing so well my epidural and NG tubes were both removed. At last some real progress. The NG tube had become quite uncomfortable.
Dad came to see me today too which was nice as I hadn't seen him in a few days. Tracey came back in the afternoon but I was pretty sleepy so she didn't stay long. That afternoon the cannula's were also removed from my wrists. Slowly I was becoming free from all the attachments!
Then things happened really quickly. Suddenly there was a hum drum of staff and porters and I was being moved back to the specialist ward C2. I was swapped from one bed to another and then all the wires and attachments untangled and the machines they were attached to moved to the new bed. Then we were off....back to the ward.
By 16:05 I was in my new room and settled. I was in the high dependency twin room sharing with another chap.
All this excitement had tired me out and I spent much of the evening dozing. Tracey and mum left me to it around 18:45 as I was so tired.

Sunday 7th Feb MOAS +5

2010-03-02T05:27:00.000-08:00

Mum and Tracey came to see me around 09:00hrs. I hadn't slept well an after effect of the hallucinations. My blood results came back fine. The nurses made me comfortable and I spent much of the day sleeping catching up from the night before.
Mr Cecil came around about 13:50hrs and again said that he was pleased with my progress and that they were thinking of moving me to the ward in the next day or two. At 15:30hrs my chemo was drained some Mum and Tracey left at that point. I was also given a bed bath and the linen was changed by the nurses. I then slept for a bit. I dreamed that I was on a beach with the girls and a very strong wind picked me up and blew me across the water so fast that I was water skiing on the surface, I was getting out of control and steered into some trees at the waters edge before I lost control. Another weired dream.
In the evening Dr Morgan came around (another one of the 5 consultants that was looking after me). During that day I had weed over 12 pints through the catheter! She said that this was a good sign that my system was recovering.
My temperature started to climb today, it went from77.7 to 80 and then 84. The doctor advised that if it didn't start to fall then they would start some antibiotics and then do a scan. I was concerned about sleeping and they talked about giving me something to help me through.
That night I had another bad one. This time I had managed to drop off to sleep but when I awoke I didn't know who I was,where I was or why I was there? This was really scary and really shook me. I must have made a bit of a drama about it again as the nurse came over and had to explain to me where I was and why. It shook me up and I took several hours to calm down from it.

Sat 6th Feb 2010 MOAS +4

2010-02-25T05:45:00.000-08:00

Mum and Tracey came to see me around 09:00. I'd had a really bad night and had hardly slept at all. The hallucinations had come back with a vengeance. In the early hours I remember seeing Mr Cecil sat just the other side of my curtains. He was sat watching me intently. When I looked again he was still there, this time in tears and with his head in his hands, everything was so quiet. A short time later Mum and Tracey arrived. He led them away from my bed to the central desk area. I couldn't hear what he was telling them but I did hear Tracey burst into tears. I could also hear the alarm beeping at the central desk indicating there was a problem at my bed.Nobody came. A little while later my Dad arrived which had meant he must have come up from Bristol. He joined Tracey and mum down at the desks. I could hear him shouting "come on son, be strong you can do do it" all the time I felt things were slowing down and I could hear the alarm on the machine sounding. I was convinced it was the end. I tried to control my breathing, wriggled my hands and feet occasionally but still the alarms were sounding.
A little later the family were all brought to my bed and sat behind me out of sight (as I was lead on my side) and were waiting for the inevitable to happen. I said my goodbyes
"tell my girls I love them"
"I'm sorry, I tried my hardest"
" I love you all"
"Tracey, meet me on the beach"
I even raised my hand. At this point I must have been actually shouting these things as I think I disturbed the lady in the cubicle next door. I'm not sure if it was real or not but I'm sure I heard her say "why is he saying these things?"
The next thing I was aware of was my nurse by my side looking at my machines and monitors. She asked me what the matter was and told me all was ok.
Hang on a minute. Was this really happening or was she just trying to make me comfortable in my final moments?
This was a hallucination, a cruel trick of the mind, I was fine. But it shook me to the core and I couldn't sleep again. It still haunts me now, it was so real, so very,very real.
When Tracey and mum arrived I told them about the hallucination, they could tell I was shaken and tried to convince me that it was all just a dream. I still wasn't entirely sure. I drifted off to sleep and had a good few hours where I was so physically tired. Whilst I was asleep I was again given more paracetamol very slowly.
I awoke at 14:00hrs and was convinced there were mice in the ceiling. My machine would make a "click,click,click" noise every so often and I was sure this was mice in the roof running over the air ducts. I also had mosquito's flying around me!
Mr Cecil then came around on his daily visit and again told us I was doing well. Today would be my last Chemo session and from tomorrow they could start to remove some of the tubes.
My test results came back from the day before and showed that I was all clear. Good news.
Tracey and Mum came back to see me around 18:00hrs and I was relaxed and in and out of sleep. I'd had yet another bed bath and was clean.
We were also told that I'd be moving to the ward that night. Tracey phoned mum who had gone back to the flat. She came back up only for us then to be told that I wouldn't be moving that night after all.
I was worried about sleeping because of the dreams and hallucinations and Mum and Tracey stayed with me until 23:30hrs to try and keep me calm.

Friday 5th Feb 2019 MOAS +3

2010-02-25T05:20:00.000-08:00

I again had a fairly comfortable night. but because I had no windows in the room I had lost all sense of night and day and could not tell what the time was. There was a clock directly in front of me the hands seemed to move really slowly and time stood still. Was it day or night? who knows!
When Tracey and mum arrived I was sat up in bed and they thought I looked a little better. I had been given a bed bath and had my teeth cleaned. I was still very tired though.
Whilst they were there the doctors visited along with Sue. They checked out my wound and the abdominal area and were pleased with progress. The ICU doctor also checked me out and said that it wouldn't be long before I'd be moved to the HDU (High Dependency Unit).
That day the family visited, Jess & Chloe, Joyce,Stephen and Dad. Dad couldn't come in as he had a slight cold and didn't want to pass it on. The girls did not come in either as we felt the time was not right and that it would only scare them seeing daddy in the way he was.
Initially just Stephen and Joyce came in, I was very tired as the physio had again been in and sat me in the chair. As soon as Stephen saw me his face said it all, he was physically shocked by what he was seeing and it was written all over his face. I was too tired to talk and they only stayed 5mins or so before leaving me to sleep.
They came back at 14:00hrs and I was better so they spent a bit longer with me. I had a reaction to the intravenous paracetamol that was being administered throughout the day. It seemed if the drip was turned on too fast I would have some kind of reaction so it could only be administered very slowly. It was strange as they had never come across that before. Again this always made me sleepy.
I did look better that afternoon and as well as moistening my lips with damp swabs I was also given ice cubes to suck. I had an unquenchable thirst.
Again that afternoon the Chemo was drained and the fresh lot administered.
Mum and Tracey came back to see me around 18:00hrs. I was again very tired after having the paracetamol but more settled as it had been given very slowly.
Again the hallucinations were there. I closed my eyes and could see pink fluffy rabbits whizzing around on a roundabout, their ear flapping in the wind!
Again I was hot but in all fairly relaxed. The drain on my left side was leaking a little but the nurse said that this was ok and would not get infected.
I also was convinced that Chris P from the Psuedomyxoma Forum was on the ward getting treatment. I told Tracey to go and check it out as I was convinced he was there. Again this was just all side effects from the drugs. Hallucinations, I was loosing touch with reality.

4th Feb 2010 MOAS +2

2010-02-25T05:00:00.000-08:00

I had a good night and was fairly settled. Mum and Tracey came to see me at 09:00. They couldn't come in straight away as I was with the physio. Despite all the pipes and tubes hanging out of me they were determined to get me out of bed and in a chair nearby. What a palaver untangling everything just for a few minutes in the chair. Whilst all this was going on one of the doctors paid Tracey and Mum a visit and again said how well I was progressing. They soon came back in and spoke with the physio. I used the spirometer but only managed to reach 1000ml when pre-op I'd sent it off the scale at over 5000ml, what a difference in lung capacity. All the exertion took its toll and I was pretty wiped out.
Around 10:00am the hallucinations started. To begin with they were manageable, if only I knew how bad they would get. I started seeing things on the wall behind mum and Tracey. Writing on the wall, a bark effect and cracks in the wall. My vision was also bad and images were flicking in front of me. I was getting hot and agitated.
The doctors came to see me and explained that it was due to the build up of pain killers and chemicals in my system so they decided to turn off the Ketamine. By the time evening had come I had calmed a little but was still hot.
They also swapped my oxygen mask with a tube placed up my nose as this was deemed more comfortable. I still had all the drains in but little were draining from them.
At 15:30 I had another dose of inter peritoneal chemotherapy. Basically they drained off the last lot through my stomach drains and then filled me with a fresh lot which will stay in me for the next 23hrs.
Mr Moran came around in the evening and again confirmed that all was going very well.
Tests were also done on my spittle and urine for infection.

3rd Feb 2010 MOAS +1

2010-02-23T02:08:00.000-08:00

Tracey and Mum arrived in ICU to see me at around 09:30 I was semi awake and aware that they were there. I apparently had a good night and they were pleased with progress so far. They saw Mr Cecil again who confirmed that I had the full Sugarbaker and that some of my rectum and bowel had been removed. He was very pleased with the way the operation had gone and was confident that all the tumor had been removed.
Tracey and Mum then came back just before lunch and found that they were starting to bring me around and were going to remove the ventilator.At that point though I became rather agitated and was trying to communicate something. As I couldn't speak because of the breathing tube the nurse gave me a pen and paper and I wrote the word "Cold" down the best I could. The problem was I was still very sedated and could hardly see what I was writing let alone concentrate on what I was doing. Finally after about the 4th attempt they realised what I was saying and placed another blanket on me.
They came back after lunch and the breathing tube had been removed. Bloods were being taken every two hours and I had a PCA to administer my own morphine when required. I also had my first post operative chemotherapy. The chemo liquid is pumped into the abdomen where it stays for 23hrs and then is drained over the period of an hour and then the whole cycle repeated over the next four days.
I tried the spirometer breathing exercise machine given to me by the physio the day before and couldn't get it to work ( I was blowing rather than sucking!).
I was finding one of my chest drains very uncomfortable so they pulled it out slightly.
I also has special boots on each foot that would inflate with air and simulate walking to keep my circulation in my legs on the move and help protect against blood clots.
My temperature was high all day but they didn't seem too worried by it. I was in and out of sleep all day but the doctor was happy and said I was making good progress and a bit ahead of the game.

The Mother Of All Surgeries (MOAS)

2010-02-20T03:46:00.000-08:00

Tuesday 2nd Feb.....

So it was time, the big day was here. I was awoken at 05:45 and had a quick cool shower ( I had been advised not to make it too hot as this could make me bleed on the operating table!). I got dressed into my gown and was given some tablets to make me relax. I sat in the chair and tried to keep my eyes open. Tracey suggested that I get into bed but I wanted to stay in the chair. Finally the theatre staff came and collected me. I said my goodbyes to Tracey and Mum and then must have been overwhelmed by the drugs as I don't really remember too much.
I do remember going into pre op where the anesthetist said hello and it seemed a number of people started work quickly. I vaguely remember her telling me she was putting in a cannula and that she was giving me some drugs and the that was it. Lights out, good night Irene!

Tracey and mum sat in my room for a bit and composed themselves as they were both upset. My bags were collected by the nursing staff and locked away. Tracey and mum went back to the flat. The first call from the surgical team came in at around 13:30hrs and advised that the extent of the disease was pretty bad and that they had removed my spleen,gall bladder and had re sectioned some of my bowl which would mean a temporary stoma.They also suggested that they were confident that they could get all the tumor.

The second call came in at 17:30hrs.It was Mr. Cecil. He said that all the tumor had been removed and that I was getting the chemo and was doing OK. Once the chemo was done they would then start to stitch me back up and he expected me to be in ICU about 22:00hrs.

The third call came in at 21:30 to say that I was in ICU and that I was doing fine and that they should be able to come see me . Tracey and mum were finally allowed in at 23:30hrs to see me. I was on a ventilator and had lots of tubes and pipes attached to machines-
6 x stomach drains
2 x chest drains
1 x catheter
1 x nasal gastric tube
1 x ventilator
1 x central line (in neck)
1 x epidural
cannula's in wrists.

Tracey and mum stayed for approx 1/2 hr and then left as I was still sedated.

I spent a total of 12hrs on the operating table.

During the operation they performed-
A midline laparotomy excising the umbilicus.
They found desiese on the surface of the liver,some desiese on the antrum of the stomach,on the spleen, both right and left diaphragms, a lot of desiese in the pelvis involving the rectum,some desease on the ceacum and terminal ileum and desease on both paracolic gutters. The good news was that there was no desease on the small bowel.
The right paracolic gutter was stripped.
A right hemicolectomy.
Stripped the left diaphragm and mobilised up the spleen.
A greater omenectomy taking the gastroepiploic vessels off the stomach.
Removed the spleen and omentum.
Stripped the right diaphragm.
A lesser omenectomy.
Stripped the porta-hepatis and did a cholecystectomy transfixing the cystic ducts and cystic artery.
A diathermy liver capsulectomy with high power diathermy.
Stripped the left paracolic gutter.
A pelvic peritonectomy.
An anterior resection as the rectum could not be sepearted from the desease.
Having remouved all the macroscopic desease I was then given 1 hour of heated intra operative Mitomycin C at 41 degC.
An end to side anastomosis of the colon on to the rectum.
A hand sewn 2 layer anastomosis with interrupted 3/0 PDS of ileum on to ceacum.
A right iliac fossa loop ileostomy.

One day to go.....

2010-02-18T11:35:00.000-08:00

Monday 1st February.

Today was a busy day. I was started on more Ducolax first thing and then the consultants started to arrive. I was visited by Susan the specialist nurse, the anethatist, two of the surgical team,the physio therapist who gave me a lung capacity test and was surprised when I litrally blew it of the scale! It was the fist time he'd seen it! How different things would be after the operation.
My obs were taken regularly and every time my blood pressure was up. I think it was starting to concern the nurses, it was mentioned to the consultant but I explained that I suffered from "white coat hypertention" and that seemed to satisfy them.

The day ticked by quite quickly and I was surprisingly relaxed. In the afternoon I was given a third dose of the Ducolax and this finally started to work.
That evening we were given the tour of the Intensive Care Unit (ICU). that was scary, seeing all the machines. But every bed was attended by one nurse and again the atmosphere seemed fairly relaxed.

Then that was it ,everything done. Tomorrow was the big day. The nurses would get me up early to allow me to have a shower and clean my teeth etc... I would be taken down to surgery between 07:00 and 07:15. Tracey and mum would be there to see me off.
I would also be given some medication to sedate me a bit and settle me down.

From this point onwards Tracey and Mum would keep a diary that I will transcribe as I was clearly unnable to do it myself.

MOAS -1 day.

Basingstoke-THe Big Day arrives

2010-02-18T11:14:00.000-08:00

Sunday 31st January.

Finally the day we had dreaded arrived. We were all packed and ready to go. Mum and Dad arrived at 09:00 to pick us up. We wanted to get on the road early and ensure we had plenty of time to get to the hospital. It also meant we got our goodbyes to the family out of the way quickly and did not have time to dwell on it.
I held my girls tight in my arms and we all cried, was this the last time I would hold them?
I tore myslef away and we got into the car. We were soon on our way.

We arrived at the hospital early which gave us a chance to get Mum and Tracey settled in the accomodation. There was some initial confusion which meant we ended up in a right dive of a place but that was soon sorted and we ended up in a fully furnished flat that was more than adiquate.
I then headed up to the ward for 12 noon as per my letter. I was shown to ward to C2 and assigned to room no.1. I was surprised to find that it was a single room with en-suite bathroom. More than comfortable. The nurse advised that the doctors would not be around till 14:00hrs and we were free to do what we wanted till then. We headed back to the flat and I gave Tracey some last minute coaching on the netbook!
Back to the room at 14:00 and we sat and waited for our first visitors. I was soon handed my first cup of magic potion to clear out my system.I was dreading this part and was now not allowed to eat and could only drink clear fluid. Surprisingly the first cup of Ducolax didnt take effect.
Later that afternoon Mr. Cecil arrived to go through the consent form. I didnt look at the small print, just signed it.
After that we had a quiet afternoon and evening. I was given clear soup and jelly for my tea, more than I expected.
That evening Mum and Tracey left and I made myself comfortable and watched a DVD. This ward was great!
Tommorow would be a busy day......

MOAS -2 days

TWO Days to go.......

2010-01-29T10:27:00.000-08:00

Friday 29th January 2010.

I felt better today after another good nights sleep. Popped into Kingswood to get the car tax sorted and and do a few other jobs.

Then I had to do probably the hardest thing I have ever done in my life. The one thing that I had been putting off but knew I had to do it........write my letters to the girls and Tracey. I was determined to do this just in case things dont go to plan and I dont come home from the hospital. It was awful and upset me terribly but I'm glad its done. Afterwards my head was thumping and I felt physically sick. I spent the rest of the afternoon cuddled up to tracey and we just sat and talked. It was nice.

I'm also training Tracey how to use the video conferencing so that we can all talk to the girls and dad via Skype and MSN. She's picking it up well and becoming quite the surfer on the web!

MOAS -2 Days.

THREE Days to go......

2010-01-29T10:18:00.000-08:00

Thursday 28th January 2010.

Today we did the last of the weekly shops before going to Basingstoke. making sure we got all the supplies in for Joyce and the girls.
Tracey and I then went to the pub for lunch. We decided that we should have an early Valentines meal as we wont be able to do it on the day. We had a nice time just the two of us at our favourite local country pub- The Cross House at Doynton.

My brother came to visit in the afternoon and we again played around with the new technology and set up the wireless network on the WII so the girls can surf the net via this too if they want.
I was tired and had an early night. Again using my sleeping pills to help me nod off. I dont want to become relient on these but I feel its important to go into the Operation with the body well rested even if its chemically induced!

MOAS -3 days

FOUR Days to go.......

2010-01-29T10:07:00.000-08:00

Wednesday 27th January 2010.

Today was not so good. Tracey and I were both tired and so we had a quiet day. Mum came around for a cuppa and we just generally took it easy. I also had some goodies delivered andon the evening Jon came around and we set up the wireless router to allow me to log on from the comfort of my bed when I come home after the op. I'm sat in comfort now typing on the sofa and it works great. I was glad to see Jon he has been a very good friend to me over the last few months.

I am accutely aware that the time is ticking away. You cant help it and silly things pop into your mind like "thats the last time I'll do so and so for a while..." its weird. I'm definately getting more tense now and choosing to have this week off from work was a wise move as I wouldnt be able to have concentrated on what was going on.

MOAS -4 days

FIVE DAYS to go.......

2010-01-26T09:35:00.000-08:00

Tuesday 26th Jan 2010.

We slept much better last night and feel so much better today for it! We have been busy packing our bags and getting everything ready today. Another good nights sleep and I think we'll be ok.

Its hard to believe that this time next week I'll probably just be coming out of surgery or in the Intensive Care Unit. Scary stuff!

MOAS-5 days

SIX DAYS TO GO......

2010-01-25T09:44:00.000-08:00

Monday 25th Jan 2010

So thats another day gone and, as promised I have just a few lines to write about how we are doing.
Last night was another rough night where neither of us slept. Its what I was afraid of really. I dont feel like I'm worrying too much but I must be. I cant switch off. I dont want to be wiped out before I'm even admitted due to lack of sleep so tonight I think I'll make use of the magic pills from the doctor!

I think we are just about prepared now,the accomodation at the hospital is sorted and every thing else is taken care of.

Just need to make the most of the next few days with my family now.

MOAS-6 days.

SEVEN DAYS to go........

2010-01-24T10:20:00.000-08:00

Sunday 24th January 2010.

One week to go. This time next week I'll be in Basingstoke and the pre-operative preparation will have begun. I'll be unable to eat food and only allowed to drink clear liquids.

I finished work on Friday. It was a tough day. The morning started well as I was able to keep busy and my mind off things. I then met all my friends and colleagues down the pub. There were loads of people and my bestist mate Jon arranged for part of the pub to be reserved for us! Lots of people came and it was great to see everyone.
I then did a tour of both sites saying cheerio to everyone who couldn't make it to the pub. I was hard and on a number of occasions I felt quite choked. I have worked for the company for 11 years now and made many friends many of whom I'm sure will be friends for life.
I made it back to my desk around 15:30 ready to clear up and was on the phone when I realised I was surrounded! I had a feeling there might be some sort of send off and was dreading it as I knew I would find it hard. My boss did a speech and handed me some cards, full of signatures and messages of good luck. There were also some vouchers and I was astonished as to how much they had raised for me. But that wasn't all. I was handed a box that was gift wrapped and told to open it carefully. Inside was a brand new net book. I was overwhelmed. I tried to do a speech but lost it half way through and that started some of the girls off! I cant even remember what I said and when I sat down after I was shaking! I was gobsmacked. I never in a million years expected that and it blew me away. It will mean that (as it has a web cam) both Tracey and I will be able to use it to video call the girls and see them every night. Something I know that Tracey will really cherish as she has been really torn between me and the kids and dreading leaving them.
For the first couple of weeks after the op I will probably be too ill to use it. But Tracey will be able to update everyone from the room at the hospital.
Once I'm back in the land of the living I too will be able to see my girls and of course mail my friends,update facebook the pseudomyxoma forum and of course this blog.
I owe an absolutely huge thanks to everyone at work for their kindness and generosity. Its really shown to me just how many really good friends I have and is very much appreciated from the bottom of my heart.

I had my last Sunday roast for a while today. Seems strange that these simple things we take for granted will just be taken away for a while. I think some things will change forever from next Sunday.

I have the week off now to spend with Tracey and the girls and get things prepared. We have already started saying cheerio to friends and family and are expecting a constant stream of well wishers this week. I'm a little worried that the free time and lack of work to distract me will allow me time to think about things. Friday shook me and I didn't sleep well after the emotional day. Last night or rather this morning I finally dozed off at 4am after some chemical help and I'm really tired now. An early night is in order I think....

I'll post daily now in the run up to the op.

MOAS -7 days.

The big day looming ever closer.....

2010-01-17T06:15:00.001-08:00

Sunday 17th January 2010

This week has been prety good really. With the big day looming ever closer its always at the back of my mind now. Its like a dark cloud looming ever closer and although you may be busy in the sun you are aware of it slowly creeping up on you with no where to run.

Work has been busy and thats a good thing. Its kept me thinking of other things and has been quite tireing but this has meant that I'm remaining pretty positive and am sleeping pretty well at night too.

Its my last working week this week before the operation and we have arranged to meet at the pub to say cheerio to all my freinds and collegues for a while. That will be tough.

I have been in for more innoculations this week. Pneumonia, Meningitus and something else I cant remember. These are to basically offer more protection if my spleen is removed which is pretty certain to happen. I also had an MRSA screen.

Freinds have begun to pop by to wish me the best. Many of whom now I wont see until after the operation. Thats also tough.

We are meeting with my parents this afternoon to start to plan things. Tracey and Mum need to get organised for their stay and ensure that they have everything and are prepared.

I need to get sorted now too. I wont need much, PJ's, smellys, books (although I'm not sure I'll be able to concentrate on these), DVD's & MP3.
I also want to write letters to my beutiful girls before I go.....just in case. The very thought of this brings tears to my eyes even as I type but I have to do this.

I have decided that as I wont be able to post to this blog for quite a while I'm going to ask Mum & Tracey to keep a diary for me whilst I'm in hospital. I want them to start right from day one and for it to be as detailed as possible. I'll then trancribe this to the blog retrospectively as soon as I am able to do so.

The clocks ticking and the dark clouds are looming.......tick, tock.....

But right now believe it or not I am positive. I know what needs to be done and have an idea of whats to come. I have been out running again this week and will run again next week. It helps keep me sane, gives me something to vent my stresses on and of course, most importantly keeps my cardio vascular system in good condition ready for the op.

MOAS -14 days

Christmas, New Year and the last big adventure (for a while.....)

2010-01-10T11:04:00.000-08:00

Sunday 10th January 2010.

Its been a while since I have posted so I thought it was time for an update!

Christmas went very well all things considered.We all had a great time and Christmas day was spent with the family. Its like I always say....."put the effort in and you'll get the rewards back". We did put in the effort and it was great!

New Year was spent with the family and friends at the local rugby club.Again it was a great night. The turn of the year was tough though, we all had a few tears as our thoughts of whats to come filled our heads. But 5 minutes later we were all back dancing and having a good laugh!

I did manage a day out walking too. Rather than the usual Christmas caving trip we headed for the Brecon Beacons and went walking instead. Corn Du, Pen-Y-Fan and Cribbin were under a thick balanket of snow and ice and it was a challenging day. We all finished up with a great meal in a local pub!
I'm lucky I am still symptom free and can therefore do these things. There are many PMP sufferers whose lives are awful prior to treatment.
I think it was my last big adventure for a while......

I spoke to the hospital last week. Some good news. The last lot of bloods that were taken showed that dispite my liver being surrounded by the tumors its function is normal. My renal function is also normal and I'm not anemic. The tumor markers remain high though....and I guess thats to be expected.

The flat is all booked for Tracey and my Mum so we are all ready to go.

I have been feeling well. No symptoms make that easier but mentally I'm also well. Apart from a couple of nights troubled sleep (for which I have some chemical help!) I feel OK. I have been swimming with the kids and running regularly too. I have to remain as fit as possible and keep my cardio vascular system in the best condition possible to put me in the best position possible to get through such a massive op. I'm running for my life now!

MOAS -21 days

Christmas Eve 2009

2009-12-24T05:12:00.000-08:00

Its Christmas Eve 2009. I'm currently sat in work waiting to go home. The family have all gathered at home and are waiting for me. The girls have stayed at Mum's the last few days and been to the Theatre Royal in Bath to see Sleeping beauty.
Its been snowing and the country pretty much brought to a standstill. Things are starting to melt now and the frecast is for a warmer day tommorow.

We are all prepared and looking forward to the time off. This year we are determined to have a good Christmas and make the most of our time with the family. We are not going to let things spoil the festive period and wont now worry about the op until the new year.

Merry Christmas everyone!

MOAS -38 days

"The letter" arrives.....

2009-12-19T11:59:00.000-08:00

19th December 2009

"The letter" arrived today. I am to be admitted on the 31st January 2010 at midday in Basingstoke. The MOAS will be performed on the 2nd February.

We knew it was coming but it didn't make it any easier and Tracey and I were both upset by it. It has to happen, I cant not do it, its the only way forward. Its just such a huge thing and no-one really knows what the outcome will be.

Merry Christmas eh?

The countdown begins.....

MOAS - 44 days and counting....

Firming things up.

2009-12-12T11:50:00.000-08:00

Wednesday 2nd Dec '09.
We drove to Basingstoke to meet with the team looking after me again. This time Mum & Dad came too as I wanted them to hear everything that had to be said. The appointment was later in the day so we got the girls off to school and had a fairly quiet morning.
The drive to Basingstoke was good and the traffic was kind.Tracey was nervous, even though we knew what was going to be said it was still difficult for her to hear. I felt OK, prepared for what I was going to hear but was tired from the recent sleepless nights.
We met with Sue and Tom again and looked at the latest CT scan. There was no real significant change to the images. The mucus pretty much surrounded my liver, appeared in pockets on my stomach and around the lining of the abdomen. There was also a possibility of some in my pelvis around my back passage but it was not clear and only when I was opened up would the true extent be uncovered. My bloods had shown that the tumor markers were elevated and this really confirmed that it was PMP that we were dealing with.
Tom told me that they planned to do the MOAS (mother of all surgeries as its known to PMPers) in late January or early February 2010. The fact that I was still symptom free was a good thing and meant there was no need to rush me in. We were to try and have a good Christmas and New Year and then concentrate on the operation after.
He told me that my prospects on paper were good. I have age on my side and have always kept myself fit and eaten well. However most people will suffer some kind of complication after the operation, some of which can be life threatening. The mortality rate for the operation was around 1%.
The one thing that he did add was that he was hopeful that they might be able to save my Gall bladder as there did not appear to be too much desiese in that area.But again until I was opened up the true extent would not be known.
So we left the meeting with no more nasty surprises which was a good thing. The meeting was pretty up beat and Tom seemed fairly confident that the desiese could be removed.
As had become routine I had the usual stop at the blood clinic to have further blood tests done. Six lots of blood were taken.

We made our way home, it was dark and raining. Tracey sat next to me in the back of the car quietly sobbing. I held her hand.

We came home and eat dinner. Chloe arrived in late full of herself after her Christmas carol concert at the Colston Hall and this cheered us up no end. Apparently her freinds mum had taken a home movie of the whole thing and would do us a copy so we could watch it back.

I had taken the following two days off as holidays to do some Christmas shopping and it was a good job I had. The following day I was a mess. I handnt slept again and was feeling low. We did manage some shopping but I managed to leave a bag behind in the shop and was generally a zombie.
We had made an appointment with my GP for that evening to discuss things. I wanted to get vaccinated with both the Flu and Swine Flu jabs so I didnt get caught out with either after the op as I would need all the help I could get with the recovery.
At the appointment I ran through what had been happening. It was the first time I had spoken to my GP about it and it was probably well overdue. The stress combined with the lack of sleep in recent days meant that I was very fragile and I had a few tears. He agreed to give me something to help me sleep on the days that I was struggling. I think these will be important in the week immediatly before the operation.

I went home, had an early night and slept well. The next morning I was a compleatly different person. Back to my old self. Tracey and I went into Bristol and finished off the Christmas shopping. I felt good again.

The following week my good mood was improved more when my plaster was removed from my arm. I hadnt realised how much it was getting me down and it felt like a real weight was lifted when it came off.
The following day I went for my first run in 8 weeks. It felt great, I took it easy. Just a nice flat 4 miler to get started. It is now imperative that I stay injury free and get as fit as possible for the MOAS.

So this brings me up to date as of now (16th December '09) all entries now will be as things happen and real time.
So now we are waiting for the date for the MOAS. Once we get the letter the countdown begins. We are planning a great family Christmas. I have been told that I cant go caving for between 6-8 weeks until my wrist heals properly so instead of the usual christmas caving trip to OFD or Agen Allwedd we are planning to go walking instead. I cant wait.......

The Hammer Falls again......

2009-12-04T15:08:00.000-08:00

So once again we were waiting......
This time for the date for the CT scan. We decided that we wanted to do this at Basingstoke so that images wouldnt get lost being transferred from Bristol. Also the scanner at Basingstoke was apparently better and the analysis of the results would be better.
It was still late summer so I decided to take a two week holiday with the family and try to get back to as normal as possible. We took the kids to Wookey Hole,Stourhead,The American Museum,The Bristol Harbour Festival and The International Balloon Fiesta. We also stayed with my aunt in wales for a few days and did a couple of days out there. It was a great time and for a while we did almost forget what was going on...well nearly.
The date for the scan came through, it was the 15th October '09 at 10:15. This time as it was only a scan Tracey and I drove up on our own. A few days before I had fallen and managed to break the scaphiod bone in my right wrist! The Fracture clinic at Frenchay wanted to plaster me up but decided the drive to Basingstoke was more important so I was given a support for a few days and was then plastered up! As had become the norm the visit also meant that blood tests were going to be done so a trip to the bloods clinic was first. only two tubes this time checking the tumor markers.
Then it was back to the CT scanner. I changed into the hospital gown and had a cannula fitted so the liquid could be administered when I was in the scanner. I found myself stood looking at my reflection in a window, hospital gown on, plaster on one arm where the bloods had been taken,cannula in the other and my wrist in a support waiting to be plastered. What a sorry sight!
I had drunk the special liquid over the last hour that helps produce the scanner pictures and was now dying for a pee! The nurse showed me into the room and led me down on the bed. Pictures of birds adourned the ceiling. I was passed through the scanner and then again the cannula conected. Lying still I heard the familier instructions...." breathe in....breathe out....breathe in....and hold......"
The scan was soon over and I was dressed.We had been turned around in double quick time and had a quick bite to eat and were then soon on our way back down the M4.
The following day I went to Frenchay on my way home and my wrist was plastered.

We waited about two weeks or so for the results and then I got the call whilst I was in work.
The results were not great. Any hope that the liquid might have been absorbed were dashed. There had been a slight increase and one of the tumor markers was up.
Its what I expected and had built myself up mentally for but I couldnt help clinging into the slim chance that the body could have re-absorbed the liquid. I was down again, this meant the operation was definately on.The hammer had struck yet again.
I was the only manager in the office that day, ideally I could have done with the day off as it was hard to concentrate on what I was doing and my mind was elsewhere. however I needed to be there to keep things running and in hindsight it probably wasnt a bad thing. We didnt sleep well for a few days, it started to become a pattern. A few days before an appointment and then afterwards neither Tracey or I would sleep well. You became tired and that only made things worse and more depressing. Then after a day or two things would start to return to normal and you would catch up on sleep and feel better again.
So that was that, the op was definately going to be on. We now awaited another appointment with Tom Cecil and Sue Alves to go through the results in more detail and find out when the operation was likely to be done.

During these few weeks Tracey started to do what we said we wouldnt and trwled the internet for information. We had been warned against it as alot of grim reading was out there, but we also found some gems. We are also pretty level headed. There is some real bad stories about life expectancies and re-occurances of the desiese but also some encouraging stuff. Every person is different, each case is different, some of the data on the internet is now old and out of date.
During this time we read some great blogs from other survivors and also our best find was the Pseudomyxoma Forum at the Christie hospital in Manchester. The welcome we had here was great! A real family atmosphere of people who have been treated, are undergoing or are awaiting treatment at both the Christie and Basingstoke.

In the weeks that followed we also started making preparations at work for the time I was out of the business. Katy my assistant was leaving mid Jan on maternaty leave and I had a feeling that would pretty much co-incide with my departure. So job adverts went up for two roles in my department, one for maternaty cover for Katy and the other a 6 month fixed term contract to cover me whilst I was away from the business. I would interview for both roles.

Finally the letter came through with a date for the next meeting. On Wednesday 2nd December we would meet both Tom Cecil and Sue Alves again to go through things and agree a date for the operation. Again my parents would come with both Tracey and I to hear what had to be said themselves.

As the time drew closer Tracey became more depressed. We knew what was going to be said it was just simply hearing it. My youngest daughter Chloe had a school concert down at the Colston Hall the same evening singing christmas carols. A once in a lifetime opportunity and we were going to miss it as we had a late appointment in Basingstoke and would not be back in time. Yet another thing that this Cancer had taken from me.
As the day drew neared again sleep became an issue. Id been pretty busy at work trying to get my board report done on time, interviewing for both Katy and my jobs and again starting rate negotiations with our carriers. I could really have done with a good nights sleep but just simply couldnt drop off and to top it all now had a mild cold haning around. I was struggling...

The Waiting Game....

2009-11-24T04:42:00.000-08:00

So that was that, we now had to wait until October for the next CT and blood tests to put a marker in the sand and see how things were progressing....

The meeting had been far more up-beat and encouraging than anything we had done before. We had been given a leaflet by Sue that detailed what would happen with the operation from the point of admission right up until the point of discharge. This was very informative and allowed us to mentally prepare for what was to come and internalise things.
From the leaflet and the discussions at our meeting we found out that the operation is always performed on a Tuesday and you are wheeled into Theatre about 7 am. You are admitted on the Sunday beforehand for assessments to be made,inoculations to be administered and general preparation for the operation to begin. A visit to the Intensive Care Unit is also included to allow you and your family to prepare yourself for what you will see immediately after the op.
The operation lasts on average some 10 1/2hrs and you are kept sedated throughout the Tuesday evening and providing all is well gradually brought around throughout the Wednesday.
You can expect to stay in the ITU for up to a week and then get transferred back to the PMP ward for recovery. The average stay in hospital is around three weeks and I should expect to be off work for three months.

It sounded pretty full on.

We now had time to prepare. We needed to make lots of plans to ensure that our stay at Basingstoke was as smooth as possible and not have to worry about other things such as finances and the like.
We booked meetings with our financial advisor and reviewed insurance policies. We Met with the Macmillan/ Citizens advice beuro team who work together to support Cancer sufferers to find out if we were entitled to anything. Its worth stating at this point that Cancer sufferers are exempt from paying prescriptions and all you need to do is fill out a FP91A Exemption from prescriptions form and get your GP to sign it and away you go.
We also made plans regarding the children's care whilst we were away. My aunt has volunteered to come stay with them for the duration of my stay at Basingstoke and the rest of the family would chip in and help.
It is important for me to know that all these points were covered so that when I finally get admitted for the operation I can simply worry about myself and getting better rather than if bills are getting paid and whether the kids are being looked after properly.

At the same time it gave us the opportunity to think, to prepare for what is to come. This suited me as I take time to internalise things and build myself up mentally.
All kinds of things run through your mind. Will I survive the op? Will I suffer any complications afterwards? What will my quality of life be like? How will I manage with a stoma if I needed it?
Its funny, all your life you just carry on happily doing the day to day things comfortable in the knowledge that you are well and making plans for the future. Holidays,family days out,birthdays and Christmas. Subconsciously looking into the future with a picture of what you want to do and places you want to go.
I don't have that, I used to. I don't anymore. Just a black,blank space where the future used to be. I cant get it back until the operation is done and I know I have pulled through and hopefully PMP free.

You don't realise until you are in this position just on how many levels Cancer takes things from you. Physically, Mentally, Financially. I love my job and enjoy what I do for example. My employer has been fantastic throughout and I cannot fault them in anyway. But I have a pretty high profile role within the business that needs to be covered whilst I'm away. So at present we are looking for a person to cover me whist I'm off. Its tough though, I know my job is there for me when I come back but it still doesn't make giving away your job any easier. What if I don't come back? What if I cant do it afterwards? What if the person who covers me does it better? What if.....What if.... And the trouble is no one can truly answer that question.
So all I have is hope.

And we have allot of that! I'm fit, I always have been and I eat well. I don't drink (well just a little!) and I don't smoke. That must count for something even if it simply means I will recover faster.

We also decided now that we had time to come to terms with things it was time to break our rule and start researching this thing on the Internet. We needed to be prepared so that we could ask informed questions where required. We needed to make contact with support groups and other sufferers to ask them questions and talk to them about their experiences. It was time to take this PMP bull by the horns and !kick its ass!" as became our saying!

The First Meeting at Basingstoke.

2009-11-21T13:03:00.000-08:00

We had been given the bad news and were now waiting for our first consultation at Basingstoke.
Lesly had told me it could be 3-4 weeks before I was seen which seemed ages to wait after such bad news. We just wanted to know what was going on and how quickly I would be operated on.

We decided that we would carry on as normal. I was not affected with any side effects so no reason to change anything. It would keep some normality for the children and keep our minds busy with work and so on helping to keep us in a positive frame of mind.
We did vow not to go onto the Internet and research the condition as we were frightened as to what we might read.

So as normal as possible we kept things. I returned to work. I felt well in myself and continued to run 4-5miles twice a week in my lunch hour and longer at the weekend. The summer was here so I dug out the fishing gear and spent a few Sunday afternoons at my favourite little lake just up the road. i also made a return to caving after leaving it some time after my appendix was removed. Only an easy tourist trip into Swildons Hole on the Mendips taking a few friends down to sump one and back.

I made contact with the team at Basingstoke. I wanted to introduce myself and had a lengthy conversation with Susan Alves about what would happen next. Again she indicated that it would be some time before we were seen as my notes had to be transferred and the CT images analysed by the team at Basingstoke.

Finally the letter arrived, I was to meet with Mr Cecil on Wednesday 19th August at 10am.

We decided that both my Mum and Dad should come too so they heard everything that was said for themselves "straight from the horses mouth" so to speak. My Aunt who has been a good send throughout would come and sit with the girls.

We left early on the day of the appointment as we had a 1 3/4hr drive in front of us and didn't really know how to get there. Luckily the Navman did!
We arrived at the hospital and made our way to the outpatients clinic. We were soon shown in by Sue and met Mr Cecil.
Mr Cecil asked me to talk him through the sequence of events leading up to my appendix perforating. He examined me and then we discussed in detail the various aspects of PMP whilst looking at my CT images.
He explained that PMP was very slow growing. I had evidence of it around my Liver,Stomach,Spleen and in my pelvis. The right side of my abdomen was pretty clear as this had probably been cleared out during the appendectomy. He advised that the small amount of fluid seen had probably been in my abdomen for between 5 and 10 years!
He told me about the operation. He explained that I would probably need-
- A midline laparotamy with excision of the umbilicous.
- Stripping of both diaphragms.
- A diathermy liver capsulectomy.
- A Cholecystectomy.
- A greater and lesser omentectomy.
- And either a diathermy capsulectomy of the spleen or spleenectomy.
- A right hemicolectomy or possible excision of the appendic stump.
- And possibly a anterior resection.

If all the disease is then removed then an hour of intra-operative chemotherapy and possibly some post operative chemotherapy.

it was decided that a second CT scan should be done in October as there is often a lot of fluid left in the abdomen after the initial appendectomy and there was a slim chance that the body could re absorb this fluid.
If the fluid stayed the same or grew however, we would do the op.

And that was it.

The meeting was far more upbeat. The team seemed confident that there was something that could be done and whilst there are no guarantees there was a good chance things might work out OK. The statistics were that for two out of three people operated on they would remain disease free at three years post op. The odds didn't seem totally stacked against us. We all felt better and probably more positive that we had been for a long time.

I headed to the bloods clinic where blood was taken to check tumor markers.
We stopped in the cafe and ate some lunch and then headed home.
May be the PMP rollacoaster had just turned a corner slightly?

Another blow of the Hammer

2009-11-14T12:17:00.001-08:00

We were feeling down.
The shock and mental stress of the Appendectomy were only just out of the way and suddenly I'm told I have Cancer. It knocks the wind out of you and you feel sick in the pit of your stomach.
So much runs through your mind....can I get over this? Why me? Am I going to die? I have known people who have suffered from this terrible disease and fought hard and lost. Will that happen to me?

The CT scan date arrived and I again left work early to go get the scan done. Work had been fantastic and incredibly supportive, giving me time off to deal with all the appointments I needed to take and offering help wherever possible.
I arrived again at Southmead hospital and found the waiting room. I had not eaten for four hours beforehand and had drunk a liquid dye the hospital had sent me prior to the scan. The waiting room was small and again it was a warm day. I went in and sat down. To my left were two older ladies with no obvious ailments. Directly in front of me however was a lady who was clearly undergoing treatment for cancer. She wore a headscarf and was pale and her skin was grey. I couldn't help but wonder if that was I was going to look like at some point in the near future?
My name was called and I was shown to a cubicle. I had to put on a hospital gown and a cannula was inserted into my left arm. I waited quietly in the cubicle until my name was called.
I was soon led into the scanner room. In front of me was a big machine. Not the long tunnel you see on the television used for MRI scanners but a smaller version we have nicknamed "the donut". I led on the bed and was made comfortable. The bed was raised and then moved through the donut. On the other side I was asked to raise my arms above my head and the cannula was connected to the machine. The staff left the room and the machine was started. Its not too noisy and there are verbal instructions given to the patient throughout....."breathe in.....breathe out....breathe in and hold..." at this point some sort of liquid is given via the cannula that must react with the liquid you have drunk to dilate the blood vessels throughout the body. Its a strange feeling your whole body feels hot and it feels like you have wet your pants!
Within a few minutes its all over. Back to the changing room and the cannula was removed and I was off home. Now the wait for the results...

An appointment came through for me to go back to see Ms Burt and Lesley Atkin. Lesley also rang to suggest that Tracey comes to the appointment too as I had come away from the first appointment not quite fully understanding all the points discussed.
We arrived at Southmead and sat in the waiting room at the Colorectal ward. Finally we were called in. We walked through the consultants office and into a lounge like,very comfy room. My heart sank. This didn't bode well.
We sat down the mood was sombre.
Ms Burt did most of the talking. Basically the CT scan had shown a mucinous like jelly coating the organs in the abdominal cavity. It was a very rare type of Cancer known as Pseudomyxoma Peritonei. It was a very rare type of cancer that effects one in every million people. Because of the nature of this cancer it cant be treated by conventional chemotherapy. Instead the usual treatment is a huge operation known as the sugarbaker technique. Because of the seriousness of the operation and the specialised nature it was not an operation carried out by normal hospitals and I was being referred to a specialist center in Basingstoke.
Tracey burst into tears and I was close to it.
This was bad.
"So what are my chances"
"You are a prime candidate for the operation,fit and well. But people do die from this condition."
"the other thing we must stress is that this is a very slow growing cancer"
The rest was a bit of a blur (again). We were handed a information sheet about the condition and the details of the specialist nurse in Basingstoke who would now be handling my case. An appointment would be made there soon for me to meet the team.
We composed ourselves and left. This was by far the lowest point we had been.
We got out side and Tracey again broke down, I held her and we cried together. Our world was shattered.
We drive home in silence, both of us numb.
We got hame and once through the front door Tracey again broke down, this time her legs going from under her and in hysterics. We sat together and cried some more.
I rang my parents and asked them to come up.
They arrived only ten minutes or so afterwards along with my brother. We broke the news. More tears. At this point Tracey read the leaflet that we were handed. I had avoided it up until now but had to read it. It was bleak reading.
" I don't stand a chance" I said and broke down again.
My parents left for a bit. Mum was unable to cope with the news.

When the girls came home from school we decided to tell them the news. There was now too much at stake and too much going on to keep it from them any longer. we were careful what we said but told the truth throughout and vowed that we would tell them everything (within reason) from this point on.

Mentally I felt like a nail being driven into a piece of wood. Blow after blow of bad news and I simply wasn't sure how much more I could take. This is the best analogy I could use to describe how I felt.

I visited work the following morning to inform them of what was happening. I took a few days of to come to terms with what I had been told.

The First Bombshell

2009-11-13T05:11:00.000-08:00

I left work early on the day of my appointment at Southmead Hospital. I was meeting the consultant Miss Burt and the specialist nurse Lesley Atkin. It was a hot day in June and the waiting room was not air conditioned and stuffy. As usual they were running a good hour behind....
I was feeling well and had recovered from the Appendectomy. As far as I was concerned this was a post operative check up to ensure that all was going well. My name was eventually called and I made my way into to an office where Miss Burt was sat behind a desk and Lesley to her right hand side. The desk was in the middle of the room and behind was a bed with the usual curtain rail around for physical examinations.
The introductions were done and the mood of the meeting was sombre from the start. Both Miss Burt and Lesley were very quiet and got straight to the point.
Basically when the appendix was sent to the lab for a biopsy after the operation they had found a problem.The lab found that I had a "muanous cystadenoma with associated low grade muanous adenocarcinoma" whet the hell did that mean?
Cancer, I heard.
At this point it all became a bit of a blur. There was some talk of one of the things they had found as being benign or benign like. I was told that I would need to come back and get a CT scan done. I told them that I had already got an appointment for this.
They also said I would have to come back for a colonoscopy and very likely to have to come back for another operation- a right Hemicolectomy. Oh no.
The CT would give them more of an idea of the problem along with the colonoscopy and enable them to put a care plan together. I was briefly examined and they were happy with the way I was recovering from the Appendectomy. I was handed The Patient Information Card for patients who had undergone a colorectal investigation and that was it.

I walked back to the car in a state of shock. I had cancer. But the shock meant that I hadn't taken in the conversation properly and didn't fully understand what was happening or my condition. I drove home, typically the traffic was congested,it was hot, I was fighting back the tears and in a state of shock. How was I going to tell Tracey?

I arrived home and found Tracey sat in the garden sunning herself and the girls out playing.
"come inside we need to talk" I said
"Eh?"
"Come inside"
We sat in the front room and I burst into tears and told her what had happened. She questioned me and I couldn't provide the answers as I hadn't heard what was said to me properly and could only really clarify what was happening in the next couple of weeks and handed her the Information Card.
Tracey was upset. The girls came in and we told them to go back out and play. We rung my parents and my brother and asked them to come around.

Later that night we broke the news to them. My mum was devastated....

That was just the first blow.....

Recovery from the Appendectomy.....

2009-11-06T08:18:00.000-08:00

I was on a mixed ward at Frenchay Hospital. In our room there were six other chaps all of whow were recovering from various operations. Gall bladder removals seemed popular and one lad had been flown in from Gloucester after a nasty bike smash and had a cage around his leg where the surgeons had attempted to re build it.
I found the ward very noisy. At night the lights were only dimmed and of course the nursing staff carried on their busy duties. One old fella at the end of the ward was obviously suffering from some sort of dimentia and would spend the entire night shouting and wandering the ward.The nurses struggled to cope with him.
My first night I was still awake at 3 am when a nurse told me I should be sleeping....the chance would be a fine thing!
The following day I resolved to ensure I asked for something to help me sleep when the meds were handed out at bedtime.
The days went by ok. Tracey would be in to visit as much as she could and it was hard on her having to juggle the kids and come visit me,especially as she didnt drive.
I had books and magazines to read and my MP3 to listen too but felt too tired to concentrate on any of these.
I still had a drip in and was on high dose antibiotics as well as taking pain killers orally.On the Wednesday/Thursday I had some kind of reaction to the medicine they were giving me. I felt like my whole body was trembling in time with my heart beat and could feel the blood pumping round my veins. It was a weird sensation I could feel it in my throat and tongue and asked Tracey if I was visably shaking? I wasnt.
It was very subtle at first but that afternoon a drip I was on was turned up and was going too fast. I could feel every drip and felt like my eardrums were going to pop! The nurse came and turned it down. I went down hill from there though suffering halluscinations and feeling very hot and feverish,the trembling intensified.
By the time Tracey and Mum came in to visit me I had gone down hill fast and they left early,Tracey I could tell was upset.
I asked the nurse to give me something to help me sleep as I could not settle with the visions I was seeing when my eyes were shut. She gave me something and it worked, I was out for the count. It was the best night I had slept since I'd been there and only stirred when one of the nurses was washing my cannula in the early hours.
The next morning I felt much better! The lad in the bed opposite said how well I was looking and how bad I looked the night before.
I was now eating food again although only a little at a time. I can stomach most things but the hospital food was grim and I survived on Jaffa Cakes!
That day my stomach drain was removed wich wasnt particularly pleasant but I was glad to be rid of it.
The following day (Friday) I was allowed home and was soon washed and dressed and ready to go. Tracey arrived with my sister-in-law Lisa and my brother Stephen to pick me up. The nurses gave me my meds to take home with me and I was free!
It was great to be home. I stepped in through the front door an burst into tears. I think the mental as well as the physical trauma had taken its toll and they were tears of relief.
Its was great to see the kid again as they came in from school and again there were more tears.
The next few days I made huge gains,just being in the home environment and eating good meals made a massive difference to my strength.
Tracey was an absolute star and looked after me fantastically, helping me with bathing and anything else that needed doing. I'm so lucky to have her.
The next few weeks my stregnth grew further and I felt much better. I returned to work three weeks after the appendix rupturing and got on with things.
I recieved a letter through the post for an appointment at Southmead hospital's Colorectal unit out patients clinic and then was telephoned a day or so later with an appointment to have a CT scan.
"It must be a checkup" I thought, the outpatients clinic for the physical examination and the CT for an internal check on how things were healing.
Little did I know how far from the truth I was and of the bombshell I was about to be hit with...........

Getting up to speed cont.....the appendectomy

2009-10-27T06:14:00.000-07:00

I found myself being pushed to the operating theatre at approx 09:15. I had missed both Tracey and my mum and new that they would both be upset but in a way I was glad as I new saying goodbye to them would have been tough and probably only got myself worked up. As it was I think I was pretty out of it by this point and wasnt too nervous.
I was soon in the pre op room and had several people milling around me. A cannula was inserted into my left hand by the anesthetist and I was soon being injected with the anesthetic. Within seconds I was out.......
It was the first time I had ever had any kind of op an I was surprised how easy it was. I was out for the count, K.O'd. Its amazing really, they could have done absolutely anything to me and I would not have known. If things would have gone wrong I wouldnt have known either, it was easy. In a way it was also reassuring for what was to come..........

I was brought around in the recovery room after the operation. That was just a wierd experience......I was aware that there were two nurses around me who were talking. I cant tell you what the inside of the room looked like as it was all a blur and I was still well out of it and I think talking jibberish! My first memory is hearing both Tracey and my Mum's voice as I was being wheeled to the ward. I opened my eyes again and saw them stood waiting for me and managed a little wave.

Again I cant really remember the next few hours too well as I guess the anethetic was still affecting me. The surgeon came to talk to me breifly to advise that the operation went well but that it was one of the worst he had ever seen. Apparently what was left of the appendix was stuck to the ulum and cecum and needed to be cut away and that my abdomen was full of pus. The operation took an hour and a half longer than anticipated and I'd taken a long time to come around from the operation. However they had managed to persevere and do the operation laprescopically rather than open me up. This would reduce the chances of any infections.
I had also been fitted with a stomach drain to help drain the seline used to wash out my abdomen and any other gunk that wanted to get out. That was a bit of a shock as I wasnt pre-warned that I could have one of these when I awoke.

So I had survived thus far and wasnt in much pain at all, now it was just a case of getting the recovery out of the way and then get back to normal. I had a major caving trip planned for about six weeks time in Derbyshire to go and do Titan so I needed to recover quickly if I was going to make that.

Little did I know what was to come.......

Getting up to speed....

2009-10-17T15:52:00.000-07:00

It all started at the end of May '09. I had got up as normal one saturday morning and decided to visit the local shops with the family. We had not long arrived when I started to feel unwell and we decided to return home.

After about 40mins rolling around on the bedroom floor I decided enough was enough and it was time to call an ambulance. They arrived quickly and I was soon carried downstairs and into the back of the ambulance outside. I'll always remember the look on the girls faces as they stood in the lounge looking frightened with my brother who had quickly come down when Tracey had rung for the ambulance. In the back of the ambulance I was quickly given entinox and then morphine to try and ease the pain. Tracey joined me and we were soon on our way to Bristol's Frenchay Hospital.

I arrived in A & E still in some pain where more morphine was administered until they could not give me any more as I was at my limit. Bloods were taken and I was examined by the doctor. After a while the pain eased slightly and I was visited again by the doctor who advised that she was not sure what the problem was and to my surprise advised that I could go home. If I did not feel any better then I could see my GP or visit the Friendoc!

I slowly made my way to the car some 2hrs after I had been admitted feeling like I had been kicked in the stomach. The ambulance crew who brought me in were parked up having a coffee and could not believe that I was being allowed to go home.

The rest of the weekend I felt awful. i was off my food and feeling hot and cold and generally pretty ill.

On the Monday morning I tried to get up to go to work but couldnt do my trousers up because of the pain. I phoned in sick and managed to make an appointment with my GP.

As soon as my GP saw me she advised she was sending me back to Frenchay Hospital. I was admitted to the Surgical admissions ward around 13:00hrs that afternoon.

I was soon examined by the doctor and sent for X-rays. When I arrived back on the ward I was then examined by three medical students along with the doctor. The students diagnosed Peritonitus or a perforated appendix. I was showing the classic signs known as guarding and pain on rebound tests.......I was also yellow where my system was being poisoned from the toxins in my blood.

iIwas immediatly placed on strong antibiotics and pain killers introvenously and advised that I would be operated on before midnight. The plan was to do the proceedure laprescopically (key hole) if all was ok but if when I was opened up it was found to be bad then I would be opened up fully. Great.

I was visited twice in the night by the doctor who advised that the operation would not take place until Tuesday morning as the theatres were busy. during the night I continued to go down hill and was very dehidrated.

Finally at 09:15 I was whisked down to theatre considered an urgent case.......some 4 days after the appendix had burst.

Introduction......

2009-10-17T15:14:00.000-07:00

Hi......My name is David,

I am happily married to Tracey and have two beautiful girls....Jessica and Chloe. I enjoy outdoor life and my interests are Caving, Climbing, Fishing and running.......just about anything outdoors really!

Up until recently I have lived an very happy and healthy life and been blessed with being surrounded by by family who I adore.

However, that all changed in June '09 when after suffering a perforated appendix I was diagnosed with a rare form of Cancer.....Psudomyxoma Peritonei.

This is my story in a diarised form. I will write entries as often as I can giving updates of my progress both physically and mentally on what are likely to be some very difficult times ahead. Hopefully my story can be read by others suffering from the same condition and will help them understand that they are not alone and may even help them in some way.......