Tuesday, 20 December 2011

What Do You Want For Christmas?

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.


Sunday, 9 October 2011

Ten Facts about Psuedomyxoma Peritonei

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 ~2-3 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.

Wednesday, 21 September 2011

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

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-


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....


Tuesday, 30 August 2011

Injury puts paid to Bristol Half Marathon....

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!

Tuesday, 28 June 2011

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

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.

Wednesday, 27 April 2011

MOAS + 15 Months.....

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.......!

Tuesday, 12 April 2011

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

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.......

Thursday, 24 March 2011

Fundraising Again.....!

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


Thursday, 24 February 2011

Wednesday 23rd February- 1st Annual Scan Results.

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.........

Wednesday, 16 February 2011

Feb 14th 2010-First Annual Scan.

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....

Wednesday, 2 February 2011

2nd Feb 2011-MOAS +1 year.

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......!

Tuesday, 18 January 2011

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

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!