Tuesday, 4 November 2014

A meeting for patients, carers and families to talk about Peritoneal Malignancy.

 I’m pleased to announce that the Pelican cancer foundation at Basingstoke and North Hampshire Hospital are again running a meeting for patients, carers and families who are affected by Peritoneal Malignancy.

The event is being held at Basingstoke and North Hampshire Hospital’s Ark Conferencing Centre on the 10th December between 1and 5pm. The event is FREE to attend but there are limited spaces available so YOU WILL NEED TO BOOK YOUR SPACE. Call Pelican on 01256 314746.

 As with the last event talks will be held by Dr. Paul Sugarbaker along with surgeons and nurses from the Basingstoke Malignancy Institute.

Break-out sessions are again being held covering the following topics-

  • ·         Developments in research.
  • ·         Psychological effects of surgery.
  • ·         Post Operative bowel function.
  • ·         Patient follow- up.

When booking your place you will again need to indicate which breakout session you wish to attend.
I can’t shout loud enough to say what a great event this is. If you have been affected by Peritoneal Malignancy then I can strongly advise attending to get the very best and most up to date information from some of the leading experts in the world on this subject.

It’s also a fantastic opportunity to meet fellow PMP sufferers and carers face to face and share stories and experiences and to offer support and hope to the newly diagnosed.

Unfortunately this year I am unable to attend due to family commitments and will miss seeing you all again.

Below is the official flyer for the event. 

Sunday, 5 October 2014

Annual CT scan 4th September 2014

September the 4th the letter proclaimed was the date for my annual scan for 2014. I felt nervous this time around, more nervous than I had ever felt. It was at this point in 2012; two years after my initial cytoreductive surgery that my CT scan had shown a re-occurrence of Pseudomyxoma Peritonei and the dread of de bulking surgery became all too real. A clear scan this time around would be new territory for me.

September the 4th was a Thursday, I took the day off work and Tracey and I made the now frequent visit to Basingstoke hospital, some 75 miles from home. The CT scan was booked for 10:40 and I had to pay the usual visit to the bloods clinic first to check that my renal function was good and that my system could cope with the contrast dye that would be injected into me.

  We hit the road early dreading the battle with the rush hour traffic heading to Swindon, Reading and London on the M4 eastbound. Luckily enough the traffic was kind and we found ourselves arriving at the hospital just after 09:00. I had been up early to allow myself to have some breakfast before the nil by mouth deadline some four hours before the scan and was already hungry and ready for a cuppa!

 We headed straight for the bloods clinic armed with my “V.I.P fast track card!” as it is often busy and there can be long queues. There were two people sat in the waiting room! No sooner had I taken a ticket my number was called and I found myself sat in the “vampires” den with my sleeve rolled up and a nice nurse heading straight at me with a syringe!  By now I am well used to it, trick is just to relax and let them get on with it, it won’t hurt as much and you won’t get bruised.

Next we headed to the CT scanner. An hour or so early we were told that they would try to fit us in if they could but I ended up going in around ten minutes before time. 45 minutes before the scan I was given the contrast drink to drink steadily down to the line on the bottle with the last bit downed as you go in. I was ushered into a cubicle where I to put on two hospital gowns, one around the front and one around the back. Next it was time to take a seat and have the cannula inserted into my arm that would deliver the second part of the contrast whilst in the scanner.

 I made my way to the new scanner. It was the first time I had been in this one and just as a novelty they feed you in feet first rather than the usual headfirst. I led still whilst the scanner was set up and then it was time to go. A nurse came back into the room as the contrast was injected via the cannula.  You are drenched in a warm feeling from head to toe, with a metallic taste in your mouth. For me I feel it first in the back on my neck and then throughout the body. It really does feel like you have wet yourself but of course that’s not the case, simply your veins dilating to give the best image. The nurse left the room and it was then the turn of the familiar pre recorded “take a deep breath in and hold....” as you are fed through the scanner and then finally “breathe out....”

With the scan done it was back to the chair to take a seat. The nurse gives you five minutes to come down from the whole event and to make sure you are not going to keel -over. The cannula was then removed and I was soon dressed and on my way out. We headed first for the restaurant for a sandwich and a cup of tea as by this time I was ravenous.  With time to spare we decided to pop up to C2 to say hello to the team. The ward was busy and full of new faces but we managed a quick hello to both Sally and Linda who had looked after me so well over the last few years.

Before we knew it we were back on our way westbound on the M4 and counting down the mileage on the motorway signs for Bristol.

 In the week that followed I was surprisingly upbeat considering that my fate was being analysed in some office deep in the radiology department at Basingstoke Hospital. I guess it was because I had been told that my results would take a week to ten days so I knew I wouldn’t hear anything. Ignorance is bliss.

Week two becomes more difficult as you anticipate that letter arriving or the telephone ringing and the nerves start to jangle. You busy yourself throughout the day but at bed time, when your head hits the pillow that’s when it seems to kick in like an automatic insomnia switch determined to keep you awake all night. As the week went on I could tell it wasn’t just me who was nervous and could see it in Tracey’s eyes. It got to Friday 19th and I still hadn’t had any news so gave in and decided to ring Vicky and Sue. I left a message and before long the phone rang and it was Vicky, “No results as yet”. Apparently there were people on holiday and my scan had not been looked at yet.  I should hear something within the next week.....

 The week that followed was worse. By this time the insomnia switch was working overtime and so was my mind. “There’s something wrong...” I thought to myself “they have found something and the scan is being reviewed at the weekly case meets...” I reasoned to myself, “That’s why it’s taking so long”. People keep asking you “have you heard anything yet?” genuinely caring, yet every enquiry just reminds you further that you’re stuck in no man’s land and your fate lies in the balance. Friday the 26th arrived and still no news so once again I left a voice mail on Vicky and Sue’s answer phone. Around four o’clock the phone rang and it was Vicky.

 “Hi Dave, how are you?” she asked.
“Good thanks, its four o’clock and the weekend is nearly upon us” I replied.
“ Well I’m about to make your weekend even better, the scan is clear and your letter reads there is nothing to worry about, bloods are clear too”
I physically felt the weight of the worry lift from my shoulders, I was hugely relieved. I really was going to be a good weekend!

I thanked Vicky and then immediately phoned Tracey and then my Mum, brother and aunt. The last hour of the day was a blur and I struggled to concentrate, ecstatic at the news. I was a free man for another year.....

It’s been a week or so since the news and I have had another B12 booster. I haven’t felt so well in a long time. It amazing the difference it makes, I have energy and enthusiasm again. Tracey says I’m like a new man! I have started running again, been fishing and planning my first trip underground in a long time the week after next.

I have been very lucky, right now we are blessed and life is good.

Now to make the most of it and not take it for granted..........

Friday, 29 August 2014

Vitamin B12, annual scan and summer holidays.

For some months now I have been feeling under the weather. Constantly tired, lack of interest and enthusiasm, struggling to concentrate and generally lacking energy. My running has also suffered and I have been getting steadily slower and slower and on my last run ended up stopping several times as I just didn’t have the strength to keep going.

 I felt utterly demoralized and pretty sorry for myself but also worried over what might be causing it? The mind can jump to the worst conclusions. It came to a head when at its worst I was running out of energy by around three in the afternoon and in bed by eight thirty.  So I finally gave in and decided it was time to see the doctor.

 After a thorough examination and blood tests it was found that I was vitamin B12 deficient.  My reading came in at 64pmol/mL. http://www.patient.co.uk states-

Serum vitamin B12 is the most commonly used method of establishing B12 deficiency. In general, levels less than 111 pmol/mL reliably indicate deficiency. Neurological deficiency or anemia is usually evident in patients with levels less than 89 pmol/mL”

Thankfully it’s been confirmed that I’m not anemic. The likely cause is the amount of bowel surgery that I have undergone and in particular surgery involving the ileum where vitamin B12 is absorbed. The concern however is that if I’m not absorbing vitamin B12 properly then what else am I not absorbing?

I have been referred locally to the colorectal consultants and await an appointment for further investigations.

The timing is pretty good as I am also due for my annual scan at Basingstoke on the 4th September. A good thorough checkup is always welcomed!

On a positive note we have just returned from our summer holidays in Devon. We had a great time and the weather was kind. We visited many of the seaside towns in the vicinity-Brixham, Torquay and Dawlish to name a few. We also got up into Dartmoor visiting Dartmoor Zoo which the film “We Bought a Zoo” was based on, Becky Falls and Woodlands Family Fun Park. 

Otters at Dartmoor Zoo



Becky Falls

Whilst we kept ourselves pretty busy the well earned rest did us all good. We spent quality family time together and thoroughly enjoyed ourselves.

So the next few weeks sound like they might be busy! Annual CT scan at Basingstoke and a local referral for further investigations on the whole vitamin B12 thing.

I’ll keep you posted…  

Sunday, 13 July 2014

Race For Life

It was a very early start for a Sunday morning. The alarm set for seven much to both Tracey and Jessica’s delight; both of whom had been out the night before on the razzle.

 Luckily we had prepared the night before. Our kit was ready with the race numbers pinned to both the front and back of the girls T shirts and all ready to go. No faffing, well less faffing as a faf-free departure for two teenage girls is nigh on a impossibility!

Tracey and Jess were both pretty quiet as we headed out the door. No doubt questioning what they were doing going out so early after not getting in until the wee hours! We jumped into the car and headed out. Surprisingly the sun was shining and it was a lovely morning. The forecast had been for showers.

We parked the car in Clifton village and walked to the Downs where the event was being held. We gradually saw more and more ladies dressed in pink obviously taking part in the 5k race themselves. The previous day had seen the 10k race being run and a fun event-the Pretty Muddy race with various obstacles thrown in for an extra challenge.

Gradually more and more people arrived. Heart radio manned the stage and the team wound the crowd up before the race culminating in a final warm up. To see a sea of ladies all clad in pink doing the warm up all in synchronisation was quite funny. People of all ages and ability joined in, the young, the old,mums with kids, some even ran with the kids strapped to their backs in carry chairs or pushed them in pushchairs! Others came in fancy dress, one of Jess’s friends being one of them sporting her Kermit the frog onezey!

There was a minutes silence held to remember all those people that had lost their battle with Cancer or who were currently fighting this terrible disease. It was very poignant with many people shedding a silent tear.

Then the fun began! The ladies were split into three groups; the runners, the joggers and the walkers. Not wanting to overdo it so early on a Sunday morning the girls decided on the latter group. It wasn’t long before they were soon on their way.

Tracey and I waited patiently in the sun for them to finish the race. It wasn't long before the first runners came over the finish line and soon they were coming in thick and fast. Each collecting a bottle of warter, a snack and their all important medal as they funnelled out over the finish line. After a while we soon spotted the girls heading towards us through the crowds. Huge smiles on their faces, both had thoroughly enjoyed the event  and vowed to do it again next year.

Thursday, 3 July 2014

Catching Up..

Somebody asked me the other day did I still think about Pseudomyxoma very much?
And the answer is simple....yes.....EVERY SINGLE DAY.

I have been lucky enough to have got the all clear at the last annual scan and to have enjoyed a cancer free year and in recent months made a conscious effort to take a bit of a step back for a while and concentrate on the family and managing my very busy day job. However my experience with Pseudomyxoma has had such an impact that I simply cant forget about it and crack on. The images are still burned into my memory and to be honest I think they always will be.

 We booked a holiday recently and were all very excited when we put the deposit down and secured our place but within minutes I realised that the holiday will be not long after my annual CT scan. Damn, so it’s either going to be a very good holiday or could be very subdued. Hopefully the former!
I’m expecting my invite to Basingstoke Hospital for my annual scan to land on the doorstep at any moment.  Like all of us I am nervous of what the outcome might be. To get another all clear would be new territory for me and break my previous record!

 Recent months have been very busy indeed. As usual my job has kept me very busy and of course being parents to two teenage girls is keeping Tracey and I on our toes! The months have been full of the usual family days out and manning Dad’s taxi.

Chloe has decided to join Jess in the Bristol Race for life event being run on Sunday 6th June. I’ll be a proud Dad. I’m proud that they are both supporting such a great event. I just hope the weather is kind for what should be a great day out and a wonderful experience for both of them.  If you would like to sponsor Jess and Chloe in their Race for Life event and help them achieve their fundraising target then you can do so by visiting their just giving page at-https://www.justgiving.com/jessmason/

I look forward to posting about the day with photo’s in the next week or so!

Over the past few months I have continued to make contact with fellow PMP patients via the blog site and lucky enough to make acquaintance with some very brave people and offer support to them where I can. It’s such a rewarding side to the blog site and I am glad that I can help in some way.

Regarding my own health I continue to do well. I continue to run two or three times a week and get a lot out of it. As well as the obvious health benefits I find it a great way to manage the stress levels. But I find it also has other physical benefits as well. After so much surgery on the bowl things aren’t quite the same as they used to be but running definitely seems to help. The difference is noticeable and if there are periods when I don’t exercise then the niggles and gripes sneak back in.

 I have also managed to sneak out and get some fishing done. It’s a hobby I have enjoyed since I was a young lad and these days escaping to a quiet spot on a lake somewhere in the sun is a perfect day out for me. Don’t really care if I don’t catch anything just being there in the outdoors is enough for me, especially as I am trapped in an air conditioned office all week long.

So lots of things happening in the next few weeks to report on....Race for Life & the Annual scan...watch this space.

That’s me for now, over and out fellow PMPers!

Wednesday, 2 April 2014

Race for life 5k run Sunday 6th July 2014

 I am really proud to say that my eldest daughter Jessica has decided to enter the Race for Life on Sunday 6th of July to help raise funds for Cancer research.
She has decided to enter the 5k race and is busy training for the event .

 Our family, like many others has been affected by cancer on more than one occasion. My story you are all very familiar with as I have been very vocal about my own battle with PMP. But what many people are not aware of is that just after my first surgery and just as I was starting to recover my mum was diagnosed with breast cancer.

 We had all just been through the mill with PMP and now it was time to face cancer in a new guise. Mum’s treatment started initially with surgery and then was followed up by chemotherapy. With each treatment the effects of the chemo were worsening making her really ill which resulted in a hospital stay. She suffered hair loss, sickness and all the other ill effects that this type of treatment brings.

Gladly mum has recovered very well and is continuing to stay cancer free.
More recently a close family friend has also been undergoing treatment for breast cancer.

Events like Race for Life are vital in funding Cancer Research UK's lifesaving work into preventing,diagnosing and treating cancer.By sponsoring Jess, we can unite and create a force that cancer cannot ignore.

Please support Jess by donating to Cancer Research so that they can find a cure for this devestating disease.

Gift Aid it!

If you're a UK taxpayer, please remember to click the Gift Aid box as this will increase your donation by at least 25% at no cost to you.

Sponsor Jess now and we can become cancer's worst nightmare. Jess has set herself a fundraising target of £100. Lets ensure we Smash that target!

One day we will beat cancer.Help make it sooner.

Jess's Just Giving Page

Friday, 28 February 2014

International Rare Disease Day 2014

The theme of International Rare Disease Day 2014 is “Join Together for Better
Care.”    As  patients  and  caregivers  who  have  been  impacted  by  peritoneal
cancers  (Appendix  Cancer,  Pseudomyxoma  Peritonei,  and  other  Peritoneal
Surface Malignancies) our organizations have chosen to join together to share a
simple message about these diseases.  

This year’s Rare Disease Day Ambassador (http://ow.ly/tQj4T), Sean Hepburn
Ferrer, lost his mother Audrey Hepburn to peritoneal adenocarcinoma in 1993
at a time when she was offered precious little treatment or hope.  Over 20 years
after Audrey Hepburn’s experience, one of the greatest challenges with these
diseases  continues  to  be  correct  and  timely  diagnosis  and  access  to  the
Standard  of  Care:  cytoreductive  surgery  plus  hyperthermic  intraperitoneal
chemotherapy (CRS/HIPEC).   In many cases, symptoms are misunderstood for
years,  and  patients  are  thus  less  likely  to  benefit  from  CRS/HIPEC.    This
treatment,  unavailable to  our  patient  population  only  a  generation  ago,  has
turned  what  used  to  be  an  almost  certain  death  sentence  into  hope  for
thousands of patients around the world.  

We share the goal that every patient who presents with the common symptoms
of these diseases – abdominal pain, increased abdominal girth, bloating, hernia,
ovarian cysts or tumors, and ascites – receive correct diagnosis through tumor
marker blood tests (CEA, CA 19/9, CA‐125) and CT scans and be afforded the
option  to  be  treated  with  the  Standard  of  Care,  CRS/HIPEC,  by  a  qualified
surgical  oncologist  before  any  other  counterproductive  and  potentially
damaging treatments are attempted.  

We all share the hope of achieving this  goal, and by joining together  in this
statement and sharing this information, we strive for future patients suffering

from these diseases to receive the better care that they deserve.

Friday, 24 January 2014

A New Year....

So here we are a New Year is upon us and we are already coming to the end of January! Christmas is a distant blur and we are back into the daily routine.

We had a great time with the family, relaxing, eating and drinking far too much and generally enjoying each others company. All over far too quickly though!

                                          A winter robin at Blaze Castle-Bristol.

Christmas provided a great opportunity to catch up with a number of my PMP buddies. The one thing this cancer has given me is the opportunity to meet and talk with so many wonderful people whom otherwise I just would not have crossed paths with. All of them fighting their own battles with PMP one way or another. Be it undergoing treatment now for initial diagnosis, re-occurrence, recovering from treatment or just dealing with the scars left behind on themselves and their families from past skirmishes with Pseudomyxoma. 

 It was great to talk directly with many of them on the phone wish them Merry Christmas and to hear the stories of how well they were all were doing since having their treatment. Some have now got a few years under their belt and thoughts of PMP slipping away as they get on with their lives.
Others, having had treatment more recently telling me how progress is coming along, getting back to work on the stud farm for example and taking on new jobs on the railway! New beginnings, fresh starts full of opportunity and wonder as to what lies in the coming year.

  Cancer is a cruel disease. I also know PMP patients who have battled through treatments, undergone 10-12 hours in surgery, intensive care, a long recovery to good health only then to have a family member diagnosed with cancer. Roles become reversed, the patient becomes the carer and vice versa. The mental strain is tremendous, just when you think it’s all over...whammo...

 But with a new year comes the hope of new beginnings, since the 21st December the short winter days have started to very slowly get longer with each turn of the Earth. The winter sun now full of promise for the spring days ahead.  The winter here in the UK has been very mild and wet with flooding a real problem in the south. In stark contrast to last year I can count the number of frosts we have had on one hand.

 Personally I am doing very well and have recovered from my last operation. I did have to break open the emergency antibiotics due to a nasty cold recently. Being without a spleen and classed as immune deficient I have to be very careful when it come to cold and flu viruses. Other than that I am doing very well. I have had a break from running over the Christmas period but back to it now and hope to be back caving soon. I don’t really make New Year’s resolutions but if I had one I guess it would be to try and get some more fishing done once the weather improves a bit!

 I plan to make the most of the summer this year and enjoy it as much as possible. For me the annual scan is not until August and who knows what that will bring? But between now and then we plan to crack on and enjoy the days ahead....