Thursday, 24 December 2015

Merry Christmas

So another eventful year has passed and we find ourselves in the festive season with a New Year looming. For me the 2015 started full of promise, I planned to get more caving done, more fishing done and generally enjoy the outdoors. Unfortunately fate had other ideas and the prolapsed disc I suffered in March meant that most of the summer and good weather had passed before I was fixed in late August/ early September.

Next followed the bad news from my annual CT scan that for the third time I faced another positive diagnosis for Pseudomyxoma Peritonei! Whilst we are all becoming pretty thick skinned and used to dealing with this kind of news the initial reaction is still exactly the same as the first time I was diagnosed. I have become good at compartmentalizing my emotions, knowing that I won’t hear anything more regarding what the plan is for treatment until the New Year I have locked this away in the back of my mind and will only open the drawer when I need to. Day to day life continues, my work keeps me very busy which helps and I fully intend to enjoy this Christmas at home with the family and worry about what might be in the New Year.

 That said, a third diagnosis chips away at the resolve of even the strongest of us. Will I ever beat this awful disease or is my fate only following one course? Looking at communication between the various consultants at Basingstoke Hospital early indications are that surgery is an option in my case. So good news and bad news. Good news that there does appear to be some treatment available for me but the operation again would be a big one with all the associate risks and the uncertainty of what life would be like post op. Of course, things could change depending on the findings of the more detailed MRI or further down the line what the surgeons find when they go in. We’ll worry about that when the time comes.

So for now, the next few days are all about enjoying Christmas and time with the family. It’s about appreciating what we have around us and those that are closest to us. There are many more people out there far worse off than ourselves whether it’s facing a terminal illness, homelessness, our homes flooded at Christmas or spending it in a refugee camp in Europe. So when your sat enjoying your Christmas dinner, exchanging gifts or sipping a sherry in front of the fire, stop, take a breath and look around you and be thankful. For that is what Christmas is really all about.

Merry Christmas and a happy New Year to you all!

Saturday, 24 October 2015

“Scanxiety”; the wait for results and the final outcome...

 I have seen a number of times now discussions on different forums about the length of time it takes for patients to receive their results after a CT scan. Historically I have usually crumbled and after a few weeks succumbed to the pressure and phoned the Hospital to obtain the results rather than await them to contact me.

In the period post annual CT scan, time spent waiting for results can be a scary one. As time passes and the days and weeks go by “Scanxiety” (scan-anxiety) as we call it in the PMP world sets in. This year having seen the discussions on the forums I was determined to wait and see for myself just how long it took to receive the results.

On looking into why it may take so long to get results I came across a piece by The Guardian. It states that there is a huge shortage of radiologists in the UK with only around 45 radiologists per million people. That’s nearly as rare as Pseudomyxoma itself!

A recent survey by The Royal College of Radiologists conducted on the 16th October found mixed results in NHS radiology departments. Whilst some faced no delays other has major issues. “It found that 81,137 X-rays and 1697 CT and MRI scans had not been examined for at least 30 days, even though the expectation in the NHS is that such potentially vital diagnostic tests should be examined within a week”
“ This reflects the national picture ...and about 6000 patients have waited more than a month for the results of CT and MRI scans” the college said.
Source-The Guardian

 I am not saying that this is the case with Basingstoke Hospital in any way, my care has always been second to none by the team there but it does give a picture of what is happening nationally within the NHS.

Scanxiety diary.....

Week 1-Commencing Sunday 13th September.
Scanxiety level-0 (0=low-10 is high).

The first week for me is an easy one. You know that you won’t hear anything regarding your results and so it’s business as usual, it’s easy to compartmentalise the thoughts at this point. If you ask the staff at the CT scanner they will usually say that results take around 10 days to get to you. From history I know that it’s more like 3 weeks to a month. My experience has been if you get a letter through the post then generally its good news, a phone call-not so good. This is now my fifth annual scan since my first Cyto-Reductive Surgery (CRS) in 2010 and third since my de-bulking surgery in 2012. For now I am PMP free, with the results not coming anytime soon I am enjoying blissful ignorance.
However, life has a way of giving you subtle reminders that things are not all as they seem. Well meaning friends as “How did it go?” or “any news?” just a reminder that you may be existing on borrowed time so to speak. I have also had other subtle reminders. Not sure if it’s just the subconscious at work picking out things that you would normally ignore but this week but I was analysing a table of over 39K addresses in Excel and guess where the address was at the top of the table? ...Basingstoke! Also,on the way home I was parked at traffic lights in Bristol, the car in front was a Skoda. It was sporting a sticker in the back window advertising the garage where it was bought from; Jacksons of Basingstoke! Subtle reminders....!!
I guess subconsciously I must be thinking about it as I rang the specialist nurses this week to give them my new mobile number too...just in case...

Week 2-Sunday 20th September
Scanxiety level-0-2

Started the week with some fishing! Had an enjoyable day at my favorite haunt on Sunday 20th. Monday saw the start of the working week and I guess the possibility that I could hear something back from the end of this week. My behavior has changed slightly too. I am ensuring that my mobile phone is not on silent and always within reach, just in case... The guys in work asked me about it again this week, I replied that I hoped I wouldn’t hear anything as the weekend coming we had a family holiday booked in west Wales and I didn’t want any results to potentially spoil it. Work has been extremely busy and helps to keep my mind occupied so I don’t think about the results and “Scanxiety” remains low. However as the week has progressed the level has risen from a 0 to around a 2. Still low but definitely in the background.
 Our weekend away was fantastic! We stayed at Pendine Sands and had beautiful weather. The resort was quiet and we walked in the sun on the beach on the Friday. Saturday was spent at Oakwood theme park where again it was quiet and we were able to get on any ride without queuing at all! We went on Megaphobia ; a giant wooden roller-coaster and Speed which climbed and fell vertically as well as loop to loops and barrel rolls! Sunday the weather turned and we spent the day in Tenby. We got through the weekend without any results and thoroughly enjoyed it!

Week 3- Sunday 4th October
Scanxiety level 6

The holiday is out of the way, back to the working week and into the danger zone. Finding out the results is now a very real possibility. My scanxiety level and that of the family too has raised considerably.  Each morning I wake and wonder if today will be the day when I find out, it’s the first thing I think of. As soon as we hear the post being delivered we are on it checking to see if it contains a letter with the Basingstoke stamp on it?

Week 4-Sunday 11th October
Scanxiety level 6

Still no news. I am regularly being asked if we have heard anything now by friends and family? Mum and Dad have been away in the Mediterranean for the last two weeks and have text me twice asking if we have heard anything. The wait does not just affect me, it affects the entire family and its hard.

Friday 16th October.  

Throughout this week I have had a cold hanging around. Throughout Thursday and overnight it got considerably worse with painful sinuses. Today I just couldn’t face work. I’d been up since the early hours and felt awful. I had spent the morning in bed and then migrated down to the sofa in the afternoon. Around 3pm the phone rang, Tracey answered, it was Basingstoke hospital. My heart sank, I think both of ours did. We knew this meant only one thing.

I spoke to one of the secretary’s who had advised that Tom Cecil wanted to see me in the out patients clinic on Wednesday 21st at midday. I agreed instantly. I asked what had been found on the CT scan and as she was not clinically trained she was unable to help. She put me through to Vicki one of the specialist nurses.  It turns out that one of the tumour markers (CA19-9) was slightly raised and they had seen an area of fluid near the liver. Tom wanted to talk to me about the results.

I put the phone down just as Chloe walked in from School and into the turmoil that ensued. We were devastated. Jess was working; I had to pick her up. I managed to keep upbeat in the car and didn’t mention it until we were home. Everyone was so upset, I hate that the words I speak causes the people I love the most in the world so much pain.

We then proceeded to make the calls to those closest to us to break the news that once again Pseudomyxoma was back. I couldn’t ring Mum and Dad as they were still on holiday and not due back until the following Monday lunchtime. I made my mind up I’d go down directly after work on Monday and shatter their world for the third time...

Our weekend was a similar experience to what we have faced previously. Friday was complete turmoil once the news was broken. The knee jerk reaction is complete hysteria and upset, it always is. Then, the numbness sets in. You feel nothing but numb. For me it did really take the wind out of my sails. I couldn’t believe that recently I had actually allowed myself to look forward to the future and to make plans. Things had been going really well and I felt great. And now, once again we stood numb in the blackness with the future once again uncertain.

Wednesday 21st October-Outpatient appointment.

We made our way to outpatients at Basingstoke Hospital. It was busy but we were seen on time. Vicki called us in and we made our way to the meeting room and met Tom Cecil. We greeted each other with friendly hello’s. The team have been so good to me here and once again I found myself in their care.
We quickly got down to business. Tom explained that when the bloods are taken at the annual CT scan three tumour markers are taken. Two out of the three for me had come back clear but the CA-19-9 test had come back slightly raised. Any score above 35 is considered abnormal and mine had come in at 39. To put this into context he explained that they are used to seeing scores in the 100’s or even 1000’s. The test is also very sensitive and things like inflammation can cause an increase. On its own it probably wouldn’t have mattered much. However, there were also two area’s of concern on the CT scan. The first, near to the kidneys was around 7mm long and when they looked back retrospectively at last years scan they could see it on there. But it hadn’t changed in size at all in the last year and there was some uncertainty as to whether or not to is mucin. The second area was behind the portal vein that feeds the liver. This however had changed in the last year and is around 1cm in size.

The hepatic portal vein carries around 75% of the livers blood supply and is part of the portal venous system. The hepatic portal vein carries blood from the gastrointestinal tract to the liver which is rich in nutrients taken in by the intestines. The liver then removes any toxins that also may have been absorbed before being released into the systemic circulation by the hepatic vein.

The area is notoriously difficult to operate on we were told. It’s difficult to get at by the surgeon and may explain why the possible re-occurrence has happened where it has. If the portal vein is ruptured during surgery then there is a very real chance of the patient bleeding to death on the operating table.

The plan agreed was that a MRI scan would be done in the New Year. This would leave a significant amount of time between the scans to pick up any changes in size to the areas of concern. Also, an MRI scan would produce a far more detailed picture of what was going on and where exactly it was happening making it easier to assess what needs doing and how soon. Tom also advised that he would talk to a colleague who specializes in liver surgery to see what he thinks? Apparently he is often called upon for this kind of surgery.

We left feeling better than we had done. We now understood the detail and what the plans were. The news was better than it could have been and now we just have to wait and see what the MRI brings in the New Year.

But right now, once again I have cancer, I have Pseudomyxoma Peritonei.

Sunday, 13 September 2015

Annual Scan Friday 11th September 2015.

So, here we go again. This now my fifth annual scan since my first CRS with HIPEC in Feb 2010 and third since my re-diagnosis in 2012 and subsequent de-bulking surgery.

 We had an uneventful journey from Bristol to Basingstoke, both weather and traffic was kind. It was an early start for us as we had to be in the bloods clinic for 10am. Unusually there was no-one else there and despite going armed with my fast track card I didn’t need to queue jump as I was the first. However, I don’t think that the fast track simply allows you to queue jump it also acts as a flag to the phlebotomist that the bloods need to be analysed quickly as you are also due a CT in an hour’s time.

Bloods done, we headed for Radiology and the CT scanner, now a well trodden path for us we were soon in the waiting room well ahead of our time. Again, it was fairly quiet. As I’d not eaten for four hours beforehand and being a habitual grazer I was now starting to feel a tad peckish! The nurse brought out the contrast drink bang on time at 11am and I proceeded to “drink down to the line” over the next 45 minutes.

 My name was soon called. I donned the hospital gowns and then was led to a chair where a nurse then inserted a cannula into my right arm. Much better than the blood test where despite not feeling a thing I was clearly going to bruise beautifully! Opposite me was an older chap who was also getting his cannula fitted. However the nurse seemed to be having trouble finding a suitable vein.

I soon found myself in the CT scanner, an old pro at this I knew exactly what to expect, that familiar warm sensation as the iodine is injected into the cannula. For me it starts in the back of the neck along with a metallic taste and then quickly spreads throughout the body and most acutely felt in the groin making you feel like you have wet your pants!

It was soon all over and I was again ushered back to the chair where I had to sit for ten minutes before having the cannula removed. Opposite the nurse had called in reinforcements and the poor chap already had three separate plasters down his right arm where she had failed to find a vein that would comply with her increasing desperation to get the line in. Luckily her colleague managed it after a little help with some warm water in a surgical glove placed over the intended next attempt.

Dressed and ready to go Tracey and I then headed to C2 ward to meet with Brendan Moran, Vicki Evans and the hospital press officer. We were armed with a cheque for £856 that was raised by my colleagues at work in a recent dress-down day the money raised by the staff  was then matched by Nisbets Plc.  

 We caught up with the team on C2, there were lots of new faces as many of the nursing staff that had previously cared for me had moved on to pastures new. The ward was full, Psuedomyxoma Peritonei operations are now being done two every Tuesday and two on the Thursday of every second week. The team there are certainly very busy.

 We posed for photos and had a quick chat with the press officer Eloise who is also writing a short piece about our fundraising. We also bumped into Suzanne Alves who is now busy with research, she told us that a recent survey had been sent to 299 patients from the last six years and had a great response from everyone. Having such a response from a large selection of people is key to identifying meaningful trends and patterns in the data gathered.

We said our goodbyes and headed back to Bristol, content that we’d been able to help in our own small way in the battle against this god awful disease. Whether it’s buying equipment for the ward or put towards research hopefully it will make a difference somewhere.

So now I get to enjoy the phenomenon known as “Scanxiety” in the PMP world for the next three weeks to a month whilst I wait for the letter or telephone call that decides my fate...

Tuesday, 4 August 2015

And Now for Something Completely Different....

 Having planned a full summer of activity at the beginning of the year I had clearly set myself up for a fall of a different kind.

 The spring had seen me get back underground again with a through trip from Bath Swallet to Rods Pot in Burrington Combe, my running was going well as I was going both further and faster and with the promise of good weather ahead I’d purchased my annual fishing rod licence and looked forward to peaceful days in the sun at Shakells lake relaxing and hopefully enjoying some good fishing.

But that was soon to change an old nemeses of mine was about to remind me that me was still there! Some of you may remember that at the back end of March we experienced a couple of periods of strong winds here in the UK. During one of these a small tree was blown over in our garden. Luckily the trunk had not snapped but it had fallen across the path to the garden shed. It was mid-week so I decided that I should move it out of the way to allow access until the weekend when I would put right Mother Nature’s mischievous actions. Big mistake! I gave the tree a shove to get it off the path and felt my back go. I had previously suffered with a prolapsed disc just prior to my de-bulking operation in 2012 and had a weakness there ever since.

As the days that followed went by it gradually got worse. At the weekend I was so bad that I managed to get an out of hour’s appointment on a Sunday to see a GP. She prescribed me painkillers and anti inflammatory pills to try and make things easier. I just about managed to go to work the following day but by the Tuesday the pain was so bad I could barely make it out of bed to the bath room. This time the GP came to me. He upped the pain killers to include 10 microgram per hour Buprenorphine patches as well as Gabapentin tablets.

 The following day things were even worse. I actually couldn’t get out of bed at all. A call to the 111 National health hotline saw an ambulance crew despatched to attend. When they arrive they were initially advising that it was a bad back and that there was not a lot they could do. At this point I was led in bed and the pain was manageable. They advised that they would get some Entonox in that would help with the pain and they would try and get me to the toilet but I should again take it up with my GP. With a few hefty pulls on the gas and with the effects kicking in I tried to stand at the side of the bed. The pain was worse than anything I have ever experienced. Even with all I have been through with the Pseudo. I managed to get to the end of the bed sucking on the gas so fast the valve couldn’t cope. Then the ambulance crew advised that the bottle was empty. They managed to get me back on to the bed and advised that they could see that I was in so much pain that they would have to take me in. They gave me some morphine and managed to get me into a wheelchair where I was carried down the stairs and into the Ambulance.

At South mead Hospitals A & E I was given more morphine. Once again led down on the trolley I was much more comfortable. I was given an MRI scan which showed a small prolapsed L5 S1 disc. The prolapsed disc was pressing on the nerves which was causing all of the pain and now the top of my right leg and half of my right foot was completely numb.

After a wait a doctor came in and advised that they would not be operating but could help.Another doctor from the neurosurgery team arrived and manipulated my back managed to get me stood up and walking and sent me home with some exercises.

And so commenced a miserable existence, I was only comfortable when I was either stood up or led down, I couldn’t sit at all. I would sleep all night OK, would get up and take a heap of tablets and pain killers, just about survive the drive to work where I would stand at my desk that had been raised up all day long. It got so bad that on the worse days I would go out to my car and lie on the back seat for an hour to ease the pain. I even did two meetings led on the floor! The journey home was excruciating, by three quarters of the way home I was in agony. One evening (Tracey’s birthday) I got in through the front door Tracey took one look at me and got my Dad to whisk me back out to A & E for the third time. The nurses on the admissions desk took one look at me and took me through there and then, another shot of morphine and the rest of Tracey’s birthday led on a trolley in A & E. By now the Buprenorphine patches had been increased to 35 micrograms per hour but just weren’t touching it. On this visit the MRI was not re done which probably would have changed the outcome of the evening’s events.

The following day the spinal assessment team called me, they had been trying to get me in front of the on-call neurosurgery team at Southmead but they had advised that because A & E had discharged me they didn’t consider me an urgent enough case to be seen that day.

I then saw the spinal assessment team again who arranged for a spinal root nerve block injection to be done. I was advised that there was a six week waiting list for the procedure. I simply couldn’t wait that long and managed to get the number for the admin desk to get onto the short notice cancellation list. I rang them the following day and my name was added.

I left it a few days and rang them again.

 “But your name has already been added Mr. Mason”
“Yep, I’m aware of that but was wondering if anything had come up?”
“No I’m afraid not”
“So is there such a thing as a same day cancellation list?”
“Well you would have to arrange to get here and someone to take you home as you won’t be able to drive”
“ I work a few minutes down the road so getting there is not an issue, I’m sure I can arrange a lift home at short notice”
“ OK hang on a minute let me take a look” rather abruptly....”Oh...hang on a minute...why wasn’t I told about this...can you do 9:30 tomorrow morning?”
“Yep, book me in. I’ll be there!”
It goes to show you just need to keep pushing!

So I had the procedure done the following morning. Basically the surgeon gives you a local anaesthetic and then injects a steroid and more anaesthetic into the area affected in the spine using an X ray machine to ensure that he is in the right area.
It didn’t work, in fact for me it made things worse.

I finally saw a consultant neurosurgeon just over a week later who advised I needed surgery, a L5 S1 micro discectomy. I agreed. A follow up MRI scan had revealed that the prolapsed disc had got considerably worse and was considered acute. Had this been done on my last visit to A & E I would probably been admitted.

Finally the procedure was carried out on the 24th July some four months after all the pain started. I was lucky, I was pushed through this stage quickly and the procedure was done at a private hospital. It was a short operation under general anaesthetic taking around one and a half hours in total and an overnight stay.
Three pieces of disc were removed, one of which had a piece of bone in it which was embedded in the nerve. It had caused superficial damage to the nerve itself and because the nerve had been stretched for so long there was some slack in it. It should however heal in the coming weeks and months.

Just over a week down the line and I’m feeling much better. Still the odd pain but it hasn’t been long since the op. I have plenty of restrictions in terms of lifting and exercise at present but I’m walking a couple of miles or so each day. I have follow up appointments with the consultant and Physiotherapist planned.
As far as Psuedomyxoma is concerned I have three things of interest!

August is raising awareness month for Psuedomyxoma Peritonei (PMP) with the Pseudomyxoma Survivor team  so please share this with as many people as possible. Two to three people per million per annum are diagnosed with this rare and devastating cancer. Because it’s so rare the patient often finds themselves being the expert when talking to GP’s as they have simply never heard of it. Exactly this happened to me on several occasions recently when talking to the doctors regarding my back in the story above. Some of whom I know then went away and looked it up and even read my blog! That’s why it’s important that we keep shouting about it as what chance does an un-diagnosed patient have when presenting to their GP with symptoms?

 At my work place we recently did a dress down day in aid of Basingstoke Hospitals Pseudomyxoma and colorectal cancer trust fund. On the last Friday of each month my colleagues all go to work in casual clothing and make a donation to a charity. Nisbets plc will then match the donation. We raised a fantastic £856 for the hospital! A great result that again helps raise awareness of this rare disease.

The final bit of news is that my annual CT scan date has come through in the post this week. So on September 11th I’ll be heading up to Basingstoke to spin the PMP wheel of fortune once again....

Friday, 3 April 2015

Results of SeHCAT Scans....

So it’s official, I am suffering with bile salt malabsorbtion. The results of my recent SeHCAT scans have shown this to be the case. However I am lucky enough not to be suffering from the usual side effects experienced by most people (chronic diarrhoea) and instead it has manifested itself in my low vitamin B12 count.

The SeHCAT scan is the easiest and most reliable way to diagnose bile acidic malabsorbtion and is done in two parts. It measures the multiple cycles of bile acid excretion and reabsorbtion. Bile acid (salts) are produced in the liver and enter the biliary system where they are stored in the gall bladder (mine was removed during my first cytoreductive surgery) and are released after meals where they play an important role in the digestion and absorption of fats in the small intestine. Then, around 95% of the bile acid is reabsorbed by the ilium (which was affected in my initial appendectomy/peritonitis) and the liver (Liver capsulectomy during initial cytoreductive surgery) where they are then re-secreted. This usually happens between 4-6 times a day.

There are three classifications of types of bile salt malabsorbtion-

Type 1- Bile acidic malabsorbtion related to ileal resection or inflammation (found in Crohn’s).
Type 2- Idiopathic bile acid malabsorbtion, Primary bile acid diarrhoea.
Type 3- Secondary to various gastrointestinal diseases including (chlolecystectomy).

 At the first scan I attended the nuclear medicine department at Bristol’s Southmead hospital and was initially given a radioactive pill to swallow some two hours before the scan itself. Next came the scan itself. The scanner is slightly different to a CT scanner in appearance in that once on the “bed” the patient is positioned between large “plates” both above and below the bed. You then have to lie still for a ten minute period where the level of radio activity hitting these “plates” is recorded. And that’s it!

The scan is then repeated seven days later where the radioactivity level is again recorded and the amount of reabsorbancy can be calculated. Retention at 7 days should be above 15% values below 15% are considered mild, below 10% moderate and below 5 % severe. Not sure where I lie on this scale as yet!
Due to my lack of symptoms other than the B12 deficiency which is being treated with supplementary injections every 12 weeks there is no need for any further treatment. However the side effects of bile acidic malabsorbancy can be treated with medication if required.

So for me it’s good news, the reason for my vitamin B12 deficiency has been diagnosed and we now know that bile salt malabsorbancy is present. Something to keep an eye on. But for now I am lucky that I don’t have any other side effects. I am fit and well, feeling better that I have done in a long time now that the B12 jabs are working. I’m back running longer distances (up to 10miles) on a Sunday morning and back caving regularly. Right now life is good! 

Friday, 20 February 2015

The Cancer Survivors Club second edition...

I’m pleased to share the news that The Cancer Survivors Club second edition is now on sale. Chris and Catherine Geiger have worked tirelessly in the last few years and their hard work has paid off. Oneworld publishing has published the second edition which is now available from all major on-line and independent bookstores.  For details as to where to buy the book click on the link.

The Cancer Survivors Club on-sale in Waterstones.

The launch of the second addition coincided with World Cancer Day on February 4th which proved to be a very busy day for Chris promoting the book with Radio interviews on over 12 local  BBC Radio stations. Some of the stations included BBC Sussex, Stoke,Surrey,Wiltshire, Shropshire, Cornwall and Northampton. Chris also spoke with Vanessa Feltz on BBC London which formed part of a fascinating program about cancer on World Cancer Day. The show includes discussions with leading experts on cancer who now tell us that one in two people will now get cancer at some point in our lives. This is down to our lifestyle choices and the fact that we are living longer.The good news is that more people than ever are surviving cancer.There is also an extraordinarily moving interview with a gentleman -Pete diagnosed with terminal cancer. Pete says that the most important thing that he has learnt since being terminally diagnosed is that "life is a gift" and that "the most important thing I have learnt in life is love,this is what matters".
To listen to the program in full click on the link, Chris's interview starts at 54 minutes into the program.

Chris hard at work on the radio!

The book has also received some fantastic reviews from all over including an article in the Express- 20 life lessons from Cancer Survivors and even from blog sites such as Vortex Bloggery-What do I say to someone with Cancer?

On the rear cover of the book Bob Champion calls it a "Very inspirational book" and the Nursing Times saying "What a wonderful book.I laughed,I cried and was inspired"

In an e-mail to me Chris shared –

“ This astonishing,crazy and sometimes frustrating journey started as nothing more than a self-published project,as a result of being diagnosed with cancer many years ago. It soon became one of the best selling cancer survival books. I’d always been convinced if I could get this book in the hands of anyone touched by cancer it would offer them great support, hope and comfort. My only problem was proving it to a publisher.”

Chris goes on to say-

“Now thanks to the incredible generosity and power of Oneworld Publishing, who instantly recognized how beneficial this book is to anyone touched by cancer, it is now available to a much broader audience, than I would ever have been able to achieve through self publishing.”

“Finally however, if it wasn't for the kindness, trust and support of the survivors who let me use their deeply personal stories in the book, none of this would have been possible. Thank You!”

Chris is keen to get across in the radio interview with Vanessa Feltz that on World Cancer Day we should be focusing on the positives...more people than ever are surviving cancer. And this is the message underpinning the Cancer Survivors Club book and a message that I have always tried to promote in my blog. Yes, I have been through two major surgeries now in my battle against Psuedomyxoma Peritonei, but I'm still here, still fighting, still running, still caving, still loving my family and still loving life. This is the message that Chris and all the cancer survivors in the book are shouting loudly...

So if you or your family have been touched by cancer or you want to be inspired by some truly uplifting stories then go buy a copy...



Sunday, 18 January 2015

A New Year.....

As the sun rises on a New Year many of us are full of wonder as to what the months ahead hold for us? Most people are looking forward to summer holidays, birthdays and those special occasions that pepper the year ahead however, for the PMP sufferer the year ahead can be full of very different things.

 For the newly diagnosed the year holds days full of fear as to what might lay ahead, tests , surgery and  uncertainty. For those fresh from treatment the long road to recovery lies ahead but a feeling of relief grows inside with every day that passes and the dawn sun rays feel warm on your skin as the spring beckons . For those of us that have been free of Pseudomyxoma for some time there is one date that is burned in our mind; annual scan day. Will we be lucky enough to receive the N.E.D (no evidence of disease) letter in the post we all crave or will the beast return? Those two weeks or so between scan and results are terrifying.  And then there are those among us who have been told the devastating news that there is no further surgical option. I can’t imagine how this must feel, the fear of what the future holds, the clock ticking loudly in your ear. Unimaginable.

To stand on the front line battling Pseudomyxoma year in year out as your fellow soldiers are picked off by the PMP sniper is a sobering place to stand. But rest assured our army is strong, we stand tall, we stand united and one day we will win the war.

Personally 2015 has started well, I'm fit and well. Lucky enough to have come through two surgeries relatively unscathed.  I still run two or three times a week and am still caving regularly (in fact I was underground only last night!). Investigations are still under-way regarding my vitamin B12 deficiency; the regular jabs have helped me immensely and I feel like a new man. Recent blood tests have shown an abnormal level of protein in my blood and further investigations are underway. I also have a SeHCAT scan in early March. This is a new type of scan for me. It’s done in two parts and for me is to test the bile absorbency within my bowel. From what I understand at the first scan I am initially given a radioactive pill and then don’t get scanned until about two to three hours later. The level of radioactivity is recorded and then I am sent away and have to return seven days later for a repeat scan where again the radioactivity level is recorded. From the two test results the level of absorbency can then be ascertained.

Within the body bile is produced by the liver to help emulsify fats in the digestive system and passes through the gall bladder and into the bowel where it is reabsorbed at the ileum. I had a liver capsulectomy, my gall bladder was removed and had a right hemicolectomy in my first surgery, all which could have affected my bowels ability to absorb bile. We’ll see what the test results have to say.

My last post advertised the second Pseudomyxoma patient day at Basingstoke and North Hampshire hospital. As most of you are aware I was unable to go this year due to my eldest’s 18th birthday falling on the same day. However the reports back were that the day was once again a real success. Having run one of these days before I understand the format had been improved to make for  an even better day than the first time around. A close PMP friend of mine Robin Newhouse attended with his wife Karen; this was the first time they had been. Both thoroughly enjoyed the day and found it extremely informative. In an e-mail to me Robin wrote...

" I am sure that all fellow PMP sufferers who attended found the whole experience as equally uplifting as we did-it was clear that we are certainly not alone in dealing with this uncommon prognosis, and really encouraging to meet fellow sufferers and professionals to discuss and review our experiences.

I believe that the way ahead will offer more encouragement amongst those affected from a closer 
degree of contact with their surgeons and clinical teams,and to be able to participate personally was really helpful in this respect, by attending the Meeting.

We found the break-out sessions that we attended, Sessions 2 and 4 particularly helpful.

From the discussions within our Breakout Session 4, chaired by Tom Cecil, it was very encouraging indeed to learn that there are plans to create a dedicated website/portal which will offer all of those involved, the patients and the clinical teams, a new opportunity to inter react, and thereby facilitate the exchange of information."

The patient forum run by Basingstoke and North Hampshire Hospital is now a date not to be missed if you or a member of your family suffer with Pseudomyxoma Peritonei. Here the most up to date news on diagnosis,treatment and care can be heard from the leading experts on this subject. I strongly advise attending, its also a great opportunity to meet fellow sufferers of a disease that affect just 2-3 people per million per year.

On another positive note I have just found out this week that the company I work for will be doing a dress-down day to raise money for Basingstoke and North Hampshire Hospitals Pseudomyxoma and Colorectal Cancer Trust Fund in May. Any money raised by the staff will be matched pound for pound by Nisbets Plc. It's fantastic news and I am chuffed to bits that the business has chosen to help the hospital that has done so much for me and many other Pseudomyxoma and bowel cancer sufferers. Without them I wouldn't be writing this today...