Pancreatic Cancer Patient Biographies Pancreatic Cancer Patient Biographies In February of 2005 I suddenly, in fact overnight, became jaundiced. In hindsight, I had been 'under the weather' for several months previous to this with symptoms such as general lethargy - I have always been active & reasonably fit - and a feeling of discomfort in my abdomen, which I put down to over-work and stress. A couple of days before I went yellow my urine had changed to a dark brown colour and my stools had turned white. I had decided to make an appointment with my doctor but the jaundice beat me to it!
A blood test revealed a very high Bilubrian level and I was referred to Winchester Hospital where an ultrasound seemed to show gallstones to be the culprit. However, over the next two weeks I had 2 Endoscopy's, which proved difficult to remove the stones so I was admitted as an in-patient and scheduled in for a gall bladder removal as well as the chance to remove the stones from the bile duct. It was during the operation that the surgeon discovered a problem with the pancreas - I also thought it strange to wake up from the Op with a bladder catheter and a couple of drains from my side - and, after more tests and 2 more weeks in hospital, I was diagnosed with Pancreatic Cancer. During the time between the operation and the diagnosis I was blissfully unaware of the potential outcome and I was convinced I had a bile duct problem. I had a plastic stent inserted in the bile duct to open it up and clear the jaundice.
This diagnosis was given to me on a Friday (April Fools Day!!). I was allowed home for the weekend to digest this news and was expected back on the ward on Monday morning to meet my doctor and to discuss the options available to me. At home my wife and I decided to be honest about the situation to friends and family alike. I always prefer to face up to a situation and not hide from the facts. The hardest time was talking to our daughter, aged 12, but information given to us from The Wessex Cancer Trust proved invaluable in getting the message across. The surgeon at Winchester informed me on the Monday that I was one of the lucky 15% whose tumour was operable and I was referred to a consultant at Southampton General Hospital. When I left Winchester I was given a prescription for a special medical liquid food called ProSure. This certainly helped me re-gain some of the weight I had lost during my month long hospital stay.
In mid-April I had my appointment and he outlined the procedure to remove the tumour. The operation was called a Whipples Pancreatico Duodenectomy and involved a 12-hour operation to remove the head of the pancreas along with the duodenum, a bit of the stomach and a section of the small intestine. Despite the severity of the operation I was still feeling lucky because I was still one of the '15%'. In May I was admitted and a last minute CT scan still showed that I was still operable and the next day I went into theatre. This is where things went wrong. It was discovered that the tumour had spread and a lesion was found on the liver, which they removed to discover it was malignant. The operation was halted at this stage because it was felt I would have more of a chance to fight the cancer the sooner I could get out of hospital and start chemo. The surgeon instead performed a bypass from the stomach to the duodemum.
I would like to mention at this stage that since the onset of my problems, back in February/March, I decided to take time off work to help fight my illness and when I was diagnosed with the cancer I gave up work completely. I have been lucky because, as I run my own business as a freelance photographer and work from home, I had no overheads as such and therefore didn't have the financial pressure to contend with. I have since decided that whatever happens to me I will not return to commercial photography but look to do something "new" - after all, I have been in photography since I was 16!
Anyway, back to getting out of hospital. I was discharged after 10 days and the next stage was a meeting with my Oncologist. That was difficult because, when I asked about the prognosis, I was told 6 months to live but up to 12 with chemo! My wife and I decided not to let our daughter know about this latest development but to keep her fully informed about the treatment and possible side effects of the chemo. We also decided to be positive about this news and to believe in the fact that doctors always give the worse case scenario! On June 6th I was started on a cycle of Gemcitabine, which involved an IV injection once a week for 3 weeks then a week off. This was to be repeated 3 times, after which I would have a CT scan to gauge the results. Apart from nausea and feeling very tired, I also had a nasty metallic taste, which gradually went towards the end of the week. On 18th August I had the scan. This showed that although the tumour, which incidentally was 3cms at on-set, hadn't decreased it also hadn't increased. During that first cycle of chemo I managed to come down with 2 infections, both of which only involved a few hours hospital visit followed by course of antibiotics. Just out of interest, the first infection came during the second week of my first cycle. I had been out for an evening ride on my motorbike and after I got home at about 9pm I suddenly started shivering and within an hour my temperature had gone up to 38c. I ended up in A&E at 11pm! The second infection came during the second cycle and happened on the morning of the Live 8 concert! The symptoms again were flu like accompanied by a rise in temperature, this time to 39C.
After that CT scan in August I was put on another cycle of chemo using the same format as before. This started on 10th September. Over the next 4 weeks or so I managed to come down with 2 more infections, both resulting in hospital stays. The first was for 6 days and a week later I was in for another 9 days. This was the worst so far because I caught bacterial meningitis and then C Diff, resulting in colitis. Great! It was also found that the bile duct stent had become blocked, so this was removed and a more permanent metal one inserted. I missed 3 chemo sessions. At the moment - November 5th - I am still on antibiotics but have resumed chemo, so we will see what happens next.
At the present time my appetite is good, I feel well in general, and I have no pain as such, just a little discomfort which dihydracodeine controls well. I am still riding my motorbike and I have regular aromatherapy sessions at the Macmillan Centre, which helps me relax and de-stress. We have had three short holidays in between chemo - a canal boat holiday, a few days in Belfast, and a long weekend in the Lake District. I have lost about 10 kilos in weight since February, but this seems to have stabilised now at about 70 kgs, which for my 5ft 8in height is acceptable.
I will keep you informed of my progress!
23rd March 2006 - The story continues...........
I can't believe that 4 months has passed since my last communication but life still goes on, too fast! After my previous entry on November 5th, I carried on with chemo until I had a scan in early December and then waited for the results. On December 16th I had a meeting with my Oncologist and the news was mixed. The Gemcitabine had done its job and kept the tumour in check although it hadn't reduced. The good news was that I was given a 3-month break and didn't need to think about any chemo for that period. The bad, or frustrating news, was that I felt I wanted to have something more positive to happen to help combat the potential growth of the cancer. I felt impotent to that extent but realised that there is only so much that can be done at any one time. So, I looked forward to Christmas and a holiday we had planned sometime in early spring.
Christmas was great, spent in Darlington with my family, but in January I ended up back in hospital with a blocked stent. This time I was in for 3 weeks and my weight went down to 65kg.I now have an extension to the original stent and hope it lasts longer than the previous arrangement. February was difficult for me in so much as I felt depressed and made the mistake of turning to drink when I got particularly low. It doesn't work! In Mid-March we had a great holiday in Cyprus having managed to get travel insurance through Tesco. At least I was covered for all normal situations but not any that was related to the cancer. I thought that that was fair enough because I could always get a flight back quite quickly in case of any problems.
On the 22nd I had my meeting and the news wasn't great. My CA count had risen to 17,000, which, although it sounds disastrous, is not as bad as it seems but it does mean of course that the tumour is growing. Also it was decided not to continue with the Gemcitabine. However, due to the fact that I am gaining weight, some of which I am sure is down to a good balanced diet and I still take Prosure daily, it was decided to give me another CT scan and it looks like I will be offered another type of treatment. I will keep you informed! On a more personal note, I have recently being prescribed Creon due to my enzyme deficiency and I have also been diagnosed with a hernia, which has occurred at the site of the attempted Whipples operation. The hernia is more annoying than life threatening and they may operate but it does depend on any future chemo I may have.
One of the most positive things happening at the moment is the initiative taken by Sue Ballard in getting charity status for Pancreatic Cancer UK. The initial meeting of our local support group on the 23rd March in the Macmillan Centre at Southampton General was well attended and will prove invaluable in providing support to those with the disease and family & friends affected by it.
It is now Sunday 26th March, and we have just returned from our first church service for a long while. It just so happened to be a healing service, which both Lynne & I found to be beneficial. More of this later.
6th May: Ray's wife reports: The chemo started yesterday. The regime is Cisplatin every 3 weeks for 12 weeks, and 1800mg of Capecitabine twice a day for 2 weeks, then 1 week break. The side effects sound horrendous, but maybe he will escape lightly. He was advised not to ride his bike during treatment, in case he has an accident & needs a blood transfusion for example. But that's like telling a bird not to fly! He's off for a ride as I write. Well, life is for living after all.
First produced 5th November 2005
Updated 14th May 2006