Roy

Roy updated his story in May 2019.

I was a fit and active 59 year old male who attended circuit training at my local gym and attended my local running club.

In October 2013 I attended my GP with what felt like a pain across my stomach area. He thoroughly examined me and pressed on my stomach area. He said he thought it was a pulled stomach muscle.

They had found a tumour

In January 2014 I returned to my GP with pain and discomfort in my stomach area. I said it felt like a stomach cramp and I was prescribed some medication for this. This did not improve the situation. In February 2014 I returned to the GP with continuing stomach pain and explained that I had some form of constipation.

Thankfully in January 2014 I had my 60th birthday and this GP said I could be referred for the new NHS bowel cancer screening programme for anyone over 60 who had a change in bowel habits for more than 8 weeks. She made the referral and requested blood samples and requested a cancer screening blood test. I saw a consultant within 10 days who examined me and put me forward for a colonoscopy and a CT scan.

The colonoscopy was clear but I saw the blood result showed a CEA (cancer count of 109). Several days later I went for the CT scan and returned to see the consultant within the week where he stated they had found a tumour in the head of my pancreas. He did not deal with this type of cancer and referred me to a specialist cancer centre. My wife and I suspected it could be pancreatic cancer but were still shocked on hearing this news and on leaving the consultant became distressed, the nurses offered us a side room where they got us a cup of tea until we were ready to leave.

The operation went ahead and was successful

We saw a top consultant at the specialist centre and he explained that he would carry out the Whipple’s procedure to remove the tumour. Whilst waiting for the operation I was determined to keep as fit as possible by doing a brisk walk around my local lakes everyday and keeping positive and ready for the fight ahead.

Within a few weeks the operation went ahead and was successful. He removed the 3.5cm tumour from the head of the pancreas together with 13 lymph nodes and only one was found to be affected by cancer. I made a quick recovery in the intensive care unit and was later transferred back to my ward where I continued to make good progress and was discharged after seven days.

I am continuing to progress and feel stronger each day

I have continued with my steady progress since discharge and have increased my walking distance daily. My appetite has increased with my increased stamina. I saw him again in week six of discharge and I queried that I had gone from 81kg to 72kg but he said this is normal after this surgery. He examined my wound which is healing nicely and does not need to see me for another 3 months.

I am continuing to progress and feel stronger each day. I have a lot of family and friends’ support which has helped me through all this and am keeping a positive mental attitude. It is my long term hope to get back to normal life and even try a little jog when fit again.

Update July 2014

I have very slowly started to gain some weight

In view of my weight loss it was suggested by a Pancreatic Specialist Nurse at Pancreatic Cancer UK that I may benefit from taking Creon tablets as your pancreas does not always return to its full capacity following surgery.

I started taking the tablets several weeks ago before meals and noticed straightaway less discomfort on eating. My energy levels started to increase and I have very slowly started to gain some weight.

Update July 2015

I struggled throughout my chemotherapy

I struggled throughout my chemo of 6 cycles of gemcitabine. I had low neutrophils, low haemoglobin, and could usually only tolerate two of the three weekly sessions of chemo. At one stage, my haemoglobin was so low I had to have 2 units of blood transfusions at an outpatients unit. I was prescribed a course of 5 minor injections to try and boost my system which my wife injected into my stomach after week one of each chemotherapy cycle. Out of 18 proposed cycles I actually managed 12 and the chemo team were happy with this.

Being diagnosed with diabetes

Nearly one year later, in March 2015, I began to lose weight and had lost a lot of muscle tone. I also developed terrible night thirsts and also developed thrush. I attended my GP and was sent for a fasting blood test which confirmed I had diabetes. My remaining pancreas which had been working following surgery and chemo had decided to stop.

My GP immediately put me on tablets and gave me a blood testing kit and referred me to the diabetes clinic. (Another clinic to attend, but I thought after everything else I had been through what was a bit of diabetes?). At the clinic they decided I needed insulin and got me on a combination of fast acting and slow acting insulin. I only have to inject twice a day, once before breakfast and again before my evening meal, and I now feel a lot better.

The doctors at the diabetes clinic told me it would take a month for the diabetes to settle down and then another few months before I would begin to regain some weight and tone and, sure enough, it is beginning to return and I look and feel good.

Everyone told me things improve after a year, but I didn’t believe them

My consultant says he would not recommend scans for me in the first year after surgery and is instead monitoring me by bloods and my cancer tumour marker CA19-9. Everyone told me things improve after a year, but I didn’t believe them. However, now that I’ve passed the year mark, I look at my scar and I’m pleased with how nicely it has healed (although it is still a bit tender to touch).

I can manage my diet, and know what I can and can’t eat. I seem to enjoy light white meat and fish meals as these are easy to digest. I can also manage liver which is good for my iron intake. I try and eat little and often throughout the day. I have my porridge in the morning which helps with the diabetes and then take toast with me to eat about an hour or so later followed by a hot cross bun about an hour after that, followed by a sandwich for lunch. I eat plain nuts as these are a great source of ‘good’ fats. Obviously I take these with several Creon tablets every time to help with the digestion and absorption.

I know I still have some way to go as I seem to lack some strength compared to before, but I hope this will return.

Update August 2017

I’m now a 3+ year survivor. I suffer from low iron and need to take iron supplements twice daily and these in turn can cause constipation and I need to take medication twice daily for that. I still take lots of Creon with everything that I eat and I try to eat every two hours to get enough calories in me throughout the day.

I cannot seem to gain any weight but I have more energy. I mind my daughter’s energetic dog on weekdays and I am able to take him on long walks. I am back supporting my local football team with the usual crowd and a pre-match visit to the local pub beforehand for a glass or two of red wine (it makes the performance appear a lot better!).

Update May 2019

I’m now a 5 year survivor!

On 26th of April 2019, I reached my 5 year anniversary since my Whipple’s procedure to remove my pancreatic ductal adenocarcinoma (PDAC). I can now say I am a 5 year survivor!

I’m active and childminding my two grandsons (aged 4 and 2) together with my wife several days a week. I still walk my daughter’s energetic dog several days a week and enjoy a glass (or two) of red wine, usually before dinner. I am a diabetic, but I take metformin tablets to control this.

My ambition now is to become a 10 year survivor!