Updated September 2018
Peter, 66, diagnosed in 2013 with operable pancreatic adenocarcinoma
Nine months ago, I was with my wife Pam, getting ready to travel to Australia for a holiday of a lifetime, I had our route all planned and was really excited. A week or so before I was due to travel, I realised that I had a small pain in my tummy and I had suddenly started weeing a beer colour. Slightly perturbed I thought this is an ulcer, so I thought I had better get it checked out before travelling. I saw my doctor and took a wee sample with me, he felt my tummy and was not overly concerned, he then dipped my urine and I could see him looking a little startled.
He then asked me to go for an ultra sound ASAP and suggested I should travel from Liskeard to Launceston on the Saturday morning. I said fine and had the ultrasound, without thinking too much into it (bearing in mind that I had run 6 miles with my local Hash House Harriers the day before I saw my doctor). After the ultrasound I asked if they had seen anything, they remained non committal, but said they would send the results off to my doctor ASAP. Accepting this and without a care in the world and not realising my world was about to come crashing to the ground, I went shopping on my own.
If I was able to have the Whipple operation I could possibly survive
Monday morning came and the phone went at 12 noon, it was my doctor, who said could you come to the surgery at 1pm and "Bring your wife with you", panic set in and I felt why bring the wife? I went up at 1pm and with Pam beside me, he came right out and said "I'm sorry Mr Andrew, but I am afraid you have pancreatic cancer". I had heard of it and was stunned as was Pam. He went on to explain that he would put me in touch with the pancreatic surgeon and would ensure I had a CT scan within the time limit laid down. He explained that if I was able to have the Whipple operation I could possibly survive, but I needed my fitness to survive. Alternatively it would be palliative care which, after recognising what palliative meant, I realised meant the final outcome would be dismal. I went home stunned and bewildered, but no tears.
We cancelled the holiday right away (life being more important than a holiday). We told the family and friends who were all shocked. A week later I met my surgeon and by this time I had turned yellow (my Granddaughter said, why has Granddad turned a funny colour and his eyes turned green). It was a blocked bile duct causing it via the tumour, the surgeon kept me on tender hooks by saying he couldn't tell me yet if I could have the operation or not, but he sent me to a ward right away for a minor stent insertion.
We were all petrified but knew it was my only chance
The surgeon told us to get our affairs in order and make sure we had a will done.
I went to the ward and the next morning I was taken down for a stent insertion via the mouth and stomach. Whilst there, my surgeon made contact and told me I was able to have the Whipple operation, would you believe, I felt ecstatic, went back to the ward and phoned Pam right away.
The stent worked and I went back to normal colour, (greatly upsetting my granddaughter). I went home and 2 weeks later I was admitted for the 10 hour operation, we were all petrified but knew it was my only chance. Prior to the operation I had to undertake a physical test, including riding a bike, breathing tests, ECG etc.
I had survived the operation
I came round in intensive care, with my wife beside me, I had survived the operation. 2 days later I was in the high dependence ward and then normal ward. I went home after only 6 days.
I was still feeling very poorly, but gradually improved, taking a few steps and eating normal food with creon additive. The operation was on the 10th December, but by the 28th December I had become very poorly again being sick and had diarrhoea and was deteriorating all the time. My doctor referred me back to the surgeon who readmitted me and after a day or so took an ultrasound and took samples of a greenish liquid coming from my lymph glands in my abdomen. The surgeon stopped at giving me antibiotics and said he would put me on a high protein diet and hopefully it should clear it up. I was in hospital for 10 days and the liquid gradually dispersed, and I felt better.
When I got home I struggled but got stronger each day
I was discharged, when I got home I struggled but got stronger each day and tried walking a few yards which gradually built up. I was really improving. In March I started chemotherapy under cancer research clinical trials, to ensure no loose ends remained. The chemo has been tough and sent me back energy wise, with flu and sickness symptoms very prevalent, but I finish next month and the signs at the moment are good.
I am back with my hash club and doing some fast walking and jogging of between 4 and 9 miles, I hope to run properly when the chemo finishes. During this period my wonderful 2 sons James and Jonathan Andrew together with their sister Katie Demelza organised a sponsored run doing the Plymouth half marathon in April last. I was gobsmacked that they wanted to do this for me, they raised approximately £2350 for your wonderful charity (Pancreatic Cancer UK), I am so proud of them.
The NHS local doctors/nurses, my surgeons, nurses, anaesthetists, oncology doctors and nurses and everyone else involved in the NHS has been beyond belief in their care and dedication, I applaud them all.
I also thank my lovely family, Pam for her total support, my children, my 94 year old Mother, Esther, my brothers and sister and all their children. Our lovely kind friends and acquaintances and your kind selves, who have been very informative on your website.
Update September 2015
Approaching the 2nd anniversary of my diagnosis
I am now approaching the 2nd anniversary of my diagnosis and although it has been the most traumatic time of my life I am so thankful to be alive and kicking.
I am getting on quite well with my redesigned stomach area after the Whipple, and taking Creon is no problem - when I go out, I keep the tablets in my glasses case.
I finished chemo, which was a double dose (intravenous and tablet forms) as part of Cancer Research UK’s clinical trials, and they continue to monitor me every 3 months.
Going back to see the oncologist every 3 months
Going back to see the oncologist every 3 months is a little scary, but I know that early detection of any reoccurrence is certainly a great plus to longevity of life. I did have a scare 4 months ago when my blood count was very high and this, I learned, was an indicator of a possible reoccurrence. My doctor decided to take another blood test and my blood count had gone down substantially, but he decided I should have a CT scan to see if anything was happening in my body. I was put on the urgent list and thankfully, 3 weeks later, they informed me there was absolutely no indication whatsoever of a further tumour - I breathed a large sigh of relief.
I have to go for another check-up later this month, and it is always a tense time when I visit oncology, with the blood count reading meaning so much.
My outlook on life has changed
On the plus side, my whole family mean a terrific amount to me; my 4 grandchildren - Isobel, Patrick, Chloe and Archie - are amazing and give me great solace. My most recent one, Archie, who has been born since my diagnosis certainly makes me glad to be alive. My outlook on life has changed and I love wildlife and Cornish scenery even more than I did before, I especially love looking at the sky, with its changing patterns and this enthrals me. My biggest problem since I finished chemo, is that I cannot work for more than a couple of hours without getting exhausted. I do think though that this is gradually improving. I also still get flu like symptoms, especially if I overwork. The other negative point is that I have developed a double hernia right on the site of my operation, but I saw my surgeon last week and he is going to repair it in a couple of months. I’ll be glad when that is done so I can run better.
I am running regularly again now with the Hash House Harriers and I absolutely love it - mixing with friends and getting fitter in the process, but then going to the pub after the run and having a couple of sociable real ales.
Update November 2016
I am “CLEAR OF CANCER”
Just over three years now and my oncologist has just told me that I am “CLEAR OF CANCER” I am immensely pleased and feel I am able to fully live again. I regret that I still get tired but I can live with that. I will still visit my oncologist every three months for the next couple of years as part of Cancer Research UK’s clinical trial at the Royal Liverpool and Broadgreen University Hospital NHS Trust. This again gives me reassurance and comfort knowing that if anything did happen they will catch it early.
I have had a large hernia, which developed on my scar wound attended to very successfully and again I am very happy with the service of the NHS (they are wonderful).
Regretfully, my left knee joint has developed bone to bone rubbing and I need a joint replacement. I am not going to go through with another operation at this time as I am fed up with the surgeon’s knife, eventually I will have to have it done though, I know.
Getting on with my life
I am getting holiday minded again now and my wife Pam and I have had two lovely breaks in England this year and we, together with my daughter Katie and her boyfriend, had a wonderful holiday in Lanzarote.
It is much easier to travel now as insurance is almost back to normal, HOORAH.
I try and succeed nowadays in not trying to think a lot about CANCER. It is a terrible word and I am now just getting on with my life and enjoying my family, my lovely grandchildren and friends. Hashing is still a major part of my life as is all sport, I am VERY HAPPY TO BE ALIVE AND POSITIVE.
Finally, I am still keen to help others with cancer, whether personally or through Cancer Research or Pancreatic Cancer UK.
Update September 2018
I am up to 5 years since diagnosis next month. The magical 5 years at which only 5% survive, but I am here alive and kicking and very happy to be doing so. It is strange that in doing my update in Nov 2016 I did not know what was waiting around the corner.
In November (yes the same month that year!) my oncologist thought I should have a routine CT scan to check that everything was ok. To be blunt it clearly wasn’t right as when I was called in I was told that a tumour had formed on my remaining pancreas and he suggested that I should have the rest of my pancreas out (pancreatecomy) together with my spleen, (splenectomy) - another great shock for my system.
My wife Pam and I decided that I should go ahead and have yet another operation. I was frightened and bewildered but went ahead and had the operation which again saved my life, but it had wandered into a lymph node, so I had to endure chemotherapy again, which too be honest was much worse than the last time but I endured it.
Obviously no pancreas meant Type 1 diabetes, and no spleen meant antibiotics for life. I have handled both fine and I find neither of them too much of a problem. I also take a concoction of other tablets.
I feel quite weak and tired most of the time but I come through it by resting when required and doing what I can, my family still supporting me all the way. I did venture into a swimming pool this year and caught a virus in the pool, this took me about 6 weeks to recover from. My doctor also put me on statins, which lowered my cholesterol to normal but again the tablets made me ill, so I had to stop them and I have felt a lot better since.
I had a full body CT scan in August from my groin up to my neck and everything was clear, thank goodness. My blood tumour count was a little high, so are monitoring this.
I have to say that anyone in a similar situation and reading this, please go ahead and have the operation, because it means living and I want to live to see my wonderful grandchildren (Isobel, Patrick, Chloe and Archie) grow up and give me great enjoyment in watching them do so.
Take my advice and fight this dreadful disease for all you are worth, thank you for reading my update and if it helps just one person it will have been worth it.