Paul was diagnosed in 2006 with inoperable adenosquamous cell carcinoma of the pancreas. He had a total pancreatectomy and chemotherapy.
I’m Paul, aged 57. I’m married with two daughters (19 & 17) and two stepsons (21 and 26). I live in Nottinghamshire and for the 31 years up to 2006 worked for a multinational computer manufacturer. I have generally been fit and healthy, not smoked and drink socially.
Life was good but extremely stressful at work. I was a Business Operations Manager responsible for the sales, revenue and profit achievement of my division. Long hours, constant pressure and stress. Generally I was coping well I thought.
Around February 2006 I started to feel like I had indigestion or mild heartburn. I let it ride for a week or two then spoke to a pharmacist at Boots and got some Gaviscon and Zantac. Took these for a few days but they didn’t make a difference. I had also lost about 8lb and noticed my appetite was slightly ‘off’.
Thursday 30th March 2006 – I noticed blood while wiping after going to the toilet. Dark coloured, not bright, so I knew it was coming from somewhere inside. I was concerned but thought I would see what happened over the next 24hrs. The next time I went to the toilet on the Friday was the same. OK, mild concern rising! On Saturday 1st April (some Fools’ Day!!) I called NHS Direct. They went through their questions and once I mentioned blood they said I should go to A&E. Well, most of us know the queue lengths so I decided to call the out-of- hours GP service, they also decided that I should see the duty GP at the hospital. The GP took my history and performed a rectal examination. She told me that I was to be admitted straight away to hospital with suspected stomach ulcer which could be about to perforate. OK, tricky but not serious!!
I was admitted onto the EAU (Emergency Admissions Unit) where they took a full history, bloods, urine, another rectal exam and chest/abdomen X-rays. They said I would also need a gastroscopy but this may not be scheduled until the Monday depending on availability of a specialist. A while later a registrar came and explained that my bloods were severely ‘off’, particularly my Liver Function Tests (LFTs).
An hour later a team arrived – consultant and three doctors. Serious faces and very direct questions. They said my LFTs were seriously ‘off’ and something must be causing this. They were treating this as something separate from the suspected ulcer. So, they were thinking perhaps some kind of hepatitis – had I been with prostitutes, had gay sex, was I on drugs, taken an overdose of anything…..all of which I answered no, no, no! I knew they didn’t believe me as it all didn’t add up. Well, off they all went to do more tests……
Sunday 2nd April – I was transferred to a medical ward. I had more X-rays and an ultrasound. On Tuesday the doctor picked up what she thought was a thickening of the bowel. They decided maybe it wasn’t a stomach ulcer but a bowel issue so ordered me to have a colonoscopy (tube/camera inserted rectally). At the end of their examination the operator called my consultant to say that my bowel was clear. She then asked them to immediately perform the original gastroscopy. Afterwards I asked if he had found my ulcer – yes, he had found some ulceration. Great I thought – nothing more serious!
Back to the ward to rest and sleep the procedure off. Well, the team arrived at my bed and pulled the curtains. Concern rising…Yes, they had found something which they had taken a biopsy of. They couldn’t say what it was until they had it examined but there was some kind of lump in my duodenum. Anyway, try not to worry and they had now scheduled a CT scan for later that day.
Was this really happening to me? Was each day with its attendant tests leading me down a path I didn’t want to be on? I tried to be positive. They would find an innocent explanation and fix it. I would be back home in a day or so with life back on track.
Thursday 6th April – this was a long day. I almost felt a fraud taking up bed space. After lunch I was in the day room. Through the glass doors I could see my consultant and a nurse coming down the corridor. The CT scan confirmed I had a tumour on my pancreas. It was large. The biopsy confirmed it was malignant – cancer. She was not a cancer specialist so I would be referred on. She could not say that this would not severely impact my life for the next 6-12 months. She could not say that it would not shorten my life. I could go home and they would ring me on the Friday after they had reviewed my case and available options. Bombshell.
The first weekend was a complete and utter nightmare. We had to tell the children, but how? Di and I agreed we would wait until I knew the exact treatment plan so we could tell them of the problem but also explain the treatment I would get to fix this! I went from despair to hope in regular hourly cycles. Di was being so strong for us both.
Friday late afternoon my consultant called to say the MDT (Multi-Disciplinary Team) had met. Their conclusion was that the tumour was inoperable and I had an appointment with an oncologist to plan chemotherapy. I asked why they could not operate but she said she wasn’t there but that the tumour was too large and too complicated – I should ask more of the oncologist. Lots of questions which right now were all unanswered. The biggest being why not operate? I knew that would be the best chance to try to effect a cure but it seemed it was not for me…..
I went on the internet to try to find some answers. Oh boy, not the best idea. I found an excellent site – Cancerbackup* – which was to become a saviour in many respects. Another site was I think American but typified so many out there. Full of stark statistics and depressing outlooks and mortality rates! I knew that my cancer was difficult and had a poor prognosis. That was enough. I decided then and there NOT to surf random sites. I had to fight this and become positive somehow. I did not want to die. I did not want to leave my wife and children.
Telling the children was so hard. We sat them down together and explained I had a tumour but that I would start chemo and get better. The first time I looked in a mirror I cried. I looked at my abdomen and tried to picture the horrible, vile cancer lying beneath. Why were you there? Had I contributed? Had the stress of work been responsible? Was it in any way hereditary (my father had died of cancer of the bowel when he was 58)? More unanswered questions that kept me in that circle of sadness and despair.
Tuesday 11th April 2006 – Di and I met the oncologist at a private hospital. I had private cover through work. The oncologist explained the nature of the tumour, its relatively fast-growth nature had positive benefits in terms of potential ability to respond to treatment. It was 7cm long located in the head of the pancreas and protruding into the duodenum. The CT scan did not indicate that cancer had spread outside of this which was very good news. I asked why surgery had been ruled out. He said it would be too dangerous and the tumour was too big.
So, the plan was a 3 cycles of 3-weekly cycles of chemotherapy. First week Gemcitabine and Cisplatin, following two weeks just Gemcitabine. We would start the coming Thursday. I left numb and with brain cells exploding with the new information.
Generally I would be OK on the treatment day but would go downhill on days 2 and 3. No energy, tiredness, felt sick, no appetite. I settled into the routine of weekly visits to my lovely nurses. Sometimes friends would drop by while I was there to help pass the time and give me support. I developed jaundice and needed blood transfusions. We suspect the tumour was blocking the bile duct. After a week or so the symptoms eased. I became tired and lacking energy.
The oncologist then planned the next phase.
I went to hospital for the planning consultation. This involved a CT scan to determine if the chemo had had any effect and to determine the angles of attack for the radiotherapy. Good news, the tumour had shrunk from 7cm to 6cm. Small but in the right direction!! I was to have 25 fractions of treatment (5 weeks Monday – Friday) with three angles of attack. Side effects were unpredictable but would certainly include chronic fatigue. Alongside this I was to have weekly chemotherapy with low-dose Gemcitabine.
So, the next phase. Daily drives to the hospital (45 minutes each way), a wait of up to 30 minutes (not bad) then 10 minutes of actual treatment. Plus of course a few hours once a week at private hospital. It took its toll. The lethargy built up. I prided myself that I drove every day bar the last two when Di drove me.
After treatment finished we went as a family to our apartment in southern Spain. Di and the children so, so needed a break. With every day I grew a little stronger. After my return I was scheduled in for a CT scan to see what effect the treatment so far had had…..
Surgery: chance of a ‘cure’
I had the CT scan and a week later Di and I met with the oncologist to get the results. He told us that not only had the tumour reacted positively to the Radiotherapy/chemotherapy but it had shrunk from the 6cm to 2cm!! This was more than anyone could have expected or hoped for. The next step was to go back to the surgeon to re-evaluate that option now that size was not the issue.
Di and I met my surgeon. Quite a change of mood from that last time we met! He had my scan films on the display unit and straight away said that we had achieved something he had not seen before. That with the tumour so much reduced he felt surgery was viable and indeed was my only chance of a cure. He was concerned about the viability of my pancreas as it had been severely affected by the radiotherapy. He suggested keeping our options open in terms of a Whipple’s procedure or a total pancreatectomy. For my part I said that if there was a choice between removing my pancreas and me being a diabetic for life or leaving some in and risking a relapse then I vote for life!
We left him reeling with the promise of life – yet fearful of the deliberate decision to elect for serious life-threatening surgery and the associated risks. We had about 3 weeks to get through. Hope abounded everywhere with friends, family and colleagues rooting for me.
I was positive and hopeful yet so, so very scared. Suddenly it was the night before surgery. I sat in my study and wrote a letter to each of my daughters – one they would only get to see if I died. I cried buckets as I said what I wanted to say to each of them. This was so hard and my lowest moment. I took Di through the folder and could hardly speak.
I was looked after superbly by the staff and the anaesthetist. The operation lasted much longer than anticipated. My spleen’s blood supply came straight through my now useless pancreas so they had no choice but to remove it. In all they removed my pancreas, duodenum, gall bladder and spleen. Subsequent analysis showed that the tumour was quite dead and no live cancer cells were detected anywhere else. What a result!
Slow is the word for this section. Slower than the slowest you can imagine. Anyone reading this about to have similar surgery please expect to take anywhere from 12-24 months to approach true normality. The problem is one of expectations. I felt exhausted. Had no energy. Had no enthusiasm to do anything. Didn’t want to walk. Didn’t want to go for a drive out. I stopped trying to see improvements day by day and instead looked for subtle changes week by week. That worked better. Gradually things improved. My weight started to plateau and begin to rise.
A big problem was depression. Some of it I’m sure caused by blood sugar issues as I grappled with the diabetic control. But I think it dawned on me that I nearly died. Everyone else knew this but as I had lived from day to day I had not focused on this outcome – just making the best of the moment, getting behind the treatment. This all hit me like running into a brick wall. So, I thought about it all and cried. For what I might have lost. My devoted and supportive wife. My beautiful children who had been there for me whenever I needed them. It was a tough time with bouts of insomnia. But time heals and gradually I came to terms with it all and as I grew stronger my perspectives changed.
I am as of April 2011, 5 years since diagnosis. Things are looking up to be one of the 2%! My insulin allergy is under control as generally is my diabetes. I have some long term effects like neuropathy in my feet, tinnitus, occasional bouts of tiredness but in the whole scheme of things relatively minor.
Finally, I must thank Di, my children and my close friends. Without their endless, selfless support I know I would not be here. My life is all the better for this experience and the legacy is a determination to live it to the fullest, to maximise family time and to help fellow suffers where I can.
*Cancerbackup and Macmillan merged in 2008
Update August 2017
It is now almost 11 years since my surgery and as you can tell I remain part of the 1% to survive 10 years. Life is good and busy but with frequent holidays to look forward to.
Health wise, I cannot really complain. My insulin allergy flares up quite frequently despite the desensitisation I went through and being on an insulin pump. Unlike many, my Creon management is good, I take just one 25000 capsule with each meal. I am troubled by bilious reflux (through having my gall bladder removed as part of the pancreatic cancer surgery) which can be quite painful. I also get frequent, quick onset flu-like symptoms: ache all over, shiver, no appetite. No real explanation from anyone thus far. I just take to bed with painkillers and usually I’m back to normal 24hrs later. Odd. But all this pales into insignificance when I know what could have been.
It is great to see increased awareness of pancreatic cancer in the media through the hard work of all those involved with the various charities. Earlier diagnosis is vital to increasing survival and I await real progress on simple tests becoming available.