Gill

Updated: January 2018

Up until the end of last May 2015 I had very little knowledge of pancreatic cancer apart from knowing that Patrick Swayze and Steve Jobs had died from it. I never, for one moment, thought I would contract it. I was 62 years old and kept myself fit. I rarely drank, did not smoke and pancreatic cancer was not in the family history.

I first noticed something was not quite right last May Bank Holiday (2015) when I noticed my urine looked a bit dark, but I put it down to not having drunk enough water and maybe I was a bit dehydrated. Over the weekend it was still quite dark so I decided to keep an eye on it and go and see my GP if it got worse. Over the next few days I noticed that my stools were looking pale and slightly looser and I just felt “not right”. If I ate something fatty I suffered for it and with that I booked an immediate appointment with my GP.

As I was a new patient he had little history about me and decided to take some blood for various tests that also included a liver function test. Two days later I was back in his surgery for the results. My bilirubin was high and so were all the other tests results. At this point I was not yellow and my GP was convinced I had gallstones but I was not so sure. My son had had gallstones and I remember him being in chronic pain plus I had worked in histopathology in a large teaching hospital, therefore I had some knowledge that this was more serious than my GP was making out. My GP suggested another round of blood tests and I refused saying I wanted an ultrasound scan as soon as possible. As the word “tumour” or “cancer” had not been spoken then, I was not seen as an urgent case but an appointment would be made all the same.

Getting a diagnosis

A couple of days later I was starting to feel nauseous, my palms and soles of my feet were itching and I was turning a pale shade of yellow in my face but not (as yet) on the rest of my body. I returned to my GP the next day insisting on an urgent ultrasound appointment as I was in no doubt something was very wrong. Due to my insistence my GP scheduled me for an ultrasound test 2 days later. I went to my local hospital and had the ultrasound and all started well. It was when the radiologist went quiet and kept moving the probe in the same area that I realised this was serious.

At the end of the session I pushed him for his findings saying I had a right to know and what was going to happen. He confirmed I did not have gallstones but my bile duct was blocked thus causing the symptoms I was experiencing. He could not be sure of what the blockage was but it required immediate attention. I went home in a daze and very frightened. I live on my own and to have no-one at home to share this with was difficult to say the least. I rang my family and my 2 sons and said I would keep them posted.

I went back to my GP the next day and he had already had the results of the ultrasound. He said there was a blockage but I would need a CT scan to determine whether it was a tumour and exactly where it was. Again I insisted on a CT within a week and got one. I was beginning to learn that those who shouted loudest got seen quickest! Again I went to my local hospital and had a CT scan and the results would be sent to the Consultant Gastroenterologist. I saw him a week later and he said they had seen a mass on the head of my pancreas and at that point it was still contained within the pancreas itself. He also said the tumour size was 2.8cm but was slowly growing. I was beginning to be quite jaundiced now and was taking tablets for the nausea and itching.

The consultant said that I would now be referred to a hospital where they had a special HPB unit and I would be under the care of one their consultants and my case would be discussed at the next Multi-Disciplinary Meeting which was held every Friday. He also suggested that I have an ERCP which would take a biopsy of the tumour, and a stent would be put into my bile duct to open it up and allow it to operate properly again. I spent an agonising week waiting for my appointment to come through and in the end I telephoned the consultant’s secretary, who contacted the hospital, who then issued me with an appointment. All in all it was about 2 weeks since my meeting with the consultant so I felt that things were moving at a good pace.

Receiving treatment

I had the stent fitted and that was quite traumatic as the endoscopy room was fit to burst with lots of people. This did not help my nerves and despite 3 attempts to get the cannular in my hand I was beginning to get very anxious. Fortunately all went well and the stent was fitted and the biopsy taken. I would then have to wait another 2 weeks for the results and to have an EU endoscopy as well. I was told after the ERCP that the jaundice would slowly fade in about 2 weeks and the nausea and dark urine would begin to go.

However, no-one told me that I could experience pain and discomfort after the fitting of the stent and after a day I had dreadful abdominal pain that radiated around my back. After another day of pain I rang the consultant who asked me to go to hospital immediately for a blood test to determine if I had pancreatitis following the fitting of the stent. I went to hospital and had the blood tests and they showed up that I did have pancreatitis. By the following morning I was in a lot of pain so asked a friend to drive me to the specialist centre where I was admitted immediately and given morphine. After a stay overnight I felt better and was discharged with liquid morphine to take if needed. Fortunately after a few more days I was feeling much better and the jaundice was fading. It started to fade from the feet first and then up my body to my face and then my eyes.

Two weeks later (it was now mid-July) I returned to the specialist centre and had an EU endoscopy. This procedure is done to stage the tumour and see whether there is any lymph node invasion. My tumour had grown slightly and two lymph nodes appeared affected but the tumour was still within the head of the pancreas. The consultant explained all this to me and said that it was operable and I was a fit and strong candidate for surgery so I would undergo the Whipple’s procedure. Whilst I was anxious at such a massive operation it was an answer to prayer that it was operable. I felt lucky at this.

About a week later I had an appointment to see one of the HPB Consultants at his clinic. Yet another hospital I was visiting and whilst a newcomer to the area I was certainly getting to know my way round the NHS hospitals in the East Midlands! It was here that I met the wonderful consultant who would do my operation, and when I say wonderful I mean it! As soon as I walked into his office with my twin sister we both felt immediately that he was “the one” to do my surgery. This man’s warmth, genuine understanding and empathy at what I was going through were deeply apparent. He explained all the tests and the results I had had so far, and that surgery was the only option as without any treatment I would be dead in 6 months. My poor twin sister was very upset but I had total faith in him.

It was a massive operation and it took 9.5 hours. I lost part of my stomach, my upper bowel, gall bladder, part of my bile duct and part of my pancreas. It was a tricky operation as the tumour was now borderline and next to a main artery and he had to cut that to free it. This meant I lost a lot of blood. I was in the high dependency unit for 5 days and then a further 5 days on a normal ward. I came home weak and exhausted and still in a lot of pain but I had my twin sister with me and she stayed for 8 days until I could move around a bit quicker. I was determined to get back to normal and whilst I was sensible, I did push myself as I wanted to get back to my level of fitness I had before. I was driving after 4 weeks and in the hairdressers having my hair highlighted and beauty treatments!

After 5 weeks I walked into the consultant’s office looking fit and well and he was amazed at my recovery. He discussed the histology results whereby I was classed as an R2 which meant the tumour was borderline resectable and an L1 which meant 2 lymph nodes out of 16 removed were affected. The 2 that were affected were local to the tumour. There was no vascular invasion so that meant a V0 result. He suggested that I have a course of adjuvant chemotherapy as a belt and braces. Whilst he said he had removed all of the tumour and the 2 lymph nodes he asked me to consider it. I can’t say I was happy about it but I did go and see the oncologist to discuss the treatment. After a great deal of thought and prayer I decided against having the adjuvant chemo. My reasons were personal and based on my Christian faith as well as wanting to live my life to full while I feel fit and well. My decision is not for everyone but it’s so important to go with how you feel.

I was back at work after 6 weeks and at 14 weeks I was off to Vienna for the Christmas Markets! Since then I have booked 2 short break holidays in Krakow in February and Amsterdam in April plus a week in the Yorkshire Dales in May. My motto is to look after yourself and do whatever you personally want to do as regards your treatment. Live life as full as you can and be positive. I don’t know what the future holds but with 2 wonderful sons, a lovely family and so many wonderful friends I am blessed. Lastly, the photograph accompanying this article was taken 5 weeks after my operation.

January 2016

Updated: January 2018
I continued to feel well up to May 2016 when I started to have intermittent backache and spoke to my HPB nurse who ordered a re-staging CT scan. After a few days I received a telephone call saying the results were not good. An appointment was made for me to see the Consultant Oncologist. As soon as I walked into the medical room I could tell by the look on the oncologist’s face that the news was not good. Apparently, the scan showed local recurrence to the remaining pancreas plus both lungs showed small bilateral lung metastases.

I was shocked but not devastated as I always knew the recurrence percentage for pancreatic cancer was very high, even with chemotherapy. I asked what the prognosis was and how long I had to live. It was 10 months with chemo and 3 drugs; 8 months with 2 drugs and 6 months with no drugs. I chose 6 months and quality of life with the best supportive care plan that was possible. It was explained that even with chemo there was just a small percentage of success therefore I knew I had personally made the right decision.

Obviously breaking that news to my sons and family was very difficult and having to explain to them why I would not be having the treatment was not easy but they all agreed that I had chosen the best option and would live my life to the full without invasive chemo, hospital appointments and all the side effects that chemo gives. From that point onwards, I was determined to beat the prognosis and started to plan various short breaks and visits to friends. I went to the Yorkshire Dales for a week, to Norwich for short breaks and visited various places around Newark where I was living and still working full time. In the September I decided to move from Newark to live with my twin sister in West Sussex and where the rest of my family were based.

I carried on working but on reduced hours to spend as much time as possible seeing my family. In the November I went to Winchester for a short break to the famous Christmas Market and in the December, I went to the New Forest for a few days. On each break I walked and shopped and did all the things I did when I was well. Christmas came and was one that I did not think I would see and then we went into the New Year. I was feeling well, albeit getting a little tired and my tummy was getting upset more frequently despite taking the Creon tablets. However, I was coping and doing well so in January my twin sister and I went off to Bath for a few days shopping to celebrate our birthday.

The weeks started to slip by and I was doing OK and my next milestone was Easter. Well, I reached Easter and then started to plan more short breaks. Just after Easter I visited my GP as I wanted to be registered with a hospital in my area and to have a CT scan to see where I was with the tumour next to my pancreas and in both lungs. Whilst I was feeling tired and tummy problems were becoming more frequent, I still felt quite well, I was still driving and doing all the things I did before.

In April I went to the Cotswolds, and in June I spent another week in the Cotswolds, walking and relaxing. In August I went to Jersey for a few days and in September I went to Devon & Dorset for 4 days, so I was doing well. Since then, I started to become more tired and my weight was beginning to drop. With that my appetite decreased and the enjoyment of food that I used to have. CT scans have been showing stable disease, but these were confusing as I was now beginning to feel ill and tired. My oncologist said CT scans can be helpful if you are having treatment to assess how well the chemo is working but in my care its clinical diagnosis. However, I am continuing to battle on and I’m very fortunate to have such amazing hospital, hospice and GP care.

To date I have seen another Christmas and whilst my symptoms are increasing I remain cheerful and positive and all without the dreaded chemo! I count myself fortunate as to date it’s 2½ years since I was fist diagnosed and to me that is nothing short of a miracle with pancreatic cancer.

I do not know how long I have but for those who are reading this see it as an encouragement that whilst pancreatic cancer is one of the nasty cancers with a dreadful outlook you can have quality of life and fellow sufferers are surviving longer.