Gill, 63, was diagnosed with operable pancreatic cancer in 2015
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 gall stones but I was not so sure. My son had had gall stones and I remember him being in chronic pain plus I had worked in Histopathology in a large teaching hospital in Surrey 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.
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 (Newark 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 gall stones 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 Newark 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 Queen’s Medical Centre in Nottingham 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 Queens, 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.
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 Newark Hospital immediately for a blood test to determine if I had pancreatitis following the fitting of the stent. I went to Newark 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 Queens Medical 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 Queens Medical 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 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 from Queen’s at his clinic in Kingsmill Hospital, Mansfield. 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 at Kingsmill 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.