Lynne, 55 when diagnosed with operable adenocarcinoma
During the first six months of 2009 I had been working hard (I was a management consultant specialising in organisational change) and travelling widely. On return from my second trip to Australia within a month I was unable to throw-off what I thought was bad jet lag and my fatigue became overwhelming during August.
I was sent to hospital for an ultrasound
In September I began to develop jaundice quite severely and was sent to hospital for an ultrasound as my GP thought I might have gallstones. After the scan gall bladder removal was discussed but I felt worse every day with chronic fatigue. Later in September I saw my GP who said I should be admitted to hospital that day and provided me with a letter that I was later to learn made reference to a possible malignancy.Two weeks of tests and an endoscopy showed that there was, as a doctor described it, "a lesion" (although I was given no real idea what that meant) and I was released from hospital and referred to a gastroenterologist. Following a further endoscopy in early October, pancreatic cancer was diagnosed and I was told it was operable but the risks were high. I had surgery two weeks later.
I would be out of action for three months
Needless to say I remember very little of the day of the diagnosis, however, I then read enough on the internet to feel frightened to death and never looked it up again. No one pointed me in the direction of Pancreatic Cancer UK or any other form of cancer support - the NHS did what it does so very well and reacted to the emergency and focussed upon the medicine. However, my surgeon talked to me about the mental battle that I would face and explained that even if all went well I would be out of action for three months as the surgery was very major.
My partner was told I would not survive - but here I am
In fact I spent nearly six months in hospital and went through hell and although I didn't have chemotherapy or radiotherapy the subsequent impact on my body was traumatic. The medical team were fantastic, especially the Critical Care staff whose unit I was admitted to five times, they saved my life. In summary, I suffered major organ failure, had several further operations, the acid from my bile duct had eaten a hole in my bowel, I had sepsis, a major artery burst and I nearly bled to death, I had liver abscesses, the list grew every week and there were several times when my partner was told I would not survive - but here I am.
I had wonderful support
My surgeon was so right to talk about the mental battle - I focussed on each day and what it held for me and I never asked "why me?" and I still haven't. I was unlucky - but lucky to get jaundice, lucky to be living only a few miles from where the operation could be done, lucky to have a wonderful surgeon. I had wonderful support from my partner which I know helped save my life, my loving family and a wide circle of friends and colleagues who sent wishes, prayed, had positive thoughts and helped lift me out of the pit of this dreadful illness. I lost four stone in weight - a drastic but welcome diet programme!
I now tell everyone about what Pancreatic Cancer UK can offer - I only wish I had discovered the organisation sooner but we were all so busy fighting for survival. My life has changed dramatically but at least I have one. Getting my Creon dosage right has been a challenge but advice I found on the Pancreatic Cancer UK website helped enormously and nearly two and a half years on I feel myself again, albeit missing a few organs!
First published March 2012
Update February 2014
At last my confidence and energy are back!
I am now heading for my fifth anniversary since diagnosis and at times it is hard to believe it all happened. The awful flashbacks have stopped and life has taken on a new rhythm. I have been able to find out more about people's experiences in critical care and to understand more fully that very many people, like me, experience hallucinations and need to try to unravel truth from fiction. Health-wise all is well and with moderation as the watch-word and my Creon dosage and timing now spot on I am enjoying my food and drink - every glass of champagne is special! I spoke about my experiences on the local radio in November (PCAM 2013 Every Life Matters) and this has resulted in a number of people getting in touch to talk through their own situation. I am involved in a lot of voluntary work, some for Pancreatic Cancer UK, but also in my local community. I know I am very fortunate and this year the plan is to undertake a long-haul flight - simple for some perhaps - but at last my confidence and energy are back!
Update October 2015
Five and a half years have passed since my diagnosis
Five and a half years have passed since my diagnosis and I can hardly believe it. I am very fortunate indeed to be able to say that I am healthy and enjoying life. There is no doubt that I have to be careful not to get too fatigued (and not just because I do too much!) as it is a legacy from my illness but it seems a small price to pay for survival. Like so many of us Creon continues to play a key part in my life!
I am delighted to have joined the Board of Trustees of Pancreatic Cancer UK to become more actively involved in working to further the aims of improving the patient experience, funding leading-edge research and reducing the high rate of mortality from this awful disease. I chaired our annual Summit in January 2015 when we were able to include a lot more patients and carers to hear from the medical profession and researchers about the amazing work they are doing and vice versa as there are so many inspiring stories amongst our Pancreatic Cancer community.
Update September 2017
Eight years since my original diagnosis
Very shortly it will be eight years since my original diagnosis, which is hard to believe but time passes so quickly. Fortunately my general health is very good and my love affair with Creon continues!
Fatigue is something that I still have to deal with and speaking to other survivors this is not an uncommon experience, it’s hard to describe and requires proper rest. I guess this is hardly surprising given what our bodies have been through. It doesn’t often stop me though!
I try not to take anything for granted and I know how very fortunate I am to be alive. It is very important to me to repay my good fortune and therefore a great honour to be the new Chair of the Board of Trustees of Pancreatic Cancer UK. I am delighted to be involved with such a wonderful and committed team doing so much for the pancreatic cancer community and very much look forward to contributing to the continued success of the organisation. My tenure ends in 2020, which will be a good year to properly retire as, fingers crossed, I pass the ten year survival mark!