Patient Perspective Series: Real Stories to Inform and Inspire

I was diagnosed in March 2022 on a second visit to A&E with ‘unexpected metastatic disease’. There had been no clear symptoms, except months of fatigue and tummy ‘not feeling right,’ until the week before the second visit when I had felt very unwell and had vomited a small amount of blood. On my first visit to A&E sometime earlier, with similar symptoms, I had been given omeprazole and told I could go home. I had initially not sought the advice of my GP.

My wife was with me on both of my visits to A&E, and this is how our pancreatic cancer journey began.

We had an initial meeting with the oncologist within days, during an inpatient stay, and a treatment meeting two weeks later. Surgery, for a partial bowel obstruction, was ruled out, as was curative surgery for the pancreatic tumour. The treatment plan was therefore based around palliative chemotherapy.

Our first meeting with the oncologist had been a little matter of fact – informative but unclear on what would happen next, as there were concerns about managing the bowel obstruction. The second meeting worked well. My wife was present at the meeting where treatment options were discussed. I make the point about my wife being present at key stages because of its importance from an emotional point of view and also the need for an additional advocate with eyes and ears to help navigate the system at a time of huge stress – she has been phenomenal.

We were allocated a dedicated Clinical Nurse Specialist (CNS) from our local hospice as a point of contact, help and support from the hospital Upper GI team and stoma nurses, and were offered support from a dietitian. I was prescribed Creon from this point on.

We were given details of Pancreatic Cancer UK and my wife ordered a ‘newly diagnosed’ pack from them. From the outset I felt that my wife, as principal carer and advocate, was ‘included.’ It is hugely important for families to be involved in the development and improvement of healthcare (including research) for those who are diagnosed with pancreatic cancer.

It is hugely important for families to be involved in the development and improvement of healthcare (including research) for those who are diagnosed with pancreatic cancer.

I had asked for a prognosis at the first oncology consultation and was told that 3-9 months was the likely scenario. This prediction has turned out to be significantly inaccurate – thankfully! I suspect that health professionals prefer to be conservative about such matters, especially with pancreatic cancer.

Medical care (and attention) has been excellent throughout. I understand that the NHS is trying to move towards a more person-centred, as distinct from patient-centred, approach to treatment and care; holistic if you will – personal and household circumstances, other health-related matters, psycho-social issues and emotions. This could be a huge step forward. By comparison with hospital care we have experienced hospice care, and this has taken emotional and psycho-social issues much more into account.

Covid and post-Covid periods did not impact greatly on access to care and treatment, although chemo was suspended for a cycle after I tested positive. Otherwise those periods meant limited access to social and recreational activities, which has been isolating to some extent.

Overall, and needless to say, this diagnosis changes your life, and those around you are impacted on an unbelievable scale. It presents you with challenges of huge proportions that you never imagined you would face. For me, living with a stoma, managing my diet (given the crucial role of the pancreas) and hydration, and chemo induced peripheral neuropathy have all been big challenges. And then there is the loss of self-confidence that comes with a diagnosis of a life-limiting condition.

As alluded to before, we have received levels of support above and beyond that which we originally expected, and (medical) help has been available when needed. For our part, we have always pushed hard and been very proactive in seeking solutions, striving hard to establish good working relationships with the medical team. Expressing gratitude for their hard work and perseverance has been a big part of this. A wide range of related support services have also been available. In the hospice during inpatient stays there has been help with symptom control and end of life care; complementary therapies; counselling, and advice out of hours. Our GP surgery has helped with nephrostomy dressing changes, repeat prescriptions and overall health and wellbeing; they have been incredibly supportive and we consider them very much part of the team.

Symptom control is always difficult with this kind of diagnosis but is a central part of managing and navigating your cancer journey. For me, peripheral neuropathy, bowel obstructions, and the stoma have been really challenging. My diet has been very restricted and most of my food has been home prepared. And, of course, pain management for which I have engaged the help of my hospice CNS and helpline services.

As regards to what you might call collateral impact and the wider issues associated with this diagnosis, this has been catastrophic – I had to run my business down immediately and could no longer work. As mine was a terminal diagnosis I (we) have lived life largely day to day, with no future plans, no holidays, no travelling far from home (or hospital). In short, the effect has been devastating.

With this kind of diagnosis you look for anything that will give hope or opportunity and we sought to engage with the opportunities of participating in clinical trials/research. We were proactive in requesting a referral to a research hospital and after nine months of appointments and screening tests, I passed the final hurdle, only to be hit with a catastrophic bowel obstruction – so near yet so far! That I had managed, against all odds, to be accepted for a trial was a great achievement.

On the whole, we have felt that sufficient information has been available to us to make decisions and prioritise my care, and give us some element of control, but I would have to say that we have had to be proactive in seeking this out at times. I have navigated the emotional and psychological aspects of living with pancreatic cancer and have developed mini support systems and strategies. I have had excellent support from professionals, friends and, of course, my wife. I am also very resilient and have worked hard at learning to adapt to changing circumstances. My oncologist has been unwavering in his support and guidance and maintains contact even now I have moved to hospice care. Building a ‘working’ relationship with your consultant can be absolutely key, and also your CNS and dietitian.

Hospices are simply amazing; they offer an environment of care that is very different from acute hospital services. Although hospital staff have been incredible for me, they are generally overwhelmed, things can get missed, and there can be a lack of empathy. You definitely need an advocate in order to get through the ‘system.’

Instead of being driven by a mindset of end of life, palliative care, et al, let us try and look more at life than death and be positive about survival prospects, quality of life, and what can be achieved by patients for the time that may be left to them.

Treatment options for this disease are still limited but there is as big a challenge around earlier diagnosis and more must be done to improve this. I also feel that doctors could be more willing to give a prognosis to their patients, and trust patients to be able to cope with this. More generally, there may also be a medical default towards too negative a view of this disease, which is partly understandable given the statistics around pancreatic cancer, but instead of being driven by a mindset of end of life, palliative care, et al, let us try and look more at life than death and be positive about survival prospects, quality of life, and what can be achieved by patients for the time that may be left to them. At the time of writing my 3-9 month prognosis has become three years, which begs a number of questions. My message to medical professionals would be, ‘don’t give up on your patients, don’t write off people with pancreatic cancer.’

My message to medical professionals would be, ‘don’t give up on your patients, don’t write off people with pancreatic cancer.’

And my message to patients, and their loved ones, is ‘be willing to explore possibilities, be adaptable. Despite the ‘doom and gloom,’ don’t give in to it, it doesn’t help. Don’t give up.’ My consultant told me I had an amazing attitude and that my determination would take me a long way – for as long as I may have left, it already has.

My message to patients, and their loved ones, is ‘be willing to explore possibilities, be adaptable. Despite the ‘doom and gloom,’ don’t give in to it, it doesn’t help. Don’t give up.’