Just been told I have cancer

Hello Neil,

I think you have already learned lesson one, only look to the internet to ask very specific questions. The statistics are not great but remember there is a standard deviation on all these stats. I received the same shocking diagnosis in December 2022 after a a summer with 6 weeks of water skiing, and an Autumn of hiking in Wales. I had no underlying conditions and at 71 was pretty healthy. I retired in late 2018 and have been travelling extensively up to the point of diagnosis. All of which amplified the shock.

So far, I have 20+ cycles of Folforinox and am now on GemCap. For me, lesson 2 is prepare for the side effects with some strategies. I have been hospitalised twice via A&E and on at least one occasion, I am convinced that this was unnecessary and I have managed to act preventatively to avoid the conditions that caused me to be admitted. Everyone's side effects will vary and for me it has been neuropathy (CIPN: chemotherapy induced peripheral neuropathy) that has been hardest to live with. The platinum based chemo's are said to be the worst offenders but my experience has been they all do it. I have tried (sceptically) acupuncture but I haven't found any amelioration yet. I would say that the loss of sensation leads to less activity and this in turn causes muscle wastage. The Physio group at RMH gave some good advice and while regaining muscle doesn't solve the issue, it does help.

On my first A&E admission (about 2-3 months of chemo) my local hospital asked why Marsden had not put me on Creon and prescribed me with some. This was transformative. It is a pair of enzymes that aid digestion and in my case it was a game changer. I can't recommend it more. My last admission to local A&E was in late January this year, and my lessons learned there was that there lack of experience of dealing with pancreatic cancer patients, combined with limited numbers of oncologists in their ranks, I believe leads to poorer diagnoses and avoidable admissions. (Don't take this as a criticism, I am a great supporter of the NHS and highly critical of this governments role in actively degrading the service!).

My key to mental strength through this is to surround yourself with friends and family. (I have written elsewhere) of the dilemma of religious views of our social circle and their interactions with atheists like me, so there are friction points that may emerge.) I have been beyond fortunate with family (from USA and Canada) moving in for weeks on end to support. This has significantly eased the inevitable load on my wife and I would say never turn away help, we all need it in ways that you may not even recognise just now. I am fortunate that both my sons have pitched in along with their partners.

The trajectory of my disease has been a rapid physical deterioration in physical condition in the first 3 months. Weight, appetite and taste loss were central but general digestive issues dominate. My initial sign of onset, that lead to diagnosis, was inability to swallow. This first period of chemo solved most of these problems but left me 10-13kg down. Recovering muscle mass (through exercise) helps, the nutrition group at RMH said simply go with as many calories as possible each day and I was able to regain weight but t was slow. The CIPN is currently limiting my exercise ability which is my current problem.

There are certainly things that I'm omitting (brain-fog is for real) so do come back with any questions that you may have. For the Folforinox cycles, I preferred the PICC (peripherally inserted central catheter) as the infusion is lengthy (for Folforinox), along with ease of blood tests etc. are key benefits The downside is you will need help showering and dressing changes (fortnightly) will rely on a practical partner (in my case my wife). I did try using district nurses but quality was so variable. I hope some of this helps with background that isn relevant