26 Jan Ten Years of Living With Incurable Metastatic Prostate Cancer
prostate #cancer TEN Y#EARS ago today I was diagnosed with incurable prostate cancer
How to live well with metastatic prostate cancer.
The answer for me is that “Im not entirely sure!”.
Its a complex formulae governed to a large extent by each mans different expectations and capability.
Thursday January 26th 2006 was the date of my first PSA it was 125 which as I now know is not good for a man in his 50s.
The following week it was confirmed that I had metastatic prostate cancer (mPCa) with a gleason score of 9 with cancer spread to distant parts of my body.
At this stage my prostate cancer (PCa) was and still is incurable with an average survival time of 18-24 months.
If my living well with such a diagnosis inspires you and others then I will consider that as a success as it is a part of my red sock campaign mission.
Supporting all those affected by prostate cancer is something that I am passionate about.
I look on every day as a success story, of course not all days are the same, cancer doesn’t allow us that privilege.
The psychological effect is a never ending challenge and the side effects of treatment bring a whole new series of health issues that we men have to deal with.
There are 18 major side effects that often come to men on hormone therapy and that is before we start on radiotherapy and or chemotherapy.
So how is it that some men live longer than others following a diagnosis of incurable PCa?
I remember asking one the country’s leading prostate cancer specialists in Nottingham the question “Why am I still alive after all this time since my initial diagnosis?” his reply was “Your lucky”
Not very reassuring but the reality is that it was absolutely the right answer because there are so many factors that will decide how long each of us men will live with mPCa.
I am happy to live with being “lucky”
We are all uniquely different people and whether you’re a prince or a pauper your chances of developing prostate cancer are risk based, the red sock campaign and the UK Prostate Cancer Support Federation (Tackle) are making great strides towards presenting a risk based screening programme that is driven by patients/carers for our men.
It is our men and those that support them that can and will make a difference by speaking with one voice with a clear message.
I have travelled extensively around the World exploring how other countries manage their PCa patients and I can say that there are some fantastic clinicians in almost every country I have been in contact with, many of whom have been inspirational and a source of support for me.
My travels in those early days (2006/7) helped me realise how “lucky” I am to be on the doorstep of one of the UKs leading Cancer Centre at Velindre in Cardiff.
The staff and volunteers there are an incredible bunch they give loving care to each of those 5000 new cancer patients that are greeted in reception every year .
Professor Malcolm Mason and Dr John Staffurth have been with me every step of my mPCa journey giving me the time and reassurance whenever I ask for it.
Our clinicians can and will guide us through our treatment pathway
From my experience “Living Well With PCa” can have its greatest impact when men with PCa and/or their wives, other family members, partners or friends have access to others who are living with a PCa diagnosis.
Many men and those that support them have said thank you to me for giving them the time they need to talk about living with prostate cancer and sharing my experience.
My good friend Robert Catton (56) said to me before he died of PCa in 2013 that if he hadn’t had prostate cancer he would have missed out on meeting myself and so many others including the BigC choir, Adrian Hockin, Geoff Sainsbury sharing coffee, plum loaf and mince pies!!
He said the quality of his life with prostate cancer was enriched by the people he met on his journey.
Do we men with Pca worry?
Of course we do – every day – but the worry will not take our cancer away.
We want to find a way of “Living Well” for as long as possible with our PCa.
We want our lives to have the best quality we can achieve so that we can give support to others as well as receiving it.
Over the years I have had been inspired by thousands of people (over 4000 through the red sock campaign alone) and each one of you is in my lives diary which one day I hope to have published inspired by an original mentor of mine Robert Vaughan Young (Phoenix5). But not until the final chapter has been written which may be many years as I intend to continue being “lucky”.