Hello lovely people on this forum.
So, where do I start?
In April this year, my beautiful fiancé and I married in Gibraltar followed by a two day mini break in Seville which happened to coincide with the April Fair, orange blossom fragrance in the air and thousands of horses, so Jo had an amazing time being a horse loving person.
It has been ten months since I have been living in France. My house in the U.K. still hasn’t sold, my ex wife, once cordial, communicative, so loving and supportive now completely despises me (which is not surprising after what I did last July in ending our marriage for this magical last part of my journey.)
Life in rural France is tough which is kind of good in a way as previously, I was looked after, cosseted, encouraged even, to just give up and go with the flow. My peace of mind since my wobble around Christmas when I was doubting my sanity in giving up what I did has been incredible. The food is much healthier here, I’m lucky if three cars pass our house each day so rural is our home and there is zero pollution in the air. To be so in love and so loved is a treasure I never thought I would experience nor deserve again.
My beautiful new wife (girlfriend of old) is so loving and supportive but she encourages me to do much more for myself than my ex wife ever did. Thus I do not get too lazy or maudlin although I do have episodes of self pity. I actually do DIY, I shovel sand, I take tons of logs into the hanger and I tile bathrooms. I do not lay on my back eight hours a day watching mindless daytime TV!
On the health front, my last bone and CT scans were conducted in May 2017. It has been my choice not to have any carried out since, nor to know my PSA results every two months. However, last week, I did go back to Guys to have my regular Prostap injection and my CNS did tell me that remarkably, my PSA is broadly the same as it was this time last year and that my Testosterone levels are the lowest they’ve ever been!
That said, since Christmas, I have been having the most remarkably painful lower back. Now I have a thirty year history of slipped discs, degenerative disc disease and a dodgy L5 S1. Many times, pre diagnosis, I’ve been prostrate (not prostate) on the floor in agony as my spinal nerves and muscles have gone into spasm.
Sadly, however, the concoction of painkillers and NSAIDs does not seem to be touching the pain when once they used to - so I am panicking. I also panic more when I realise that, without scans, I cannot know where I am so do not know if the lymph node metastasis I had last May has progressed to the bones. My hope is that it hasn’t, my fear and catastrophism declares that it has.
Then I get confused when I think, hang on, if my PSA is the same, surely if it had gone to the bones, would this not rise? Nor would there not be more red flags on my blood test results, which there aren’t, so I’m more hopeful than dreading having scans in the next couple of months which I think is the sensible option.
Whatever the outcome, I’ve declared that I will not have chemotherapy. In everyone I’ve known who has had it, there has been no significant downturn in the halt of the cancer. All it has done is cause severe side effects, reduce QOL even more and has been a source of regret that has not increased longevity. The studies back this up although there will always be one or two positive stories out there.
This August marks the 8th anniversary since my RALP where my original Gleason was 3+5 (Tertiary 4) with evidence of infiltration into one ejaculatory duct. Since then, I’ve had two periods of undetectable PSAs lasting 18 and 14 months respectively, salvage radiotherapy, three years of hormones one of which one was Enzalutamide and now, for the past year, 12 week doses given 8 weekly of Prostap.
One day, the injection will fail and my CNS has advised when it does, it usually means an average time to death of 16 to 18 months. Tragic when I have found my first love so late again in life and am enjoying my life to the full and enjoying being so in love.
During our wobbly emotional moments, it all gets a bit too much when we reflect upon the bitter sweet irony of this all - and what may come - but we have now, that’s all we ever own - and I am so grateful that we found each other again, though would have liked more time with her. We got on so well when we were 19 and 16. Now, at 56 and 52, we get on like soul mates.
So, in my estimation, I reckon I’ll be dead around May 2020. Don’t ask me how I come to that. The optimist in me hopes for five more good years, though with my back pain, the pessimist in me always wins. It always has - but I’m still here nine years after diagnosis and eight years after surgery, so I’m really not sure what the future holds. Answers/bets on a postcard.....
Edited by member 29 May 2018 at 14:37
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