I don't really like the X Factor, but over the years and on the occasions when I have caught a glimpse I have noted Simon Cowell's propensity to use the phrase "Now here's the thing".
June 2004 - at 52 years old diagnosed with aggressive prostate cancer, and told by my urologist that I had probably months to live. After going through the trauma, the distress, and the sharing of such awful news with my two sons, my wife went on our 'last' dream holiday. Waiting for us in the post was a letter from Weston Park Hospital in Sheffield, inviting me to undergo a new radiotherapy treatment.
After various drugs and then the high intensity radiotherapy, I have managed for 8 years on Prostap injections.
October 2011- noticed new masses, some pain, and rise in PSA; advised by oncologist that cancer had spread, and that prognosis is 2 years or there about. Given small dose of radiotherapy, and put on steroids. Steroids didn't work, and PSA level rose slowly for 2 years.
Summer 2014 - prescribed Abiraterone and Prednisalone. Neither working, and nobody will now pontificate on my life expectancy. Cancer has now spread to lungs and lymph nodes. I feel poorly most of the time, have severe pains in rib cage, tire very easily.
Decided to take early retirement in order to have some time for myself and family.
So to quote Mr Cowell, here's the thing: What do I do now?
I just don't know where I am or what I should be doing.
I haven't really made use of the resources provided by Macmillan, or PCUK for that matter, and in fact I have no idea what I should be asking for in any case. We have wills, and we have discussed what I would like to happen to me in the event of my demise.
Though I joined the PCUK forums a few years ago, I haven't used it much; especially since my joke was removed by the moderators.
Having just manned a Roadshow stand, I feel like I should get more involved, and have been reading some threads and associated replies today.
I'd like to do some more if health permits, but I'm in an absolute quandary, and really don't know how I should behave, react or even feel.
Though my sons are obviously concerned, and care very much, it is almost as if they are questioning the validity of my claim now; which could be viewed as a very positive thing. Having been told 6 months in 2004, then revised to 'likely to die from something else' in 2005; then given 18 months to 2 years in 2011. Now finding no treatment is controlling the condition and PSA level has at last exceeded my IQ.
Each oncology appointment seems to bring conflicting news; although the trend has been sadly downwards of late.
My wife knows, because she attends my oncology appointments. But I almost feel like a fraud, because I'm just carrying on. But I haven't a clue how to go forward. Silly? Yes. Selfish? Undoubtedly.
Some of you are going through all kinds of hell, and I'm very sorry if I cause distress or offence; but having read some other stories and ongoing accounts I feel as if something is missing.
I feel I should be asking for support, but I don't know what I need or want.............well, er maybe healing?
Sometimes feel sorry for myself, and go on a downer worrying about my wife being lonely and vulnerable etc., sometimes feel upbeat, and grateful for the 4 wonderful grand children I never thought I would see. But for the most part tend to just carry on with no particular mood.
A man said to me some months ago "You don't look like a dying man. You are not a dying man; you are a living man!!!"
So...................I've just been living..................that's all.......just living, taking the tablets, shopping, paperwork, cooking, cleaning, playing the piano, walking the dog.
Despite all the above diatribe, I still haven't put into suitable words what it is that I feel, but have to say I'm feeling like I'm walking alone (except for the dog of course).My humour is really a shell to cover my anxieties and insecurities (as if you couldn't see that).
Any suggestions gratefully received.