I just want to offer a little about my way of coping. I blogged to my close friends in a private blog I have kept since this all started. I wanted to share that with you as a contribution to 'ways of thinking' about this disease. Here it is........................
It was a fascinating day just a couple of days before Xmas and just about four years on from my original diagnosis. Although it started with a bit of a jolt. My journey is clear, which overall I accept or at least have become accustomed to, even if the time it will take is unpredictable. The uncertainty of the certainty gives plenty of scope for living and this has already given me four very good years. So when the oncologist reported a rise, a spike, in my PSA, whilst disappointed, I did think well this was not unexpected. I had gone a year since the last spike and in that time the additional drug I was given from last January did its job and kept my PSA stable for a year, longer than average for that drug as my onco mentioned today. So yes that journey is over but the boy done good! In five weeks time after a precautionary CT Scan to check if there has been any soft tissue development I will start a newer more heavy duty drug called enzalutimide. My journey continues.
I have used the image of 'ever decreasing circles' as my strapline. I think it acts as a metaphor for my life, maybe for anyone's life. We start life with horizons broad and options many. As we make life choices those options begin to narrow though plenty of scope remains if our life is reasonably successful. This analogy works too for those whose life options are less malleable as their circles sadly decrease more rapidly. The timing of change, the next circle is difficult to determine. We do not get a rehearsal in life so cannot go back and tweak the journey to our own prescription. Each circle is experienced anew with all its unpredictably, naivety, hope and expectation. Even as a young child the fact is that death will be the ultimate outcome even though we cannot imagine it unless misfortune intervenes. As adults we struggle to imagine it too and many have this sense of immortality because it can be intellectually challenging to imagine non-existence. We can do it logically but not through the senses. I find that the image of decreasing circles allows possibilities of moving on as well as restrictions. Sure the circles will reduce and each failure of treatment leads only one way. But on that way we can have lots of fulfilling times. I choose to enjoy my survival and not focus on the regret the decrease in my life circles might engender.
So after getting the news and letting people know and receiving some lovely and kind thoughts from my dear friends and family and especially on the forum I spent the day completing a project I have been working on for a few weeks now. I was inspired by one of the Man Booker shortlist books to sort out my disused and frankly depressing study to get it back in shape. The passage which influenced me was from Tom McCarthy's Satin Island.
I decided that I needed to recreate a space for me to get back to my writing. I had been too busy doing other things that I had ignored my novel. So after my onco meeting I went with my son and we collected my books from work, over 500 and I brought them home and we set about filling the bookcases, tidying, clearing and generally finishing a job we had started five or six weeks ago. The study in my house is now fully restored. I sat down and found myself almost feeling euphoric with this final effort and the result. The whole day had gone quickly and the ideas for the future use of the room had stayed uppermost in my mind. Each circle has possibilities if you seek them out even if they have boundaries!
Today could have been such a s*** day but I knew my circles would decrease and so that happened whilst another circle was opened. I can celebrate four years of survival and do not need to count the future time. It will take care of itself. The circles will continue to narrow and eventually end of life will be reached. I feel happy that i can understand this process without rancour or regret and be able for now to live with it and enjoy my life. I will enjoy Christmas and new year and look forward to trying to ensure that 2016 is not my last circle. After all it's just as feasible that the new drug will last a year or more and whatever is waiting in future circles will grant me more time. Nobody knows the pathway for certain as it is a once only journey but one I am happy to be on! Happy Christmas to all!