When I was first diagnosed November 2014 I spent most of the next two months thinking what’s the point, not caring sometimes about stuff then tiny things became important. I wanted to sort out all my affairs, I used to lie in bed thinking about the letters I would write to my teenage kids, about what I wanted to wear in the coffin and what music I wanted at my funeral. On more than one occasion when driv8ng I thought “ what if I turn the wheel now and hit that tree or wall”, would anyone care?
of course I never did anything so bad although I do remember driving my car through the streets like I was on a rally, very irresponsible in hindsight but I was stuck in a selfish let’s beat the cancer death by taking control of my death. I did see a councillor a few times but it did not work for me.
then I started chemo and the next day I started running. It gave me purpose, something to challenge myself, something to look forward to, a time to clear my head, a reason to read about running , diet, trainers, races etc. I have never looked back since.
i guess what I am saying is that in my humble opinion it’s normal and expected to have “who cares” thoughts, if they go on too long then help may be needed. I managed to dig my way out myself. Ok, I run and I am frequently told on this site that others can’t but they miss the point. Others may like to play guitar, do an ou degree, plant something in their garden, paint, learn French, basket weaving, I don’t know but and this is the important thing, find something that floats your boat that has a now, tomorrow and medium purpose/ end game and then no matter what the treatment or prognosis there is always space to make a day better.
The other big change in my behaviour was to start raising money and volunteering for Pcuk. Initially because I used this site and wanted to give back, now it’s about finding a enter test so my teenage boys won’t have to worry about pc being a killer when they are 40 and trying to raise awareness by doing lots I& public speaking so other families may not go through wha5 mine and yours are now. The charity stuff gives me an enormous sense of purpose and doing good. The people at the charity are without exception lovely and if you feel unable to help do you have a relative, friend, colleague who may be able to help/raise funds instead as you can bask in their glory!
two weeks ago I walked 7 marathons in 7 days. 130 colleagues from RBS joined a day each, the awareness raised was immense and they raised about £80k, I am humbled by their effort and bask in their glory. All these things can help any family with pca create a sense of worth.
I bought an electric guitar, I can’t play, never had but it sits there waiting for the day I can’t run and that will be my next short term project, it’s sat there for 3 years now.
hope that helps, I am still running, raising money, awareness and loving life With T4n1m1a Gleason 9 nearly 4 years on, never give up.
kev