It is coming up to two years since this wretched illness I am having to live with was diagnosed. A nasty shock I can tell you. Because it was diagnosed by a non specialist I never got any info on the condition only referred to a specialist for the following week. That week end was dreadful for Pat and for me. I spent time on the internet trying to learn about it but the stuff available on line scared me stiff. Yes it was serious in fact it was as serious as you can get. Going through our minds was how long have I got and I suppose the position in that respect has not changed. Pat spent the weekend watching my every breath while I was sleeping thinking it was going to be my last.
Although the diagnosis was 100% certain there was still a lot of tests to establish how aggressive it was and how far it had spread. My prognosis numbers kept coming up on the wrong end of the scale so the outlook was not good. “We can’t cure it but we can control it” they assured me I would get a lot less aches and pains once the drugs started to work. I asked several times the real question we wanted answering “how long have I got” None of the clinicians involved with my care will answer the question. At the time I never understood why but I do now.
Cllr. Bill Archer in his mayoral year had used some of his charity fund raising cash to start a support group for this condition. He was a fellow suffer who had been cured. The wife and I attended the first meeting of the group which coincided with confirmation of my diagnosis.
I was feeling pretty sorry for myself and still in a lot of pain because the drugs had not kicked in. The group were asking for members to state what skills they had that could help to run the group. I can remember thinking I’m more than capable to do all of the main tasks in running a group like that but not sure to what extent my health will allow and there doesn’t seem much point if I’m not going to be around in a couple of months time.
I must have mentioned this to the group because during a sort of get to know one another session a guy came over and introduced himself. We talked for awhile and compared prognoses. His condition to start with was far worse than mine but the real eye opener was that he was 4years in and had been back at work for three years. We are now good friends and both regular members of the support group having helped each other and our wives through some difficult times during the last couple of years. One other person who must be mentioned when talking about our condition is the Macmillan nurse who is appointed as lead person in our care. She has become not just an advisor when things are a bit dodgy but a friend. She now refers to me and my mate has her star patients.
The life expectancy numbers obtained by dept of health are published by one of the charities: - two years, five years ten years in against each prognosis grade. Mine ain’t good so every day I now look upon as a bonus. I can remember as a kid the clock seemed to go faster when the school holidays arrived. Similarly when my kids were little those precious holidays the clock went even faster. When I retired someone wound it up because I never could understand how I found time to go to work. Now time seems like the Marriott Carts computer game my grandkids play when I’m riding an out of control car around a crazy track. I crash off (blood numbers all wrong) along come the specialists who put me back on. Trouble is the speed and controls haven’t changed.
I now live life on a six week cycle between blood tests and visits to the Oncologist. If things stay on track, fine, I’ll see you in six weeks if they’ve gone awry new treatment and who knows?
Just before my blood tests are due and my treatment week begins I become a little tense and short tempered. Sorry folks can’t help it the pressure gets to me.
Pat would like me to write up our experiences during this period because as she points out all the family are affected in some way. We’ve been asked by Macmillan and a couple of men’s health magazines for our story but they want it for free and for me it is a difficult thing to write because it’s so personal. It would also be very time consuming to do and it is time I don’t think I really have. So why am I writing it on my blog? I have no idea. When the editor in chief (Pat) gets it who knows it might not get published.
The upside of all this is that during the cycle I can live an active but not normal life. I need to take care in lifting and carrying and walking is difficult but almost everything else is OK. I might be ill but there’s nowt wrong with the grey matter.
Post approved by the misses.