So I had finally escaped the ward on Wednesday night last week and was home. Oh the joy. Your own toilet, shower, bed, kettle and loved ones. I slept for nearly 10 hours that night, better than I had done since my teenage years. Looking back on it now I can't remember a thing that I did that day except making a call to the specialist nurse to see whether or not the histology results had been completed so that I could have a follow up meeting with the consultant on the Friday. Answerphone only but it was about 4.30 before I called. I think I watch TV a lot and read a book but the mind is still blank.
Friday morning the nurse called back to say that the results weren't in so they would put the consultant meeting back to the following Friday. Ok I say, no problem.
Now what? Twiddle thumbs. Oh I know, I'll email the guys and gals at work with an update of diagnosis, prognosis etc. My beloved T showed me a few websites that I might find interesting including this strange one called "what now". Full of insane people - it will never catch on :-).
Lots of visitors. Lots of phone calls. Lots of cards. Looks like it's birthday time in our hall !! End result - knackered.
Saturday. T's dad and Jill came and fixed shelves in the spare bedroom for us. Had lunch in the village centre - jacket potatoes and baked beans. Roger came over with Catherine in the afternoon and put up bathroom cabinet, towel rail, clock etc. It can make your heart break when people actually mean it when they say "If there's anything I can do to help just ask" and actually mean it.
Sunday. My mum and sister travelled from Rutland to see me. Great to just chat for a couple of hours about cancer, puzzles, gardens and green tea. A chilled day.
Monday and the normal working week started again - but not for me. Now this is a big thing. I am close to being a workaholic. Had my own business since 1982 and always feel that it can't survive without me. Hence working far too late every evening, working too often at the weekends and doing the occasional "allnighter" to meet a client deadline. But I had decided at some point in the last week that I was going to take it easy and not rush back to work. Oh how I know how lucky I am. No boss to have to appeal to. Just a decision to be taken.
Now I do have co-directors who I needed to talk to about my decision to "take it easy" but they were instantly there for me. "I will be doing two or three hours a day from home to start with so call me anytime if you need to but don't expect my normal output".
Well that was done and sorted. I was being good. Good diet, going for a walk everyday, not too much work, relax, take it easy, become bored, very bored, very very bored. Waiting. Waiting
Waiting.
Waiting.
Oh, I have an appointment with the renal specialist on Wednesday. Cool, that will break the day up :-) One kidney not working very well, second kidney not making up the difference. Oh well, never mind...
Twiddle thumbs - write blog. Highlight of day putting thoughts down in writing. Reading other people's blogs. Love the site. Love everyone on the site. Best medicine - am sure that using "what now" betters prognosis by... well lots!!
Slowly but surely I am working out a plan. Coming to terms with my cancer. It's probably terminal in that it will be what's written on my death certificate but we have no idea when that might be. My plan is simple. Wait til Friday for results then do what I am sure they will recommend. Chemo followed by op to remove the bladder and the prostate. Will probably go with the stoma and little bags strapped to my leg. Knitting circle has already agreed to knit a selection of tastefully decorated covers :-) Balance of plan - keep as healthy as I can, follow good diet, keep walking every day looking out for puddles to jump in and leave to kick.
Well today is Friday and I'm just an hour away from having "the big talk". List of questions have been written down. Research about treatments, prognosis etc completed. Understand that life expectancy could be anything from 25 - 85%. Much much better odds that better on the lottery :-) In denial, don't think so. Prepared for the worse? Think so. Most worried about? Having to do a lot more "waiting" before we can get started on the treatment.
In a world where we get upset because a computer takes 2 minutes to get started, where we are so used to everything being instant, waiting for results or treatments to begin is the hardest thing. But I'm in a better place now than I was just a couple of weeks ago. Then I had cancer and didn't know it - I worked too much and didn't spend enough time doing the things I enjoyed the most with the people I wanted to share it all with. Now I know I am mortal and you know what? I was before but now I have a great medical team who's only role in my life it to make me better in every way that they can. I treasure every minute with my loved ones and friends. I treasure all those little things in life.
But please, can someone explain Jeremy Kyle to me..........?
A xxx
