We have all lived through 3 monthly cycles now for so long that life is based around them. 2 weeks prior to a scan we both worry, then its the waiting game for the results then the meeting and the discovery of what is going on. We either come away elated and wonder what we can do for the next 10 weeks before we do it all again, or we come away with a heavy heart and try and kid ourselves we will be ok.
Our 3 monthly cycle started long before the meso was diagnosed, yet once it was things changed. The first year we seemed to cram so much into our lives, the 2nd year it was always a worry leading upto the X ray and then it was treatment and the promise that we would make the best of the rest of the time we had. The chemo didn't work and I found surgery. After surgery we promised we would do everything just in case, but we fell into the All the Time In the World attitude and of course back into the 3 monthly cycles of scans - CT's this time as the X-Rays never picked up the re-occurrence back in 06.
The strain of living like this isn't healthy, I didn't realise until yesterday just how hard it has been on my husband, the 3 month cycle seems to be harder on him than me. But really what is life? If I wasn't ill would we do anything different than we have done recently, him watching the cricket and walking the dogs, me going to work?
We haven't done much socially because I work and have no energy left at the end of the day but then everyone we know works so are they suddenly going to stop working during the day to fit me in ... of course not, so what is life?
The trial drug could help slow the process, after all this is how we find heart drugs, ms drugs, someone has to take them with a complaint and hey presto they find it helps with something, not always what it was developed for, so that is how I am going to look at this MEK. It may make me ill but surely after a few weeks I will know whether I need to stay on it - the worry is if it doesn't work then where do I find HOPE.
It's not having HOPE that sends us down that spiral of not surviving, before I sign that dotted line I am seeing another specialist today. Maybe he has come across a case like me before and can give me some idea of how long things may take to get really bad. Why would I want to know this, I have no idea but feel I have to travel this route. After all things hurt differently now, having upted the MST and not getting much relief things can't be that good. I know its only a few mm's here and there but those few mm's can cause a lot of grief, then its new stuff especially on the right lung.
I can't remember feeling this hopeless before but then surgery was always an option, I know we all have to die sometime, but as I keep saying I'd much rather it be in bed asleep when I'm around 80, not in agony, grasping for breath in my 50's. How do these other cancer patients do it when they know it has spread and only have months to live......