Amy's Brain

The egg in my head

Update 14: To floss or not to floss?


Life Expectancy and Flossing

I avoided getting into this previously, it’s a tough subject matter to tackle. In the landscape of incurable brain cancers my life expectancy is really pretty good. Yes, it’s that “lucky” thing again. I’ve been trying to think of a way of explaining it. I can’t stand the way someone might say “Doctor said she’s got 2 years to live”. This sentence only makes sense if the doctor has a gun and/or has no understanding of statistics (or most likely, doctor has been miss-quoted). I think my doctor probably doesn’t have a gun and does have some understanding of statistics. I tried to persuade him to draw me a life expectancy curve but he wouldn’t. I think he knows roughly what it looks like but definitely doesn’t want to put pen to paper. I have to read a bit into his words and also, of course, every life expectancy statistic for grade 2 astrocytoma , IDH1 mutated that google can find for me. I’ve quit googling this now but it was a hard habit to stop. I could draw you a curve as I see it, but I won’t either. I’ve decided the best way to communicate where things are is like this.

I’m 36 now. The chances of me dying before I’m 40 are reasonably low. Much, much higher than most other 36 year olds but I’ll be quite surprised and extremely disappointed if I don’t make 40.

The chances of my celebrating my 50th are pretty low. I hope that this will change as a magic bullet cure or even a reasonable life-extending treatment is developed and made available. As things stand though, presuming no change on the science front reaching 50 would be an amazing result. Yup, still sad about that. Then the crying comes again. How old will Ivy be when I’m 50? How old will mum be?

 

TO FLOSS OR NOT TO FLOSS

The biggest question of them all? At which point, given a shitty life-expectancy should you give up flossing? I think many people would agree that flossing is a bit dull and not a lot of fun. What sort of timescales are involved do you think? I think if I was going to die next month I’d stop flossing. Next year? Maybe. 5 years? Definitely keep flossing.

What about other things though? At which point to I give up kale mountains and just eat pudding? This is like a litmus test for life expectancy optimism. For now, I’m still flossing and eating kale. What about some of the bigger life decisions? Business commitments? Building ideas? Big projects? The next baby I always thought I’d have? How optimistic am I? What sort of timescales do we base these big and small life decisions on? I’m not feeling so lucky now. How nice it would be to be in the privileged situation where this doesn’t even come up as a question. I don’t think many people discuss life-expectancy whilst planning these things. Maybe I need a support network of people in their 80s or 90s go over this with, I wonder if they discuss life-expectancy when they’re planning things. I don’t think I am able to describe the pain in this well enough to expect empathy, it’s the aspect of grief that draws out my most angry side. It’s not fair. I want to plan things. I joined a Brain Tumour support group on Facebook. The people on there keep dying. I left.


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