Scan results just before crimbo revealed that I now have a considerable amount of scar tissue on my brain. Scar tissue caused by the radiotherapy I had back in feb 2012. Apparently the scaring can continue to grow 3-5years post treatment!!! (very common) WTF Seriously! We were never told about this, no info on what happens after a year!
This is why I'm struggling more cognitively and with the long term side effects of the radiotherapy!!!
2015 Jane Shann mushy pea brain (stage 2) age 36
Takes me so fucking long to do everything :-( I feel so knackered and useless! Fuck it!!!
Hi, I'm a bit late to comment on this post but I just wanted to let you know I totally understand your anger and frustration. My wife had very similar problems after RT for her braintumour. Because the doctors know there really is no alternative to RT, they assume they don't need to tell you about the devastating effects it can have, even if it does work in fighting the tumour. They assume that you will be happy, regardless of the price you end up paying.
ReplyDeleteMy wife was incredibly affected by the RT and suffered serious cognitive issues months later. The doctors didn't take it seriously. We even investigated if perhaps some kind of medication might help improve her functioning (such as Ritalin which they give to people with ADHD). They dismissed it all as par for the course and said we would just need to get used to it but hey, at least the tumour stopped growing so why are you complaining....
How can you get on with life when life is completely different now? Perhaps we would still have chosen to undergo RT but at least people wold be prepared for what else can happen afterwards and months later. If you know what to expect, you can adjust your expectations and not feel so frustrated.
Anyway, I hope you can find ways to make life easier for you. I don't have any tips for you in this regard as things are so different for everyone. Just wanted to let you know you are not alone.
Hi,
DeleteThanks for telling me all about your simular situation.
I always believe it could be a lot lot worse and at least I'm still hear. Some days it's hard to see that because you just feel so tired and that everything is such hard work.
Hugs to you both ☺
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ReplyDeleteHa, i didn't mean for my comment to sound as if I was talking about my own troubles :-) Just wanted to sympathise with the crappy situation if doctors not preparing you properly. They seem to be the same all over the world: you are not dead so you must be happy with how your life is now.
ReplyDeleteRe-reading my comment, I see that is *might* look like I am telling YOU that you should be glad you are still here so stop complaining. My bad! I would of coirse not be so horrible! I meant to say that this seems to be what doctors tell people. I just phrased it badly. English is not my first language....
Just wanted to let you know you are not alone in your frustration. Shouting in the shower is a very fun and relaxing thing. People should do it more often ;-)
Not at all! I would say if I thought you were saying something to slag me off!! 😊
ReplyDelete*phew*
ReplyDeleteThanks. I was worried that I might have been really rude and accidentally told you to Man Up!!! :-)
Really!! :-D thats funny!
DeleteCoz I often think that I should woman up
;-)