On Facebook, one comes across pictures with pearls of wisdom on them. One made me think on the difficulty of putting across the problems faced by brain tumour sufferers, and those with other illnesses where it's not apparent the person is ill or even looks ill. I had this problem recently talking about the fact a side affect of treatment and for me, an acceptable risk in the hope of stopping Algy from growing.
My main problem is the fact my memory has been affected and the constant forgetting where I've put something seconds after leaving it and such not, has become a huge frustration.
It's not obvious as when I go out and get chatting, things are ok but often I find it difficult to remember names etc and know this isn't down to my age as the deterioration has occurred after my radiotherapy. It's not massively bad but the brain does age faster after radiotherapy and there is a small risk of dementia, since I have a family member who has Alzheimer's, the fear of getting this is always in the back of my mind.
So what you ask, everyone has that. Well, please read the following and the meme that prompted this I've uploaded at the end. This is not so much about my problem but an example of what so many try to get others to understand, and find that very few really want to.
Comments welcome as always either here or at twitter where I am @braintumourlady.
Facebook entry - 23rd January 2015.
"This reflects what most most people with a brain tumour would want to say about theirs, so I'm going to say it about mine. I have had a *very* hard time putting this across!! I *hate* it when people tell me 'it's only your age' etc. Well, here's some blunt info in caps.
IN REGARDS TO MY SHORT TERM MEMORY AND COGNITION.
NO IT'S NOT 'JUST MY AGE AND THAT EVERYONE HAS IT'!!
I HAVE A FRAKKIN' LUMP IN MY HEAD THAT SHOULD NOT BE THERE AND IS STILL DAMAGING THE BRAIN TISSUE AROUND IT!! I HAVE HAD RADIOTHERAPY TO STOP THE FRELLIN' THING FROM GETTING BIGGER AND A SIDE EFFECT OF THAT *IS* DAMAGE TO COGNITION AND MEMORY. I GET TIRED, I CAN'T ALWAYS THINK OR REASON, AND CAN BE EMOTIONALLY FRAGILE AT TIMES.
I CAN'T ALWAYS REMEMBER AND CANNOT ALWAYS TOLERATE CROWDED PLACES. I HAVE NO IDEA IF THIS WILL GET WORSE, BUT I DO KNOW IT ISN'T GOING TO GET BETTER. THE TREATMENT IS ONLY A DOORSTOP, NOT A CURE! AND YES, I KNOW I AM AGING BUT THIS IS SOMETHING ELSE ENTIRELY DIFFERENT AND *NOT* RELATED TO MY AGE!!
PLEASE DON'T PATRONIZE ME WITH YOUR OPINION THAT 'EVERYBODY GETS IT' OR TRY MISGUIDED ATTEMPTS AT OPTIMISM. INSTEAD *LISTEN* TO WHAT I AM TELLING YOU!! I DON'T WANT YOU TO FEEL SORRY FOR, OR PITY ME, OR CALL ME A HERO. ALL I WANT IS YOUR UNDERSTANDING PLUS VERY OCCASIONALLY YOUR PATIENCE AND HELP!
That clear enough folks?"