Saturday 24 January 2015

A Little Rant from Facebook - No, It's Not Just My Age!

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.

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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!

END OF!!

That clear enough folks?"




Friday 16 January 2015

Happy New Year and All That...

Mega apologies for taking time with this post. Well had a quiet December waiting for my right elbow to heal but due to the kindness of friends & family,  did have a little treatette last week after going up to London to see Ben Miller in a play reading by Bruce McKay about a 16th Century Priest called Bartolome De Las Casas. This chap had realized the very cruel treatment of the indigenous peoples of Mexico and the Caribean by the Spanish invaders was simply not on. He did his best to fight for the rights of the local natives, eventually setting up his own Dominican order to serve those affected. Cutting a very long story short, 

De Las Casas in effect was the first known human rights campaigner. He made mistakes along the way, but learned from them. My personal feeling is that he was very lucky not to be tried for heresy as one of the ideas he put forward went against the idea that such genocide and slavery of the indigenous people had no souls.

The event was a fund raiser for the charity Survival and also for the collections library of the Middle Temple Hall where rare books are preserved. of which one is by De Las Casas. The play itself, held in the Middle Temple Hall was funny but also moving and very thought provoking. Apparently there are many indigenous people who have not had any contact with the outside world as yet. Many who who were at the event, as I do, hope it never happens as the locals never seem to come off well but with the ever expanding need for land etc, it will happen sooner or later. Survival aims to help indigenous tribes to have and maintain their autonomy for both their land and heritage.

Survival's aim is a great one, but it makes me think of the autonomy and rights of those of us who are disabled, long term ill/injured and generally vulnerable in many ways, find our rights and autonomy have been gradually eroded for the sake of 'autonomy'. Now, I am very lucky in the fact all I need is a stick and care with what I do to function plus a small pension which covers my mortgage, but for many things like access, care, finance etc are hard to maintain with the increase in the cost of living. It now can take between 4 to 26 weeks for decisions about benefits including Employment Support Allowance (formally Incapacity Benefit) and Disability Living allowance, both soon to become Universal Credit and Personal Independence Payment. The problem, especially with he last one, having looked at the descriptors, which looks more at the effect the ailment has on day to day living, some do not take in to account conditions do fluctuate. 

Now, yes of course, there has to be a check to make sure applicants are genuine, but considering fraud rates about 1% (ok that's 1% too many), the 'checking system' has turned into a ruthless effort to ensure as few as possible who are entitled and need benefits and help just don't get it. For a disabled person to have to wait up to six months for DLA/PIP is nothing short of ridiculous and cruel. I'm still waiting for mine and got my local MP, Andrew George on the case but all he can do is inquire about it. The letter got back was that my application came in very late and was not received by that particular department (for renewals) until August as opposed to May. 

What actually happened was that it was sent in on time but somehow ended up in the 'wrong department' before being sent to the right one, despite frequent phone calls from my advocate (the letter incorrectly stated I had phoned as well), and that the people Andrew spoke to said they could not influence the time it will take for a decision to be made, even though it had already been three months since they receive the application. Oh yes they can! There are those whose MPs have inquired and/or did more and who deservedly managed to get their constituents their benefits asap! It has been 8 months now and I can see what will happen is, time will go on for so long I will be forced to reapply again which will mean another 26 weeks minimum to wait. I have pretty much given up now and realize that I won't get DLA and PIP no matter how much I need it .

So, why do we have to jump through so many hoops now? For me it is more a matter of finances because the cost of living has gone up so much it is getting more difficult to pay the bills, as well has having to pay for transport for treatment etc. For others it will be more as carers have to be paid for, taxis needed because not all areas have buses with wheelchair access and so forth. it is definitely a case now of  'Please Sir, I need some more' and like the unfortunate Oliver Twist, we are hauled off for daring to ask for what is ours anyway, and made to be examples of those who are 'stretching the economy and what have you. For the last 15 years, both Labour and Conservatives (and sadly the LibDems whom I used to support but not now) have started to erode social care due to 'costs'.

A society is often judged on how it treats it's most vulnerable citizens and the UK far from being the 'easy touch' the right wing press would have it to be in terms of social welfare, it has become the exact opposite I think. Social and health care continues to be eroded from under our feet and those who find themselves out of work, ill, disabled, in poor social circumstances are being subjected to ever increasing barriers. I even get paranoid enough to think there's a 'euthanasia by stealth' that those who are entitled to claim or who are being forced in a never ending appeals process, so they don't bother to reapply as the stress is too much or will die before the claim is processed, thereby conveniently reducing the claimant numbers by 'natural wastage'.

Then there are the suicides. Yes, folks, be assured that there are more suicides being reported because those who have been driven to despair with having to deal with Job Centre Plus or the Department of Work and Pensions, who are ill or dying but being found to have the capacity to work, or being sanctioned to for not attending meetings, when they have not been informed in the first place finally can take no more, as well as the time it takes for a claim to be processed. So to those who are moaning about us 'sponging scroungers' be assured again we're beginning to die off now so will save you money.

Yes, we do have a better life in the UK than in most countries but for her vulnerable citizens, that is changing. I am beginning to wish we had Bartolome De Las Casa to speak for us.