"Who is Algy.." I hear you cry. Well, a few of us in the bt community often will personalise our tumours by giving them names. So let me introduce you to Algernon again as I did in my last post, or Algy for short, as the name of my benign tumour that does not act so benign at times. It's easier to call him Algy (why give a male personality to something growing inside a female skull? Dunno, I suppose the psyche boys will have an explanation for that) and not to keep saying 'brain tumour' all the time. It's shorthand and not so emotive.
Some are against this tactic as they feel that a tumour is a tumour and
should stay that way and to personalise it is a bad thing. As far as I'm concerned it's my damned tumour and I'll do with it as I damn well please, including trying to have the bloody thing killed off if possible. But that will be down to bods at Derriford Plymouth NHS Trust who are trying to save cash left, right and centre, and as Algy isn't intent on killing me off *just* yet, they're not going to rush.
Learned another thing yesterday evening. I can no longer help out at my local passion (The Ritz, Penzance. A 1930's art deco cinema a few of us are trying to restore) with late night gigs. We have had a festival here in the last week called Golowan (Feast of St. John the Baptist) and had our main festival day yesterday called Mazey Day. Mazey Day is where we have parades and all sorts of shenanigans to cheer up the otherwise poor and oppressed people of Penzance. It's a great day actually with schools taking part in street parades with the most wonderful floats and props made entirely from bamboo and paper machè. This year's theme is of course The Olympics, and I suspect a little sympathy towards Greece who have found out the hard way of what it means to be part of a single European currency.
Anyway, I digress. At the Ritz we had an evening from a disco group called 'Love Riot' which went down very will with our local yoof, but sadly for me meant at about 2.50 am I collapsed while trying to sort out the crowd pressing at the counter where we have our cloak area. We were trying to get every one to step back so we could get the cloak area working more efficiently, but try saying that to sozzled young adults who are soley foccussed on getting their jackets back so they can pop out for a quick shag. It was getting hot and I was getting dizzy from yelling at everyone to back up. Algy had the perfect solution! My head started spinning, everything began to get very hot and weird, so down I went. I didn't lose consciousness as such, but as like the first time I collapsed, everything became very surreal and distant. Panic attack? No, just stress, tiredness and a brain tumour that is trying to get me to slow down a bit as I should definitely NOT be trying to deal with 600 pissed up yoof at 3am in the morning!
Sadly, I *am* disabled in the context of energy, clear thought, balance and have to recognise that I am putting myself at grave risk of falls etc by still allowing myself to be in situations such as the above. After all that's why I've had to stop work in the first place. But a part of me just doesn't want to let go yet. doesn't want to give in. A part of me still needs to be needed, to feel useful, to have a piece of the action, not to give in to 'Granny Disney' especially as a) I am not a grandmother, only the mad childless aunt to my brother's fabulous teen children and b) I'm only 51 for God's sake and if Algy isn't intent on killing me off just yet, what am I then to do? I love Facebook, Twitter (hi to anyone reading this!) but that cannot be the sole activity I do for the rest of my life, surely!
Look, I AM going up to London to see Ben Miller give a talk at the RI and I AM going to Canada in September to be with friends for a week, and I AM going to have my picture taken with the legendary William Shatner at an expensive Star Trek event in October, by then in some terms my life will be complete and can strike some stuff off my bucket list.
Yes, I DO have a bucket list, everyone should have one! All I have left to do is to be able to stand outside the Iolani Palace in Honolulu holding a sign over my head with 'Book 'em Danno' on it as a tribute to the original stars of Hawaii Five-O. To walk the tour of Hobbits in New Zealand, to get a Bachelor's degree in SOMETHING, to attend the temple in Salt Lake City and to give Richard Dawkins a smack upside the head and tell him to learn something called TOLERANCE. He's giving my atheist friends a bad name with his arrogant, bigoted, pompous idiocy! Well, I might not manage the last one, but the previous four I will find a way to do or die trying. But what I never want to do is GIVE UP.
I have seen it so many times, the most cruel agonizing death for those who have become so miserable, so depressed and for whom life no longer has meaning. They have no energy or will to live and who are just sitting waiting to die or withdraw in to a world of dependency and fear of the outside world because they can no longer function and have been so overwhelmed. I don't want to be like that. Ever. But I do have to realise, again, I can no longer do what I used or want to do. All because Algy and I suspect, other conditions which will make me slow up, to continue to depend on a walking stick for balance etc and to take care.
I want to be like the ping pong eyed guy who used to dispense his wisdom and experience to the young 'grasshopper' in the Kung Fu series years ago. I want to be the wise woman to will be there to lend a shoulder for others, to encourage those around me, to give support. I want to be a positive force for good. But how can I do that, if I still haven't learned to take care of myself first? It's the age old dilemma of the terminally work afflicted.
We'll see how things come along over this next little while. Oh, by the way I'm off to the dok's in the morning as my blood glucose levels are too high and need a fasting blood sugar check, which may also not be helping.
Update. Found this article via FB bt community. I should take more notice of this! http://tinyurl.com/6ve9u5b