Thursday, 19 September 2013

Algy's Demise - We're done with the CLINAC

Today has been a day of emotions, tears, laughter, impatience and grateful goodbyes. I have completed my course of radiotherapy at The Royal Marsden and just now have to wait out the side effects which so far is more fatigue, mood swings, post neuralgic pain and sensory changes down the right side of my face than anything else. There will be a follow up phone call with my Clinical Nurse Spcialist, Charlotte in about six weeks but I can contact her sooner if needs be. Letters will be sent to my GP in Penzance and there'll be a follow up MRI scan to be done at The Royal Marsden on 11th December, then yearly after that to check on Algy's progress. Plus I maybe monitored for potential consequences from the radiation itself such as a 2 percent chance of developing a maignacy over 10 years, or problems with my pituitory gland as it is in the path of the radiation.

So that's the medical/physical stuff.

Bang. Done. Dusted...

Yet I'm sat here with a *crazy* dose of the munchies and am feeling quite agitated. As per my last post, this is an emotional journey more than a physical one and I am going to be spending an awful lot of time trying to figure out where to go next with this and what it will mean in the long run.

Certainly, one cannot possibly go through an experience like this and *not* be changed in some way or another, but whether that change is permanent or we then slide back into old routines, attitudes and habits will depend on the individual. We're all different with how we react and deal with life changing moments as we grow and slide along life's often poorly greased and uneven path.

Algy to me has been a bit of a wake up call and a gentle reminder about the fragile state of our own mortality. Now ok, not once has Algy been immediately life threatening but there's always that risk he can become so and of course, anything growing in the confined space of the skull and spine is not a good thing, no matter how slow growing or innocuous it might appear. Tissue becomes compressed and damaged, often perminantely so and sometimes with fatal consequences.

Then of course there's all the other stuff, the social, medical, personal, financial, employment, welfare, self image, relationships, the whole shebang that still hasn't completed it's way through my addled head yet. The impacts of all the above, the potential consequences, the limitations, and maybe the opportunities, I don't know. Each time I blog, I realise that there is so much that has yet to be digested about all of this, so much to be understood in terms of change. An exploration in to an individual 'Undiscovered Country' if you will.

Many wax lyrical I guess about the meaning of life especially with events like this, the closest of which that makes any sense to me would be a la 'Monty Python', as well as my own personal and spiritual leanings - and it seems similar in the fact the Big Eight are involved; birth, growth, masturbation, sex, taxes, relationship/divorce, old age and death - yet for all the commonality of these life events, they can mean so many different things to so many people.

And the same applies to those going through any huge life change, no matter what. With me it's about finding another place to be in terms of usefulness and the future, to someone else it's about relationships and so on.

How's about cultural and social expectations? The cultural expectation of 'having courage' that when before it could have been a compliment to me, now becomes something more patronising, along with ' stay positive and not worrying about the small stuff'. You only have to read my last entry or two here to know my opinions on that! But then someone else will have a different take and I would love to know what others feel about those sentements both as givers and recievers.

It actually was suggested I write a book about my exeriences with Algy by someone who works with one of the charities I (try to) support and I think I would like to give that a go. But putting together a book is vastly different to scrawling in to a blog. My book would (I hope) be informative, humourous, emotional, factual, honest, knowledgeable but not just about me but also others on a similar journey. I would want to have little cartoons of my relationship with Algy, accounts from those who are affected by their condition or someone's expereinces with those they know who are affected by a brain tumour. I want not just a jolly praiseworthy account of a community being brought together to fund raise but also what a pain in the backside it can be to live with someone affected, and also touch on those very difficult questions that have to be faced sometimes when it doesn't go right.

So here's the thing. A call out to those affected in anyway by a brain tumour, whether as a patient, friend, carer, professional, family member, fund raiser, community worker, lover, you name it. I want to write that book and I want to write a book that reflects *our* own personal journeys. Ok, loads are out there in blogs, self help books, text books, professional work, papers and what have you, but I don't often see much from those with brain tumours themselves outside of what you might read in forums and groups. Some are very private and personal stories, a lot of course carry pain, for example the differences say between paediatric (childhood) brain tumours and adult ones, having as a parent/adult to make a choice about treatment that could result in long term damage but which also could give a child a fighting chance to live?

There's also room for humour as well as drama, and yes, I would like to have inserts with 'brain facts' and so build up a picture with my story as part of it, although in a way it'll be a central to a type of written 'Venn Diagram' to which I hope, an honest but empowering account of what being affected by a brain tumour is all about.

So how's about it chaps? Are we in.....?

Meet Jonathan Pope-Mask, my Thermoplastic Gimp Companion..!

Not necessarily my view but some might find meaning with the words below ;-)

The Galaxy Song - Monty Python's Meaning of Life 1983
By and copywright to Eric Idle and John Du Prez.
Whenever life gets you down, Mrs. Brown, 
And things seem hard or tough, 
And people are stupid, obnoxious or daft, 
And you feel that you've had quite eno-o-o-o-o-ough, 
Just remember that you're standing on a planet that's evolving 
And revolving at 900 miles an hour. 
It's orbiting at 19 miles a second, so it's reckoned, 
The sun that is the source of all our power. 
Now the sun, and you and me, and all the stars that we can see, 
Are moving at a million miles a day, 
In the outer spiral arm, at 40,000 miles an hour, 
Of a galaxy we call the Milky Way. 
Our galaxy itself contains a hundred billion stars; 
It's a hundred thousand light-years side to side; 
It bulges in the middle sixteen thousand light-years thick, 
But out by us it's just three thousand light-years wide. 
We're thirty thousand light-years from Galactic Central Point, 
We go 'round every two hundred million years; 
And our galaxy itself is one of millions of billions 
In this amazing and expanding universe. 
Our universe itself keeps on expanding and expanding, 
In all of the directions it can whiz; 
As fast as it can go, at the speed of light, you know, 
Twelve million miles a minute and that's the fastest speed there is. 
So remember, when you're feeling very small and insecure, 
How amazingly unlikely is your birth; 
And pray that there's intelligent life somewhere out in space, 
'Cause there's bugger all down here on Earth! 

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