The Brain Tumour has a Soft Centre: We Are Chained - U.S.A. to G.B.

The Brain Tumour has a Soft Centre: We Are Chained - U.S.A. to G.B.: My previous posts have been based upon my experience of, the diagnosis, de-bulking and after treatment, of an oligoglioma grade 2 brain tumo...

We Are Chained - U.S.A. to G.B.

My previous posts have been based upon my experience of, the diagnosis, de-bulking and after treatment, of an oligoglioma grade 2 brain tumour between that occured in 1996. The content of those previous posts, whilst true to events, were described in a almost fictionalized way; easy to read and easy to write. However, they are not quite 'real' and do not do justice, to the strength, courage and positivity of the many of people that I have been in touch with over the few years. In America they call themselves 'Brain Tumour Buddies.' As me, I'll stick to 'friends.'
I will now take a break, an interlude; a time to eat the pop-corn and suck on a popsicle, before handing you over to 'real' dialogue between the brain tumour buddies. Beware, there is nothing fictional here; it is pure fact.


Please note the Words Highlighted in Yellow are there for a purpose.


Yesterday 3.00pm

Survivor #1 :

‘Don’t know what to say to that. Yes, I try to remain positive but the thing casts a big black shadow over everything. Hate it!I wish I was there to help you. Honestly!’

Survivor #2 :

‘I wish you were here too. I am now experiencing one of the side effects of radiation - hypothyroidism…will be on medication for the rest of my life is what was told to me. But if that’s the worst of it, not a problem. You and I have experienced quite a bit with this "thing". I don't think of a re-growth however according to the ABTA conference I attended, in most cases 95% re-growth for this type of tumor- which quite honestly sucks. I have changed my thinking to always remain positive - without a hint of doubt. I just can't believe how much my life has changed or the adjustments I have made. But still glad to be here and see my kids accomplish and achieve their goals. Have a wonderful day and glad you’re doing better!’

Today 3 hours ago

Survivor #1 :

‘Yes it sucks...I want to do things to; I want to see my kids grow up and up and on and on. What personally frustrates me is that any long term plans for my writing will suddenly be scuppered and ended. So, as it always seems to be a race against time...really, hate the thought of that. What also saddens me more is that I will probably never have another relationship with anyone. The last one I had has just recently finished. She was a good and understanding person the best; but I was moody and vile at times, she said that it was an 'emotional roller coaster,' which is a very good description of what this thing does.
Anyway, have to enjoy the good days. We are having an Indian Summer here, 23 degrees, very warm. Its great and I love it.
Do you have an oligodendroglioma too, I forget?’

Survivor #2 :

‘Ditto you on a lot you mentioned. Yes I have a combined Oligo and Astro - they all are considered "mixed gliomas" from what I heard at the ABTA. You have to keep on writing that is truly your medicine and talent. The meds can cause you to mood swing - I know when my dad was dying I was quite angry at several family members and showed it - yes the meds! My long term plans were going to be taking an ex-pat position oversees with my company - can't do that now. I can no longer scuba dive or ski - concerts are now few in between - due to strobe lights - puts me in seizure mode. But I am working full time 3 days a week from home and two in the office and have been seizure free for 1.5 yr but I am heavily medicated - so the occasional glass of wine can get me high - quickly - at least that I enjoy. At one time I felt like I was in a race against time - getting my kids settled, re-arranging my life insurance - but I am learned to slow down and smell the roses so to speak. It takes time and patience. Be patient with yourself and keep writing - I look forward to reading more from you. Be positive, I am sending you the vibes from across the pond!’

The Magic Circle

By April 1997 I was back at work. No getting away from it; I needed the money and the debts were beginning to grow to sky scraper proportions. I was at this point, shown the door; the surgeon and the oncologist said 'you can leave now' and so I did. Totally alone, no aftercare, only the support of a family, that had at its heart, two kids 10 and 4. What they saw and grew up with cash, I'll never know; they don't talk about it even at the ages of 26 and 20. Today, things are different; there are specialist cancer nurses, dedicated psychologists, bodies that deal extensively with welfare benefits. Much of the back-bone of information is provided my MacMillan cancer services. This is a an organisation that makes a difference and deserves donations and funding. We all should give what we can afford.

Anyway, I digress. Returning to work after a brain tumour was traumatic especially as you have no idea as to whether you could perform those tasks that you once did with ease . I had a lingering feeling that people were always watching me and writing up their own risk assessment reports on my performance. These feeling were probably self perpetuating and unfbut the paranoia and the stress was very real and active. It fed on fear and that fear became a monstrous reality in late April.

I was in the basement yet again but this time I was looking for computer parts. It came swiftly with no warning I was on the floor, in the dust and the dirt, wondering if this was a bad gig to with no encore. 30 minutes later, and I was stuck in a traffic jam on the M5, in an ambulance, strapped down and with the side rails up to stop me from writhing around and yet, I felt good, with a very clear head, wondering what all the fuss was about.

Back at work, after a week's break, it happened again in the more comfort of the office. A big Grand Mal seizure this time. I knew it was coming and it was came fast like a black tsunami roaring in; the photocopier shuttled back and forth faster and faster, the chatter in the office was so loud that I  thought I had my head trapped in a speaker full of white noise and the worst thing, I could here my dead Dad, constantly ridiculing about all the mistakes I had made in my life. It was a real bad trip. Ugly and vicious. It was a bastard.

I returned again with a real negative attitude. I waited and it came again but things were very different this time; I had a magic circle around me. I had badly underestimated people. I thought I could do everything for myself, stubborn, recalcitrant, I watched as the protective wagons surrounded me.

The Glaswegian arrived first and cradled my head and stopped it from banging on the floor. He swore, smashed the glass ceiling and sent the feeble red faced middle management out the door.

The Biker, came at it with calmness and with his first aid kit. He could cope, there was no hysteria, just reassurance and confidence.

The Young Man, now living abroad, was freaked out at first, but held up his end and constantly asked what he had to do and he did it without hesitation, when he could of just turned away.

Then the there West Bromwich Albion fans and one Liverpool fan, who stood in a protective circle as the management fired the Health and Safety bullets. But the President was still alive and getting better.

Alas, the suits called for the ambulance again and off I went again.

In the twelve years that followed my epilepsy abated and my brain healed but the stress never went away.
Psychologically, I was a mess, and that's when 'The Girl' stepped in. She listened to the moaning, took a crock of shit and anger but still tried to raise my spirits and cajole me through terrible depressions. She could of gave up on me but she did not. Thank god, I would have been finished a long time ago.

So, I was still going in 2008 and friendship, given freely, spontaneously and without question was still around. I had known all along, but never wanted to admit it, that I owe these people big and much more than they will ever know. Thank you.

Happy birthday to me today.

Please support MacMillan, Brain Tumour UK and BT Buddies (USA)

And thanks for the read.

The Hospital Walls (aka the Brain Tumour has a Soft Centre): Radiotherapy #2

The Hospital Walls (aka the Brain Tumour has a Soft Centre): Radiotherapy #2: "By the middle of week three, the boredom has really peaked, not just with the treatment, but with the lifestyle. I'll describe it: for you. ..."

Radiotherapy #2

By the middle of week three, the boredom has really peaked, not just with the treatment, but with the lifestyle. I'll describe it: for you. Get up at 8.00. Try to eat breakfast but feel the urge to vomit as soon as the dry toast touches the tongue. Sit in the car, watch the ex-wife valiantly try to remove 2 inches of ice from the windscreen. Ten minutes later the car starts and the little compass that sits somewhere in the undamaged part of my  brain, picks up the map coordinates, and repeats to itself,' Radiotherapy Queen Elizabeth Hospital.'  The Citroen starts up and off we go. We travel the same route every single day, to the point where I can close my eyes for ten minutes and open them again, and know exactly where I will be. For example, we are sitting at the traffic lights opposite the Skoda garage. Close my eyes and I think of The Bear Hotel which is about 10 minutes away. I make allowance for traffic congestion. Open the peepers and there we are, next to the Hotel. And so it goes on and on, my own 'Groundhog Day.'

Back on the Radiotherapy table, my carefully made headshell has come apart and is now being held together by bulldog paper-clips, the idea of  having a new mould made and drawing out the process further than six weeks is unimaginable. The Radio takes about three minutes to apply. We leave. We return. We leave. We return. It's tedious but it must be doing some good.

However, something terrible is about to occur. The ex-wife goes shopping. I cannot bear to watch another episode of Frasier or a another repeat of Ironside. So, I decide to clean the insides of the windows and take the curtains down.  A kid, of say fourteen or fifteen, gawps at me and laughs. I check to see if my flies are down. I'm okay I am covered. A pensioner I know walks by, I knock the window and wave, and she just crumbles when she looks at me. I think she is having a stroke and I begin to scuttle across the room to see if she is okay, I glimpse sideways at the mirror and take in the shock that the man in the mirror has lost most of his hair.

I phone the Radio people and a woman answers in a sleepy and bored voice, 'it's normal, don't worry.See you tomorrow.'

We leave. We return. We leave. We return. It's tedious but it must be doing some good.

The Hospital Walls (aka the Brain Tumour has a Soft Centre): Radiotherapy #1

The Hospital Walls (aka the Brain Tumour has a Soft Centre): Radiotherapy #1: "Early January 1997 It was the heart of Winter; Arctic winds had pushed in from Siberia, thick rime ice had white-washed the trees, icicles..."

Radiotherapy #1

Early January 1997

It was the heart of Winter; Arctic winds had pushed in from Siberia, thick rime ice had white-washed the trees, icicles hung perilously from the gutters of houses, cats and dogs would not go out, cars failed to start, the buses never came and the children never got to school. Me; well I was okay. I sat in the in my German army and navy parka and wondered what all the fuss was about. This was freedom. This was about being alive...all this white stuff.
We set off again in the same direction, taking in the same sights, on the same old road, to the same place for six weeks of radiotherapy. I must admit that I hadn't got a clue what radiotherapy entailed, so I just followed the way; through the hospital doors and to the end of the purple line that dropped into the lead lined hole.
I signed in as usual, sat down and did what I did best; 'waited.' Ten minutes, read 'Cosmopolitan', twenty minutes, read 'Women's Own', 30 minutes and I began to consider playing with the kids toys in the corner but a toddler with a skinhead had commandeered the dumper truck and the crane and my, oh my, despite the miserable setting, he seemed to be really enjoying himself.
I got the call, got a smile from a pretty girl in a white tunic who showed me into the 'mould room.' 'I need to make you a 'headshell' and it will take about thirty minutes.' More lost time. 'You need to keep completely still through the procedure.' Time was floating passed. She began by putting a 'swimming' cap over my head and massaged a cream into my skin which was quite pleasurable. Then things began to get very surreal as she lay strips of plaster of paris bandage all over my face but leaving holes for my nose and mouth that allowed me to breath. Now I have never indulged in sensory deprivation and I wasn't getting any thrills from this especially when my face started to burn. Shit, embalmed and burned alive; fuck, bring me a wooden box to lie down in. Then, from nowhere came the magical words 'all done now'
I walked away after my face peel and waved at the toddler without much hair who then smiled at me and laughed. Yeah, he'd been there too.
I made my way back into the world again and stood beneath a sky of unbroken blue. A plane soured high overhead and disappeared and I thought, man, that's beautiful and my senses returned again, all snow white and azure blue.

The Queen is Dead

Christmas 1996

I made my way along the dimly lit corridors. I was a changed man; a man with no 'L' plates. I knew what a brain tumour was, what it could do to you and how it needed to be treated. I listened to the de-briefing for about a minute and then closed down. For Christ' sake, it was Christmas and I needed a break. I didn't want to talk about treatments, drugs and appointments. I wanted out, and for once, I was going to get my own way.

So off I went, on brittle legs, desperately trying to pick up speed but my body was having none of that. I was tethered and bound by chains that led all the way back to the operating theatre and my sick bed. But I was determined, stubborn and single-minded. I was not going to take any shit from anyone; particularly, my self.

I set off through the swell of evening visitors and it was frightening; like walking across a dodgem rink in bare feet. My toes were crushed and my shins shattered by numerous collisions. But in my own implacable way, I just soldiered on, until I could hear the tired sound of automatic doors. I arrived at my target, and stood beneath the word 'exit', I paid homage to it; and then I left.

We stood beyond the Hospital Walls, the ex-wife and I. I ate the cold air and all its strange gases. My face felt clean but my eyes began to water. Were they tears of joy or a mere reaction to the northerly wind? Who knows? I was just glad to be out of that miserable hole and away from all the people who have saved my life!

Then we marched back towards the car, which she had parked miles away in the furthest corner of the car park. I just looked the car  in bewilderment. It looked like an ice cube, covered in fractals of frost and I started thinking that I am going to die of exposure and what a waste the last two weeks have been. After a long fifteen minutes we finally left for home.

Home equated to kids, warmth and freedom. God, I could not believe how great familiarity was. How brilliant it was to see all the normal crap such as broken kids toys, piles of magazines, sweet wrappers, festering dog chews; all those things that I will never ever complain about again.

I decided to take a bath. I opened the bathroom door and turned on the light. It was hideous, it was savage and no-one deserved to look like that. So here I go, just a  little taste: my head had been cut and that was unavoidable I know but the wound looks like it  has  been sewn back together by a five year old with a darning needle. Mary Shelley's description of Frankenstein's monster is a disappointing creation in comparison to the image in the mirror and there was another quite extraordinary thing, and the bruise that covered the whole of my chest and looked like a relief map of South America. That was it. I made my bed on the living room sofa and watched endless episodes of 'Frasier.'

Christmas Day was a sham. I watched the turkey being carved and I thought of surgery. I pondered about becoming a vegetarian or disappearing and living in the Andes or Tibet. Until my thoughts were suddenly disturbed by her voice; The Queen. And then I had a terrible but very heartening thought-

'This could happen to anyone; even  to the Queen.'