Coming out of the closet

Record of a Baffled Spirit began in January 2007 so has been going on for nearly twenty years. Its been a record of trivia, random thoughts—some of consequence, rarely profundity. Every week as the deadline approaches, I’m scratching my head, wondering what the hell to write, like Scheherazade in ‘One Thousand and One Nights, but more ugly.

With that in mind and most of my friends now knowing the situation, it seems both right and logical I put on the record quite a significant event. Coming out of the closet as it were.

It began with a phone call, taken whilst we were tramping across a meadow just outside of  Skenfrith. The doctor wanted to see me about a recent scan. A small alarm bell rang, which grew louder when we also received a text from the Respiratory Department of Neville Hall hospital organising an appointment in three days’ time. The Consultant was brisk, kindly and Scottish. He pulled no punches. I had mesothelioma. A second scan there and then confirmed it, and we found ourselves on a fast-moving conveyor bombarded with information regarding what to expect next. Throughout and even now I felt as though all this was happening to someone else.

On the way home I googled the ‘endgame’ and was not impressed, there and then deciding that I would treat myself to a small luxury every week. My first small treat was a lettuce; to be seduced by a lettuce—obviously I hadn’t then quite got the hang of this ‘treat’ business. We’d just pulled into the Abergavenny Waitrose when I fell in love with the lettuce, its colour, a vivid, jewel-like green under strategically placed lighting. It promised a crisp, healthy crunch between two pieces of white bread lavishly buttered.  My heart sang. And my treats have since become a little more ambitious. 

Before treatment began, however, there was one more test to undergo—a biopsy—one involving the now familiar CT scanner. No problem: lie back and think of England while the doughnut shaped machine did its business. 

How wrong I was.

I assumed the position until a nurse, kind but firm told me to lie on my front and think of England. Easier to say than do with a stomach like mine and limbs with minds of their own. I tried my best, but my best was not good enough.

 ‘Arms straight in front—as though you’re diving.’ 

‘Otherwise, you won’t fit through the machine’—a different voice, less kind. What the hell did they think I was, some kind of knitting needle?

I tried but the old arms proved mutinous. A compromise was reached. One arm stretched out in front, the other stretched down at my side. 

‘Now breathe in deeply.’

‘Mmmmfff!’ I said, a pillow pressing into my face and nose. 

‘You’re choking. I see. Try and turn your face to the side.’

And so there I was, trapped in a weird frozen ‘front crawl,’ and not a swimming pool in sight. Thirty minutes later a voice told me I could move, biopsy done and dusted. They’d taken three tiny lumps of tissue, but I hadn’t felt a thing other than limbs now screaming in cramp. 

Another consultant offered hope. A trial. Proton therapy—essentially radiotherapy but in finely targeted beams zapping the cancer but leaving the surrounding flesh undamaged. It wouldn’t cure but add to my quality of life with the bonus perhaps of an extra year. The hope proved short lived. The cancer was too advanced, or in the wrong place, or something, so now I’m on immunotherapy that follows a three-week cycle. 

The first session, two weeks or so ago, wiped me out for two days. This had implications.  My birthday is the 24^th Christmas the 25^th. And I had a session due on the 23^rd, one that would wipe me out those two days with the possibility of a mince pie on Boxing Day. 

God, however intervened. I had a reaction in the form of a numb and tingling right hand, which became so weak I was unable to hold a kettle of water. In consequence the next session was held back until a short course of steroids allowed me to hold a kettle again. And a further consequence, Christmas and my birthday is now back on,  becausd the  Dec 23^rd immunotherapy session has been delayed until early January. 

I’ll not mention this whole business again, until or unless anything amusing or significant occurs. Have a very Happy Christmas. Mince pies all round.  Scheherazade is taking a week or two off.