Letter from the North

Writing Without Words

As part of Penzance Literary Festival, I will be presenting a session on the trials and tribulations of writing a blog. It will be a bit different to the usual sort of Litfest presentation because I can’t really write; I can throw words onto the page, but they don’t make sense without a lot of editing and Teresa and I plan to talk about that process, and the unusual wiring in my brain that lies behind this. 

My writing process and what I write about are intimately tied together, they are inseparable. So, the talk will be as much about living with cancer, autism and gender as it is about writing. Of course, me being me, the talk could go anywhere, because my brain doesn’t really understand the concept of “staying on topic”. 

So, just to whet your appetite, the last eight months in a few words, well, a few for me. 

 

This time last year Teresa and I were looking forward to going to the Warwick Folk Festival, a mainstay in our festival calendar. I was in a full-time job that I loved, I was finally living in Cornwall, and we were both looking forward to our future together. 

How life changes, today we are still looking forward to Warwick Folk Festival, though the tickets are now half the price of last year’s because Teresa goes free as my carer. I am still in a full-time job that I love, but I need to work from home four days a week, only going into the office one morning a week, when I can. 

Yesterday I had my regular three-month CT scan. Today I am recovering from my body’s reaction to the contrast injected when they do the scan. For the next week we will be on tenterhooks waiting to find out whether the cancer is better, worse or the same as it was three months ago. 

Some of you already know this, but for those of you who are new to my story, our life was turned on its head last October by a traffic accident. Someone “driving without due care and attention” destroyed my Landrover, sending me off in an ambulance to casualty. There is an argument that I should thank him for the broken ribs, smashed up collarbone and other injuries, his actions may well have extended my life! I am grateful for that, but I am not at all grateful for the damage and ongoing pain I have to deal with. 

When they X-rayed my collarbone, the Casualty Consultant saw “something”. He wasn’t satisfied so did another X-ray and then a CT Scan; within a few hours of arriving in Casualty that Friday morning, he sat down and talked to us. The broken bones were of no concern to him, they were normal and easy to deal with. What was of concern was that he’d seen a mass on my left kidney as well as enlarged lymph nodes in my lungs, near my spine and a whopping great big one in my shoulder an inch or so away from the broken collar bone; that was the shadow he spotted in the first X-Ray. 

He didn’t use the word CANCER, but there was no doubt that was what I had, and that it had spread, and so was serious and my life was likely to be shortened, by how much we didn’t know. 

I’m a realist, chances are that if it had spread we were talking a few years if we were lucky, and so time to get my affairs in order. 

As part of that process, since few people seem to talk about cancer and as I’d been writing a blog on being autistic and non-binary gendered, I felt that the one thing I could do was to openly document my experience of this miserable disease in the hope that it might help at least one person understand what was happening to them and find the words they were too frightened to look for on their own. 

So, the blog was born that day – 27th October 2017. I had to dictate the first few entries to Teresa because I had no use of my right arm then, and minimal use for the next few months.  

Indeed, in the early days our main concern was trying to cope with my injuries, the cancer was sitting there like the iceberg it had been before we knew about it, submerged and out of sight, silent and very deadly. 

More CT Scans, a biopsy and nearly six weeks later we got to see an Oncologist who confirmed Metastatic Renal Cancer. Too late for surgery, Chemotherapy doesn’t work on this cancer so NO chance of a cure, just drugs that may extend life and make it more comfortable. When asked about prognosis he came up with two to three years!  

Well, better than a few weeks! 

And so, the story continues to be told, I still write my blog almost every day, sometimes it is banal and boring, but life is like that, it’s not all high days and holidays, but the story continues to unfold, the cancer is still there fighting the drugs. The drugs were fighting the cancer three months ago and I’ll find out in a week whether they still are and, if they aren’t, what Plan B might be. 

So, please remember World Kidney Cancer day on Thursday 21st June 2018 – and why not join me at the Penzance Litfest (4th – 7th July 2018) at 1:30 pm on Thursday 5th July 2018 where I will talk a bit about my experiences and how the writing process works for someone like me. Be assured that we – that is me and anyone who turns up and wants to talk – will talk a lot because my blog is about communication, and it takes at least two to communicate. 

So, there you have it. We very much hope to see you in Penzance in July. 

The Bean, Pendeen, Wed 20th June 2018, still here and still writing. 

 

 

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