I feel I need at this point to let out my thoughts on this matter. I have joined the MacMillan forum page to deepen the discussion I need, but wanted to share a little here as my damaged brain tries to comprehend the bigger picture, the woods if you like. I feel it is time.
Last night, or rather early this morning at 5 am, while I was still trying to sleep, my phone pinged a message alert. I thought it might have been my friend in China or another friend in Oz and I was going to ignore it until I had the chance to awake from some much needed sleep I couldn’t reach. Perchance, I thought I would check it just to sate my curiosity. It was a message from my second eldest son.
Two years ago he was diagnosed with sarcoma cancer, a rare soft tissue cancer that affects less than 1% of adult cases but more common in children at 15% of cases. This means that treatment options are limited and one of the only promising treatments is CAR T-cell therapy, not readily available or likely because an exact donor must be found. He had all the usual radiation/Chemo and surgery to repel the cancer, however, last year it had spread to his lungs and was deemed terminal. He was put on a medication that would shrink the cancer throughout the year.
He is seventeen. Has raging teenage hormones and has been diagnosed with Autism, so you can imagine the predicament. So, he messages me, understandably angry and disappointed about everything in his life. This will be his last year, maybe weeks, maybe months. He spends everyday in bed and in pain. All treatment has stopped and the medical profession has told him he just needs to survive as best he can.
I messaged him for about two and a half hours, couldn’t be too emotional as his Autistic personality doesn’t register emotion. It was a difficult conversation. I knew this was coming but had blocked it, blanked it. My emotional response often wild and manic, his blunted and muted. It had all left me feeling dissociated and alienated. I have reached out for some grievance counselling, that’s the best I can do at this time. It’s difficult to put one’s own troubles aside after having a stroke, as I have only in the last five years begun to deal with my own mortality let alone my son’s. My brain is twitching with exhaustion trying to make sense of something I have always felt I had sense of. So many conflicting thoughts. I know I need to now open up about it, I have buried my head in the sand for too long.
Frankly, I am in a bit of a daze. Talking to people I know is not really satisfying and potentially feels upsetting. Writing is better. Alone with the alphabet as my guide. I feel like commandeering a ship and sailing away as a lone pirate on the choppy seas, the endless horizon the only metaphor for existence. That aside, I will continue over the next few weeks or months registering my emotions and how my damaged brain handles them. It’s not making sense of anything right now, I suppose that is natural.
Since I was three, when my mother died of cancer, I feel like I have moved through life like an existential will-o’-the-wisp, gathering wisdom but never knowing quite where to put it or what do with it as by all accounts I feel common humanity tends to be at odds with itself and no homeostasis is in sight. Perhaps this is why so many people cling to the concept of nirvana or the equivalent. In any case, just thought I’d share my current circumstances with the forum as over time, I’ve appreciated the special place such a platform can be to those of us in need of sharing our thoughts and engaging, albeit, by the written form.
. I appreciated the song but it is not my cup of tea, my mood at the moment reflects a song I turn to at dark times but can’t post to the forum, I feel. It is by Ian Dury and has two words, the last being Ada. I’ll let you work that one out 
