The long dark tea-time of the soul.

Shwmae, 

Two years ago my son 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.