This post was written in October 2020 and never published. I’m not sure who among us wrote it, but I feel it deserved to be published.Kate
I just woke up to my nurse and a doctor who looked exactly like Ted from Schitts Creek standing over me saying my name and offering me an enema. Obviously I had to second guess my state of consciousness there for a moment, particularly given my recent pastime of binge watching the aforementioned TV show, alas I was not dreaming.
I’ll spare you the details but that was an awkward conversation, at least for me.
Night 10 and along the way hospital life has somehow overthrown my memories of pre hospital life. It’s desperately frustrating to lie here and realise that aside from intellectual knowledge of its colour, right now I cannot remember for the life of me what my car looks like.
My phone has photos of the children, I know them but I can’t seem to find a visual context when I try to imagine them in my life, the home I know I live in feels like a memory of a movie from long ago. All that exists for me are blue curtains and the sound of various beeps that seem to play the baby shark song over and over.
I run my fingers along my now prominent hip bones and rib cage somewhat obsessively, a habit from the old days that seems to have recently revived itself, that and compulsive checking of my wrist size. Damn it, I don’t need that back in my life.
I try to remind myself I’m dying and none of that matters, all that matters is being well enough to make myself ill on chemo for a while so I can have yet another operation. The bag on my abdomen gurgles randomly and I get a rush of panic that I will once again awaken in a pool of my own shit having “leaked” through the night.
I think I’m still more scared of living than dying, living like this anyway. Being a cancer patient comes with a lot of pressure to be positive, pressure to claim warrior status and smile your way through your illness so your loved ones can talk over cucumber sandwiches at your wake about your ‘battle’ and how hard you fought.
Over the course of this ileostomy recovery I had a few complications, a blood clot in my lung and also issues with my stoma, when I’ve started to eat non liquid foods my bowel slows down, swells, fills with gas and essentially blocks itself causing intense pain and vomiting.
Let me tell you I was no warrior in those moments, I was sweaty, crying and in agony and when no pain killer touched the sides and the anti nausea drugs couldn’t stop the vomiting, all I could do was lie curled up on my bed with my head in a bag praying for death to come swiftly.
Now I’m frightened to eat. Again. An old fear, but now for such different reasons. I’m frightened that chemo will leave me in the same debilitatingly nauseated state that the ileus did and I’ll die from malnutrition and exhaustion long before the peritonectomy or the cancer have a chance to finish me off.
I know, I know. Millions of people walk this cancer journey and emerge as warriors, the ones that don’t make it out ‘fought hard to the end’. They suck it up, they do the chemo, they have the operations for themselves or for their families. But I’m scared I can’t suck it up for my family. The family, that as I lie here in my blue curtained chamber, I can’t even properly remember.
The compartmentalised world I inhabit feels so lonely and bleak and yet it’s all that exists.
I don’t want to feel exhausted and sick and utterly defeated for the rest of my life and I don’t want to be remembered for fighting in a battle I didn’t believe in.