Post 126: I’m trying, I’m crying, I’m writing.
Where do I start to unpack the last few days?
Life’s not fair — but that’s life.
I’ll leave it packed for now.9
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I’ve been reading some of the newbies’ posts on the MacMillan forum yesterday and today, trying to get a grip on reality. It’s all too easy to run down the long corridors of my mind, find a quiet corner, and hide there with my comfort blanket in the dark. But I know that’s only a temporary refuge — no solution to the grief I’m in, nor the grief the family is carrying. Meanwhile, the world outside my darkened room whooshes on by.
I’ve realised I’m happier inside myself if I can help something or someone. That said, my strength is in short supply — but my time is limitless. That’s part of the frustration of having cancer that doesn’t disfigure me outwardly, yet tells a very different story on the inside. I feel like nothing has changed… but my actions, or lack of them, tell the truth every day.
I can only do so much. I do what I can. I hate being ill — but that’s what I am. Mr U is not well.
“Get over yourself,” Kev would say in his mid Irish–New Yorker drawl. He was never one for sympathy if a joke could be cracked instead — and he had a wealth of them.
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Today, I had to put Kev, Getty, and repatriation to one side.
Even though I woke feeling dreadful, I knew I had to be ready for my fourth cycle of Carboplatin. The early pills did their job and I began to feel less… dead. But I didn’t have the strength to shower and felt grubby and slightly embarrassed.
My back was aching from the lumbar up — unusual for me — and just before we left, I packed the travel bag with the usual paperwork, my extra comfy lumbar cushion (beautiful kingfishers on it to match the lounge curtains), and the pills. My Darling appeared, saying “Open wide,” and promptly dosed me with oral morphine like I was a poorly child in need of Calpol.
The uneventful journey brought us to the Day Unit — that quiet, comforting place where care and poisons are oddly happy bedfellows. Quite quickly, a cannula was fitted to my near-side hand, and I looked down at my sudoku book, as usual.
When the observations were done, the head nurse began asking more serious questions about life since the last chemo — to which my answers weren’t exactly comfortable listening. A week of blood in the diarrhoea, now four days without a bowel movement, a recent spinal scan, back pain… and so on. My blood pressure came in at 97 over 58, which is low for me, and my temperature at 37.5. They left me to rest for half an hour, even gave me a biscuit to see if the morphine was to blame, then tried the other arm — readings better there.
I was asked if I still wanted the chemo. I said yes, I’m here, I’m ready, let’s get on with it.
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Before starting the drip, the nurse and I had a long, honest chat about my treatment plan, Monday’s inconclusive verdict on Carboplatin, and my growing lack of faith in it — especially in light of today’s PSA of 465. She offered, unprompted, to pass my concerns directly to the oncology team, and I gladly accepted.
What I need now is a straight talk with them — a warts-and-all conversation about my body today. Not about when I was first diagnosed, or when the Gleason score was new and scary. Not about the failed pills two years later. I need to talk about where the cancer is now, the options left, and an honest prognosis. Real words. Hard words. But words I need to hear.
There was an immediate acknowledgment from the team, and that gave me a lift.
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Chemo went in smoothly, as always thanks to the wonderful staff. We left, walking slowly through the busy Thursday afternoon corridors, my Darling’s hand in mine, her touch bringing me back to my senses. I could feel her hold of me was more intense than normal. Things are buzzing in her head.
At home, I unpacked the extra meds for the next few days — lining them up on the kitchen counter so I won’t forget the steroids and anti-sickness pills needed after chemo. I told my Darling I’d head up for a rest, and it was then I felt the trouble in her beautiful head. We hugged longer than we have in a long time. One of them don’t leave hugs.
Life is for the living, even while we honour and miss those who’ve already gone.
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I’ve hopped on the right bus, but the jury is still out on the treatment plan and final destination. The meeting will be in three weeks — delayed because my oncologist is on annual leave. I just can’t catch a break!
So the next chemo will be postponed, and the blood test will have to be rescheduled. Self-advocacy continues tomorrow.
Goodnight, team. Goodnight, readers.
Things could be a whole lot worse.
Tomorrow is another day on this colourful spinning planet — and my restless waking mind will try, once again, to be positive.
