Post 146: Another do-nothing Sunday.
My weight has been up and down lately, but my chest pain constant—leading to my shorts becoming a bit too small around the waist and to a real lack of real big hugs.
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I weighed myself this week and found I’d put on half a stone, which is, on the whole, a good sign. I’m now back to the weight I was… well before chemo started, just after Christmas.
But back then I was rushing about here and there, working part-time, and I had no issues with my stop-start bowels.
Right now I’m not working or getting out of the house much, and the weight gain has all settled on my belly and ankles. I worry it’s not a healthy position to be in—but at the moment, chemo seems to be the biggest cause of all my problems. Or so I’m told.
Tomorrow’s chemo call with Dr S will be the big moment. That’s when I’ll find out if my PSA has fallen and whether treatment will continue. If the PSA rises, then I regard this chemo as redundant, and I’ll have no reason to go on with it.
That reminds me—during my last meeting with Dr S, I asked if hormone therapy could stop. The answer was negative. I argued that it seemed to have done nothing all year, whilst my PSA shot up from 16 to 712, and I couldn’t see the benefit of those belly injections every three months. But the answer given was that it is “doing something.” I didn’t understand or question it further. Sometimes I just don’t need to chase the ball—it’s not worth it.
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But here’s today’s growing pain: a chest and back ache that won’t go away. Every day I struggle to get in and out of bed, and every attempt brings a sharp, severe pain. It impairs my sleep, so I end up preferring to get up early and settle into my rocker, where at least I can be reasonably comfortable. Everyone’s used to seeing me there now - it’s my sanctuary.
The problem is this: it’s not just physical pain, it’s also emotional. When hugs and cuddles become awkward or painful—whether standing together, lounging on the sofa, or laying in bed—something important is lost.
We all know this couple’s disease shuts down the majority of sexual activity and desire. Hugs and cuddles become the main way to show love and affection. And when even those are reduced to light pats because of my pain, it’s deeply disappointing.
It bothers me more than I let on. It impacts my relationship with my Darling and chips away at my mental health.
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With everything going on in our lives—all the things reduced, changed, or simply given up—it feels like we’re living a half-life we’re still trying to make the most of.
But, I shouldn’t moan too much. I’m well cared for, otherwise healthy, and well supported. But still, why am I so frustrated that I can’t get away from this place I call home? (Or jail?).
It’s hard enough to find a few free days that aren’t tied up with something medical. Add in the unpredictability of constipation or diarrhoea and it becomes impossible. Impossible both physically and emotionally.
So, we just don’t bother planning trips anymore. And it’s not always down to me—my Darling has her own struggles and concerns too.
Today could have been a day for a show, the last of the year out in the fields, or visiting friends we haven’t seen in ages. Instead, the reality was this: I needed to stay within five seconds of a restroom thanks to serious diarrhoea again.
So it was another TV day. Enough said.
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Tomorrow, I should have chemo.
I just want the strength and space to do what I want, without being tied down.
Fewer people are asking me “are you coming to this” or “that.” That hurts, even if I fully understand why.
I’ve got loads of chocolate treats, though my appetite for them has gone. Fruit is easier—especially easy-peel oranges and tangerines. Some of my five a day too.
My ankles are still swelling, but the footstool helps.
What I miss most, though, are my Darling’s proper hugs, especially those ones in bed.
Maybe soon the pain will ease, and I’ll be myself again.
The bus is waiting on my results—and then, one way or another, we’ll be off again. It’s just so flipping tiring.
“I don’t like Mondays”. But what follows is always better.
Mondays, Tuesdays, Happy Days…
