Post 135: Dewy mornings.
Opening the conservatory door, I feel the cool morning air on my bare legs but am blinded by the bright sunlight streaming into the new day. Mr Vicious has been fed and watered and is trying to trip me up in his rush to get outside first. Why he won’t use his cat flap only he knows.
I’m in my slippers but wander out to the high borders where the autumn colours are appearing in slow progression as the days go by. The dew is thick today, more like rain. In fact, last night we did have some rain, but it hasn’t made much difference to the garden in this driest year on record. Still, I can feel the seasons starting to shift. I return to my second rocker, the one looking out of the open door, and ponder my feelings with a pint glass of water — my go-to drink of choice.
Already I’ve emailed the specialist cancer nurse with a weekly update. I’ve also checked my prescriptions to make sure I get more gabapentin now that I’ve doubled the dose — I must check. The daily thoughts about self-advocacy never get easier. I try my best not to pester the admin staff, but I think I get by with a politeness and directness that neither upsets nor wastes their time. I hope so.
The letter to the cancer team goes like this:
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Hi Ms N,
I’m looking forward to next Thursday’s meeting to discuss my treatment plan and future quality of life. I’ll be bringing my youngest son as well as my Darling, if that’s ok.
I’ve got a list of questions if you or Dr S [my oncologist] would like them beforehand?
Last week was the usual see-saw of constipation and diarrhoea, but that’s not unusual. I live with that.
Ms O from St Wilfred’s called and reviewed my chest pain and pills. She advised doubling the gabapentin from 100 to 200mg three times a day. This took six days to complete by adding one pill every second day. All went well and the nerve pain is gone. The upside was better sleep, and I only needed the oral morphine once a day — or not at all.
But at the Bank Holiday weekend things changed with my chest and ribs. Although there is no nerve pain now, it’s been replaced with aches. These are severe when lying down, not when sitting. The aches are front to back but worse on the right-hand side. If I squeeze the ribs from side to side, I get pain. If I press anywhere on the ribs, it’s tender and increases with pressure. I find it hard to sleep because whichever way I lie, the ribcage is pressed and it hurts.
It’s not like the nerve pain. More like bad bruising or broken rib pain. I assure you I’ve not been sparring at the gym, ha ha, but it feels like I’ve taken a few blows to the chest. Morphine at night is the way around it for now.
Other than that, we are coping.
Kind regards,
Mr U
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That letter speaks for itself, but I didn’t include the questions for next week’s pow-wow. I think they’ll want to say what they have to say and not much more. I could have a million questions, but I doubt there’ll be time for many. I’m not saying the meeting is predestined, but I know the limitations of the clinical mind — and crystal ball gazing isn’t one of their strengths (thank God).
Here are my questions anyway:
Meeting with Dr S: 4/9/25
1. In the mid-term chemo call and recent scan, you said it was “basically ok” and carboplatin should continue. After reading the report myself, I saw little that looked ok. Why do you say carbo is ok?
2. Are the blood and scan results what you expected for mid-term checks on my cancer?
3. Why is the PSA still so high?
4. What’s the full plan of possible future treatments?
5. If carbo continues until 20/10/25, when will my next blood test be, and how often will bloods/scans be checked afterwards?
6. If everything goes to plan and chemo finishes on 20/10/25, when would the next chemo be expected after a “rest period”?
7. What should I expect activity-wise during that rest period — resting at home, walking to the shops, trips/holidays?
8. Will PSA be the trigger for future treatments?
9. If PSA rises after a month, how soon before treatment restarts?
10. How long can I expect a reasonable quality of life like I had before chemo? Or is that gone?
11. What’s my prognosis today?
12. AOB.
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I’ve already had a reply to the email, which was a surprise. Unfortunately it just said, “Sorry, I’m out of my office till Monday.” Not quite what I hoped for — but nothing urgent, so no need to be down.
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Yesterday I had a welfare meeting at work and realised I’d gone a day earlier than I ought to have. Embarrassing. Ah well, there wasn’t much to say, so after a good chat we decided to let it go and arrange another session after my pow-wow with Dr S. By then I’ll bring details about finishing chemo and a possible return to work.
I can’t wait.
I’m needing the daily grind and the social interactions with colleagues and managers to regain a more normal balance.
After the meeting, my manager said he’d send over a couple of my closest colleagues for a catch-up. That really made my day. Chatting about silly things and how much (or little) had changed was a delight. I went home feeling like I still belonged. That’s the best feeling.
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At home, my Darling looked shook. She said her headache had developed into a full-blown migraine while I was out. I pulled the curtains and darkened the room but it wasn’t enough, so she had to go to bed. Later she came down and I made her a small jam sandwich and a big cuppa. That went down a treat — though I don’t remember the last time she asked for a jam sandwich. Just very strange to me.
We watched a bit of catch-up TV before she headed to bed earlier than usual. She looked so tired. The full effects of her brother’s death, on top of the stress of my treatments, haven’t surfaced yet, I’m sure. Inside her little head is a world of pain and sadness I can only imagine.
Time is a great healer. But time passes so slowly lately.
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Mr Vicious is sunning himself on the patio, keeping one feline eye on me while he dozes.
I’m awaiting a call from Macmillan for financial advice, so I’d better get some breakfast while I can.
The bus is still bumping along the chemo pathway.
It’s a week to wait for that meeting — I hope I get some answers.
The sun has come out to play. So should I.
