Post 230: I made a great decision — for me.
There’s a really quick answer to the question about how the meeting went, and that is: I’ll have three months off for good behaviour thanks, goodbye.
I’ve chosen not to have any treatment or tests for three months unless there are symptoms that require attention.
That’s the basic conclusion, which means you can now skip to the end, avoiding the explanation for my choice during a helpful and friendly meeting.
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I received a text message at 08:30 from a lovely lady who wrote out a few questions that must be asked today at the oncology meeting at 11:00. The person in question arrived smiling beside my bed soon after with a caring kiss and a gentle hug. My Darling then headed for the bathroom to freshen up — as they say in the films.
Clearly, after reading that text, I knew I was not the only one who had a mind full of thoughts that needed to be ironed out and asked in some kind of useful order to clear up some confusion and worry, at that meeting.
We were both anxious but quiet, leaving spaces where we should have been chatting things over. It’s just a meeting — but it means so much.
Our youngest arrived a bit later from work to chaperone us in all things today. His addition to our quietness had quickly filled the gaps with his news about their home renovations and a particularly lovely rescue dog called Byron; at least that helped, for a while.
More about Byron, who they collect next week, later.
On the way up in the car, and in the waiting room/corridor, we did discuss the more pertinent views on medicines and treatments versus tests and scan reports. The clinic was casually late — not that it mattered, because we were the only people waiting there.
Eventually we filed in, all three of us, in a very friendly welcoming fashion, inside the room for that meeting.
We started with a light conversation about “how I was”, which, apart from the right-hand side pain and the radiotherapy to the ribs on the left-hand side (which was minimal), allowed us to swiftly move on to treatments…
Ra-223 and Docetaxel.
This is where we rounded a few bends explaining the assistance I’d get for my bones and bone pain from the Ra-223. Round and around nicely getting us back to the beginning several times, with my understanding evaporating with each turn.
And when I’d had enough of the Radium dizziness, I suggested a change of subject and asked what real benefit Docetaxel at 50% would have for my body and cancer? This was a brief chat and led to the conclusion that my body is weak and the chemo strong.
I made it clear and reiterated that my first chemo had made a big mess of me this year, and to be frank I’m not happy going back on that bus.
I pushed for another conversational direction and asked what the MRI scans showed us from the ones at the beginning of the year till the most recent one. I wanted this answered in detail. But this was not easy question to answer, it seems.
Although there were visible signs of improvement in some lesions in my pelvis, there was progression in the left shoulder and ribs and spine. So basically the chemo had done some good, but not enough to be very happy about.
The PSA hadn’t been mentioned, but as the blood test was reported to be good and there was no anaemia, she was happy to not feel it unnecessary for any infusion — another plus.
But what about the PSA? I asked. That was still around 360. The last six weeks haven’t seen any movement, and 362 was the highest in the last three tests. Basically the PSA is stable.
This was music to my ears. Honestly, I was so relieved
If the trend was going up it would be hard not to consider another bout of the dreaded chemo — but luckily I don’t.
So to save some time and a whole lot of fidgeting in our chairs, I gave my whole heartedly honest opinion about what I’d like to happen — “but first, tell me what you’d call active surveillance for my particular situation, because that’s what I’d prefer right now” I offered.
This became a joint effort in fine-tuning the best solution for me, which ended as a three-month blood test and face-to-face chat, but in mid-January, when my cancer specialist nurse would be back at work, she’d ring me to see how things are going.
I thought that was plenty good enough, and as my brow unfurled and my heart’s pace slowed due to the meeting going my way — and now we were in unison — so the blood forms were sent to the printer down the corridor, and we got up, wished each other a merry Christmas, and departed with the newly printed forms.
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The drive home was chilled and happy, and after a diversion firstly to a garden centre in the middle of nowhere for some Danish pastries and Eccles cakes, then on to the café in town for a gut-busting late lunch and galleons of tea — by then we headed home with a clear picture of what was next for me and my body. A three month break.
I’m very happy to have a break both mentally and physically from the rigours of cancer treatment. I’m knackered and mentally drained. I need a rest and I vowed to get one.
Christmas come early? No, not at all.
I’m still weak and have this stupid right-side pain. I can’t keep my eyes open, and I’m unlikely to be fit for work for ages.
So no, I’m not in great shape, but my Darling and I will do our utmost to get back to improved fitness and a more stable mind.
Oh yes — there was another win for me in the shape of a bullet-shaped needle. The Tinzaparin syringes can be swapped for Apixaban capsules. This is what I’ve been longing for due to my poor tummy being a pin cushion for long enough — it’s also damaged beyond repair with hard lumps and bumps all around my sore belly-button.
Hip, hip, hurrah!
So there it is. I’m not very well, but I’m really happy with the decision I’ve made without duress or confusion.
I now want to enjoy this break away from the clinics and clinical personnel who have helped me, but whom I’d gladly never want to see again. A wish that is not going to happen — those nurses will see me again, but not for a long while one hopes.
Sleep well everyone; I know we will.
