Monday, December 07: From last Monday to this, the side effects continued to linger – nothing specific just a general mixture of ‘meh-ness’ and fatigue. Unfortunately, the breathlessness became worse. We did one of my favourite circular walks between Rockcliffe and Kippford – an area known as The Scottish Riviera. Last April, I blogged about it, calling it a short walk of 3.5 miles. You can read the post and see the pics here.
Last week, on a lovely bright day, I could have cried with frustration at how difficult I found this same walk. I’d have said it was mostly level and yet it suddenly seemed to have grown hills I didn’t even remember. I had to stop to catch my breath and did wonder if I’d have to stay in Kippford while the DH walked back to Rockcliffe for the car. However, I made it.
A couple of days later, we visited Neilson’s Monument on top of Barstobrick Hill near Ringford.
The monument was erected by his son in 1883, in memory of James Beaumont Neilson who invented the hot-blast furnace in 1828, which revolutionised the practice of smelting iron. I’ve always enjoyed the walk there as, though the hill is not high, the views are wonderful on a clear day.
I had to stop a couple of times to get my breath back – I mean I do always puff when climbing any hill but I never used to have to stop on the way to the monument. Although I skipped back down the hill with no problems I came home feeling pretty miserable.
Walking is a huge part of my life – with a walking group (in pre-Covid days), with my sister and her dog, with the DH, on my own – and to feel this is being taken away from me is devastating.
By the weekend, the prospect of today’s meeting with the oncologist to hear the scan result and decide on next steps looming large I was in no mood to attempt a walk. I hardly slept last night and when I did it was to dream of conversations with the oncologist.
I told her I was extremely anxious about the scan result so she agreed to discuss that first – last time we had a medical examination and lots of questions about how I’d been, when all the time I just wanted to know the result. This time, we got to that bit first – and – cheers all round – the tumour has indeed shrunk. Unfortunately they said it was difficult to measure so I don’t know by how much it has shrunk – but the juggernaut has stopped and gone into reverse.
The summary of the report says: “Interval reduction in the volume of the right upper lobe tumour with re-expansion of apical segment of the right upper lobe. Lymphadenopathy is stable. No new lung lesions. Abdominal scan is unremarkable.”
Don’t put away your kick ass boots yet, though, as there’s four weeks of radiotherapy to be gone through try to continue the shrinking process.
The oncologist repeated what she said at the beginning of this horrible journey, she is not expecting the treatment to be curative and, though she said it bring a cure for 1 in 8 patients, it seems clear I’m in the 7 in 8 category who can hope for some extended time. She says at least a year or two.
I’m not sure how I feel – very happy the chemo has done something to shrink the tumour a bit. I’d have been utterly squashed if shoving toxic chemicals into my body with the resulting horrible side effects had done nothing. Very nervous about what’s coming next. Very worried the radiotherapy side effects will make me feel worse than I do now. I guess they have to spell out the worst-case scenarios but really – throat so sore when I swallow I’ll need morphine strength painkillers or even a feeding tube; permanent scarring on my lung causing breathlessness.
As you can imagine, it’s a lot to take in and process. We recorded the discussion and have already listened to parts of it again. Tomorrow – Tuesday – I go to Edinburgh for the planning scan, which does not sound fun – lying completely still with my arms above my head for twenty minutes – and wearing a mask. Not the kind of mask we’re all wearing these days but something over my entire face and neck. I wonder if I’ll have the courage to ask someone to take a photo for the blog.
Please, keep those kick ass boots at the ready. Mine are!