MarySmith’sPlace ~ Cancer Diary #23 – cast adrift on a sea of confusion

Wednesday 10, February: I had my first Covid vaccination on Thursday. If there were any side effects they were camouflaged by the radiation side effects – didn’t even have a sore arm. I don’t know when I’ll receive the second on – maybe in about 12 weeks, depending on supplies.

On Sunday, I managed to stay awake all day for the first time since I finished my treatment and went out for a short walk. We’ve escaped Storm Darcy’s snow but my goodness it was freezing – much too cold to take my gloves off to take photos. In the evening I tried a little glass of wine as the acid reflux has improved with the change of medication. Can’t say I particularly enjoyed it though.

Having been quite chirpy by bedtime on Sunday (it was a tiny glass of wine so it wasn’t that) I was bitterly disappointed on Monday to find I felt worse than ever. The radiation side effects were no worse: in fact, the ‘sunburn’ is now a small patch and the swallowing pain is manageable without pain relief. I do have to remember I can’t eat like I did before. I have to be much daintier. Always a fast gobble of an eater, if take too big a mouthful the pain on swallowing is dreadful so it has to be little bites. I can only say I felt like shit – a feeling which didn’t go away. And, I found I couldn’t sleep at night. Until now, no matter how many naps I took during the day it didn’t stop me sleeping at night. Now, I’m scarcely napping during the day and not sleeping at night.

I think it’s probably ‘scanxiety’ setting in early and to make matters worse it turns out the scan is not going to be six weeks – but 12 weeks after the end of radiotherapy. Last week, blogger Stevie Turner said she’d had to wait three months before her post-treatment scan. I just assumed it was because we had different cancers. Turns out I was wrong.

The specialist cancer nurse called today (and next week’s call is in our diaries). He mentioned I’d see the oncologist at the beginning of March for a six-week post-treatment review and said: “The follow up CT scan will be 12 weeks after the end of your treatment – and then if it’s necessary you may see the doctor.”

To say I was gobsmacked is a gross understatement. I raised my voice, I used the F-word, I cried. He explained the radiation continues working for more than the six weeks I thought, so there was no point in doing a scan until after 12 weeks. OK, I get that, I can understand that (still curious as to how I so thoroughly misunderstood the timings) but what I can’t get my head round is a review when the oncologist can’t know what’s happening to the tumours or the lymph nodes and yet after the CT scan it seems the oncologist might not deem it necessary for us to meet. That surely can’t be right, can it?

I did quite a lot of squawking about how wretched I feel and how I’m worried about my lack of energy and if this is as good as it’s going to get then I wish I hadn’t bothered going for the treatment. I tried to explain how cut adrift it feels – treatment finished, off you go, bye bye. He starts to worry about my mental health and asks if I’d like to talk to someone like my GP. I say I spoke to my GP last week. I don’t say I’ll write my blog tonight and that will sort out the depression – nor do I say, as I wish I had now (and will next week) that by continuing to let me talk – we got onto the subject of chips and mayo at one point – my mood did lift a bit. It’s not always talking about how we feel which helps, it’s feeling connected to another human.

And it’s lifting further tonight – phone conversations with two good friends, a bit of time in the garden breathing fresh air, writing this, realising that if I have until early April before the CT scan, I can be fairly confident no one expects me to kick the bucket in the meantime (they don’t, do they?) so I can look forward to spending time in the garden in March, maybe walking more. And it’s probably not expected I’ll die immediately after the scan so maybe I have some more months, even a year, to be here – just let them not be months of feeling like shit.

Speaking of which, the lactulose helped in the short term but having stopped all pain relief, there’s now no need for the laxatives – yay.  

Twelve weeks before finding out what’s going on inside my lung still seems a long, long time to wait.