CT Scan

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.

Cancer diary #07

Monday, October 19: The beginning of this week was horrible; horrible enough for me to absolutely dread the next round of chemotherapy. Apart from the heartburn (and thank you everyone for your suggestions – it has gone – for now) I had a cough, my stomach hurt, my scalp hurt, my mouth was sore (the poor cat has been quite distraught because she enjoys sharing my usual bedtime snack of baked cheese and onion crisps and I couldn’t bear to eat them), and I had diarrhoea (a change, though not a particularly welcome one, from constipation). On top of those side effects was the dreadful tiredness which dragged me down into a trough of despondency and apathy. And temper. Oh, good grief was I bad tempered!

I couldn’t see any point in going through this, for what might only be an extra year – not least because with all that is going on with Covid-19 cases rising and lockdowns all over the place the prospect of my current self-isolation continuing for what be the rest of my life didn’t bear thinking about.

And, with the worry of my kidneys not functioning as they should I was glugging down my two and a half litres of fluid every day so my tummy felt bloated and I was constantly nipping to the loo – including several times during the night.

In the beginning, I talked with doctors about wanting to have quality of life for whatever amount of time I had left – this wasn’t what I mean by quality.

Also, I had a painful foot. Come on, guys, lung cancer is quite enough, without throwing other minor problems at me. And did I mention I was bad-tempered?

I kept looking back to the days following the first chemo and thinking, well I was fine by Tuesday so maybe tomorrow I’ll be all right again. Tomorrow arrived and I wasn’t all right. Aware countless people have gone through chemotherapy with much worse side effects made me feel I was being a complete wimp.

On Friday evening, a full week after chemo, it was as though someone had flipped a switch and I was back to being me. Just like that. Extraordinary! Life was sweet again. On Saturday my brain was functioning enough for me to do my Afghanistan blog and reply to some of the many outstanding emails. The DH and I had a grand day out on Sunday, visiting the White Cairn burial chamber followed by hot chocolate at the Glentrool Visitor Centre – just an ordinary, normal outing, which a few days earlier I couldn’t have imagined being able to do again.

White Cairn burial chamber, Glentrool, Dumfries & Galloway

Something which really gave me a huge psychological boost and kept me going was a private message from someone who had read my cancer diary. She’d been prompted to have a lump in her breast – which she’d been ignoring, hoping it would disappear – checked out. She does have cancer but will have surgery soon, followed by radiotherapy and probably won’t need chemo. I’ve worried about my cancer diary being a bit self-indulgent but this has made me feel it really is worth doing.

Another nice thing was a phone call from the cancer specialist nurse to say my bloods show my kidney function is improving – yay! Huge relief – though it does mean having to continue getting those litres of fluid into me. But, now I know it’s working, it’s a small price to pay.

And, Kim Ayres sent through the photos he took last week. One I deleted immediately as it showed up all the wrinkles – and my goodness, there are many – on my face and neck. The DH and I can’t decide which we like best – the one to frame and put on the mantelpiece – the one which says, “This is us”.

Which do you think?

Finally, this week of huge downs and sweeping ups ended with having CT scans today to see if the tumour is shrinking – or spread anywhere else. I won’t know until next Monday when I have an appointment with the oncologist. If the tumour is shrinking – and my kidneys are up to it (the particular drugs I’m on apparently can cause kidney damage, something which is in the six pages of side effects but hadn’t sunk in) – I’ll continue with the chemo. If it’s still growing, then we need to have a whole different discussion. It’s going to be a long week, but at least I’m feeling well and able to do things to take my mind off worrying about it. I might even get some writing done!