Monday 11, January 2021: Back in Edinburgh for another set of six radiotherapy treatments. I’m confusing myself by starting my diary update with today’s date and writing it up retrospectively. Right now, I’m easily confused and very, very tired so I’m going to do this update – and probably others – chronologically.
Tuesday 05, January: I had my meeting with the specialist nurse after my treatment today. She went through the check list of symptoms. I admitted some solid foods were more difficult to swallow – especially bread. She checked how much of the antacid with Oxetacaine I’d been prescribed as apparently there’s a problem with supply. We chatted for a while about lockdown and how different it is when stuck in a hotel on your own in a city that’s closed than being stuck at home under lockdown. It wasn’t until I’d left the hospital I remembered the questions I’d written down and forgotten to ask.
Wednesday 06, January: There was a warm Danish pastry in my breakfast bag this morning but as soon as I took a bite I regretted it – swallowing it was so painful but I had no choice but to get it down.
After my treatment I mentioned to one of the radiographers I’d forgotten to ask some questions when I met the nurse – do I need to continue taking folic acid, when is it OK to have dental treatment and could I get clarification on the instruction about leaving one to two hours either side of the antacid with Oxetacaine before taking other medication?
No problem – we’d go and find a nurse to ask. It kind of got complicated after that!
Questions one and two would have to be put to the doctor. OK, no problem. The nurse asked some of her colleagues about the timing of other medications with the Oxetacaine – no one had heard of this. Where had I heard this? I explained it was outlined in the letters the pharmacist had put in with my bottles of medication – one for my GP and one for my community pharmacist. Finally, she asked if I would mind going back to the pharmacist to ask him to clarify things. I have a feeling she thought I’d made it up or was confused.
Before going to speak to the pharmacist I went to Maggie’s to meet a friend. I mentioned some weeks ago that someone reading my blog was prompted to have a breast lump checked out. Now, she is also attending the Cancer Centre in Edinburgh for radiotherapy. It felt really good to meet up for a coffee and a chat – it felt like bringing a little bit of normality into our lives. Of course, we talked about cancer – our own, in particular – I guess this is our normal for now.
When she went off for her treatment I spoke to the pharmacist about the Oxetacaine. He confirmed there should be the one to two hour gap for any other medications – even paracetamol. I asked if I could take a copy of the letter to GPs to the nurses who prescribe this medication without knowing about the problem of absorbency of other drugs.
One of my oncologist’s registrars phoned later, to say I don’t need to continue with folic acid and as long as my dentist is aware of my medical history and medication it’s fine to undergo dental work. Goodness knows when that can ever happen – I’m only home on Sunday for now. Just hope I don’t wake up one morning to find the tooth has completely crumbled away. I was a bit taken aback that she thought I was still on injections to prevent blood clots when it was changed to oral medication months ago. Maybe she’ll update my notes.
Covid cases and deaths increasing here and riots in the US Capitol Building. It’s been a full on day.
Thursday 07, January: For some reason my appointment was very early today – 8.30. I did make it on time, but I hadn’t had a shower or brushed my teeth. The radiologist laughed, saying: “It’s OK, we wear masks.”
I took the letter to the nurse – of course, the one I saw yesterday wasn’t there. I did feel a bit reluctant to hand over the letter to someone who probably knew nothing about the discussion so she had to hear me out while I explained and showed her the relevant part of the letter. She said: “This will be useful because we prescribe this medication to a lot of patients.” I don’t know why the information isn’t widely known – but I feel I’ve done my bit.
Swallowing is becoming increasingly painful. Solid food is difficult – who knew I’d be tempted by Pot Noodles? Slide down nicely, once cool enough.
Friday 08, January: After today’s treatment I asked the radiologist how much worse my throat was likely to get. I suppose what I wanted to know was how far away from the feeding tube am I? I just needed a bit of reassurance. She told me stronger pain relief could be prescribed if it becomes worse but not to expect it to go away as soon as the treatment is finished because the radiation carries on working for a few weeks. She suggested I went to Maggie’s instead of going straight back to the hotel. It was a good idea – just to relax and read in lovely surroundings.
Saturday 09, January: I admitted to the radiologists this morning I was beginning to lose confidence in my ability to cope with the treatment and its side effects – the throat pain, the fatigue and now some interesting little pouches of fluid appearing on my neck. They said to keep an eye on the fluid pouch, reassured me, again, stronger pain relief is available and said I should rest as much as possible. I shouldn’t feel guilty if I fall asleep whenever I sit down.
The DH brought me home, made the mushroom soup I had a fancy for and told me he had recorded Holby City, for which I managed to stay awake.
Monday 11, January: Back to where I started this post. I had a lazy Sunday before reluctantly re-packing my suitcasefor Edinburgh. Today’streatment was number 14 – only six more to go. Throat pain still manageable – take the Oxetacaine 15 minutes before eating and two paracetamol an hour later plus dozens of strong mints.
To assist my body in its attempts to recover from the onslaught of radiation I’m going to take a break from social media for a week. I’ll check in to reply to comments. This post has taken me ages to write. I hope it isn’t terribly boring.