Week 3 - Day 14

I will start by saying I am grateful to her late Majesty for timing the funeral for today. Watching it on TV at the hospital meant that it filled the many hours of waiting around I was forced to do today. I had a 10.15am appointment, so my car picked me up at 9am. I felt conflicted about my treatment continuing on a bank holiday. On the one hand, I just wanted to stay in bed because the girls weren’t getting up for school, so there was no need for an alarm. On the other hand, I just want to get all my treatments out of the way as quickly as possible, so I was really pleased that I didn’t need to miss one. I am hanging on to the thought of the last treatment on October 11th. It is the shining beacon of hope that is keeping me going.

Just before we arrived in Oxford I had a call from the hospital to say the chiller that cools the machine had broken down and, being a bank holiday, it was proving difficult to source a repairer for today. They told me to come to Oxford to collect my mask, then I would need to go to Milton Keynes for the radiotherapy. The earliest appointment they had, however, was 1.30pm, so it would mean a lot of waiting around. I had the option to drive home first but it seemed pointless as I was already in Oxford, so I waited. I watched the funeral procession from the waiting room of a cancer hospital – as if watching a funeral isn’t sad enough already! I wasn’t at all prepared for this delay. I hadn’t brought any of my meds, nor any food, so when I got to Milton Keynes I was feeling somewhat apprehensive. The pain was starting to kick in, along with hunger, and also I was anxious about the new environment, having taken the best part of 2 weeks to become more comfortable with the situation in Oxford. Thankfully, they had biscuits and a coffee machine, so two ginger nuts dunked in tea later I was feeling a bit better.

It was strange being somewhere different for treatment. The Oxford staff had come to do the treatment, which was a huge relief, but they couldn’t play music over the speaker so I had to make do with quieter sound from a computer. Better than nothing. Today I chose ‘Fight Song’ although I was feeling so exhausted and exasperated by the time I finally got into the mask, I didn’t really feel much like a fighter. It didn’t help that the machine seemed to stop at the halfway point for a lot longer than it does in Oxford, and the music finished playing and there was a long pause before a new song came on. I almost waved for them to unbolt me as I had started to panic, but I’ve learned if I do this, it just means even longer in the mask. So a few deep breaths later, treatment finished and I was out.

I think I slept most of the almost 2-hour journey home. I have started taking a pillow with me and usually put it between the window and headrest so I can put my head into the corner. I pray I wasn't snoring, but there's a good chance given how blocked my sinuses are. Having left the house at 9am, I got home at 3.30pm – a very long day for a 20 minute treatment. Sadly I had a call this evening to say it will be in Milton Keynes again tomorrow as the part they need to repair the chiller wasn’t available today due to the bank holiday. I’m hoping it’s back to Oxford from Wednesday.

Eating seems to have become almost impossible overnight. Everything burns my mouth when I swallow, even after I have taken painkillers. I suspect I will need to move onto the codeine sooner than I had wanted to – either that or a feeding tube. Having desperately wanted to avoid the feeding tube until a few days ago, I can now see the reason so many people have them. The pain just becomes too much, and trying to eat on top of managing all of the side effects is just unnecessary. I’m still going to try to get through without one, but I’m no longer ruling it out. 

I'm also starting to develop a 'suntan' on my neck, so need to slather a special gel on it at least 3 times a day. This is fine if you have short hair but quite messy with longer hair, so you may find I'm sporting a pony tail for the next few weeks. I'm also trying to keep up with my daily exercises. Radiation causes scar tissue in your throat muscles which can make it hard to open your mouth fully, so every day I need to push my jaw open and hold it for a few seconds. I can only do this after I have taken painkillers as it really does hurt, but not as much as the swallowing!

As well as it being the Queen’s funeral today, it was also Rich’s birthday. Hoorah! Due the chiller issue, he spent most of it on his own with the girls, and when I finally made it home, I wasn’t really in the party mood – although I think the funeral had set the general mood for the day either way! To try to make it feel more like a birthday, I opened a nice bottle of Bordeaux and poured a glass for the birthday boy, not before having a big sniff first! I can't imagine it right now, but hopefully one day I will be able to enjoy a nice glass of wine again.