A Pain in the Mouth

The Chemotherapy Diaries

I’ve written many of these Chemotherapy Diaries posts now, so I have an established process. I tend to write 2 per cycle. The first one is usually easy as I write it straight after treatment day and have a lot to say because this is the most eventful day in the 2-week chemotherapy cycle. Then, in week 2, I try to write another post. My process here is to read back the week 1 blog post and get a feel for the vibe. I then square this off against how the rest of the cycle has felt, and that sets my tone for the new blog post. Today, I read the last one back, and I think the tone is staying the same, which should be a good thing. The problem is that I feel like there is more to instinctively write about when I read back and feel very differently from the original post. So, if you get to the end of this post and think “wait, did he speak about chemotherapy in this post?” Probably not… chemotherapy has been, sort of, fine, dare I say it.

There has been 1 stand out symptom this cycle – mouth ulcers. Usually, I may get 1 or 2 in a cycle and, although uncomfortable, they are manageable. I have some special mouth wash issued by the hospital, which burns your mouth and then leaves it feeling very numb. When faced with standard mouth ulcers, it has been very effective at relieving pain. My mouth ulcers were King Kong-ian this time, though. Not only were they large, but they were also right at the back of my tongue on both sides; the perfect spot to consistently and very, VERY painfully catch on my teeth. They wreaked havoc in my mouth from Thursday in week 1. It was only on Monday that I started to get any relief from them, and it was welcomed with open arms. Before that, I had been through every stage of grief about 3 times with them. Then I had a harrowing experience with some chilli oil.

Sunday night, I was feeling good. I’d had a lovely weekend, seeing friends visiting me from London and enjoying myself (despite the mouth ulcers). I had spent Sunday afternoon out with Anna and my friend Cam, having a roast dinner in a restaurant and relaxing. The whole thing lulled me into a false sense of security that I had a normal life. Scanning around for recipes to make Sunday night, I set my eyes on a coconut and lime potato gratin from Ottolgenhi’s Flavour cookbook (a fantastic cookbook, by the way – I really recommend it for anyone looking for impressive vegetarian recipes). As is standard with this cookbook, it took a good 2.5 hours to make; the recipes are always worth it, even when they have rogue ingredients that require a trip to your local Amazon store. By the time I came to eat it, I was absolutely starving and ready to reap the fruits of my labour.

I was about to find out that I am not as clever as I think I am, which may not surprise my friends and family reading this. The recipe requires you to make your own chilli and garlic oil by frying red chilli, garlic and some spices in oil. The instruction is to do this with 150ml of oil, use around 60ml of it for the recipe and save the rest for other things. “I’m only going to do 60ml of oil and not 150ml,” I said to myself, feeling like I’d broken out of the matrix. I didn’t think about how much more intense the chilli heat would be when a lower volume of oil was used. As I ate the final product and felt good about it, I realised after about 3 minutes that my tongue and, specifically, my ulcers, felt like I had dowsed them in petrol and was chowing down on a plate of lit matches. I tried water, vanilla yoghurt, milk, mouthwash, more water and repeated for about 20 minutes before things started to feel stable again. It was a stark reminder that chemotherapy is king and that my happiness is a slave to it. I had some toast with jam on, sulked and went to bed.

Besides the mouth ulcers, the cycle has been good since mid-way through week 1. Before that, it was still better than the average cycle, but I still felt tired and a little bit crap (a technical term used by the doctors). Week 2 has been particularly good, with me feeling better than ever. I baked my first Victoria Sponge cake for my friend Finch’s 30th birthday. As you can see below, my decorating skills are akin to a 5-year-olds art skill. That may actually be offensive to 5-year-olds. If there are any reading this feeling victimised, I apologise. Although the cake was really delicious, I did not realise what a pain in the arse they are to make. I had to add 6 eggs individually, whisking in between and alternating them with an additional tablespoon of flour. It was like a practical exam, something I hadn’t experienced since my driving test. I kept forgetting whether I had just done an egg or flour as I whisked and was getting flustered. So, despite it being delicious in flavour, I won’t be rushing to bake one again. The next time I can think of will be for my birthday, as it happens to be on a treatment day. There is nothing cooler than baking your own birthday cake to take to the chemotherapy ward, giving it to the nurses and reminding them that it is your birthday. Is it weird if I ask them for a slice and bring my own candles? Who cares, I’m doing it.

I also had another go at the oat, cranberry and nut cookies that I failed at last time. They turned out much better, but they finally proved that I am not a fan of pistachios and don’t care to admit it. They’re just pretty average, in my humble opinion. I also made some cranberry and chia flapjacks. Flapjacks are becoming my favourite thing to make for mornings before I go running. You just feel like they’re little buttery balls of energy. They’re probably helping me in my pursuit to put on weight too. All of the baking is probably helping out in that regard. Finch’s birthday cake definitely did – I’ve never used so much butter, sugar, cream and jam. You start to see why this stuff is bad for you when you bake it yourself. Ignorance is bliss; stay as ignorant as possible, especially if you have a sweet tooth.

Oat, Cranberry and Nut Cookies (Left) and Cranberry Chia Flapjacks (Right)

So I am walking towards the next treatment day feeling positive. The oncologist told me that exercise should help me cope better with the chemotherapy symptoms, so I will happily attribute this cycle being so good to the running and use that as an excuse to do lots more of it. I have another call with the oncologist tomorrow. During the last call, he said we would arrange the scan for the week of February 7th, but I have had a letter through from The Christie arranging the scan for February 28th. I assume this is probably because the team have decided to extend my chemotherapy to 6 months instead of 3. That means that the scan is less time-sensitive now, and so doing it slightly later is probably better for determining the next steps after I hit the 6-month mark in May. It will be good to confirm this with him, though, as I was surprised by it when I first opened the letter.

3 more months of chemotherapy give this series more longevity, which is good. Here’s hoping to have lots of uneventful cycles where I can talk more about baking than any of the horrible symptoms I am experiencing. My pessimistic side says this is unlikely to be the case, but you never know. Today I had my blood appointment at The Christie. All went well. The wait was just over an hour which is a little on the long side, but I try not to complain about such things. I am receiving world-class treatment and not paying a penny for any of it, a luxury that many don’t have. I then met the infamous Nigel, the main subject of my ‘Inspiring Stories from a Pancreatic Survivor‘ post. His lovely daughter Julie who introduced me to him, arranged for us to meet at a garden centre near their house. I managed to resist pressure from Anna to buy another plant whilst there. There isn’t any room left in our bedroom anyway – our window has already been turned into a conservatory. It was really lovely to finally meet them, and it was plenty of fun, as I knew it would be.

Anna’s Conservatory aka Our Bedroom Window

Finally, I absolutely smashed my 5K today. Up to now, I’ve been running them in about 35 minutes. I ran it in just under 30 minutes today, which is a huge improvement. I started running and just felt determined to push myself for some reason. Once you tap into that part of your brain, the rest is history. The next thing I knew, I was letting out a scream as I hit 30 minutes, stopping the activity on my watch and looking down to see 5.07km. It felt incredible and was totally worth the dirty looks I got from the elderly people across the road. I let out a big smile at them, and they probably thought I was a murderer, but I didn’t care. It was a celebration, and they were invited. Let’s hope the upward trend continues (in week 2 at least – I’m not expecting miracles during week 1).

My Pancreatic Cancer UK Top Came in Time for My 5K

4 thoughts on “A Pain in the Mouth

    1. Thank you! The birthday cake was very delicious actually (if I do say so myself). Anna has done a lovely job at creating a jungle in our window :). I managed my first 10K today too. It’s been a good week! Thank you for the comment. Take care, Dan

      Liked by 1 person

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