Ulcers, Ulcers, Ulcers

The Chemotherapy Diaries

The last Chemotherapy Diaries post had a sombre feel, didn’t it? I’m glad to report that I did cheer up. A few things helped along the way. My best friend Luke made the journey down from Huddersfield to visit me on Friday. I had a few friends come up from London too. The fantastic power-couple Robbie and Norah came to stay with me all weekend, and then Gary and Amy came to visit for the day on Saturday. It was a busy weekend, which was nice. I think I’ve perfected the Pineapple Upside Down cake finally; the latest one was delicious. It all helped take my mind off the annoying and persisting symptoms of chemotherapy.

Me, Amy and Gary out for lunch on Saturday

Week 1 of the cycle was challenging. For the first few days, I was getting a lot of sickness and struggling to sleep, despite being knackered. My body felt too hot all the time, and I kept getting a strange taste in my mouth after eating. It was a bit metallic, a bit something else disgusting that I can’t quite define. There is quite a strange thing that happens with me when I feel sick on chemotherapy. The anti-sickness tablet that they give you at the hospital is apparently quite strong; I think it works well to stop me from actually vomiting, but my body still wants to react to the things going on with it. As a result, I get these strange hiccup type reactions after eating where I worry I am about to throw up but never do. It is always a disconcerting experience, I’m sure it’ll catch me off guard, and I will vomit eventually.

Those symptoms seemed to die down by about Thursday. Just in time for the mouth ulcers and the swollen tongue to waltz back into the frame. Why, oh why is this becoming a regular thing? I feel bad complaining about them because they sound like a minor thing, but it is anything but minor when it affects my ability to do trivial activities such as eat, speak and apparently breathe. “How has it affected your ability to breathe?” I hear you ask. Well, cynic, prepare yourself for a lesson in chemotherapy in the form of a story.

My best friend Luke surprised me with this Homebound jumper, the band that inspired the blog’s name

I went to the dentist to have a hygiene appointment on Friday afternoon. Shortly after arriving, the dentist beckoned me into her office from the waiting room.

“Any health issues you need to inform me of?” Quite an innocent question, usually.

“Well, I have pancreatic cancer and am on chemotherapy. My mouth is currently full of ulcers,” I said, only just realising that this may be a problem when attending a dentist appointment consisting of pocky tools being forced in your mouth at all sorts of awkward angles. She was looking concerned.

“Has your oncology team told you that you’re allowed to attend dentist appointments? It’s common that they tell you to avoid them whilst on chemotherapy.” She knew her stuff. I was in trouble.

“Well, they haven’t told me not to attend dental appointments.” I felt stupid saying it, which probably means it was a very stupid thing to say. I assume that subjects are usually advised not to attend dental appointments on chemotherapy for a few reasons. Firstly, the most significant risk whilst on chemotherapy is getting an infection. The drugs significantly impact your bodies ability to fight them, and you find yourself getting ill much more regularly. For example, my throat is constantly hurting at the minute, especially in week 1 of the cycle. A simple infection can be fatal on chemotherapy. Secondly, the aforementioned ulcers in your mouth, making a routine hygiene appointment feel like 30 minutes in Guantanamo Bay. I am assuming here, though. They seem like logical assumptions to me. I tried to move the conversation on quickly, so she didn’t have a chance to defer the appointment. I really wanted my teeth cleaned as I had been using Corsodyl mouthwash regularly and had staining on my teeth as a result. What I hadn’t realised about Corsodyl was that it is a very strong mouthwash and shouldn’t be used regularly. The dentist had informed me of this a few months ago in another appointment when I had complained that my teeth didn’t look as white as they used to. I had since stopped using it, but the stains remained.

She agreed to go ahead anyway but would not do as deep a clean as usual. Upon inspecting my mouth, she conceded that it was very swollen in a few places. I told her that I would still like to go ahead, and we did. It was bloody painful. Each time there was a stab of pain, I reminded myself that she had warned me and that I’d been the one playing big boy, saying it was fine. My teeth look lovely now, but I fought for it.

Obviously, the appointment irritated my mouth even more. I should have known that the trained professional would be a more reliable source of information than the idiot who wanted his teeth to look slightly nicer against all warnings. That night, I cleaned my teeth as usual. The toothpaste was burning my mouth, but this wasn’t a new thing for me at the minute. My tongue is regularly swollen to this extent during the first weekend after chemotherapy. However, this time, it was as if I had poured chilli oil over my toothbrush instead of water, then started brushing directly on my tongue. I quickly stopped when I realised, but it was too late. What then happened for 10 minutes was that every time I breathed in, my tongue felt like it had been stripped of skin and dipped in vinegar. I sat in bed, trying not to breathe for a while. The ulcers were already making it painful to talk and eat; why wouldn’t they make it painful to just, exist?

Saturday night it was my friend Finch’s 30th birthday party. He hired a room at the back of a nice looking pub/restaurant. I’m not sure how many people were invited; I think it was about 50, maybe slightly more. I said I’d go along for the first hour or so. Covid is still a big problem for me because it can make me really ill and because it will delay my treatment schedule if I catch it. I wanted to go along for a bit, though. It’s the first large social event I have been to since being diagnosed, and I wanted to see how it felt. Unfortunately, I think it proved that it is difficult to attend such things on chemotherapy. Not only because of the physical symptoms but also because of the mental side of things. My mind was playing devil’s advocate as I stood in the busy room.

Firstly, there was the fact that I felt a little out of place. I have cancer, and I’m on chemotherapy; they aren’t images you usually associate with a bar full of people having fun and getting hammered. Then there is the fact that I felt like a social pariah who had forgotten how to have a normal conversation. People don’t really want to talk about cancer when they’re trying to have fun, and I don’t really want them to have to either. I tried to avoid the topic, but I had a sense of being the elephant in the room at times, and I didn’t really enjoy it. Of course, part of this is me projecting. I’m worried that people are worried about how to interact with me, which affects my behaviour. It doesn’t help that we have also spent 2 years in and out of lockdowns, so everyone’s social lives have been restrained for a while now. We’re all out of practice with seeing people and enjoying ourselves.

I left the party after 2 hours, but I spent the last hour standing outside in the smoking area, in the rain and the cold. I was getting paranoid about Covid, and the room was very loud and warm. My throat was hurting, and I was starting to feel nauseous. Outside was nice, and I spent it catching up with a few people I hadn’t seen in a long time, alongside hanging out with friends and family that were also there. I’m glad I went, but I think it’s a lesson learnt about where the boundaries are in my current situation.

When I got home, I checked my email and was surprised to read that the short story I submitted to a competition had been shortlisted, meaning it will be published! It may even be 1 of the 3 winners they are selecting, but they haven’t announced them yet. The email stated that there had been over 700 entries. It felt really good, and it’s motivated me to write a lot more outside of the blog. I started writing a short novel adaptation of The Road to Diagnosis today that I may send to publishers, but we’ll see how it turns out.

The Run 40 campaign has also had a fantastic week. In fact, that is a bit of an understatement. The total raised is over £6,000 now. It is totally unbelievable. I’ve run 38 of the 40 miles, so I should be able to get in a final 2 before the end of February… I’ve pushed myself a lot recently with it. The donations keep humbling me, and I feel that the only thing I can do to show my appreciation is to push harder on the miles. I’ve also been contacted by the local paper, The Chronicle, who are writing a piece on the fundraiser. I’ll share it on here as soon as it has been released. It will be interesting to see if it yields more donations for the campaign too. Hopefully, it does!

I’m debating whether I should raise the target again or whether I just take the win and accept anything above it as an incredible bonus. My friend Will recently donated £30 more (he had already donated £20 a while ago) to the fundraiser. He saw it was near the target, only realising afterwards that I keep increasing it as it is achieved. Sorry for misleading you, Will, but it is going to a good cause, so stop being a tight arse and donate some more when I inevitably raise it again, please! But on a more serious note, thank you to everyone who has donated and made it such a special fundraiser! I’ve been contacted by Pancreatic Cancer UK a few times, and they are astounded at the amount raised, as am I.

As of today, the mouth ulcers seem to have finally cleared up, and I’m feeling good. I randomly got a nosebleed today, which is very uncommon for me. I can’t remember if it has ever happened to me before, actually, but I assume it must have at some point. Earlier today, as I set out on my 5-mile run, I had a car beep at me, with the driver enthusiastically waving. I couldn’t see who it was as there was a glare on their windscreen. I waved back and smiled, thinking it may have been an encouraging stranger who had seen me in one of the shared Facebook posts. Then, this afternoon, I received a lovely card through the door informing me that it was Gaywin Dayson, a keen reader of the blog and mum of my friend Em. What a lovely, lovely surprise. Thank you so much, Gaywin – I love the card very much. It will be going on my card wall alongside many other charming cards sent to me over the past few months.

Gaywin’s card to me, featuring little Lucy in a red jumper

5 thoughts on “Ulcers, Ulcers, Ulcers

  1. Lya Sharpley-Hixon says:

    US dentist here! May I ask what kind of products are you using (toothpaste, mouthwash, etc.)? There are definitely some gentler brands that I recommend to patients undergoing chemo so I just wanted to check!

    Liked by 1 person

    1. Hey Lya. Thanks for commenting! The toothpaste I have been using is Sensodyne Pronamel. The mouthwash is issued by the hospital and is called Difflam. I don’t quite understand if I am getting them all of a sudden because of something dietary or if it is unavoidable. For the first 4 cycles I didn’t get them anything like to this extent, it’s very strange. When I’ve raised it with the oncologist though, they seem to think it’s just one of those things that happen when you’re on chemotherapy!

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  2. Lya Sharpley-Hixon says:

    Hi! Happy to be here! I just lost my mom to pancreatic cancer 2 months ago and I believe I found your blog through PanCan. So just know that you have complete strangers around the world supporting you and wishing the best outcomes for your treatment!

    I usually have my patients on chemo try using Closys products–it looks like there is a similar product in the UK called Ultradex. They should have a toothpaste and a mouthwash that are very gentle on oral tissues. Sensodyne Pronamel is a gentle paste as well, so that is a good choice. I have had some good luck with the Closys products, so I wanted to give that a mention. They usually either have a gentle flavoring or no flavor which can help with comfort.

    I will usually also prescribe something we call “magic mouthwash” here–it is usually a mixture of viscous lidocaine, an antihistamine and an antacid. I don’t know if there is something similar in the UK, but having that anesthetic in there helps to soothe ulcers while they are healing. Something to consider with your dentist/care team! There may not be much hope for preventing the ulcers, but I’m hoping you find something to provide you more relief!

    Liked by 1 person

    1. Ah I’m really sorry about your mum, that’s heartbreaking. I hope you and your family are doing ok. It’s a horrible disease, unfortunately.

      Thank you so much for this advice! I think the Sensodyne flavouring is what is giving me issues currently, so the gentle flavouring sounds much better.

      Yes I’ll speak to the hospital about it and see if there is anything they can give me which is a bit more serious. The numbing is helpful but the ulcers seem to take 5 odd days to go still so I’d like something that fights them a little more. Perhaps that is just normal if you’re on chemotherapy though 🤷🏼‍♂️. Thanks again for the tips – it’s really helpful!

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  3. Aw, this was an exceptionally good post. Taking the time and actual effort to create a really good article… but what can I say… I hesitate a lot and never manage to get nearly anything done.

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