As an avid reader of this blog (which I am sure you are), you have probably noticed that I took a hiatus last week. It happened unexpectedly for me, too, so don’t feel cheated. I say ‘unexpectedly’ because I did not plan on having a few days off writing. Quite the opposite, actually. There were 2 posts that I had been working on, and I really liked both ideas. In fact, one of these posts is almost finished. Unfortunately, it panned out to be a bad cycle and a bad week for the world generally.
The ulcers were back in full force. They were actually back in a way that they hadn’t been before, and for an unprecedented amount of time. It all began around Tuesday, but they did not get particularly awful until around Thursday. I have had yellow sores running along the underside of my tongue like a train track. When Anna shined a light in my mouth, we also noticed sores on the top of my mouth. Ulcers were dotted all the way to the back of my tongue like landmines, and nothing seemed to persuade them to leave. I have been in a routine of washing my mouth out with saltwater, followed by the hospital issued Difflam mouthwash and finally, Anna would dry the ulcers with toilet paper and apply Iglu to them. Iglu is a gel that forms a protective layer over the ulcers – much more effective than the Bonjela I had been using. “Bonjela just slides straight off the ulcers. I wouldn’t waste your money,” said the pharmacist when I went to beg her for a miracle remedy on Friday morning. I was always suspicious of Bonjela. Every time I applied it, my finger seemed to leave my mouth with most of the gel still on it, and the little bit that left I would witness disappear as quickly as I applied it. I assumed that the split second it made contact with the ulcer was enough, but apparently not. You will no longer be receiving my custom, Bonjela. Buck your ideas up, sucker.
The past week has been tough for a lot of people all over the world. Suddenly, the prospect of war in Europe turned from a tiresome storyline repeated too often in video games to a reality. It was the way that I learnt of the news which bothered me so much. On Thursday, I woke up at 4am with incredible amounts of pain in my abdomen. I reached out for my water bottle and took a sip before digging for some painkillers in my bedside drawer. Once I had taken them, I knew that I would not get back to sleep if I tried right away, so I grabbed my phone. ‘Russia declares war on Ukraine’ read the latest notification as the screen lit up in front of my eyes.
For a few hours, I sat on my phone, looking for more information on the situation and trying to understand how concerning it was. We have learnt since that it is very concerning. That first day I sat reading the news all day, constantly refreshing the BBC news page and reading every new piece of information. This type of behaviour is very uncharacteristic of me. I actually make it my mission in life to avoid the news as much as possible. I do not want to be ignorant of world events, so I leave notifications of a few news outlets on. This means that I see headlines and can dive in where something seems interesting, but it mostly allows me to be aware of things going on without bogging myself down in the details. It is like walking a tightrope of not wanting to be totally ignorant of the world but not making it my obsession to worry about everything. I also try not to buy into the press’s sensationalisation of every bad event, which is what it feels like the news is more about these days. Unfortunately, this particular story was very hard to look away from.
It doesn’t take a clairvoyant to guess how my mood was for the rest of Thursday. The mind is powerful, working both for and against us in so many ways. My mind was solidly against me from then on and for the next few days. How this then impacted me physically was quite shocking, even to me. I really struggled to get out of bed for the rest of the day. I kept trying my normal techniques: find a recipe that excites me, look at the fundraiser for the Run 40 campaign, think about a blog post I wanted to write. Nothing worked. All I wanted to do was sit and worry about the end of the world. I watched videos of people in Ukraine panicking with their families and trying to think how on earth I’d react. I read stories of brave men pledging to resist against any amount of force thrown at them. I use the word ‘brave’ here, which I don’t use lightly. Any time I am told that I am brave for how I am coping with my diagnosis, I feel like an imposter. My situation was forced upon me entirely; these people are showing far more bravery than I could ever hope to muster. The whole thing paralysed me, as I am sure it did many others. I cannot even begin to imagine how it feels for the people of Ukraine or those in Russia who watch as their leader makes casual threats of nuclear war. The Russian public can’t even protest in fear of being arrested, or worse. It is a horrific situation.
Between my obsessive refreshing of the BBC updates page regarding the war, and the ulcers making everything incredibly painful, I just collapsed under the weight of it all. I’ve hardly cooked, I haven’t baked, I’ve been sleeping far more, and getting the energy to do anything has felt difficult. It wasn’t helped by the ulcers, which got so bad I could not allow my tongue to rest in its natural place because it was pushing the ones at the back against my teeth, making them bleed. Then there was the stress of knowing that the big week was finally coming – the first progress scan and results.
I arrived at The Christie hospital this morning at about 8:15 for my scan. The appointment was at 8:30. I made my way to department 11 – a place in the hospital I hadn’t been to before. Exciting. Turns out it is pretty much like the rest of the hospital; a waiting room with a reception for you to sign in, then a corridor off to the functional rooms. I registered with the receptionist and sat down. About 6 others were waiting. BBC News was blaring from the TV talking about war, death, refugees. Even the hospital isn’t safe – I thought they’d make it a haven away from real-world events. Don’t people have enough to deal with here? As I looked around, trying to distract myself from the doom-speak, I noticed that everyone in the room had the same brand plastic bottle they were drinking something from. I felt left out and wondered if they were all from the same contractor services, waiting to do some form of work there. They didn’t look like they were affiliated with each other, though. It puzzled me. One woman also had a small plastic cup of milk. Her hand was quivering as she lifted it to her mouth; I wondered how much lay on this scan for her. Just at that moment, my name was called out by a man in a white coat.
Of course, the bottles contained a solution that we had to drink for the scan. I know that should have been easy to guess, but I have had about 3 of these scans since falling ill and have never had to do this. Inwardly, I felt very stupid even considering that this wasn’t a standard procedure for the scan. Why would a group of clear strangers, all sitting apart and ranging in age from mid-30s to approximately 70 years old, be affiliated with each other just because they are drinking from the same branded sports bottle. What an idiot. The scan went fine, anyway. I didn’t expect anything else. Thursday is the big day when I receive the results. Saturday is then the next chemotherapy cycle, and also my birthday. I can’t say I’m excited for the week ahead, but I’m trying to be.
It is going to be a strange week, that’s for sure. The idea that the best possible news I could receive is confirmation that I will be getting a major operation is, in itself, intimidating. I haven’t fully considered what the worst-case scenario could be. I’m not sure I even know what the worst-case scenario could be. Cancer blindsides you like that – you think you understand something, and then you learn that your understanding was wrong. Even I say that and my oncologist told me that I was the “best informed patient she had ever met” after asking me what I knew about the situation with my tumour in our first meeting. I felt rather flattered. Maybe she says that to all the patients. I hope not.
I’m hoping to kick back into shape this week. Back to the baking, blogging and running. Even a little bit of birthdaying (once the chemotherapy treatment is over). I’ll do a full chemotherapy diaries post and delve into the full details of the last week there. I wanted to write a little bit about why I had been quiet and give an update on the scan today, as many people have messaged me about it! I’m also going to write a proper post about the Run 40 campaign, which is finishing today. I really wanted to get another run it before it was over but I just wasn’t up to it today, unfortunately.