Three weeks post-treatment - update and reflections.

It’s been three weeks since the end of my chemoradiotherapy and, whilst I stayed very quiet here (and everywhere) during treatment (I was concentrating on getting through it), it feels like a good point to share some reflections on the experience. There was plenty of good advice and testimony here that helped me after diagnosis, and I wanted to add to that.

As context, I was eventually diagnosed as T0 N2b MX post- an operation to remove a tonsil and scrape my tongue. My tumour was impossible to find but my neck lump was massive. Pretty standard treatment of 30 days of radiotherapy (65 Gy) and six rounds of cisplatin at Guy’s in London.

• Firstly, I have nothing but praise for all of the staff I met. Friendly despite me being the 15th person they’d seen that day, and inclusive - I’m a transgender person who is not that hard to spot despite a fair amount of work being done (!), and I was only misgendered twice, both times accidentally. That was welcome.
  
  
• On a practical level, I’m about 15 minutes from the hospital by train (plus walks at either end). Once I started getting worn out by treatment and concerned about infection, I started paying quite a lot to take an Uber each way every day. Finding out that I (or a driver) could get the congestion charge reimbursed was a big discovery, as it meant I could pay less each day to park right outside the Cancer Factory and eased my trips immensely. I think this applies to any London hospital - do enquire.
  
  
• Overall, the treatment was… fine. Looking at other patients, some were suffering, but whether by genetic luck, my area of treatment and / or also following (most) instructions*, I was never in significant discomfort. My mucous was controllable (especially with a nebuliser), and whilst I have very little saliva at the moment, it was manageable.
  
  
• Painkiller-wise, I used only paracetamol until part way through the third week when the nurse suggested I move to slow release morphine as a pre-emptive measure. I stopped using it a couple of weeks after treatment ended, am still using paracetamol before mealtimes but it’s not really necessary for me. I think I was lucky here, as there were ulcers but they did not cause me pain.
  
  
• In fact the worst pain I experienced was when I had a UTI at the end of the second week. That was a bit of a scary moment as I’d never experienced one before, what is that in my wee?, but I was sent off to the local A&E early one Sunday morning and things soon resolved themselves with antibiotics. And I was pleased to skip chemo the next day.
  
  
• I didn’t like chemo. It’s not bad, but it’s tedious and it was the thing that I felt most unsettled by - I mean, it’s chemo. I didn’t suffer any significant side-effects, aside from potentially some tinnitus, which meant they moved me to a different treatment in my final week.
  
  
• Diet-wise, all predictions re: taste being repellant were proven correct. I never stopped swallowing, drinking water or necking the fortisips, but have now lost 10kg from my starting weight. I have been amazed at how much of that has come from muscle rather than fat. Food was probably my biggest struggle, because I could still smell and desire food, but when I tasted it, I was at best very disappointed. Supermarkets were not always easy places to go to. When the extended family had an early Christmas dinner, I did have to sit alone in the kitchen, try to eat some, and have a little cry.
  
  
• This positive picture is not to say that there weren’t moments when I had big psychological wobbles, this feeling that I was being stripped down to my essence as a human being, peeled way like an onion or stripped to my core. That was temporary, but it was a moment. I had people to talk with about it. That helped. I did even less each day than I expected. I didn’t watch much TV, or read books, or browsed the internet. I listened to some audio books. Otherwise, I just… existed. 
  
  
• Financially it has been a bit challenging. I’m self-employed and decided to stop working once my diagnosis and treatment plan were clear, to get myself and my home ready for what could be a challenging treatment and a long recovery. I had savings, which have seen me through, but not having an income is challenging and I’m still concerned about finding and returning to work. I did say yes to a short term contract shortly before treatment, when I was on post-op steroids, but soon changed my mind when the steroids were finished!
  
  
• Treatment finished two days before Christmas, as you can imagine it was a quiet holiday period. My winter tan finally started flaking on Boxing Day, and I was really surprised to find the skin on my face went very dry about 10 days later. Fine now.
  
  
• Amazingly, my eating is slowly coming back. Initially cereal, then mac n cheese, and today I made (I made a meal!) a pretty rubbish chicken korma. And I ate it. Lots is still off the menu, including sugary things which is an incredible about-turn for someone who had a sweet tooth almost as large as Wonka’s Chief of Police. Perhaps that will be the positive legacy of cancer.

To end this long ramble, the best thing those who are about to experience treatment is that yes, it can be really hard, but there is no guarantee it will be. Prepare yourself for the worst, but don’t be surprised if it’s better. And you can control part of that.

* I don’t think I ever did the SLT’s swallowing etc. exercises. It was one thing too many for me. Let’s see if that comes back to haunt me later.