Week 20: What’s it like, 3 months into recovery…

My radiation treatment for head and neck cancer, caused by the HPV16 virus, ended on 1st May 2020, so three months later, there’s no better time to record how recovery has been progressing, both for my own memory in the future, and for others going through similar treatment.

Perhaps the most surprising thing is ‘same-old, same-old’ since my post on Early Side-Effects. Xerostomia (low saliva production) is probably the biggest issue, as this still affects my day-to-day life - who knew that eating was so important ;-) It’s not so much that I still need to drink water with almost every mouthful of food so that I can swallow it down, but having no saliva means that the receptors on my tongue are constantly exposed. So eating food can often become painful during and just after every meal. And any kind of food with heat (eg black pepper, chilli) is inedible. However, this is all doable when eating at home, and I’ve adjusted well.

But eating out is really problematic. For example, I went to Leon last week, and the sandwich I had, had chilli sauce (not disclosed) which made it inedible (😭). I followed this up with a regular cheese sandwich, but it took me about 20 minutes to eat, which is fine on one hand, but not when you have to eat outside as all eating areas are closed off due to Covid! And at the weekend, David ordered in this amazing meal from Shedletsky’s, but once again, who knew that chilli was such a popular condiment 🥵. Which for one who used to put Sriracha sauce onto everything from pasta to sandwiches, this is a bit of a disaster!!

I got my gastrostomy tube out at the end of June, which took literally seconds as the nurse just pulled it out. And it wasn’t as gross as I thought it would be, and it certainly wasn’t sore. So that means I was able to start back on my gym routine properly, albeit from home. My weight-loss has stopped, and I’ve now topped out at 57kg, or 9 stone. This I can live with for a while, as it's only 4kg lower that my normal weight, and I know that once I build muscle again it will go up. To build muscle, I’ve also started to do weekly 30-minute sessions with my long-time PT Luke Grainger (via Zoom of course) and it's great to hear his infectious enthusiasm again!

I still get fatigued, but this is much, much better than it was. I want to complain about my running and how it never feels like it’s improving, but when I look back at my progress, it is. I did a 12k run two weeks ago, and just yesterday, a slow 10k somehow morphed into a half-marathon distance.

So actually, even just by writing this, obviously one of the biggest improvements since ending radiation therapy has been an increase in energy and building stamina for exercise. For those that have also had intensive radiation therapy, it does get better. Just slowly. Interestingly, mentally I'm also not back up to full speed yet. Most days I have one of two hour-long zoom meetings and weirdly they can really take it out of you. I'm managing to get some research done, and like most academics at the moment, am a bit fearful of what is going to happy when term starts, but that is still 2 months away.

Two new physiological developments include a tenderness in my neck, and lower vocal range. Part of the radiation treatment was to the cervical lymph nodes in my neck, as cancer had spread there from my right tonsil. Over the past six weeks I’ve noticed that in my neck I had some swelling develop, which was oedema, and now the glands feel swollen all the time. Along with this, my mouth also feels, well, just a bit weird, like it’s being cooked; my gums and inside of my lips and cheeks feel very tender all the time and still quick to ulcerate. I guess this is just the radiation therapy still working on certain cells at different stages.

I’ve also lost full vocal range, such that I really can’t hit any high notes at all, and my voice can have a tendency to break if I speak to much. Having said that, I spoke about LGBTQI+ diversity issues in STEMM at the online Systematics, Biogeography and Evolution conference last week, and my voice only broke once. David has shown me several exercises that I can do to reactivate and strengthen my vocal chords, which will be invaluable once I start to put all my lectures on-line for the upcoming academic session.

Finally, last Sunday I had my three-month MRI scan at the Royal London, to check whether the chemoradiation treatment has worked to eliminate the cancer from my body. I’ll find out in a couple of weeks time, but weirdly I’m not worried at all. The next blog post will be the result of that scan