Another 5-Yearer

Hi, and Happy New Year to you all in here. (It’s very hard to not make this sound too self-congratulatory, but here goes.)

It was 5 years ago yesterday that, aged 63, I finished off a full English breakfast of tonsillectomy and neck dissection, quickly followed by 6 weeks of chemo and radiotherapy. I finally climbed down off that monster of a Varian RT machine and on my way out decided to ring the bell - in front of just one other patient. (It was during Covid.  He filmed me doing it on my phone!) I left the hospital that afternoon with very mixed feelings - delighted it was over but nervous about the future. 

I am of course grateful to be one of the vast majority that survive this often brutal journey.  (Some get a little precious about calling it a ‘journey’, but I make no excuses, for that is what it has been for me.) It was a long and often frustrating recovery.  Slow, certainly not linear and scary at times.  Over the past 5 years I’ve had more lumps, bumps, sores and dark nights of the soul than I care to remember but I’ve tried to keep calm and they’ve all come to nothing.  Thankfully they are getting fewer and fewer.  I’ve seen the NHS at its absolute best and have been fortunate to have the most incredible surgeon who has always made me feel that I’m the only patient on her list. Although I’m now formally discharged she assures me that if I have any worries I can just ring her and she’ll see me. I can’t ask more than that. 

So, 5 years on and I think that life is as pretty much back to as normal as it’s going to get. My neck still gets maddeningly stiff from time to time and my tonsil site still flares up for various reasons, usually involving food or drink, but this has become more and more rare. My taste is almost back to normal, although the taste of meat is not what it was.  My saliva is still a bit patchy which makes swallowing starchy food quite a challenge so I never eat without water to hand, (having had a nasty incident eating a pizza in a pub one time). I wake for a sip of water several times some nights. Some nights none. My shoulder blade and neck is still 80% numb and my beard patchy, but these are trivial things and apart from that things are good. 

I try extra hard to keep fit and to not drink too much. Managing the sun on my neck is an almost daily job.  As my treatment was on the right side this can make driving an especial challenge as any prolonged sunshine makes it seriously itchy.  I’ve tried snoods, hats, scarves, creams, sticks, roll-ons and sprays all to various effect. I’m still experimenting - most lately with SPF 50 moisturiser, which is looking promising.  Also, I've found a very cancer-savvy, and quite bossy, dentist who I see regularly.  Although I was never exactly neglectful before, he has completely revised any concept I had of dental hygiene and I take the care of my teeth far more seriously than I ever did before. It’s important, and not just for your teeth.

Some of you will be awaiting results, some just setting out on your treatment and some in recovery.  As everyone in here who’s been through it will tell you, it’s bloody hard.  Frustratingly, things sometimes appear to go backwards rather than forwards and sometimes you might feel that you can’t go on. But you can, and treatments are evolving at such a pace that the outlook is improving all the time. So hang in there and the chances are you’ll be here giving us all a 5 year update before you know it. 

All the very best for 2026 and beyond. 

M  (T1, N1, M0 - autumn 2020)

ps special wishes to Hazel, Danni, John, Ray, Sophie and others who are still here giving support and who were such a great help to me in those early days.