One Year On (from t1, n1 HPV+ tonsil SCC)

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Saturday January 2nd 2021 - I wearily swung my legs over the side of the Varian IMRT table after the last of my 30 RT sessions.  This was truly a red-letter day in my treatment path which had also included a unilateral tonsillectomy and neck dissection along with 5 sessions of chemo.  My neck was blistered, I had zero sense of taste, my mouth was as dry as a camel’s armpit, my throat was raw, my mouth drooped and I was numb from my earlobe to my shoulder on my right hand side.   But boy did I ring that bell!

Once free of the treatment I had time to be anxious about the long list of potential side effects that could still affect me, and I had been warned by fellow travellers in here that I could expect things to get worse in the next two weeks. The 24/7 regime of drugs I was taking to stay ahead of the pain and to mitigate the side effects of the treatment, on top of the regular neck, arm, jaw, tongue and swallowing exercises, was grindingly relentless.  I would soon only be able to eat tasteless Ready Brek and custard smothered in double cream as I tried to avoid  losing weight.

One year on and I take half a Lansoprazole tablet each morning and massage my neck before I go to bed at night, to keep my neck supple and to check for lumps and bumps.  It’s still tight and stiff along the dissection scar, some fibrosis I imagine, but not painful any more.  I am just back from a 7k run and will take a 5k walk this afternoon. Trying to keep busy has been an incredibly important part of my therapy, and a few months ago I trained to be a part-time registrar. On New Year’s Eve I married 5 couples - each ceremony representing hope for, and faith in, the future. At the age of 64 I am busier than I’ve ever been since retirement, and what a godsend that’s been.  This evening I will be getting a slap up Chinese takeaway in and opening up some bubbles to celebrate today’s milestone with my family.  All of this would have been unimaginable this time last year.  Life is as back to normal as I ever could have hoped.

I am sorry if the above sounds a bit smug, but the reason I’m saying this is because I want to urge those of you just starting out or, maybe a few weeks past treatment, to keep faith and hang in there. I remember as if it was yesterday the sense of despair and hopelessness that could rear its head during those weeks pre, during and post-treatment. And all that interminable waiting. But our treatment has a fantastic record of success and things do heal, albeit slowly at times.

And, of course, I do realise that ‘one year in’ is still early doors.  I am by no means out of the woods yet.  I still have scary days and down days when I curse this awful disease, but the overall trajectory really is ‘onwards and upwards’, as folk in here are keen to say!

Indeed, all the guys in here have been an inspiration along the way, so do lean on them for support, do trust in your team and do keep planning enthusiastically for the future.

I wish you all a very healing and trouble free 2022. M

  • Mark

    Such a lovely post, and you've hit it spot on. Nothing smug. 3 months behind you, you have been an immense help through this. You put me to shame with the 7k run, I would blame the arthritis but I've never done one! So true though that keeping busy and fresh air spur along the recovery.

    Wishing you well!

    Gill 

  • Well said mark... when I was diagnosed 3 years ago ...I looked for the people on here to give me inspiration...in my darkest times I knew things would eventually improve as I read the stories on here.

    Now I have my life back... with a few bumps and scrapes mind...all that trauma was so worth it

    Chas

  • Well, the word ‘run’ might be a bit of a stretch Gill.  It’s more of a jog really! Blush

  • So pleased to hear that Chas. It’s good to hear you’re doing so well. I know what you mean about the bumps and scrapes! All part of the deal though, I think! Keep well.