Week 7 post treatment. Slow but steady progress.

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I hope this might be helpful to anyone setting out on a similar journey to my own (tonsillar cancer, TORS removal of right tonsil with neck dissection followed by 30 fractions of R/T and concurrent Cisplatin x1 and Carboplatin x4.) Treatment ended on 2nd Jan 2021. All undertaken by an incredible team during the Covid crisis. 

This can seem a never ending rollercoaster of a journey with its ups and downs, and even seemingly going backwards at times, but it does improve. 

Well, it’s now 7 weeks since I finished treatment and things are definitely improving, albeit veeeery sloooowly. I had a good birthday on Wednesday and enjoyed very slimy tagliatelle with seafood and lots of sauce followed by THE most amazing and calorie-laden sherry trifle. My throat suffered a slight setback afterwards but it was well worth it! 

The ulceration around my excision site persists and got me down a bit later in the week. However Dani, Hazel, Linda and Trev gave me a talking to and I felt much better afterwards. Thanks chaps. 

I’ve reduced pain relief to paracetamol four times a day with the odd ibuprofen thrown in if things flare up. I’ve now stopped MST altogether. I was warned by my doc that painkillers could lessen the pain but not eliminate it, so the remaining soreness I am prepared put up with especially as it’s now tolerable rather than debilitating. When I look back even to just a couple of weeks ago there’s been a huge improvement, even though day to day progress has sometimes seemed to be almost static.

The pesky lymphodema beneath my chin still wibbles and wobbles about and shows little sign of shifting. I’ve found some drainage exercises to do (thanks Dani) so am religiously trying to stroke it away several times a day. One of the many drawbacks of Covid is not being able to attend a lymphodema clinic. Hey ho. Needs must, and it’s a very small price to pay. 

So overall at the end of week 7 post treatment I’m cautiously happy. The inside of my mouth and throat seems to change a little daily, with the odd little lumps and sores appearing and then disappearing. But my eating is getting better and my sleeping is improving, despite the ongoing dry mouth at night.

The sun is out, the birds are singing, the heating is no longer on full blast and I’m cautiously optimistic that I can see some light at the end of the tunnel. 

  • Wow, well done.  I think you're doing remarkably well - much better than I was at your stage.

    Yes, the odd sores that continue to come up are par for the course but it's very reassuring that you can feel things improving.

    And don't things seem that bit better with the sun out and signs of spring?

    All the best.

    Linda x

  • Well done on making week 7.  Slow but steady progress. 

    I am surprised they only too one tonsil.  My clinical team said they took both to avoid confusing clinicians later on in my life as I only had one!! Laughing

    We share a birthday although you have 365 days seniority on me.  Belated happy birthday.

    Peter
  • Yes Peter. I keep reading about people having both tonsils out and have no idea why I had only one of them done. Maybe TORS makes it take a lot longer (and they were very busy. I’ll always be grateful to them for finding the time. An amazing team!)

    I hope you had a good birthday on Wednesday. 

  • Marc

    Have a look? 
    I didn’t have any tonsils out but they have gone; both of them. 
    I can only presume RT aimed at the base of my tongue did for them too. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Marc 

    well done on week 7 . 1957 was a good year you are exactly one week older than me as well. Hope family sang the Beatles song to you in Wednesday 

    just keep an eye on pain levels 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Thanks Hazel. 1957 was a vintage year, to be sure Thumbsup

  • Well done MarkEL sounds like you are mending well . Happy belated Birthday . All The Best Regards Min 

  • Well done Marc, sounds as if you are making good steady progress, glad you enjoyed your birthday, the trifle sounded delish. You sure will see light at the end of the tunnel as i know only to well. Onwards and upwards for your continued recovery, all the best, take care.

                                                                                      Chris 

    Its sometimes not easy but its worth it ! 

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  • Thanks for the update, have to say you are doing better than i was at your stage, at 7 weeks post treatment i was reliant on fortisips still, and i was still on morphine. Gratz on the progress Slight smile

    Trev

  • Don’t get me wrong Trev, I’m still in some pain but it’s now less and, much more manageable. I can only think too that my RT was focused on a fairly small area around my right tonsil which is why I’ve been able to eat throughout, to varying degrees.  Although I’ve suffered the mucus, loss of taste, dry mouth, sore throat  etc, my eating has never been very badly affected. In fact the idea of a feeding tube was never discussed. I guess I’ve maybe had it easy in that respect.