4 months post treatment

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SCC in right tonsil (t1, n1, m0) diagnosed August 2020. TORS to remove offending tonsil plus neck dissection October. 30 fractions of RT and 5 sessions of Cisplatin (x1) and Carboplatin (x4) ended early January.

Well, 4 months on and things are still improving. My sense of taste remains pretty good and my saliva has improved so my eating is getting back towards normal (despite the occasional difficulty with dry things).  I’m now on a diet, having found it hard to give up my high calorie regime during and immediately after treatment. (How I miss that double cream!) My energy levels are back to normal and I’m jogging  and cycling like before this all started.

I do daily exercises to keep my neck as supple as possible but the area around the dissection remains tender, and often quite itchy, so I’m still lathering it in BioOil to keep it moisturised. My daily shoulder and neck exercises are keeping my right arm and shoulder in pretty good working order and functioning almost normally. The Lymphodema under my chin is gradually reducing thanks to regular massage and occasional wearing of a Hereford Collar.

My throat feels pretty normal now but my gum is still a little raw where my tongue joins it. (Not painful, it just feels raw to my tongue. Hard to describe.) This has never properly healed and I’m just wondering if it’s going to be my new normal. I’m going to make up some more salt and bicarb mouthwash today to see if that will improve things. My neck still feels swollen but looks quite normal in the mirror, oddly.

I had a 4 month baseline MRI scan on Monday. The machine I had this time had a small mirror above my face so I could see down the tunnel, past my legs and into the room. This simple device made a HUGE difference to my feeling of being enclosed and I almost enjoyed the 20 minutes I was in there! I saw my oncologist on Tuesday who didn’t want to examine me but ‘would rather wait for the scan results’. So pretty much a wasted journey, although he did confirm that the occasional tingling in my spine and legs was Lerhmitte’s Sign. He’s going to phone me with the results of the scan next week.

I’ve still had no dental input, which is worrying as I have an increasingly sensitive molar (not the RT side) which I need to get sorted.

Otherwise all seems fine. I’m a little anxious about getting the scan results but then I’ve found the waiting around for results by far the hardest aspect of this whole nightmare.

With best wishes to fellow travellers. May your recoveries continue unabated. M

  • Great post as ever 

    Glad you’ve added it to your blog. I signpost lots of people there. Xx

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • Cheers Dani. It’s getting a bit long I admit, but I find writing about it quite therapeutic. Hope you’re well. M

  • I’m good. Thanks. Keep it going it’s a great resource for “beginners” 

    xx

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi Good post as usual clear and concise.

    Re dentist give them a call they should be able to at least see you. I’ve had 3 dental appointment s since December ok I’ve had to pay via joining a private dental plan but as I want to be seen every 3 month I found it the only way. It’s still my n h s dentist if I need any treatment that reverts to n h s prices. But in meantime I get 4 visits a year and hubby gets 2 .  It’s called denplan might be worth asking your dentist about it. I fear  because of covid there’s a long backlog of patients. this way  i get an appointment when I need one, R e your scan you’ve come this far please don’t stress about it..

    Hazel

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • FormerMember
    FormerMember

    Hi MarkEL, regarding the dentist, like most of us I underwent the dental check a week before the chemo/radiotherapy started and all was fine, but believe it or not the night before my treatment started I lost a large filling from a molar. So on Day 2 of treatment I was referred for an urgent appointment to the hospital Orthodontist where it was decided to remove the molar. The orthodontist then wrote to my NHS dentist advising them that as a H&N patient I should now be seen every 3 months but that any extractions or major work would need to be undertaken in hospital. They also stated that I should be prescribed Duraphat toothpaste and Fluorigard mouth wash for life. Since then I have had 3 routine checks (3 months apart) plus a filling and all at the normal NHS rates. 

    With regards Lymphoedema I know we’ve talked about me being lucky to be having sessions at a Lymphoedema clinic plus the Hereford collar and like you I am seeing improvement in my Turkey Gobbler Neck, and on Tuesday I am going to collect a compression garment called a “Partial Hood” which they’re wanting trialling as it’s a new product so I’ve agreed to be a volunteer. I’ll let you know how I get on. Keep up the exercises. 

    P.S. I’ve still got my Lhermitte’s too but it doesn’t bother me at all 

    Best wishes 

    Carol xx

  • And don’t forget to ask for a fluoride varnish every three months 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge
  • Hi MarkEL It sounds like you are steaming ahead on the exercise front which is great. I am doing my 3 mile walk most mornings which I think helps certainly mentally lol. Some doctor recommended exercise and  drinking loads of water helps with the lymphodema which I have also. Apparently it disappears after 6 months Hopefully. I really disliked one of those  scan machines as sounded like I was inside a broken washing machine, Your one sounded ok . Good luck with your results  . You can look forward to having a few real ales , Well deserved and all  lol.  I am saving myself lol plus probably not wise with my low white cells. I got a pet scan on monday week and suppose to be seeing the consultant on the Wednesday. All the Best Regards Min 

  • Thanks Carol. That’s really helpful Thumbsup

  • Thanks Min. I’ve tried some beer and wine and it tastes ok but I think it irritates my tonsil excision site so I’m giving it a rest.

    I hope that Wednesday goes well. We’ve come a long way between us! This hanging around for results sucks doesn’t it? And well done on the exercise front. I think it makes a real difference. M

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