Weekly update tim(wanna play guitar)

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Hi All,

Weekly update for Tim(wanna play guitar) Diagnosed Tonsillar cancer -right side T2N1M0 HPV +16 last year. Completed 6 x Chemo/Cisplatin + 30 rads on Friday 5/3/21.

I’m Week 12 Post treatment.

Apparently, week 12 is a watershed week, but while I feel better in myself, my symptoms are somewhat lagging behind!

Here’s the resume:

1.Fatigue: have had a couple of periods where I actually felt normal this week. Only having one poleaxe 24 hrs where I had barely any energy but seem to be out of it now. For those a few weeks behind me, the fatigue feeling is different from just tiredness; it doesn’t go away with rest but at least these event are less now.

2.Taste: again I feel I’m lagging behind. Sometimes it’s there for a few mouthfuls then it disappears. Sometimes it’s not there at all and sometimes it’s salty or tangy. Patience  Tim

3. Xerostomia: (dry mouth) sorry but nil progress on this aspect of recovery. Night time is the worst with little sips of milk/water thro’ the night interrupting sleep. I’ve booked an appointment with a Acupuncturist next week, will keep you posted.

4. Mind: not too bad. It is what it is . Dwelling on it is not good. I try to get on with the business of life as it gets your head in a different place.

5. Neuropathy: this varies day to day, but I do feel it is improving but very slowly.

6. Mouth: my poor old tongue seems to be taking a battering this week with anything with caffeine or tannins in attacks it and gives me lines and craters. Not sure if this is acid or just a normal reaction.

So, overall a small improvement but as 100% of H&N bloggers on this forum would agree-progress is sloooow!

Well that’s about it folks . Will post next week as I’m always hopeful of a major change for the good. I will post that news with a fanfare! As always, any comments, observations and advice always welcome.

Best wishes and have a happy heathy week.

Tim

  • HivTim 

    I know you might not think it but 12 weeks is early days. Yes it’s a turning point but none of us were clear if most things by 12 weeks. Dry mouth does take time as I type this am sat in back of friends motor home thinking Umm my mouth is dry so reach fir the water Fatigue  I can say in my case although I could do lots of things when the fatigue hit it hit and that’s up to 12 months for me even  now I take a 20 min re set most days. 
    what we all forget is how brutal the treatment was it takes our body time to adjust 

    you are doing well xx

    we await your update next week. Maybe give the tannins a miss  why not try hot chocolate.  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  

  • HivTim 

    I know you might not think it but 12 weeks is early days. Yes it’s a turning point but none of us were clear if most things by 12 weeks. Dry mouth does take time as I type this am sat in back of friends motor home thinking Umm my mouth is dry so reach fir the water Fatigue  I can say in my case although I could do lots of things when the fatigue hit it hit and that’s up to 12 months for me even  now I take a 20 min re set most days. 
    what we all forget is how brutal the treatment was it takes our body time to adjust 

    you are doing well xx

    we await your update next week. Maybe give the tannins a miss  why not try hot chocolate.  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  

  • Tim. Yes 12 weeks is a turning point in getting to grips with the world, escaping that black tunnel of immediate recovery and getting a little more light into your life

    BUT 

    2. Taste. My taste wasn’t anywhere near allowing me to properly enjoy food for a year. Strangely beer and  crisps were ok. Meat was a waste of time. I could eat it but after the first mouthful the only way I could identify it was by blowing the air in my mouth while I chewed up through my nose. 
    3. This really does take time and is never back to normal. Chewing gum and acupuncture help. 2 years on I still get drier days and days when I gave an awful taste in my mouth. You really do learn to live with it. 
    6. tongue issues are due to insufficient saliva so do keep an eye on thrush as well. 

    Slowly Slowly catchee monkey. You will get there. 

    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 Hazel,

    Many thanks for reply. You always somehow bring me back to reality(thank you) The radiation is indeed brutal and our bodies need time to deal with it. The tannins are out this week! Will keep you posted. 
    Best wishes. Tim XX

  • Hi Dani, good to hear from you! The Monkey analogy sums it up perfectly. Taste is strange concept that we all take for granted and what the hell happens when it’s taken away. Now if a beer tastes good with some crisps I think I’d better try some. I’ve always drank Ale and two nights ago I dreamt that someone poured me a pint of Ratliffe ale (a local brew, highly recommended even out of a bottle) I woke up with the taste still in my mouth and It was a joyful experience. So I’ll hang on to that thought that some things in life are worth waiting for.

    Best wishes. Tim XX

  • Hi Tim 

    you’re welcome it’s a case of been there done it got the t shirt scenario. Food will eventually give you pleasure last night  we had a b b q snd I managed a burnt sausage !! Progress Indeed. Not good for my health but hey ho. 
    Hazel xx

    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 for sharing Tim.

     I am 6 weeks post treatment and feel like I have turned a corner but still have a long road ahead.

    Fatigue is the thing that is getting to me the most, I am starting to feel really restless but have to just be patient.

    Good to hear that by week 12 you are doing so well even if you have further to go 

    Thanks

    Michelle

  • Hi Tim. 12 weeks was definitely a bit of a milestone for me. Although I didn’t feel ‘better’ exactly, there were some significant improvements at that stage.  It creeps up on you how suddenly, for example, you realise that something hasn’t hurt for the past few days or you haven’t woken in the night to drink water, but these things accumulate as you head towards your new normality. I’m 6 months post treatment next week and am feeling much much better, although I’ve accepted that I’m never going to be exactly as I was before this nightmare. My neck is still stiff and sore sometimes and my throat can feel rough now and again but hell, if this is to be my new normal I’ll be delighted! 
    Good luck. It sounds like you’re doing really well. 

  • Hi Michelle, Yes the road is long and the majority of us are impatient unfortunately!  A day doesn’t go bye where I have to say to myself “be patient Tim” think long term. Fatigue has hit me twice this week where I’ve just had to go and lye on the settee and that’s after 12 weeks! It unnerves me, and your mind is great at filling the gaps to make you think the worst. I’ve been told by my Consultant that the radiation impacts on your system for a good 6 months and possibly a year. Some bloggers on this forum can attest to improvements 3 years after treatment, so we’ve both got a good way to go but we’ll get there. If you need a boost to a flagging will, give me a shout! Other bloggers on here namely Beesuit and Radioraz(Dani and Hazel) are both experts with a wet fish slapped in your face. They both have great knowledge and nous of our common side effects-check out there stories, we’ll worth reading.

    Best wishes. Tim x

  • Hi Mark,

    Good to hear from you. I’m so glad you’re 6 months out and feeling much better. I find that uplifting and gives me hope. “Nightmare” is not a strong enough description for me. I’d certainly add some Anglo Saxon expletives to it! But I know exactly what you mean and what you’ve been through. I’m familiar with the stiff neck, I believe it’s because we shut down our muscles after the treatment onslaught. I’m sure you’ll come out the other side.

    I forgot to check with you about your MRI. Is there anything to report?  I don’t get my check until June 7 with results on June 18

    Best wishes. Tim