Weekly update tim(wanna play guitar)

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

  • Cheers Tim xx

    even I today over did it. So off to bed for an hour it’s all about pacing yourself. I’ve cycled over 75 k snd walked over 35 k  this week  so today  probably  over did it 5 hours at allotment. So I listened to my body. 
    yes at 3 years I am still getting improvements this  week lettuce has finally come back to Me. So don’t give up hope just keep on trying stuff 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer 

    T2N2NM equals tumour size 2-4 cm several affected lymph nodes 35 radiotherapy 2 chemotherapy sessions.

  • Hi Tim. My MRI was fine thanks. The words they used were ‘Very encouraging’ which is probably the most the are able to say at this stage. Different hospitals seem to have different policies on what they’re prepared to say. But hey, I’m happy with ‘Very encouraging’! 
    Wishing you a good week’s progress, even if it is slow! 

  • Thanks for your support Tim. I have always been active and hard working as many others have and fortunately never taken long term absences from work before. I was expecting to be like superwoman and be back on it quickly and underestimated the effect it would have on me, regardless of what the experts said.

     I have to accept that I am human after all and it is what it is. As long as I am getting better month on month then I have to accept it is what it is!!

    Still doesn’t stop me getting restless though lol. 6 weeks in the great scheme of things is nothing is it?

     I love my job though and once I am well enough to go back I think that will make me feel better as it will feel ‘normal’

    We will get there though I am sure

    Michelle xx

  • Hi Mark, Excellent news! They have to phrase it as a solicitor would. Onward and upward(slowly) Cheers. Tim

  • Hi Michelle, A monthly review of yourself is the best way. Initially, I was expecting changes to come every 24 hours but no way! Even weekly changes are imperceptible; sometimes things even get worse. But hang in there, I’m sure we’ll prevail. We might have to accept a new “normal” after 6 months.

    Best wishes. Tim xx

  • Hi Tim,

    My diagnosis was the same as yours and also the treatment, although they stuck an extra 3 radiotherapy onto mine so i got 33 blasts.

    I'm so relieved to see im not on my own with the longgggg recovery. My treatment finished end of Feb 21. My neck is still healing unfortunately. But the pain in my mouth is starting to get me down. What are you able tp eat? Im literally on semolina, readybrek, tapioca, custard. I have an ng tube but i want this out and im desperate to eat something that isnt cream coloured! I have a fentanyl patch for pain and take pregabalin too and paracetamol, but last night i resorted to take oxyvodone.

    I feel good in myself. I lost a lot of hair, which they think could be rare side effect of Cistplatin or long covid (had covid near the end of treatment and had to stay in hospital for 16 days). I csme out of hospital the dsy before my final radiotherapy.

    I feel as if ive had every side effect and a few extras in the book! Whats your mouth pain like?

    Any advice greatly appreciated. 

    Lisa

  • Oh Lisa...that all sounds horrible.You are on industrial strength analgesics. It must be down to the Covid 

    Have you tried the pureed foods that Wilshire Farm Foods do? That might be a start?

    Or you could make soup from practically anything, but I would avoid tomatoes. You can whizz up any combination of oven roasted veg into a thick tasty sludge.

    I hope you get to feel better soon

  • Hi lisa 

    it may not seem it but it’s still early days    Ok I had n g tube out at week 3 but was still on fairly soft foods. What are you lije with eggs ? I found poached eggs on well buttered crappy white bread toasted easy. Yes toasted it changes the texture making it easier. 
    Hang on in I’m almost 3 years snd there’s very little I can’t eat now.. 

    • your scan will be coming up hopefully around another 4-6 weeks time.  Keep in touch. Yes home made soups are a good start as well but deffo keep away from tomatoes. 
      Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer 

    T2N2NM equals tumour size 2-4 cm several affected lymph nodes 35 radiotherapy 2 chemotherapy sessions.

  • Hi Lisa, you poor thing having to suffer Covid as well! Fear not as your neck will heal. The external part of your neck can be nasty but will heal much quicker than the inside. At the moment, my mouth is bad but “just “ tolerable. I don’t have any sores but my tongue burns along with the roof of my mouth and it does get you down. I do a thorough clean and mouthwash with salt/bicarbonate mixture twice a day along with 2/3 daily brushing after meals with Biotene fluoride toothpaste. I’ve been told the radio part of the treatment is very punishing to the Pharynx and can take 6 to 12 months to come to settling.  I have to tell myself everyday to be patient, but hey, we all want to feel better when we wake up in the morning.

    As for eating, I try everything! Alas, spices, tomato,caffeine or tannin along with acidic fruit is a Nono unfortunately. I’ve also been told that after Chemoradiation you have new tissue in the pharynx area that is all new skin and has to weaned from gentle baby stuff (all dairy based) onto more adult type food. I’m at this stage now.

    This teatime though I had grilled trout with tarragon, mash potatoes with cream and butter along with asparagus, long stem broccoli and steamed carrots. All well cooked! It went down very easily as the trout is very soft. My taste buds just about recognised each flavour, but it was a hearty nutritious meal.  All I can suggest is try different things until you find something that is tolerable and enjoyable. You may have to think left field on this! 

    Another thing to try for breakfast is sausages with the skin taken off and fried lightly. I then get some thinly sliced bread with plenty of soft butter and some tomato sauce. You’ll find the tomato sauce not too acidic. Tinned tomatoes are killers though.

    I myself am not taking any painkillers at the moment, but I’ve always got them at the ready. I feel better at week 12 but I know I’ve got a good way to go as fatigue suddenly creeps up on you. My hair on the nape of my neck is just bum fluffy at the moment. It’d be nice if it grew back but I’m not holding my breath. I know is very different though for ladies as they take a lot of pride in their hair but I’m pretty sure with Cisplatin it does grow back. Again it’s the waiting game. Where I was treated they had a clinic with a nurse running a  specialised unit just for hair treatments, wigs, cutting and all things related. Maybe you could check if that facility exists in your area as it was an NHS clinic.

    Hope that helps a bit Lisa. You WILL get there.

    Will post again Friday. Best wishes and keep in touch  

    Tim x

  • Hi Tim. It’s more the radiotherapy that takes the hair it grows back fluffy but soon to be replaced with normal hair. Yes I treat my mouth for a good while as a baby’s if I wouldn’t give it to a toddler it didn’t pass my lips. A good  analogy xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer 

    T2N2NM equals tumour size 2-4 cm several affected lymph nodes 35 radiotherapy 2 chemotherapy sessions.