Tonsil cancer - Update. Would love to hear from others

Good evening everyone it's Fooman, I have not left a post for a while. I have just completed  12 Radio sessions out of 30, and have also had 1 Chemo Sessions out of 2. I have lost my taste and my appetite has gone my mouth is  sore and hurts and everything tastes of cardbord. I.have also lost some weight. I have been feeling tied but having said all of that I don't  feel to bad. I have been using the protein drinks provided to keep my strength up. I tried some soup last night but could only manage a couple of spoon fulls. Regarding my weight I was over weight to be honest I am 6ft 2inch tall and at the start I weighed 15stone 7lbs I am now 15stone still a stone over weight correct weight of 14 stone. If any of you have some experience with tonsil cancer it would be much appreciated. I never asked my doctor the stage of my cancer, he just said it was treatable and with the type of Cancer I have they have a 90% success rate of cure. Keep positive everyone. Fooman keep it green.

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  • My husband is about to start his last week of radiotherapy, chemo finished last week. 
    He wasn't told what stage he was, but we found out as it was on the letter that is sent to his GP which you should of had a copy of. Then Dr Google came in to play! 
    but if your success rate is 90%, you have a great outcome. 
    My husband had a peg fitted which he hated but when his mouth got sore and he couldn't manage to eat and drink He was pleased he had it. He has lost some weight and is now having fortisip drinks down the peg  

    Chris 

  • Hey how are things ?


    need a bit of advice really  

    I can't seem to eat anything now everything and ever way I try it is just burning I've got a really bad cough due to covid which hasn't helped

    but was wondering what sort of things to eat that want burn I've not really eaten now for 4 days x

  • :cry:Chrissy I have tried literally everything even Farley I'm at my wits end I've not eating nothing today even my medication is burning my throat they said do meds gargle do numbing sprays then eat Ive tried all this but after like 5 mouthful the pain is unbearable am I being a baby ? Will have a look for hospital number I haven't seen my team due to covid missed 1 chemo but still had treatment late in day but it's broke me all the coughing :cry:

  • You are def not being a baby!! you've more than enough to put up with.

    Are you now negative for covid? 

    There is a help line at the bottom of this page if that helps. 
    Hopefully you can find phone numbers for your chemo unit. Should be always available. 
    Chrissy x 

  • Yes been negative for 2 days and Thankyou I think im going to ring them as im feeling. Awful 

    I hope hubby is ok x

  • Hubby is in slow recovery.

    Great that you are now Negative. 
     

    You look after yourself. 
    Please let me know how you get on 

    Chrissy x 

  • HunOh dear that's  .....  covid and cancer. How far into treatment are you I do know where you are  coming from inwas towards=end of week 3 when I just couldn't swallow. You can try poached eggs they tend to slip down, what I did was in the Monday see dietician and insisted  that a ng feedingbtube was put in. It was a lifesaver for me all my meds water and feed went via the tube. Intoo was given the med to help you swallow it didn't help. Are you on sufficient pain  killers don't codomol , oramorph etc.  you may need your  pain meds looking at as well.lTs a long slog , don't stress about missing chemo it's a top uo to the main treatment of radiotherapy . i was down for 3 x10 hour sessions but my last one I cancelled min conjunction with oncologist l

    Do try getting in touch with hospotaomit hard on a weekend. 
    You can also try the hugh calorie food supplements ensure or fortisip if yiu have them or supermarkets sell complan worth a try. Yiu need hydration and nutrition by any means you can.

    Good luck Hazel 
     

  • Aww bless you hazel im not on oramorphe yet as This  as really only happened since covid and I wasn't that bad but the cough is making things more sore now also gagging on supplements and being sick ( phobia as hit the roof ) (but I think that one thing good come out is it not so scared lol) so yes now I think a feeding tube it the next step Monday is my 5 week 10 treatments to go must say as Chrissy said it as gone quick 

    as for poached egg yes they were great but now even that is unbearable X
     

  • Poor you Kemp123 having to go through this whilst also having covid! This sounds truly awful. Are you managing to drink water? Another member suggested you ring our helpline and I just wanted to say that unfortunately it is closed over the weekend but our nurses will be back at 9am on Monday and the free number to ring is 0808 800 4040. However, it sounds like you may need to talk to a doctor now if you have not managed to eat for days especially as you mentioned you have also been sick. Try ringing your medical team at the hospital or if you can't get through to anyone over the weekend, do call 111 and explain your current situation to them.

    I hope you manage to speak to someone very soon and that you are able to eat again without any pain. 

    Lucie, Cancer Chat Moderator

  • Hi Angie please try to keep sipping water as much as it hurts. Yiu can also try gargles or swill round mouth dispersal aspirins and spit out don't try to swallow the aspirin,  as you'll be on enough meds. Yes ask for oramorph it does help. Don't be scared of ng tube it will serve you well . Try really really soggy weetabix not easy but yiu might manage them. As for the water try a straw and try bottled water instead of tap water. At one point I could onky drink slightly warm water weird I know. 
    good luck for next 2 weeks tgen remember treatment continues to work for a good few weeks afterward s so push for the n g tube let me know how yiu get in please. 
    Hazel x

  • Thanks for the advice Ive pretty tried and doing everything you have suggested yes very weird drinking warm water buts that me now  lol

    I was scared of tube at first but now I will do anything to get me through this last weeks

    I can cope with the pain drinking water but the rest is unbearable  I'm even now gagging up the mucus (think my phobia of being sick as gone haha ) 

    im sipping water all day I really think the covid as took it out of me X

    angie 

  • Hi Angie Caz fir the mucus c do you have a nebuliser if si use it up ti 6 times a day it helps. You can use plain boiled water you can interchange with saline. Some times it's our fingers in mouth and literally pull it out. I went through boxes of tissues. Yiu made me laugh re phobia ood being sick. 
    Ask hospital for loan if nebuliser or use a bowl of hot water and towel over head to steam it works as well just be careful as kniw one or 2 whi hsvr burnt themselves falling asleep with bowl of water. It's hard.  Good luck with n g tube you might need to be firm it even cry !!! I did both xxHazel 

Reply
  • Hi Angie Caz fir the mucus c do you have a nebuliser if si use it up ti 6 times a day it helps. You can use plain boiled water you can interchange with saline. Some times it's our fingers in mouth and literally pull it out. I went through boxes of tissues. Yiu made me laugh re phobia ood being sick. 
    Ask hospital for loan if nebuliser or use a bowl of hot water and towel over head to steam it works as well just be careful as kniw one or 2 whi hsvr burnt themselves falling asleep with bowl of water. It's hard.  Good luck with n g tube you might need to be firm it even cry !!! I did both xxHazel 

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