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Tonsil cancer

Itsbono
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Hi everyone I wanted to pick your brains on how long taste takes to come back? I can pick up on a few things but can't taste most foods. I had a neck dissection in October to remove tumours, both tonsils removed and a sweep on the left one, surgery healed well and still had taste and then 2 weeks into 7 of chemo-radiotherapy my taste went. I'm now 16 days on from finishing treatment and I want to eat but struggling with having no taste and the textures feel weird! Any tips? Thanks in advance for  anything that may work and good luck on your journey x

  • Hi Itsbono and welcome to Cancer Chat.

    We have a few tips for dealing with changes in taste on our website just here but I also wanted to put you in touch with one of lovely regulars [@RadioactiveRaz]‍. She's come through her tonsil cancer journey and knows of the difficulties that can arise in the taste department after treatment so hopefully she'll pop by when she can to offer her support and advice.

    You can also have a chat with one of our cancer nurses about this if you like on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

    I hope things start to improve soon.

    Kind regards,

    Steph, Cancer Chat Moderator 

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    Hi Itsbono,

    This is Hazel I am 17 month post radiotherapy for tonsil cancer with affected lymph nodes , I didn’t have neck dissection justb35 radiotherapy sessions and 2 chemotherapy.

    i have a blog detailing my experiences www.radioactiveraz.wordpress.com which I hope may help you.

    i was relatively lucky as never totally list radte , I know 16 days may seem like forever but in real terms you are still  in the early stages of re I very your body is still full of radiation and chemo which has to slowly leech out a bit like an oil filled radiator if that makes sense l best advise i can give you is drink as much water has yiu can which does help l Taste in most people does come back , even now I have days where nit everything always taste so like it should and have a metallic taste ,but it does get better. If yiu are suffering from lack of saliva as well that won’t helo , try and sip warm drinks to aid food being swallowed. I even now don’t leave the house without my sugar free gum and water bottle .

    good luck

    Hazel 

     

  • Offline in reply to RadioactiveRaz

    Hi, I've been reading your blog and its certainly helped, I'm now 3 months post treatment and and my pet ct with an all clear, happy days! Still struggling with food but managing to get it down. Taste is still really bad and textures still feel weird,  sometimes I can eat, sometimes I cant and have to make myself, I dont get hungry as much but put that down to lack of enjoyment when eating. Eating has become more of a necessity than something to look forward to. On a plus side I'm feeling stronger and fitter than I expected and apart from a bad case of lymphedema( wow does that get stiff and sore!) And nerve pain due to surgery all is going well. I'd certainly rather have a dodgy shoulder for life than cancer! In all the treatment and service I got from the hospital was great and I cant thank them enough for keeping me with us. Hoping the taste situation will improve but still early days! Hope everyone is well. Lee

  • Offline in reply to Itsbono

    Hi Lee welcome to the next stages recovery. Yes you are right for a long time eating is eat to live as opposed to live to eat. I am now 20 month post radiotherapy and for tea yesterday I had a rib eye steak rare peas home made deep fat fryer chips wonderful and pepper sauce .Nite I said rate I find it much easier plus things not yiu woukd think ok ie casseroles I find the meat no matter how long and slowly cooked too fiberous .But in an eat crisps plain mild curry so life pretty good. We are in Spain again in lockdown heading for long drive through Spain ans  france  . 

    Hope this helps, your taste will eventually return as u know I was lucky never lost taste but most do and everyone gets most of it back so onwards and upwards. Good news re pet ct scan as well ,presume your ent appointments will still go ahead mine are telephone consultation for next few months unless I have any problems touchnwood everything is fine keep in touch 

    Hazel l x

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