Jaw and neck cancer

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Hi all just an update after having my jaw bone removed and fibula from leg inserted in may I feel I’m doing well, although I’m into second week of radiotherapy and the effects are taking hold. I have a mouth full of ulcers can’t swallow too good as tongue is very swollen, neck starting to dry out and sore but I’m fighting.

the main worry for me is if I’ll ever eat properly again, I haven’t ate anything since June after trying puréed food in hospital, which made me throw up for two days after then anti nausea tablets stopped it. 

I have everything through my peg. It I’m getting so worried I’ll,never sit and eat anything again.i know it might take time but every smell of food gets me thinking I wish I could just eat something, I’m still cooking for my husband as he’s my rock, he feels guilty but it gives me something to do, we have a small dog rescue with our own dogs now so he looks after them,  it I feel a bit useless not being able to help. My leg is still healing and I’m not strong enough to stand the dogs jumping at me.

anyway just an update I’m still pushing through my kitchen looks like a pharmacy with so many drugs Joy

  • Hi...thanks for the update

    It's good to hear you're through the surgery. Now I think it's a day at a time to get through the RT. Concentrate on that for now.

    I had a mouth and throat full of ulcers from week 4 and couldn't swallow much for 8 weeks. I know that's a very much shorter time than you but at least I know how that feels.

    AND I know about the pharmacy...heavens we have so much of it. I had a drawer full and a chart on the kitchen wall to make sense of when I should be taking what.

    Are you doing exercises to keep your swallowing muscles strong? That really important. 

    You're not useless. You are in the middle of an awful treatment so be kind to yourself

    Hugs

    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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  • Hello there, good to hear from you.  Not surprised the hospital puréed meals turned your stomach, they did me - so much better when I could purée my own meals at home.  Enjoy the company of your dogs but do protect your leg from them, although my leg has healed smashing I am still well aware it is still a tender area and it being knocked would not be good. You’re doing well, you will eat again, believe me!

    take care

    June

  • Hi Well done on getting through surgery. Radiotherapy take one day at a time and as Dani says  make sure yiu do keep up with swallow exercises I still do mine even at 5 years I do them daily without even realising most m days Indo believe doing those did help me regain the ability to eat. During treatment I did them in the car in way ti sessions. 
    You will eat again it can take time as for suckers ask for gelclair to be prescribed it does help. I had a spreadsheet for meds at ine point I think I had more medication than boots the chemist. 
    Rinsing with salt water helps as well 1 liter water with teaspoon of salt and baking powder helps as well. 
    If yiu getbthe dreaded mucus site come dry ginger ir soda water as an help disperse the mucus. 
    Keep in touch you’ll get there it’s a marathon remember not a sprint. 
    Hazel x

    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/

  • Thanks for info dani x I’m hoping I just move on and I can look back at the worst year ever x Hearts

  • Hi June nice to hear from you  I’ll keep in touch let you know how I’m doing at moment everything seems so hard but like you all I’ll get through and pray I’m cured at end x Kissing heart