Anyone else no longer able to eat/drink?

FormerMember
FormerMember
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Hi everyone, 

My Dad had cancer of the tongue and jaw four years ago now. He's still cancer free and doing well despite his initial poor prognosis, for which we're really grateful. However his surgery was very extensive and he never regained the ability to eat and drink and fully relies on a peg feeding tube in his stomach.

It seems quite late posting on here and I wish I'd reached out sooner but better late than never. 

I wondered if there were many others out there like him, and whether you have any tips for him or myself in continuing to support him? 

  • I know is in your dad's position kate and maybe a few others, sure you'll get some help soon.

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    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • FormerMember
    FormerMember in reply to MikeO

    Thank you Mike :)

  • FormerMember
    FormerMember

    try a little food through the mouth rinsed down with water,just keep doing that my friend,i know ive been there,and the food doesn,t taste good but after a while everything gets its own uneque taste sorry bout spelling 

  • Good evening Kate93, i have had very similar to your dad and rely on my Peg for feeding, im now 12 years cancer-free. Fortunately, i can still drink thin liquids water, coffee, tea etc although i can only take it a sip at a time as my swallowing is not very good due to damage to nerves and muscles from operations and radio/chemotherapy plus i am unable to speak due to the removal of my larynx. All i can say is enjoy life as much as possible as there is so much to look forward to. I know how hard it can be sometimes but im very happy with my life at the moment although i still get my down days but i have good friends and family who look out for me. I just keep myself busy in the garden or doing DIY plus we have two active dachshunds that keep me company during the day. Im so used to my new way of life now and still go on holidays, shopping etc remaining as positive as i can be. If you click on my name it will lead you to my profile where i have written about my journey plus you can add me as a friend if you want to talk privately. Wishing you and your dad all the best, take care .

                                                                                                     Chris .x   

    Its sometimes not easy but its worth it ! 

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  • FormerMember
    FormerMember in reply to chris2012

    Hi Chris, 

    Thanks so much for reaching out and for sharing your experiences.

    I showed your message to my Dad and he's going to make himself a profile on here and see how he gets on. 

    I'll add you as a friend now Slight smile

    Thanks

    Kate x

  • FormerMember
    FormerMember in reply to chris2012

    Hi Chris,

    My name's Mick and I'm Kate's dad. I had an operation similar (I think) to yours four years ago. I've always been a bit reticent about joining groups and sharing my experience (preferring to try and forget all about it!) but she's convinced me to tip my toe in the water. 

    Cheers,

    Mick

  • Hi Mick, welcome to the head and neck forum where there are some lovely people who have all had dealings with cancer in this particular area, please feel free to ask questions or even answer any posts that you think you can offer advice on. I was very much like you and did not speak about it and just wanted it gone and forgotten, here I am 12 years later still trying to help people along the way. It sounds as if you have a lovely caring daughter in Kate so well done. Our operations seem quite similar to the PEG being our little helper Slight smile.All the very best and Cheers.

                                                                                          Chris . 

    Its sometimes not easy but its worth it ! 

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  • Good evening Kate, you are very welcome and i hope they have helped. It was great to see your dad (Mick) posting on here earlier hopefully it will help him along the way. Thanks for adding me as a friend as it gives the option to talk privately if you wish. 

         Thanks for helping support your dad in this way, best wishes, take care.

                                                                                                Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Hi Mike

    wonderful that you’ve joined us and are well

    Its such a frightening time for so many people and you do wonder whether so much interference with our daily lives and function is worth it when you’re in the middle of extensive treatment  

    People like you prove it is  

    I hope you continue to be well and join in here  

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • FormerMember
    FormerMember in reply to chris2012

    Hi Chris, 

    Thank you for your kind message and for being so welcoming Slight smile

    Kate x