Head and Neck Cancer

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Hi I am 11 weeks post chemo radiotherapy for HPV positive tonsil cancer with lymph node involvement. I can’t deny it, the treatment was cruel as we all know. Although half my tongue was ulcerated and this has nearly cleared, the rest of my mouth seems to be getting worse. My lower throat produced a lot of mucous but stopped about 5 weeks ago  however, it seems to be coming back. The roof of my mouth and throat by my tongue is thickly coated in what I assume is damaged lining. I am doing everything that I have been told to do with mouth care. 
I was expecting things to heal quicker. Did anyone else experience this? How long does it normally take? I have tried to eat but I am putting it off for now as it makes me feel low when I fail. I am getting enough nutrients via my peg. If anyone has any ideas I would be super grateful. Thank you in advance 

  • Hi  and I see it’s your first post so a warm welcome to the Macmillan Community.

    I have been in my cancer journey with 2 rare types of Lymphoma for over 25 years but my experiences are very different….. but talking with others who have walked the ‘exact same journey’ can help you a lot.

    The Community has many Cancer Specific Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….

       Head and neck cancer

    …… support group.

    This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike. 
    wow! It makes my journey pale into insignificance Open mouth
    Thank you for sharing your story. I was known to be the strong one of the family before all this. I have to say I have been feeling rather sorry for myself. But your story is inspirational. I will try to get back to my former strong self. It is so hard but it does help with healing 

    stay strong and take care 

  • We all (parents and family) deal with this journey ever so differently….. it’s not about being strong……. It’s about developing the ability to control the noise between the ears and in doing this we can define how ‘we live’ and not be derby our cancer journey.

    I was 44 when I was first diagnosed, but I turn 70 at the end of the year and as a family we continue to look forward. 

    The most important ‘visualisation’ advise I can give is this is all like driving a car…… the future is open for you to see through the big wide front windscreen...... most challenges will pass…… and the past is only visible in the little mirrors........ if we concentrate on the little mirrors we miss the future and more importantly we will crash.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge