Hello

FormerMember
FormerMember
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Hello all, I am currently waiting for treatment for tonsilar/mouth cancer which has spread to a lymph node. I had a PEG fitted on Friday which was very painful afterwards. I understand why i was prescibed morphine. My radiotherapy & chemotherapy starts on the 3 January. My symptoms are weight loss, headaches and fatigues. I am apprehensive about the treatment and everything else. I am trying to keep positive but i am finding it hard to today. 

  • Hi Chris MP welcome to our small community group sorry you’ve found yourself on here. I’m Hazel I am 3 years and 4 month post radiotherapy for tonsil cancer with several affected lymph nodes so you’re in the right place. I am a positive person you will have hard days. The treatment isn’t a walk in the oral I was 62 when diagnosed but if I can do it anyone can. My blog is below it  may help you there’s links to others that may help you as well. 
    Are you h p v positive do you know ? 
    Any questions just ask we’re a friendly bunch who will always help. 
    Hazel xx

    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/

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Hi Hazel, Thanks for your speedy reply, Yes I am HPV positive. I'll take look at your blog. 

  • Hi Chris HPV tumours have an excellent response to treatment there’s plenty of us on here to testify that fact. The blog is my experience remember we are all different and don’t all get the same side effects. Stick with us on here we will all try to help. 
    Hazel 

    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/

  • Hi Chris, difficult time I'm sure, but there are very many of us on here who've gone down the same (or very similar) well worn path and we're all here to tell the tale. My radio and chemo started in Jan 2014 in fact so it's becoming a bit of a distant memory, you'll get great support on here virtually 24/7 to help you through when you need it. Feel free to ask anything, no such thing as a stupid question.

    Community Champion Badge

    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/

  • Hi Chris MP and welcome to the group.  I can't help with the treatment as I've only had surgery but I had similar to you in diagnosis. 

    I was diagnosed before Christmas and the initial treatment was, like you in early January.  That was 2 years ago.  It is a worrying time, but these cancers, especially when related to HPV, respond very well to treatment. 

    My only advice is enjoy Christmas (Christmas Day 2019 with all the family around me was the only time I broke down - we all do at some stage).  Live life to the full and prepare yourself for a tough period of treatment knowing that next Christmas you will almost certainly be in a much more positive place.  And load up those calories if you are loosing weight!  Best excuse ever for an extra mince pie!

    Peter
    See my profile for more details of my convoluted journey
  • Hi Chris, as Hazel said, welcome to the club! The PEG is annoying, but it will honestly become your best friend as the radiation treatment kicks in and makes it difficult to eat and drink. Like others, you may find the following blog useful; it's not an easy ride, but knowing others have gone through the same definitely helps. Good luck with the rest of the preliminaries and start of treatment. Happy to answer any questions etc that you may have.  Ans https://www.ansonmackay.com/blog 

  • Hi Chris,

    Sorry you find yourself here, but given the circumstances one of the best places to get help. I was diagnosed with hpv+ tonsil cancer, spread to 1 lymph node a year ago. Treatment started end Feb. Aside from a few longer term side effects life is pretty much normal now, been in remission since the summer. 

    The PEG will settle, keep the stoma clean and flush it as instructed. Hated mine at first, my best friend in the end. 

    Have your fill of all the Christmas goodies, you might not feel like celebrating but the calories are needed. 

    If you click on Ronnie95 it will take you to my profile, blog linked in there. As the others say, we all have slightly different experiences. The blog helped me make sense of it all, hope it helps you a little.

    Take care, Gill 

  • FormerMember
    FormerMember in reply to MikeO

    Thanks Mike, I didn't expect to get so many helpful & supportive replies. Merry Christmas

  • FormerMember
    FormerMember in reply to Ronnie95

    Hi Gill, It sounds like i have a similar diagnosis to yours. And its good to hear that you have made such a great recovery and are back to normal for Christmas. Merry Christmas 

  • FormerMember
    FormerMember in reply to PFJTHS

    Thanks Peter for your advice. Merry Christmas. Chris