Squamous Cell Carcinoma of the Tonsil.

Hi, Anybody else with this cancer? I was diagnosed 1/12/17 and treatment started 18/12/17. Entered a trial, 25x weekday daily radiotherapy plus 5x Chemotherapy. OK until start of week four, but had to start co codomel last night. Appetite has gone and forcing the fortysips down is a real problem, but have found thin porridge with honey to be good. Really find pureed meals inedible. I know it is only going to get worse over next four weeks. Any tips or thoughts. Thanks.

  • Hi there , sorry I’ve not been on her for a while . After a bit of a rough ride of it with relentless infection after infection I’ve finsll turned a corner and over the last fortnight I’ve regained my ability to eat fairly normally and I’m now off all pain medication. Feeling better . Tiredness and stiff jaw and slight dryness of my mouth are the only non major issues. I’ve had great post treatment aftercare, still attending the hopsital where I received treatment, every two weeks for check ups with my oncologist. I’ve had my scope done and everything is looking good and I’m waiting on scan appointment coming through. Paula has been a fantastic support to me throughout this , so lucky to have someone that knows how this all feels and understands. Hope everyone going through this on here is coping xx 

  • Hi Paula This is Hazel I am just starting the journey glad to hear you are coming out the other side ! First chemotherapy on the 16 th July followed byb35 rad and eitherv2/3 more chemo. To say I am petrified is an understatement,but keeping positive thinking and finding the forums invaluable Vatch has already been in contact .

    Tonsil T2 3N no metatitis

     

    have a good weekend

     

    hazel 

  • Hi Lynne

     

    just starting the journey the forum as been invaluable so far. Glad to hear you have turned a corner in your treatment  I am not looking forward to any of it but at least mask made and have been given a date And the hope and helomthats around will get me through it 

    tonsil cancer eight ine

    T2n3 no metastatic 

     

    habe be a good weekend

     

    Hazel 

     

     

  • Hi hazel... Sounds like you know what's going on! It is a tough road but you do it one day at a time. I found treatment tiring but I have to say it was after treatment that I struggled for a bit...i had a large open wound inside my mouth and in the soft pallet before I started then they messed up the feeding tube which was my main issues in the early weeks... In the end my spare body weight  got me through and the cancer diet has been a good thing.. Lol... The blender will be very helpful! By the time treatment was finished I was ready to sleep for a month... So I did! Now im well on the mend and just waiting for the scan... Trying to stay positive.... You sound like you have a real positive attitude and that helps! You will do great! Read Vatch post or blog he is pretty spot on! You will wish he wasn't at times but it helps to know what's normal...i feel good now and have for a few  weeks and only 11 weeks out from treatment... So don't worry if you can cycle that far you will rock this!!! It's waiting For everything to kick in and be finished is hard... Paula..xxxx

  • Hi Paula

    thanj younfor your kind words , Yes I found Vatch early on and his blog Inread it from start to finish in one evening and thought right this is going to hurt more than childbirth so getting my head around it slowly. Have read the forum and under no illusion how painful it will all be especially when we are left to,our own resources after seeing hospital staff every day . Realise everyone is different and until the journey begins I don’t have a full grasp.

    weight 40 years agon8 stone wet through ! Weight tidaynqqstb4 lb and eating like a pig at the moment which is unusual but got High blood pressure 2years ago by drinking liquorice blooming tea of all things !!!  Crap I know but sinceBP tablets weight has slowly increased although biking as git better strange I know. 

    Dont smoke hardly drink might have had 5 drinks since xmas so that will be ok .

    where in New Zealand are you ? 

     

    fingers x for your scans , I start first chemo on 16;July 

    plus been told by mynconsultantbwhimis a lovely guy feel really at ease with him that it’s  HPV 16 positive which is a good thing  nimidea where it’s come from Asmara we’ve been married 40 years next year and trust John completely he was a coal miner nit a dishonest bone in his body  He fancied me from age 15 so sweet I know . Plus I know my own history as well .so reckon   Like the consultant does have hasn’t it  since urgh or hubby passed it on via his parents but don’t really care justbwantbrid if it

     

    take care 

     

    keep,in touch Hazel 

     

  • Hi, yes my husband and I have talked about where IT the HPV came from, im a nurse and researched a bit..86 percent of people on the planet will be exposed or have hpv at some stage it is virulent as a virus but most people clear it within two years some like us hold onto it for future weight loss plans! Cancer rates in young people.. That's us by the way... Have increased by 60 percent in recent years not solely due to hpv but it is responsible for many... I started out at 120kg in 96 kg now and feeling good for the weight loss. But you must try your best to maintain weight through treatment I lost most of mine after treatment was over...i managed without a feeding tube in the end.. Mine failed... But I would have used it had I had it... For alcohol mainly! Joking!!! I live in Tauranga in nz on the north island...xxx you? 

  • Hi Paula

     

    we live in Gods own county !!! Yorkshire .Small mining villagebwell itbwas ince upon a time !!! Called Hemsworth , we have a long term rental in Southern Spain on the Mar memor called Los Alcazeres we were due to ne  there 21 August for 8 weeks ,well that’s untillmLarrybas we’ve called him made an appearance.

    John the hubby applied for a job about 8 year she ago in South Island think itnwas Greymouth butbhis UK qualifications 35 years underground supervisor in the end wasntbreecognised . Everything for a reason I suppose.

    when I was was working I was a business travel,consultant somgotbto book other people’s travel , never done New Zealand.

     

    take care hope you are still going inwards and uoward

     

    keepmin touch any tips appreciated 

     

    Hazel x

  • Paula and lynne

    so glad to hear that you are both on the mend and that you had each other each step of the way .... you are cancer survivor buddies for life now

    When I had my treatment I spoke to a few people going through the same and we now meet up every two years .... Edinburgh next April .... these people I will treasure

    i have not heard from John I guess he is still on the mend but slowly

    anyway glad your recovery is going well

    vatch

  • Hi Hazel, not contributing to the thread, it’s outside my experience and from what I’ve read, quite happy to keep it that way. 

     

    Just to agree about God’s own county, I’m originally from about five miles down the road from you!

  • Hi Rilryroo don’t blame you I didn’t want to join either !! But us lasses are tough from Yorkshire!, will get there 

    thanks for replying 

    hazel