Recently diagnosed with T1N2 BOT hpv cancer. I just want to say hi on this group.

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I just thought I would join this group to say hi and find some support by  reading other people’s stories.  I am quite scared at the moment.  I go to the Royal Marsden on Monday to get my mask made etc.  

  • Thankyou to everyone for all the good wishes.  I am glad to be starting the treatment soon as all the waiting for test results etc is so nerve wracking. I know that the hpv cancers respond very well to treatment so I am trying to be positive. I have read lots about the side effects of the treatment which is daunting to say the least.  But reading some of your posts etc has given me some hope that I might manage the treatment.  

  • If I could do it anyone can I am a wimp. Any questions please ask one of us will always get back to you. Just keep off Dr Google snd trust your team. 
    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Lizzie. Nobody gets all the side effects and many get few. I was 69 when I finished RT and I managed. So will you 

    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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  • Thankyou.  I am 61 this year.  Slim, non smoker. Eat well.  I like dog walking and have 3 dogs, 2 donkeys and chickens etc

  • Also, what is the best cream for the skin during radiotherapy?   I have bought some Magoo products and some Jennifer Young products.  What can anybody recommend please?   Thankyou

  • Hi be careful with creams to start with be guided by radiotherapy team you don’t want anything  with perfume in or petroleum jelly. I used the cream thst radiotherapy prescribed and after treatment snd weekend s aveeno. But don’t put anything on prior to treatment on the day. Also be careful if lip balms again nothing with petroleum jelly. I used  burts  bees natural stuff. 
    I too was 61  non smoker non drinker cyclist it’s luck or unlucky of the draw. 
    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Lizzie the RT team will give you moisturiser. I got Diprobase but found it too greasy so used Cetraben. Nothing at all before each session but I put lots of aloe vera gel on my neck in the car on the way home. I hardly burned at all. Some people find Aveeno  soothing. Nothing with perfume in it 

    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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  • I used diprobase or zerobase from GP 

  • Hi Lizzie

    Sorry you've had to find yourself on here. The support from everyone here has been amazing though, and from people who are wearing the t-shirt! 

    Mask not too daunting, easy to breathe and makes sure they hit the right spot. I've donated mine to school for the mock ward they are building! 

    I was given Flamigel for my neck, applied 3 times a day. My RT was usually in the afternoon so I was ok to apply on a morning, then had more after treatment and last thing at night. Using Aveeno now. My neck is fine 17 weeks post treatment. Have they gone through all the info about not using anything perfumed (shampoo, shower gel, etc) and only lukewarm showers? 

    My cancer was found in tonsil, but treatment about the same. Have a look at my blog if you want. Doing this on phone so can't hyperlink - look in blogs, it's Not This Time. You're about at the stage of my 4th entry. 

    Hope all goes well on Monday, Ronnie 

  • Thankyou.  I haven’t had my chats with the team yet so I will listen to everything they say.  From what you are all saying it is really important to trust them and they will hopefully help me to get through this.