Newbie!

FormerMember
FormerMember
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Hi All!
Just a quick hello to everyone as I’m new to the group. I’m 8 days post radio sessions( Friday 5/03/21)and my last of six chemos was 01/03/21. The advice I’ve had is it’ll get worse before it gets better!! They’re not wrong. Can anyone point out to me just a small win that would lift my spirits. My diagnosis from November 2020 was T2N1M0 SCC Orophangeal  Cancer of the Right  Hand Tonsil designated as HPV + 16 but treatment start delayed until 25/01/21 due to Covid!

Best wishes

Just wanna play my Guitar

  • Hiya. You had almost the same diagnosis as me by the looks of it, although I had surgery followed by chemoradiation. I’m ten weeks post treatment today and feeling quite well. I’ve been for a run, my first since December, and had a hearty breakfast this morning so things have improved enormously.

    At week 4 post treatment I was feeling pretty sore and not a little despondent. It was two steps forward and one step back with seemingly minuscule improvements.Then at 6 weeks I realised I was beginning to feel better. 

    The guys in here really helped me, so hang in there and stay in touch. It does get better! 

  • Hi Just wanna play my guitar 

    yes you’re in the eye of the storm so to speak your bodies at max with radiotherapy and chemo. Best advise keep on top of pain killers aim for 2-3 litres of water by any means kerp on top of food either feeding tube or orally 2500 calories if you can. A little walk will really help. 
    it does get better my blogs below with links to others you can see my progress I am 31 month post radiotherapy for tonsil cancer with several affected lymph nodes now living my life. Recover time by 6 weeks a corner gets turned by 12 weeks eating gets better  by 6 month you’ll feel different 
    pop back  on with questions. Plus sleep when  you need to 

    Hazel x

    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. Good news that you’ve come through treatment. not much add to the others’ advice save to say hello. 
    by six weeks you’ll feel much more human and by 12 you’d have turned a real corner. 
    Im 2 years out of RT and living well. 
    Just keep playing 

    Best wishes 

    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 MarkEL

    Hi MarEL, so kind of you to reply  Running and a hearty breakfast would be like a lottery win at the moment !I’ve gotta persevere for a week or 2 and hope Mother Nature steps in as well. Will keep in touch.  Best wishes

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Hi Hazel! Many thanks for your guidance. I will try and adopt these protocols. So glad your thro it. I’ll keep you posted Tim x

  • FormerMember
    FormerMember in reply to Beesuit

    Hi Beesuit, so kind of you to reply!  It seems from fellow H n N patients that the 6 week mark might be a turning point and has given me some focus. I’ll keep you posted. WILL keep playing . Best wishes tim

  • Mother Nature will do her stuff, with your help and a little patience. Just don’t be alarmed if some days it seems to get worse. You will heal given time. All the best. 

  • Hi Wanna play my Guitar and welcome to the forum.

    I can't add to what people have already said but just wanted to say hello and to reassure you that in about a weeks time you should very slowly begin to feel a bit better.  As Hazel pointed out, these first 2 weeks after treatment are about the worse stage so keep up taking pain relief regularly. 

    Any questions just ask away - there are plenty of us who've been through similar treatment and ready to give advice and encouragement.

    All the best.

    Linda x

  • FormerMember
    FormerMember in reply to LindaWT

    Hi Linda, thank you so much for taking the time to answer, it’s vey reassuring. One guy put it succinctly as being in the eye of the storm! It can be very daunting to take this on . You get the feeling of spiralling down when you want to spiral up. I’m gonna give an update on my status next week so please send me your comments /ideas. Thanks again and best wishes Tim X

  • Hiya

    You have a similar diagnosis to me, although mine was a bit more advanced (T2N2BM0) - at the point you are at, just over a week from treatment was my lowest point of all from what i remember. I felt absolutely awful and the lack of daily support was hard.

    I had pain, i was coughing up blood every day, i struggled to even eat a fortisip, and i used to dread waking up without morphine in my system

    However it gets better, by about 6 weeks post treatment there was a lot less pain, now (6 months post treatment) i am pain free pretty much and i had yet another chinese takeaway for my weekend treat and wolfed it down with no problems (and a steak yesterday)...it seems awful now, but it definitely gets better.

    Hang in there and please, any questions- ask. This site has been a godsend for me

    Trev