Hi. 8 weeks post treatment and scared

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Hi everyone I am experiencing loads of emotions. Very up and down. I have a T4 tonsil diagnosis which I had 30 radiotherapy and 2 chemo. I am pretty scared as I was supposed to have a further 4 chemo but my consultant stopped it because of my severe reaction to chemo. I have my PET scan around August and am more than frightened regarding the result. Can the treatment I had really cure it? I have a hoarse voice and still don't feel that well. Is this normal? My appetite is also rubbish. I have the shakes and feel pretty low. I hope you all don't mind me reaching out? As I am pretty scared right now:-( 

  • Hi  

    Well done on getting through. I’m sure your team has explained that most tonsil cancer is caused by HPV and is very sensitive to radiation. Its curable and the success rate is around 95%. The chemo adds around 6%. 
    How far out of treatment are you? I guess around 6/8 weeks? 
    Recovery takes a long time. So don’t rush and trust your body 

    Its normal to be scared and anxious about the upcoming PET so just try to keep busy, concentrate on getting better and hold onto the fact that you have a very curable cancer. 
    Talk to us here. There are lots of us to put your mind at rest 

    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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  • Hi JCPH, nobody minds you reaching out, that's what this forum is all about, ask as many questions as you want. Many of us on here have not had all the chemo we were meant to have, It's the RT that is the main treatment. You are still early in your recovery, and it does take a good while before you start to feel better, your body has a lot of healing to do, it's a long recovery that can't be rushed. The cure rates are very high, there are many of us on here as living proof of that. Any questions just ask away.

    Ray 

  • Hi I didn’t have all my planned chemo I was due 3 big infusions but the last one was cancelled and here I am 6 years later happily living a great life. 
    radiotherapy is the main course of treatment chemo is a top up so don’t stress. Many don’t have all the planned chemo. I had 7 affected lymph nodes and I made it  what yourec feeling is normal reactions. Try not to stress you’ve done the hard work give this link  a read. It helped me and many others.
    should out on here any time we never judge.
    hazel x 
    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    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  

  • Hi Dani, I am 8 weeks post treatment my consultant said it was higher than 80% which I am holding on to.

    I appreciate your words as everything seems confused and unclear in my head. I think it may be a delayed reaction as all I wanted to do was get through treatment! Midway through I was in hospital as I became so unwell and it was a very sobering time seeing so many lovely people at end of life. I tried to help by being there for them its hard to think that some are no longer with us!

    Thank you so much for taking the time to reply it's time on my own that everything is the loudest. I really appreciate your time xx 

  • Thank you so much Hazel I will give the blog a read. I appreciate your reply as very emotional this evening xx 

  • Hi Ray you words have really helped tonight I am feeling a little vulnerable! Thank you for taking the time to reply it is hugely appreciated!

  • We are all here to support each other. Never hesitate to come here with anything. We are all quite good at hugs. 
    Do read Hazel’s link to an article by Dr Peter Harvey who before he retired worked with cancer patients. It’s a good essay on recovery. 

    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

    Community Champion badge
  • Hi you’re welcome. Treatment is hard but so is recovery. It’s a marathon not a sprint but you’ll get there baby steps and one step at a time some days 2 forward and 1 back. We’ve all been in yours shoes one way or another. I was lucky I’m a glass half full person but I suffered radiation fatigue   Yes the article is as Dani says excellent. All of us want to run before we can walk. 
    keep on here we’re all happy to help. 

    hugs 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  

  • I normally am a philosophical type but this has wiped me out. Hopefully it's just a blip.

    Thank you Hazel Blush x

  • Hi Dani I definitely will! Thank you once again xxx