1 Year on

Hello everybody and a big hello to Dani and Hazel and Blod. Well it was a year ago tomorrow I finished my treatment . HPV 16 base of tongue, I had 35 sessions of radiotherapy and 5 sessions of chemo, I was too sick to finish the 6th session. I find it hard to describe how awful it was, my consultant said I would take you to hell and back. Never a truer word said. I lost 3/4 of my hair, my weight dropped to under 8 stone and I was so very sick, they never managed to control my sickness , I just vomited for months. My PEG never settled, I think Blod we talked about this, I found the Peg traumatic let alone the treatment. Dani and Hazel I just cried until I was too ill to cry and this group kept me going. I gave myself a goal of eating a Xmas dinner, I was so weak and had no taste at Xmas. However now for the good news and yes it does get better. One year on I’m now travelling, enjoying food , not so much the spicy stuff but i can mostly eat anything. I’m working two days a week and life is mostly back to normal. It was one year out of my life which I was told would be the case. I get scared at times but I think having cancer leaves a legacy of fear. But anybody going through this very traumatic time, it really does get better. This forum was my lifeline ,thank you so much to all of you that helped me along the way. Those of you starting this very difficult journey , it does get better. 

  • What a lovely update. 
    You’re right. The treatment is physically and mentally gruelling. But we all here try to give people hope. Your post does give so much encouragement and hope to others so a huge huge thank you for posting and  remembering me too. 
    So many people here saved my sanity whike I was in despair so I stuck around to try to repay them. 
    Travel and enjoy your way through life. You deserve it. Hugs xx

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi  Great need the one year mark is a wonderful feeling snd  well done. Your timelines very similar to mine my treatment finished 31 August si it’s 5 years coming up for me. You’ll still get incremental changes never give up I’m still getting minor ones even now. 
    well done and great fir others ti read. 
    Onwards and upwards. 
    Hazel xx

    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  

  • Hello! Wow, a whole year - it definitely feels like a huge achievement. Well done!!! It’s fantastic to hear how brilliantly you are doing. The awfulness of treatment & recovery fades into distant memories as life returns to a new normal. .The fear also recedes with time. Eating for pleasure rather than just for fuel is such a great feeling & going back to work helps in so many ways. I’m heading for 17 months post treatment & am improving all the time X

  • That's so great to hear! It sounds like you had a really awful time. So glad you're better!  Thank you for posting 

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Feb 2023 PET scan clear and I feel almost back to normal. See my profile for more detail. 

  • Thanks for the positive update. I've had problems with my peg from the moment it was put in. It's due to come out soon, I can't wait, I want my body back but I'm nervous. 

  • It’s a very quick procedure to have your PEG out. Don’t worry.