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Hi all. I am new to this forum. I was diagnosed with head and neck cancer earlier this year. I have had 6 weeks of chemo and radio therapy that finished 3 weeks ago. I have a feeding tube in. Currently really struggling mentally as little improvement since ending treatment and the feeding tube is really disruptive. I find myself awake for atleast a couple of hours each night and my anxiety, which I don't normally suffer with, goes into overdrive. I really need to see some signs of improvement to keep my spirits up.

  • Hi James. Take a deep breath. Don’t expect too much. You are just at the peak of the radiation working. Recovery is a long process and not linear. I think most of us here feel a bit better by 6 weeks and turn a corner by 12. I wasn’t happy with my recovery till six months and that seems to be par for the course. 
    I used to take the dog out for a walk to have some time to myself but before I could manage that I pottered round the garden. Fresh air and doing something you like really helps. What also helps is knowing things get better and there are the folk on here to talk to. 
    if you are wide awake in the middle of the night join in here 

    https://community.macmillan.org.uk/cancer_experiences/cancer-chat-forum/f/chat-13/295498/awake-and-up-all-night

    Stay with us and we will help you through 

    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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  • Thank you Beesuit. Appreciate your reply and insight in to what recovery might look like. I had no idea it might take so long to get back to real normality. 

    I will definitely be up and about at some point in the wee small hours 

  • HI, James its really tough i know, i finished my treatment the same as yours, mid January the six weeks after treatment were not pleasant but things do improve i did not believe they would at the time but now it seems like a distant memory and i feel much better .The side affects and trying to ease them seemed all consuming i know its hard but try and do something to take your mind of things i found that colouring  books helped me to concentrate on something else just for a while .Things may get worse before they get better but the time will soon pass keep reaching out to us and we will try help you through it ,stay positive and keep thinking in a few weeks you will feel much better .Good Luck .

  • Its a tough and disruptive treatment, physically and mentally trying, improvement takes time and patience ...we often take a few steps forward and then a few backwards...the feeding tube is a lifesaver for many, helps us get a few calories in and  keeps our weight stable...anxiety is normal for most of us as is trouble getting a decent nights sleep...I was prescribed a low dose of Zopiclone to help with sleep issues...2 or 3 times...improvement will come ...little by little.

    Michael

  • Thanks Holidays & Micky 55. Really appreciate the encouragement. I had no idea it would continue to be so hard post treatment. I didn't think it would stop straight away but I thought after 3 weeks I'd be significantly better. Not so! I think the thing with the treatment was that I had a definite finish date whereas recovery is open ended. I'm barely eating and drinking anything each day myself so am really reliant on the tube. I'm hoping/assuming that once my mouth and throat improve that I will naturally be able to consume more myself. 

  • The best thing to do is to keep on challenging yourself with different foods and drink...what does not work this week may well work next week...my first success was Guinness Alcohol Free...I was ecstatic ..found something I could tolerate and taste...just a little stepping stone.

    Michael

  • Hi James . Welcome from me. I looked at it as a marathon notva sprint. My oncologist said he was looking to cure me he also apologised saying he would take a year out of my life to give me many more. He did both I’m now almost 8 years post treatment. What we tend to forget is the treatments brutal but it’s killing cancer in a very delicate and an area we use every minute  of the day. Take a read of this article written by a consultant at Leeds cancer centre  

    Any questions pop in her  As for nutrition I was told 2000-2500 calories a day  by any means I coukd  protein is a key to recovery we loose a lot of muscle mass and recovery will start once yiure getting enough nutrients inside you I took my ng tube out nweekm3 as I coukd orally drink the ensure drinks I then started supplementing them with very sidt foods n eggs are good poached eggs with Philadelphia soft cheese on well butted  toast was easier than bread on its own for a long time  

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    Hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  7years  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/

  • Thanks Hazel. Much appreciated. I'll have a read. My cancer is also HPV 16+.

  • Hi yes now dats the majority of tonsil abs bass if tongue now dats are hov derived. Around 70% in the Uk   Sadly on the increase as well  there us now a vaccine for teenagers so hopefully one day it will be eradicated  although the vaccine uptake is now in the decrease  vaccine apathy 

    we’re all happy to help  

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  7years  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, I finished my treatment 6th March, it’s not easy for the first few weeks, throat sore and sleep all over the place.  Feeding tube was a god send as others have said but everything will start to improve, I still get pain in throat but not as bad, the dry mouth is there in the morning and fatigue during the day but it is getting better.  Keep on going and take the advice on here, for me reading what others have said gives you the light at the end of the tunnel 

    T2N1M0 base of tongue with right sided lymph nodes.