A steep hill- anyone been here?

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I know I'm lucky to have had a successful mouth neck dissection operation using part of my hip and I have not have to undergo chemo or radiotherapy. I left hospital about a month ago and was told all should go back to normal in time as no nerves severed. But after a month at home after the initial euphoria of having been saved from cancer the journey is difficult. A lesion on my chest to be looked at adds to the uncertainty of the future. After an infection my face has settled down to a tight lump on my throat, Lymphomia maybe. Due to continued paralysis on right of face I can only eat soft goods or tiny pieces and dribble when I eat. My cat sits on my lap and gets showered! Worst is the aches and pains and feeling tired out after every little thing. Fentanyl patches help with pain and am reducing. I look forward to when I can go to bed but now tickly cough delays me sleeping and I awake with horribly tight neck to stat another unproductive day. So an ungrateful whinge, when I know so many of you have it worse. Any tips? 

  • Oh Posi just stick with it. When I had a bad patch after treatment I tried not to go to bed saying tomorrow will be better. I found I was often crushed when it wasn’t so I just ploughed on a day a time. Your next day isn’t unproductive… it’s another day closer to feeling better. A week will pass, then a month, then spring and summer will bring sunshine to your body and soul. Trust me…… I’m a vet. Wink
    Lots of people find a cocodomol at night helps with the tickly cough. 
    I have  a contact who had some facial nerve bruising during surgery and had a dropped face for a while. She used to look in the mirror and practice smiling. One day her damaged side tried to smile back. She counted the number of teeth she could see. 
    Listen to your body and take it easy. It’s all you can do. 
    Ask your CNS if there is anything you can do to manage the swelling. Massage or something. 
    Do have another look at Peter Harvey’s esssy on life after cancer. That might help too 

    www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

    Hugs 

    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 Posi. All you can do is listen to your body. Co codomol can help with dry tickle cough. We all want to get better quicker than it actually happens. My beef with my oncologist is and always will be they tell us 2 weeks and will start to feel normal   I  know of no one in that timescale. Although he also  said to me he would cure me but would take a year out if my life he did both ! 
    . Be kind to yourself as Del boy used to say ti Rodney this time next year. As we all know eating us such a social thing when that’s taken away from us it’s hard to function. I never thought I would eat in a restaurant again I can and I do. 
    hugs Hazel xx

    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 Posi You have done the difficult bit , Nows the time to do the hard bit and recover which you cannot rush. I just had a salvage neck dissection so light weight compared to you but that was on the 28 november and I am getting back to normal which you will do in time. Take it easy on yourself , One day at a time . All the Best Minmax

  • Thanks, that Co - codamol did help and better day today. I always seem to have melt downs at weekend when CNT nurses etc not around. Thank God for kind people on forum.

  • Thanks Minmax, Much better day today. Thanks for your support. 

  • Hi Posi going through radio and chemo and being admitted with some blood disorder is all very trying , But you know I felt blessed as I was even getting treatment and this was during covid. I have since had to have a salvage  neck dissection and feel so lucky as I probably wouldn't be typing this if they didnt operate as surgeon said it was just a mess, Unfortunately they couldn't remove it all as to deep. So thats a bit of a bummer but I feel ok about it in the scheme of things. Life is  good. All the Best regards  Minmax