Week 5

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Hi everyone,

A quick update, been a tough week this week 5. Pain ramped up last weekend so Monday had me knocking at the head radiotherapy nurse door!! Pregabalin dose was doubled and prescription for oxcodone liquid was added ,for breakthrough pain ,which has been a great help . Still on baseline of cocodamol in the back ground.

Pain and sores mostly at back of throat and sides of tongue. Producing lots of thick mucus mainly at night time, blood ,yellow and cacky brown in colours !! Just to add a bit of variety !! 

Feel very "drugged" now , zombie ish even. I do try to eat everyday but it doesn't amount to much.

A lovely RIG nurse came to the house Friday to show me how to set up my new pump feeder ,which after using once I know is going to be a game changer !! As I was struggling bolus feeding 6 bottles of fortisip through the day , especially with RT sessions at different times .

Nebuliser is earning it's £25 I paid ,using at least 4 times a day ,was told they would have gave me one !! Never mind. Daughter can use if kids are unwell .

Started doing Jigsaws now to keep the grey matter going , which surprisingly I'm enjoying!! Sharon has brought me a great Porsche Lego set to do also!! 

I'm glad I came to this forum as you all have helped with my questions and put my mind at rest. Which helps considerably I assure you. 

So that's week 5 done.

Oh and Laxido is my best friend!!!!

Thanks for listening.

Mark ....

  • Hi Mark, glad to see that you are managing to keep on top of things.. not long to go now, but don't let up as you will still be 'cooking' for a few weeks afterwards.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Well done Mark, things will improve, tough just now,  I used an old Nintendo DS games unit to keep my mind off the recovery slog... worked well.

    Peter 

  • Thanks for listening.

    You’re doing pretty well. Just one more week and you can snuggle under your duvet and sleep. 
    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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  • Hey Mark, you’re at the sharp end now but not long to go now. As others have said, be prepared for it still escalating for a few weeks once you’ve finished treatment but it will start to get better… Keep up with the puzzles and Lego (though I found respite in sleep… tried to snooze through the worst of it all!). 

    Best, Lisa 

  • Well done Mark.  I love that you still have a sense of humour - that will help you though this.  I had more than a few laughts with the clinical teams as I went through things.

    Sounds like you are on track.  Keep on trucking!

    Peter
    See my profile for more details of my convoluted journey