Update Tim(wanna play guitar)

FormerMember
FormerMember
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Hi All, update for Tim(wanna play guitar) diagnosed with tonsillar cancer T2N1M0 HPV +16 last year . Treatment 6 x Cisplatin plus 30 x radio.  completed 5/3/21.

Completed week 8 post treatment yesterday (Friday)

To be honest I’ve gone backwards this week compared to week 7 . The dreaded fatigue returned and I had to go back to bed on two afternoons I was so tired. I must admit I’ve been doing much more. I plumbed in two new taps underneath a sink, I’ve been 2 x 5Km cycle runs plus a couple of 4 Km walks, so maybe overdoing it.

Taste: no improvement. I get a flavour for a couple of mouthfuls then it goes into thin air for the rest of the meal. Am hoping this will resolve.

Mouth: mucositis has largely cleared up but back of throat and tonsil site is sore, especially after eating.

Neuropathy: this is a tough one, I’m no worse and it “feels” as though I’ve got a little more feeling coming back.

Eating: I’m virtually eating normally, although bread and dry food is hard going due to “dry mouth”

Sleep: due to dry mouth, sleep is interrupted due to needing a drink/apply Biotene/go to the loo etc. 

It seems I’ve plateaued at the moment with very sloooooooow improvement. Maybe this is normal as you hope “I’ll feel better tomorrow” but disappointment follows when you feel the same.

So, all in all, feeling somewhat despondent this week. Soz for negativity and hopefully next 7/14 days I’ll see improvement. 

Anyway, not a great post this week, but I wish everyone a peaceful and healthy week. All comments/ ideas/tips are  most welcome.

Best wishes. Tim

  • Hi Tim. I remember it being very ‘two steps forwards and one step back’ around this stage but it was slowly improving nonetheless. In a few weeks you’ll likely feel a lot better so don’t be too despondent. I’m at 16 weeks now and feeling pretty good, albeit a little anxious about a MRI scan scheduled for Monday which I wasn’t expecting! 

  • Hi Mark 

    Are  they doing MRI instead of PET/CT?

    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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  • Hi Tim. Maybes you’ve answered your own question possible you’ve overdone ur. You are still in recovery and your bodies telling you so. So dust yourself down and next week maybe pace a little slower. 2 steps forward and one step back maybe your mantra for a while but you’ll get there it’s early days although you might not think so. 
    onwards n upwards yoyr eureka moment will happen. Ps bread is one of the hardest things plus chicken. But you will get there. 
    hazel x

    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 Mark good luck  for Monday you’ve come this far one more. hurdle. Like Dani says mri not pet ct scan ? 
    Hazel x

    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 Tim,

    Good to read the update, sorry you are having a down moment.  I'm going with everything Hazel said re maybe doing too much and listening to your body!

    Don't apologize for 'negativity' though.  I think this is a great place to be completely honest.  I think it's very easy to find yourself saying just what you know people want to hear, and that's not always the reality of it as we all know!  It's like a post I read about people always telling you to be positive like that will cure you!  Yes, maybe it helps, but as Dani once put - glass half full people get cured too!!

  • Dani and Hazel, yes it’s MRI. I’m a bit confused as to why as my surgical team said I wouldn’t have anything. That said my oncologist has organised this so maybe they don’t communicate much? 

  • Hi Tim it sounds like you are doing really well . I am 3 months now since treatment and am still not back to normal. Things move slowly and you cannot rush nature . I was suppose to be having pet scan this week but no one booked it  and seeing consultant next week which has been cancelled. All the Best Regards Min 

  • FormerMember
    FormerMember in reply to MarkEL

    Hi Mark, thanks for rally call it’s very welcome! Please keep us all updated on MRI scan. I would check with Macmillan as it may be routine at 16 weeks.

    Best wishes. Tim

  • FormerMember
    FormerMember in reply to MarkEL

    Hi Mark just got updated with your last post just now. My Oncologist has ordered an MRI in June, 15 weeks after treatment end! I knew I would be getting this scan so, as you say, it sounds like miscommunication.

    Keep us posted. Tim

  • FormerMember
    FormerMember in reply to Minmax

    Hi Min! Thanks for reply and rally call. I think we all get somewhat impatient as regards our health! As you say Mother Nature is powerful but slower moving. 
    Keep us posted on your scan and interview please.

    Best wishes. Tim