Update for Tim(wanna play guitar)

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Hi All, Update for Tim ( wanna play guitar),

Hi All, update for tim(wanna play guitar) diagnosis Tonsillar cancer (right) HPV +16 T2N1M0 Last year. Completed treatment 5/3/21  with 6 x Chemo. Cisplatin plus 30 rads.

Week 21 post treatment.

Soz, but missed last week due “another” chesty cough this time picked up from granddaughter.

It’s cleared now but the little bit of taste I had has receded back about a month.

I’m carrying out normal duties around the house doing my walks etc but still get tired.

Here’s my resume of side effects:

1. FATIGUE. No devastating episodes for a couple of weeks but that nagging feeling seems to hang around when you don’t want it

2.XEROSTOMIA. No change sadly, still feels like thin saliva and not enough of it.

3. TASTE. As pointed out still no real taste. I get a few mouthfuls and it dissipates into cardboard and talcum powder!

4 MOUTH. Inside of the lips, roof of mouth and tongue all feel rough and cratered after waking. They slowly improve through the day and then it’s back to square one the next day.

5.NEUROPATHY. Funnily, I thought this was improving but this week it’s back with vengeance, cold fingers and numbness.

6.MIND. My mind is more relaxed due to the good results from the PET scan but it’s easy to delve into the dark side- DONT DO IT!

7.LYMPHODEMA. This can be managed at home if it’s not really bad. I’m still waiting for an appointment from the Lymphodema Clinic though.

Anyway folks that’s me for this week. Don’t hesitate to get in touch if you resonate with the above  I wish you all a happy and healthy week.

Best wishes

Tim

  • Hi Tim

    hang on in there it’s no help to you but 21 weeks is still early in terms of recovery,

    Saliva does slowly improve as I said in an earlier post I’m almost 3 years and still noticing slight improvements. I no longer walk around with a water bottle in my hand. I can happily garden for over an hour without a drink. 
    Neuropathy does improve again with time a friend of mine was plagued in and off for over a year then when it went 

    If you’ve had a cold your taste will have taken a setback it should  bounce back. Glad you’ve seen granddaughter I know  seeing our grandson used to brighten my day. 
    best wishes 

    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  

  • Hi Hazel , Many thanks for reply. Hope you are very well.

    Yeah just got a bit despondent with a chesty cough, drags you down a bit. Like you say early days. Hydration definitely helps. Seems like 2 steps forward, 1 step back all the time though. Will persevere!!

    Best wishes. Tim xx

  • Hi Tim. That was a favourite or not mantra of mine 2 steps forward one step back. It can also apply to food later on one week you can quite happily eat x y z then the following week no way Jose will x y z go down. But it all sorts it’s self out.

    I am good thank you got a face to face on the 23 rd and next week off to Caernarfon tk get  some cycling in. 
    higs H 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  

  • Hi Tim I am 6 months now out of treatment and still getting over things, Got my barbers chair thing and had mri scan last week. Mouth is fine but taste is another story and throat plays up sometimes but no big deal. Fatigue aint  to bad at all . Mind is another matter but I found listening to Podcasts called fearless soul helped me as quite inspirational. Lymphodema or Dimbleby havnt heard anything from them as back logged . All the best  Look after yourself it will get easier Cheers Minmax 

  • Hi Tim

    Sorry the cold has sent you back. 

    My mouth is a wreck, roof looks really grey and wrinkled, waiting to see what the dentist makes of it next week. Yep, definitely worse on waking. This and dryness are probably having biggest impact on eating. Although, providing I pre-hydrate I can manage an hour walk with the dog without a drink, so long as I have saliva spray (which is more psychological as rarely use it). 

    Glad your fatigue better, that and scan results must be helping with mind too. I've been having counselling and it's been a huge help. Thinking and planning ahead more. 

    Hope more improvements for you this week, Ronnie 

  • Hi Ronnie It does improve so stick with it . You will get there just a matter of time which no one can stop . all the Best Regards Minmax 

  • Hi Min thanks for reply. Will look up the podcasts, thank you. Look after yourself. Best wishes. Tim

  • Hi Ronnie, yeah me too. It gets you down. I’ll be interested in what your dentist says. Keep me posted if you don’t mind. 
    Have a good week!

    Tim

  • Hi Tim,

    So had dentist appointment today. Mostly ok, offered to sort prescriptions for duraphat, etc if needed. Was understanding about trismus and gave me jaw breaks. Thankfully noticed an improvement this week, roof of mouth a bit pink, lots less grey and wrinkled. He said oral hygiene seemed OK and gums are healthy. So mostly good. I've also found using the bioxtra gel at night means my tongue isn't stuck to my mouth when I wake up. Worth a try. 

    Only bad news is that age 48 I have to go for my first filling! Really annoyed with myself. Need to find some less sugary calories!! 

    Hope your mouth is getting better too, along with the rest of your recovery!

    Ronnie 

  • Hi Ronnie, nice to hear from you! That’s good news on the gnashers.  My jaw has benefitted from gentle stretches in the morning . I can feel the improvement and only been doing it a week. I’m using a Xylimelt at night, though not ideal, it does stop your tongue and cheeks getting stuck which I know is horrid. The problem for us all on this recovery pathway is that everything takes soooooo loooong to improve. But, it is what it is. I’ve also had the camera down the gullet this week and happy to say the Consultant couldn’t see any evidence of cancer. So, progress for us both happily.

    Keep in touch! Best wishes

    tim