Tim(Wanna play guitar) Update

FormerMember
FormerMember
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Hi All, weekly update for Tim(wanna play guitar)

Diagnosed with Tonsillar cancer last year right side T2N1M0 HPV+16, treatment Chemoradiation 6 x Cisplatin + 30 x rads competed on 5/3/21.

Well, strange week! I had a visit to ENT on Wednesday to a consultant(surgeon) who examined my throat with a camera and said he couldn’t see any evidence of cancer! So we’ll pleased. It’s only the first hurdle though as I have an MRI next month to check what you can’t see. I’ve got a swollen upper lip which probably only I can notice be he duly checked it and said it’s most likely Lymphatic fluid.

Another strange event with my knees. I noticed that I had small black “things” on my knee area. I thought it was hair follicles growing back. I squeezed a couple and out popped old splinters of grit or wood! They’ve all come to the surface. It’s odd because they must’ve been there for some years from the working/sporting part of my life. Anyway, one to watch out for with Chemoradiation.

Here's a summary of side effects:

1. Neuropathy. Still have it, although it feels easier I’ve hopefully turned the corner with this as it can make you drop things and you can cut the ends of your fingers without feeling it.

2.Xerostomia(dry mouth). Sadly, this has gotten worse and I’m at a loss of how to combat it even with Xylimelts, Biotene and now also Saliveze spray. The Consultant said it was just time.

3. Taste. This is a partner in crime with dry mouth. Suddenly I have some taste then it disappears. Very frustrating as coffee(one of the things I could taste) sets my tongue off and causes fissures.I’ll have to get a new strategy.

4. Mind. Not too bad this week as I’ve had a positive from ENT but there’s always places you’re mind can take you to bring you down. Must keep busy.

5. Fatigue. Again, slowly improving. Depending on the quality of sleep I get establishes my energy levels. I’ve only had one “event “ this week where I just had to lye on the settee and snooze it off.

6. Mouth. Would like to say it’s improving, but my mouth has been the same for the last 2 weeks(sandpaper). Hopefully, I’ll see some improvement in the next couple of weeks.

Well that’s week 11 post treatment and I think you’ll agree it’s slooow improvement. When I compare it to say week 2/3(the worst period) I have to admit things are much better. As long as it keeps going in the right direction I’ll accept it.  I know the radio is a brutal treatment but can be dealt with. We are all impatient when it comes to health and just want to be normal. Anyway, that’s me for this week. I’ll post next Friday as normal. As always, any comments, ideas or advice is most welcome.

Have a happy, healthy week . Best wishes Tim

  • Hi Tim remember the acupuncture route I swear it kick started my saliva   I woukd say I am 95% normal now in daytime  no certainly have a moist mouth eg last night I went to bed 2330 popped  half an xyimelt in ( Ive always used half of one cut the brown side with knife sharp tap ) woke up 0730 ni waking in night no sips of water. Ok was dry on waking but one sip was ok. Yes make coffee milky I use herbal tea bags peppermint or chamomile as well

    tea snd coffee are dehydrating hhrnce the de caf I don’t mind it.  Get coffee taste but not the kick. 
    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/

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Hi Hazel. Gonna try the half Xylimelts. The Acupuncture route will be followed. Dani also recommends it. I need to find out if it’s NHS or pay as you go. I’m happy to go private as I’ll be able to come and go at my convenience. That’s fantastic you can nearly get thro 24 hrs with minimal attention. Keep you posted. 
    Tim xx

  • Hi Tim some trusts do I my case they didn’t it’s a specific type of acupuncture called auricular I paid £35 a session money well spent I had 6 sessions. Took me a while to find one as well. Cutting the xyimelt is an art use the knife towards the hilt and swift press doen took us a whije to get it right. I also put it at top of gum between tooth and cheek on side which has a little saliva in my case the less radiated side left one. 
    good luck 

    Hazel

    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/