HPV 16 - 11 weeks post treatment

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Hey all,

I’m new here and wanted to intro myself.

I’m 11 weeks post op (secondary lymph node removal and partial removal of my tongue via TORS) and I’m just 2 weeks out of hospital .

Unfortunately, I had a catastrophic bleed which led a cardiac arrest which has complicated things and given me a brain injury and blindness in 1 eye. I died for 29 mins Frowning2

This has caused some atrophy and speech issues plus memory loss.

The tongue sample had the primary in but they missed some of it and now I’m on the road to radiotherapy and chemo to get it. Starting 23/2

I’ve got a RIG in and can swallow some basic foods but had to have a full dental clearance to allow the radio/chemo, so soups and liquids so far .

So having lots of fun right now so thought I’d try and find some support and found this group.

Sorry if I’ve overshared but good to just get it down.

  • Good luck with everything. Sounds like you have had  rough ride so far but remember it's gonna be a marathon and not a sprint.

    Put all your info in your profile so you don't have to keep repeating yourself amd search for groups that are similar to your case and symptoms.

    This is a great community with great people and great advise. Thumbsup  Just click on someone's icon / username to view their profile Smiley

  • Hi Welcome from me we’re a small friendly group no questions to silly. Always someone around. Seems like you’ve had a rough ride so far. The rig will become your best friend I know my ng tube was a lifesaver for me. Don’t struggle  with nutrition and hydration plus all medications can go through it  TakeChemo and radiotherapy one day at a time 

    Best wishes 

    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/

  • My heart goes out to you what a bumpy road so far and heres me moaning about having a choking fit i only had to have 5 teeth removed and that was bad enough .It seems like you are prepared for your next step the RIG will become essential as you go on im sure you will have some issues but hopefully compared to what youve been through it might not seem too bad good luck and keep us posted to have your getting on .Kind Regards Graham 

  • It's good to have a wee rant now and again, we all understand where you're coming from...tough times for you...keep posting there's always someone around.

    good luck

    Michael

  • Welcome from me.  You've already had a rough ride thus far and going forwards it's going to be tough. BUT with support from family, friends and the amazing people on here you will get through it and out the other side.  Stay with us and we will have your back. 

    Peter
    See my profile for more details of my convoluted journey