Hello where do you start ?

Hi Tim I’m Hazel aka RadioactiveRaz. I am now just over 4 1/2 years post radiotherapy for tonsil cancer with several affected lymph nodes. It’s a shock to hear the words but try and keep this on to the forefront of your mind. Tonsil cancer response extremely well to treatment.. Do you have your HPV status ? It’s a scary shock when you first say the words your head will be in a whirl I know mine was. I thought I had pulled a muscle. Best advise you’ve found us on here stick with us we will all help. 
my blogs below it’s a good starting point am sure others will pop on soon. There’s links on mine to others as well. 
Chemo  radiotherapy is hard. Was 61 if I can  do it anyone can. Ask any questions. 
Try not to worry about finances work will depend on what you do. A few nanage ti work from home most take 6 months or so but everyone is different. 
Hazel x

Hi hazel thanks for the quick response not sure what hpv status I am yet had never heard of it before last week , been with the same faithful partner for over 20 years so not sure how it’s happening x

Hi Tim I’ve  been married to same  guy 44 years so don’t even think  about it  google will say it’s sleeping around etc kerp off google. 84% of the worlds population has HPV a few of us our bodies don’t get rid of it snd lo and behold it pops up years later. John and I joke that we’ve been passing it ti each other since we met as teenagers !!!

Am sure your  consultant will advise in due course. Just remember head and neck cancers respond extremely well to treatment and if you are hpv it’s a bonus as they respond even better. It’s scary I only had the lymph node which alerted me not any other symptoms. My oncologist apologised ti me said he would take me perfectly fit and healthy as low as I could go but he would cure me. He did both.

Stick with us we all will help

Hazel  

Hi. I had diagnosis of hpv 16 positive, right tonsil & 1 lymph node in neck. I had bilateral tonsillectomy in Jan , PEG fitted in Feb then 6 weeks of treatment. 6x chemo & 30x radio. 
Consultant explained that the virus can lie dormant in the body for years/decades before presenting. It could date back to the 1st kiss a person had as a teen…

As Hazel says, stick with this forum  We will all answer your questions & share our experiences  

I am nearly 8 months post treatment & returned to work about 6 weeks ago  

Nine years now since I started playing this game Tim (still have no idea of HPV status, I never asked) and my way of dealing with it was to just put total trust in my team. Some want details but I wasn't ever interested; I just asked what the most likely outcome was and they said complete cure, that was enough for me.

Not suggesting that's the right attitude for everyone, there's no right or wrong, but it worked for me.

Stick around here, loads of good people with tales and advice, you'll be OK!

Hi Tim

welcome from me too.

I'm nearly 4 years clear of HPV positive tongue cancer....there are tonsils in your tongue and that's where mine was.

The classic presentation of tonsil cancer is a swollen neck lymph node. 80% of tonsil cancer is HPV and 95% of us are cured. Not bad odds

HPV remains latent in infected cells for years before it causes cancer. You can have caught the infection 40+ years ago so chill about any ramifications regarding your sex life.

RT is a difficult but the side effects are manageable. I have an overview in my blog but a good place to start maybe is to look at one of our forum members who has posted a detailed diary in his profile. Just click on MarkEL

You are early on in your journey so beware of info overload. Stick with us and ask your questions as things arise. Do it day by day and you'll get there. We all do

Don't bother with Google

The best places for advice are your team and here.

Best of luck

Timbo66 said:

and worried about finances

Macmillan have some decent advice on finances and cancer HELP WITH MONEY AND WORK

Just click on the link in red and scroll down the page a little

You can reckon on being off work for six months...less if you can work from home and have a phased return...but that is just a generalisation as we are all different.

You can get a prescription fee exemption certificate from your GP to start with

Hi everyone thanks for all of your replies and positive feedback feels good to know there are people who can offer advice and share there experiences and that there is light at the end of the tunnel, still feels so real and very daunting but I’m sure it will turn out good in the end , I will say im well over the hpv situation regarding how could this of happened and never thought for a moment my wife would of been unfaithful, she’s my rock and has been since I met her , you guys are great and I’ll definitely be sticking with you all for advice and not google 

manythanks to you all 

Also just wondered is a peg for life , or temporary 

tim

I had PEG fitted in Feb & used it from week 4 of treatment. I had a small pump that ‘fed’ me 3000 calories of liquid feed each night til end of May when I was managing to eat a few foods plus a Scandishake a day (600)calories)I had it removed in June.