Hi nm  is no metastatic ie spread to other organs so we deffo don’t want that , T3N2 isn’t a million mikes different from mine , yespmthe h p v status does help,as the rumour responds well to treatment m saying that I know plenty of others who have successfully gone through treatment  ithoutbthe h p v status .and like me come out the other side. 

This time next year yiu will look back at this time and Ben well in the waybtonrexover ,positive mental attitude is what’s needed along with anything else yiu can throw at it ! 

Radiotherapy doesn’t hurt it’s just the side effects but we are so lucky having a brill N H S and at cancer level they aren’t spot in , where’s in U.K. are your? 

Hazel, please keep in touch 

Thanks Peter - He will be fine with the mask after a while - basically he has to be!  The nurses are lovely though and have said they will find some music for him  Trying to get him into mindfullness although I know it's not for everyone  

So glad I found this chat- it;s so reassuring  He had a PET the other day whcih shows it hasn't got any bigger and hasn't spread thankfully so fingers and everything else crossed.

Thanks for all your help- I'm sure I will have lots of questions

So gald things are back on track for you 

x

Hi. I am sure your husband will cope with it all and come out the other side fine. I'm 13 months post treatment and only remaining side effects are some foods still to dry/chewy to swallow and dry mouth continues. Apart from that 100% clear and basically told it won't come back. 

I actually enjoyed the mask fitting, it's nothing to be scared of. Side effects from about halfway through treatment to a few months after are difficult but as time goes by things get easier. I had 2 x Chemo and 35 x radiotherapy. Recovery period is 2 years after end of treatment and progress is fustratingly slow. I still have 11 months to get "as good as I'll be for the rest of my life" in twerms of swallowing and dry mouth. No-one will be 100% but some people are less affected than others.

The way I look at it is that if I had to live my life in the condition I am now I'd be okay. Yes I'd need sugar free gum and water for dry mouth and there would be certain foods out of bounds, but in the scheme of things they are manageable. Any iprovements from here I'l see as a bonus. I've a feeling my swallowing will have some more improvement in it as it has been gradual ongoing progress. Dry mouth I think I'll still be affected by at the end of the 2 years, but that's just my guess. 

Overall, if you are going to get cancer, it's not a pleasant one to go through, but the cure rate is huge, so it's one I'd take over a "lucky dip" of other types of cancer. I guess we all know people dignosed with incurable cancer.so I class ourselves as the lucky ones, that can recover and have a near to normal life after it. If your husband approaches it with that positive mindset it will do him good. There's nothing really to be scared off, it's just the side effects from the radiotherapy are s**t for a few months. But the main thing is that you end up on the right side of the turf!

Good luck with it all, as it seems massive at the time, but after a year I can now look back and see it as just an incovenient illness I had to get over. The bad memories of the side effects fade over time and your husband will think less and less about it as time passes, until it's just a distant illness in the past that he took on and got through it. Again we're lucky that it's not a major life changing illness. Normality will return to your life as well, as I think my family and close friends were more scared about it than I was. Maybe re-assuring all the people close to you that he'll get through it will be a good thing for you to do for your husband. Putting their minds at rest is important I believe.

Hi hope everyone is well.

Husband is 2 weeks in now and doing pretty well.  Up until today he was eating and drinking pretty normally but the inside of the front of his mouth under his teeth has suddenly become very sore.  Whilst we were expecting this it's not in the area we were expecting as it's nowhere near where the radiotherapy is hitting.  He says it's worse than his throat.  

We were wondering if it's something to do with the toothpaste???  Did anyone else experience this amd were there any particular toothpaste bands that seemed better than others.

Thanks 

He was always going to be a strange one!!

Hope all went well on the 6th Hazel x

Hi glad he is getting on well with treatment , have they given him prescription toothpaste ? They gave me Colgate duraphat toothpaste , but also think it can affect anywhere in the mouth, at one point my whole tongue was nearly white , was covered in ulcers , best thing I found was gargling and rinsing mouth with salt warm water , also dispersable aspirin , as that kills pain.  Don't know if any of that is helpful , but worth a try , the side effects are not nice, I can still barely eat , only couple things I can actually swallow , and I finished treatment middle August , but every one is different , hope that has helped , and tell him good luck

maria

Hi , yea I hope so too fancy so many things lol but most are a no go , yea the aspirin thing I was told by a pharmacist that I work with to try them , and they do work , anything is worth a try xxx

good luck 

Maria xxx

Hi yes meeti g with oncologist went well , he want to see me every year up until 5 year mark .i am a bit of a project for him m a female with what is predominantly a male cancer ,only  % of females get tonsil cancer h p v 16+  so he say  he says I am special .i see local ent every 3 months now uo to 3 year mark  then every 6 month.

I was also given Colgate duraphat toothpaste which I have to use forever now, it’s on prescription and fluoride based.ordinary toothpaste no use , plus he will need the softest toothbrush yiu can get , mine weee from amazon called curaprox 5400 bristles .also like Maria says mouthwash with dissolvable aspirins . Warm salt washes and if he can stand it baking powder  as well keep,away from any shop bought  mouth washes as they have alcohol in them even the zero alchol ones unless you get  prescription ones.

mouth  ulcers can and do appear overnight hubby will start to get to nitty gritty part soon any questions just ask

Hazel,x

Thanks Hazel   So glad it went well.  I'd agree you are definatley special!

He's going to ask about the toothpaste on Monday..  I think someone mentioned it but he never actually got a prescription 

Nitty gritty is clearly on the way

Thanks so much for the advice everyone it really helps to talk to people that have actually done it.!!