Hi Ian

i am 7 weeks post radiotherapy hang

In there it’s a tough road I did 35 radiotherapy sessions 2 chemotherapy.

i have also done a blog www.radioactiveraz.wordpress.com takes u from diagnosis to present day.newlymarried on here is good if u have any questions just shout out. Mine was HPV 16 + cancer of right  tonsil and lymph nodes 

hazel aka RadioactiveRaz 

good luck 

Hi hazel I see this was 2018 I was wondering how you got on and could tell me the treatment you went through , I have just been diagnosed with tonsil cancer and going for my first CT scan tomorrow any info would be gratefully accepted.

Thank you, I massage my neck to help the lymphoedema but the consultant said it may come and go for the rest of my life, 6 months post treatment I've got to be happy how things are progressing 

Yes, you're very right. We're finding happiness in all the small things he can do.

Hi Robert. Takes time I never lost taste but I had have Accentuated tastebuds which is just as bad. Everything fir me was hyper taste eg tiny bit salt tasted like the Mediterranean Sea. Rule of thumb turning point 6 weeks after treatment then around 12-13 weeks for me although one week I could eat something try week later or a chance. It's trial and error I found one step forward 2 steps back some weeks. Don't expect too much ftom c t scsn the pet scan is tge big one remember our cancers  do respond extremely well.  Treat recovery  as a marathon not a sprint and you'll get there. 
Hazel x

Matt

Please speak to your support team as it sounds like you really need to be on morphine.

Its a tough time but they should be able to manage the pain with the appropriate dose.

I was on morphine at same stage as you and I had to go on MST tablets as well as oralmorph for a top up as and when needed.
The MST tablets are taken once in morning and once at night, last 12 hrs and are therefore in your system 24 hours a day. They can also adjust the dose and strenghth of.

hoipefully they will be able to start on your pain relief pretty much immediate and co codomol wont really be enough to control in most cases. Most of us on here were on morphine and thats what its there for and should hopefully give you some comfort and avoid the severe pain you describe.
Ive also posted link to my blog that has timelines and doses during my treatment and recovery and hopefully this will help. Remember you may well need to continue morphine after treatment and during recovery for a bit

radiotherapythroat.home.blog

kind regards
Ian

Robert,

we are all different and probably various timelines as to food and weight.
Part of my blog goes into a detailed section from advice I had from my dietician.
can be confusing as I was told to up calories at one stage when losing weight by eating creamed puddings,full fast yoghurt etc to get calories ie fuel into body to help recovery.
I was then told to cut back on calories and eat more healily.

I was given really good advice on good and bad calories as they put it and when and when not to take.

I posted on this thread some time ago somewhere but prob quciker heading to my blog if you were interested.
I struggled with food for some time, was on ensures for ages and its slowely just started to come all back bit at a time and then whoo and hoooo I havnt looked back since and can eat lierally anything I want, including spicy curries. There is nothing I can think of that I cant eat now that I didnt used to and totally back to normal choice of eating.
I liked a quote that I was given and told that there is no elevator option for recovery and we all have to take the stairs. - but we do get there in the end.
I promise you will as well and just a time adjustment until you start enjoying food again rather than have food as a medicine ( which it is for a time )

radiotherapythroat.home.blog

kind regards
Ian

I couldn't have put this any better,although I'm 1 month behind your partner things have improved gradually, I can now eat crisps although I have my water next to me, last night I had my first curry, tongue/mouth tingled and I only eat half of it but another step in the right direction, for the guys who have now finished treatment you will get there,follow the advice of people on here I did and still do, but you have to be patient 

Hi Chrissy had your hubby had his dilation done yet ? Was thinking about him and you today. 
hugs Hazel xx

Hi 

yes Hubby did have the procedure. Unfortunately it hadn't works. He was told it might take 2-3 procedures to work! 
 

thank you 

Hi Chrissy. Bug not what you want to hear was hoping it worked first time for him fingers x for next time .

Hugs Hazel x

Oh wise one  
It's a darn shame it didn't work first time. But hopeful it will work out in the end.

Thank you Hazel

Chrissy x 

Oh wise one  
It's a darn shame it didn't work first time. But hopeful it will work out in the end.

Thank you Hazel

Chrissy x 

I'm sending Yoda healing hugs for the next time .Reminding ebp everyine  this month to remember ti get thyroid bloods checked annually as well. I'm one of lucky ones at leastb50% of us end up of thyroxine for under active thyroid. Ask ent consultants for referral for bloods ti get TSH  and t4 levels  checked. 

hugs Hazel 

Hi all

Just popped on to say hi and although I haven't commented recently I just wanted to mention that if anyone is having problems with swallowing- gastric pain post treatment- my hubby is 6 years post chemoradiation and neck dissection please get it checked out. Apparently you are more susceptible to Barratts Oesophagus- can be a precursor to oesophageal cancer - if you've had chemoradiation for head and neck cancer - and my hubby has recently been diagnosed with it. Luckily its only a short segment and only needs monitoring at present but just to make everyone aware its a risk factor. 
 

Anyway just thought Id mention it in this thread as Hazel was reminding everyone to get their Thyroid levels checked - hubby has a damaged thyroid too ! But as he says he's still here and living life to the full which is the main thing.

Onwards and upwards 

Good luck everyone xx

Emma 

Hi Emma Good reminder. 
scarily  it's 4 years since my treatment started you were my rock then and still best friends. 
Hazel x

Yes I mentioned here before , its affected my thyroid, subclinical no meds so far. And acid worse so got ENT  to look at esophagus too.  Its serious treatment  this. Latest scan fine, 3 scans to go till 5 years are up.  I never assume anything. Its changed me mentally. This forum helped / helps. Onwards  mis amigos xx

Oh wise one. 
I forgot to ask about thyroid!! Next time.

Consultant doesnt seem to think another dilation will work at all. As the gullet is so tight it might tear!

Going to do another videoscope to see if these was is any different made by the first dilation. I'm hoping to ask for a referral to Guys. Hoping someone will have an idea  

If he could swallow his silivia that would be great  

Tube feed with not end! 
 

Chrissy B 

Hi. Chrissy oh dear sorry to hear re dilation. As for thyroid check if you have a cancer nurse give her a call sm sure she can arrange  one I know mine can. It can't hurt to ask for refferal know Vin Paleri is doing amazing surgery. 
please kerp in touch 

Hugs Hazel xx

Oh yes. We watched a prog "Super surgeons". He was on it. 
I must get on his consultants case!!!! 

thank you 

Chrissy xx
 

Hi Chrissy excellent programme shows what they can do to help us. 
yes please do. 
Hazelxc

Hi,

My mam completed treatment for tonsil cancer hpv pos in June 2019 and got all clear in September 2019. She has been doing so well but over the last 8 weeks developed a hard tender lump in shoulder collarbone area on same side that the tonsil cancer was. 

She was recently in for a camera test as part of her checks and that came back clear but she asked them to check the lump and they've referred for a pet scan which isn't for another 3 weeks. We are worried sick. Has anyone any advice on what it could be? I'm terrified it's back and gone to her bones or something but trying to not think the worst as i know hpv cancer is very treatable but im not sure on the likelihood of reccurance or mets.

Thanks 

Olivia

Hi Olivia sorry your mum going through the waiting again. Yes h h p v cancers are eminently curable and reoccurrence s are extremity rare but they can occur. A pet fct scan will show if there's any active cells remaining. If it helps any my lump in my collarbone wasn't sore or tender it was just there. I know it's no help but try to remain positive dud the consultant do a fine necks biopsy ? Hoping for the best for all of you 

Hazel x