Hi Jane good luck I am 8 month post for tonsil cancer with lymph nodes surgery wasn’t an option for me as one lymph node was in oncologist words to close to spine at top of neck to operate. So I had 35 rad n 2 chemo. Re eating if you look st my blog www.radioactiveraz.wordpress.com yiu May get a few tips my main one was buying a humidifier for bedroom at night n nap time plus curaprox soft toothbrush off amazon   Plus duraphat toothpaste dentist will prescribe that. If u can do crusty cream cheese on toast I’d a high calorie food that I could eat easier than bread. Chocolate has come back to me now. Try adding extra cream n butter to things plus Manuka honey yo your warm water I survived a few weeks on that also had the nasal feeding tube in for a total of 45 days 

positive mental attitude which seems you’ve got is a big help 

good luck keep us posted

hazel 

Thanks Hazel

so pleased you are more than one step ahead. I’ll definately be reading your blog in bite sized chunks if you’ll excuse the eating pun. Am off to carbo load as no weight to lose as things stand.....

jane x

Hi I lost 2 stone but loaded nearly a stone on in lead p magnum ice creams became my food of choice but u can’t do chocolate sorry 

If u can still eat nuts n crisps they are high  my weight is stable now but food no longer holds the same pleasure as it did occasionally I will enjoy something but small price to lay am sure it will all come bs k

Ps h p v is the best marker to have it means cure is a good possibility it give us an extra 20% chance taking it toward a 90 % for 5 year which is as good as u can get if that helps 

h x

Hi Jane. Thanks for the detailed update. 

Interesting that you were presented with surgical options without radiotherapy or chemo as adjuncts. Robotic surgery is not yet available at my hospital otherwise I would have seriously considered that as a single modality treatment option for my own HPV driven tonsil cancer with involved neck lymph node. For tonsil cancer I gather surgery alone can succesfully provide the definitive treatment.

My own pathway is very much a 'belt and braces' approach too; tonsillectomy and (open) lateral selective neck dissection followed by radiotherapy. I was pulled from chemo after two sessions. I had big reservations about chemo and declared a low threshold for stopping that. I decided after a second session that it was making me too ill (poisoned) and remained concerned about long term effects. However, and by coincidence, the oncologists decided to stop it anyhow.
What I am particularly pleased about, and remains to be seen if  the best course of action, was early surgical intervention. I had a single, albeit fairly well contained, involved neck lymph node without any extra capsular extension. That jugulodigastric lymph node was removed together with its associated chain following a laser tonsillectomy. Histopathology put me into the lower order of further disease risk. So with both tonsils and lymph nodes gone I *felt* disease free. The surgeon passed me on to the oncologist and who stressed the "belt and braces" approach.
Radiotherapy and chemo was to 'mop up' any potential undetected rogue cells. One parotid gland has been spared radiotherapy in order to minimize long term saliva issues (good call). 
I had little pain throughout and so, aside from post tonsillectomy codeine and paracetomol, avoided any major painkillers.
Hope all goes well with the NG tube.  I used a PEG for about 10 days and arranged to have that removed a few weeks after radiotherapy. Maybe a NG tube would have been a better idea. Now I have a weird extra 'mini' belly button. Nobody mentioned that when they said it was a good idea before treatment.

 So far, and all credit to the staff at my hospital, all is going much better than expected. I am in my second month out of treatment. With luck I hope to be able to look back in a years time and wonder what the hell all that was about.. as little but a distant memory. I remain optimistic but still bloomin' scared and waiting for my post-treatment PET scan.

The purely surgical approach sounds like a GREAT option and by all accounts provides an excellent result.
It appears that you will escape the taste loss purgatory that radiotherapy creates. It will still be some time before I am out of the woods in that respect. But that said I too am good with most things including crusty bread and few if little salivary or swallowing issues. I just want much more of my taste back.  It's not that bad tho and great to be enjoying sweet things again. Hot cocoa with melted chocolate has become part of my daily self medicating routine.

Please update with your progress. I wish you every success with the surgical road ahead.

All the best

Paul

Hi Paul 

am doing great I am now 6 months post treatment still have to carry water about with me at all times and diet is terrible still no weight gain but an the plus side back working and living my life as thou it never happened, but obviously its in the back of my mind a small worry hear and their then push it away as for food avoid spice at all costs I have totally changed my tastes due to being scared of any spicy food lol so go easy on yourself how long has it been post treatment and you will be glad of no peg 

enjoy this lovely weather just keep your neck well covered in the sun 

cheers Maria 

HI Maria
Good to hear all is ok and great that life has returned to the usual routine.
I am well aware of the spicy food issue now and finding far too many things start an intense fire on my tongue. A matter of adaptation I guess. Tricky tho. I hope that all resolves with time.
Agreed the PEG removal has been a huge improvement. I sorta kick myself for only really needing it for less than two weeks. It seemed like a lot of trouble but I guess it helped get me past the worst.

WIsh you an excellent Summer.. once it truly arrives. Still a bit frosty in East Anglia! 

Enjoy life.

Paul x

 

Hi hazel 

I Know me and you are of the same timeframe with our lovely treatment, I think I have maybe been eating the wrong foods over the last few weeks and sometimes feel sensitivity in my throat/ tonsil area so you ever get that? I am now back on the Manuka honey as it always settles it down I suppose I have to remember that it’s always going to be sensitive and adapt again to what I eat, and also I suppose we just try and forget it was ever their? Or maybe it’s my body telling me to slow down again lol hope your enjoying Spain and the weather is great for you x

Hi Maria. Yes we are quite similar in timing I am 8 months nearly post radiotherapy. Yes agree re spicy things we went out with friends only for a Chinese thought I woukd be brave n try a tiny piece of Johns spicy duck omg it’s a wonder the  uk didn’t hear me from Spain. It was a piece smaller than a finger nail but my tongue knew about it fir weeks. So as they say keep trying so last week I had slow cooked lamb fine John had fajitas so again tried a  tiny piece I must have got all the spices and tongue is still reeling. It’s all about adapting n trying .luckily I rarely drink before n no way is alcohol touching my mouth !,on a plus side finally can use myldctruc toothbrush. Do your teeth on fully radiated side still  feel furry ? My saliva is slowly returning no some days I have a eureka moment and mouth feels normal but others  like a tube if superglue. But hey not moaning at least we r alive. Yep another few weeks over here biked 500 km walked 300 done two 1000 ft mountains. Keep in touch h x

Congratulations Paul, it’s a great feeling to know your back on the right track and can enjoy your summer just make sure you use factor 50 and a hat when out in the sun, 

i am now every 8 weeks so am back up in a fortnight to get that dreaded thing up my nose, I was also discussing side affects with a fellow warrior the other day who politely told me that her side effects are far worse than mine due to her having more chemotherapy than me, it kinda made me feel a bit *** and think was it really that bad for us or maybe people are just so niave to what we have to go through and also as their real is not much publicity on hpv cancer and it’s not really as important as other more common types anyway we all know what we through and it wasn’t a walk I. The bloody park 

cheers Maria