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Recovering from Tonsil Cancer

julesey7
Posted by

Oh my goodness sorry it’s just me trying to get back to my conversations etc - the site amazing I’m not complaining at all. I just have trouble finding my conversations but I go through the email links now. Not a problem 

thanks for checking I appreciate it 

Kindest regards 
julsey 
shaunk
Posted by

i cant find the right place to post anything so if this is wrong ,sorry but i ain t got the patience,i have cancer of my throat or tonsil or somewhere like that,they havent actually told me exactly where as it was hard to confirm , had a tonsillectomy which was painful and am just about to start chemotherapy,they said i might have to have some teeth removed just in case  ,is this a must ? im not keen on any more moth surgery i just had a double hernia done 6 weeks ago then got the cancer then a tonsillectomy so id rather avoid invasive stuff also is the stomach peg a must ?

Shaun 
missFitz
Posted by

Hi Shaun, you could post in the Head and Neck Cancer group. Many people on there had tooth extraction before radiotherapy treatment and they can offer good advice. 

I’m sorry to read your new diagnosis and I wishe you all the best for treatment 

Carrie 

Carrie 

latchbrook
Posted by

Hi  and a very warm welcome to the online community

I'm sorry to read that you have been diagnosed with cancer and that you now need to have chemotherapy. It's understandable that you're worried about having teeth removed and a stomach peg.

I can't give you any answers but if you join the head and neck cancer group I'm sure you'll get help there. To join just click on the link I've created (the writing in green) and then choose 'Join This Group' on the page that opens. You can then post your question by clicking on 'Start A Discussion'.

I'm also going to tag my fellow community champions  and  as they look after that group and can help you further.

Best wishes

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

REEVSEY
Posted by

Shaun

Tough deal mate, it ain’t nice or pretty! You’ll need dental work doing before chemo and radio because I was told that treatment affects the bone in the jaw and can deteriorate the blood supply to the teeth - as such, if you needed big dentist stuff done after chemo/tad then it’s likeky you’d find it difficult to recover as the likelihood of extra slow recovery or infection is especially high. My advice? Get any dental work done asap.

Check my other posts - I go into detail about my experiences but if you’re gonna have chemo and or radio in your throat area you will need a PEG at some stage. Don’t google it or watch the procedure on YouTube - you don’t need to know but the PEG will be your friend post treatment when your neck, mouth and throat are so sore that you can’t swallow.

My advice only, sounds like you’ve had a sh***y ride lately but it’s gonna be tough for the next six months so be prepared. Stay positive, look on here for support and we will all be able to help mate...

All the best

Reevesy - ‘Nick’

Reevsey
julesey7
Posted by

Hi Shaun, 

Sorry to hear yr diagnosis and I’m sure yr scared reading all these posts. 

My advice - Trust yr med team, if they suggest teeth extractions, do it, if they have suggested a peg, have it. I didn’t want my peg, but had it and didn’t use it much, everyone is different but at least it’s there if you need it.

The treatment is very tough but we have all done it and got through - take each day at a time. If you survived yr tonsillectomy then you can do this.

.....come here for help and advice in the dark moments because we all understand try not to google too much. 

Once you start treatment you’ll get into the routine and can count down the days. Then you get to the last day and can focus on recovering. It’s shit but dig deep 

Kindest regards 
julsey 
rickyc
Posted by

Hi, apologies if someone has already told you about this but you can get a pump that connects to your peg that does it all for you. My husband finished his treatment for HPV 16 tonsil cancer, which had also gone into his lymph node in April 18. It was a very difficult time, one we’d like to forget, but if we can help by helping you know that it does get better.  He has just sat here and eaten a Thai curry for his tea! 

At the time of his diognosis and through his treatment,   I researched lots, that’s how I discovered the machine. His mouth was so incredibly sore that he couldn’t swollow anything and it was a chore to keep having to syringe the fortisep drinks through. He attached the machine at night or day and it slowly pumped what he needed through, used it for water also. 

Rick had a full tonsillectomy and surrounding tissue plus a neck dissection to remove the infected lymph. Unfortunately after his surgery he ended up in hospital for another month as his neck kept swelling which turned out to be something called a chyle leak a rare complication that is when the thoracic duct is damaged during surgery. After spending ages with them putting compression bandages on(that didn’t work) his consultant finally agreed for him to undergo keyhole surgery through his back to tie it off. Thank goodness that worked as all this time he couldn’t start his treatment until neck healed and we were so worried of the timescale as they’d said treatment had to start within a couple of weeks. 

Anyway cannot believe it’s coming up to a year since he had the op. It’s a tough journey but one you will get through.  It may not feel like it’s ever going to end, but you will get there. Believe you me    the improvement in my husband is amazing, I’m so proud of how far he’s come along. He never believed he’d eat again let alone a curry! Keep positive and focused and remember it will improve.

Just remembered a humidifier machine at night helped also.

Husband not good at writing on here but please ask any questions and I can feedback to you.

Charlotte

shirley53
Posted by

Hi Reevesy I hope you don’t mind but I’ve been reading yours and julesys messages to each other and has been so good  for me to read that I’m not the only one going through all this awful treatment and hopefully cure, I’m on week14 after chemo and radiation treatment and finding it difficult to eat,I’ve had my body scan which detected an abnormality so yesterday had to have another biopsy, but specialist thinks it might have been an infection where the radiation burnt so far that it went to the bone, now the long wait for my results,hope you and julesy are both improving and feeling a bit better, I know it’s going to be a hard long slog but knowing your not on your own helps a bit.

regards Shirley.

Shirley.
REEVSEY
Posted by

Shirley

So, sorry for the delay in replying! Can’t begin to explain how cathartic this forum is. I’ve found that for me it’s been about off-loading to a degree - problem shared is a problem halved as the saying goes. What I will say is that it is really important to know that other people out there are suffering the same as you.

Picking up on your scan abnormality - I had an MRI recently and it showed ‘lesions’ in my spine and the radiographer jumped on it and stated it was suspicious! Needless to say I was very worried but my consultant looked at the Scan with his own radiologist and rapidly stated the opposite (apparently radiographers tend to send balloons up very early to avoid being sued!!). Having spoken with my Macmillan Nurse she also re-assured me that neck and throat cancers do not tend to pop up secondary problems in bone, soft tissue is the norm so it’s obvious to see how important it is to listen to the professionals and avoid reading into everything you read from others on here!

Been a few days since I updated my progress following my stretch last Monday. Had an uneventful weekend but have just sat down with a small bowl of Cheesy Penne Pasta with Bacon, Asparagus & Courgettes (yeah, made it for the kids). I sat and chewed very small mouthfuls into small manageable pieces and tried to swallow. Some went down but I found that a tiny sip of water helped with the second and third swallow. I believe that the saliva situation in my mouth is by no way back to any semblance of normal so I got the need for liquid help. I would definitely report for any of you looking for guidance after this procedure; I needed to swallow at times making my throat hurt as I could feel that the food was having to force its way down. I’ve come to realise that the only way to make this better is to do my own form of stretching and endure a bit of pain.

Thirty minutes later and having waited for the paracetamol to kick in I am ok but my throat does feel a tad sore from the workout I’ve given it! Any questions or concerns please don’t hesitate to ask..

Regards

Reevesey - aka Nick 

Reevsey
shirley53
Posted by

Hi nick thanks for replying, as you said it’s good to hear that we’re not alone with this terrible illness and suffering alone,although I’m sorry if I sound selfish, as I wouldn’t wish this on anyone,

I have my results on Thursday 24th and hoping for good results.

Just had small bits of chicken,mushrooms and poached egg, chicken a big no no just found it hurt so much after biopsy, so will stick to softer food at moment till it heals a bit more.

Its good to hear that it’s positive thinking that my specialist is thinking the abnormality was an infection rather than anything more sinister and with your McMillan nurse saying they don’t tend to pop up secondary problems, which has made me feel a bit more optimistic, I will let you know a week Thursday what the outcome is.

i hope you feel better soon and things start to improve for you,

best wishes and look forward to reading your next post.

regards

shirley.

Shirley.