Tonsil cancer t3n2m0

Hi Shell. Welcome to our little community. Sorry you have had to find us but now you have you’ll get plenty of help. 
Your partner, as you’ve found out, at the end of week three is when the side effects start. 
I don’t know what he’s been given by the hospital but I found it was crucial to keep my mouth clean using a soft toothbrush, an SLS free toothpaste and BioXtra mouthwash. 
Add gelclair and Caphosol mouthwashes. 
Difflam is useful to sloosh round before trying to swallow anything. 
Having said that after the end of week three I didn’t swallow anything but water for six weeks. 
Proactive analgesia by rote rather than reactive when pain breaks through is much more effective. 
I alternated oromorph and paracetamol and took long acting morphine night and morning. 
These are a few things I did
If you’re up to it there are more tips in my blog linked below.

Im sure others will be along pretty soon with more suggestions.
Good luck 

Come back when you have more questions and keep the faith. 
This cancer is eminently curable. The treatment is just a bit  awful. If I can do it so can he 

All the best 

Hi Shell 

Welcome to the forum, but sorry you had to join. Your partner has the same diagnosis as i had (i had tonsil cancer with spread to one lymph node) and finished treatment in september.

It does get quite painful during treatment - i controlled it with lots of pain relief drugs, i was briefly on cocodamol, but they got hard to get down so i was on oramorph and once i had got used to the oramorph i had a fentanyl patch as well.

I dont know what pain relief your partner is on, but maybe he needs it reviewing?

As dani said i found it much better to take the pain relief by rote instead of as a reaction to pain, BUT i cant emphasise enough that if on morphine it is best to regularly take a laxative, i wont go into details but i never knew constipation could hurt enough to make me cry. The hospital should give you laxatives.

Difflam did help a bit - i used to swish it before every sip of my fortisip (a liquid supplement)

So sorry for your loss, but as i am sure you have been told, this is a very curable cancer despite the awful side effects

Trev

Hi Shell sorry you snd your partner hsve joined the club none of want to be in. I was T2N2NM later found a few more lymph nodes had cancer as well I only had 2 outbid 3 chemo the radiotherapy is the main  even chemo is the gent and braces so don’t stress about missing chemo. Week 3 is when the effects ramp up keep on top of pain killers by rote don’t wait for pain to start. Hydration and nutrition are vital, blisters unfortunately part of the process I was prescribed gelclair deffo worth asking for it costs the mouth. Oral hygiene is also vital I used to spend at least 30-45 mins mornjng and night plus day tkne. I hope he’s got soft toothbrush I used bioxtra mouth wash again prescription.Mucus will also appear shortly I had a nebuliser provided dd by hospital worth asking I also bought a humidifier from Amazon. My blog is below bayou May gain a few tips snd links to other sites 

wecare all here if you need anything. So sorry you list your husband as well tk this horrific illness. 
Hazel x

Hi Shell71 and welcome.

My goodness you've had a very difficult time.

I can't add any more recommendations to the ones ready offered.  

As you say, the prognosis for your partner is good but the treatment can be tough.   Do keep in touch.  There are many of us on the forum who have been through similar treatments so lots of help and support available.

My best wishes to you both.

Linda x

Thank you for your help.we got some gelclair yesterday and they have given him some dissolvable cocodamol. Hope this helps him as he is struggling to eat now x

You’re very welcome. I hope he stays comfortable. If the cocodamol doesn’t do it then morphine usually does. Make sure he takes his laxatives once he’s on codeine 

I hope he’s fine with his PEG rather than struggling to eat. 
Best of luck. You’re doing a grand job. 

Do try to make sure your partner takes his pain meds about 30 mins before eating so they're at their maximum efficacy.

Hope the new meds help.

Linda x

Hi Shell. I’m eight weeks post treatment for surgery and chemoradiation for tonsillar cancer, including a neck dissection, and had the issues you mention to a greater or lesser degree. The only thing I would add to the others is that to keep my mouth clean I kept a jug of mouthwash made up from ½ teaspoon of bicarbonate of soda and ¼ teaspoon of salt in about ½ pint of water constantly on hand and swilled and gargled with it regularly. I suffered very little from tongue and lip blisters, even though the ulceration around the tonsil site was constantly sore and required analgesics. After eight weeks it does appear to be recovering nicely with no acute pain, so do be optimistic. It’s a rollercoaster of a ride but it does get better. 

I'm really struggling. Trying my my best to keep Wayne nourished, hydrated and meds taken on time. Mouthwash at the ready. He thinks I'm nagging. Getting angry with me now. Just had enough. Need some help  and advice

It might be best to step back fur a couple of days? I know I was rotten to my husband in occasion and if he left me alone I quickly came round. Just a thought.