Mouth cancer in jaw and jawbone

Hi Alboyg and welcome to the community. I can answer some of your questions and there are folk who have had a similar operation to you who can fill in the rest.

First, well done for making such a great recovery from what is a very major surgery.

What you are feeling is the normal grieving process and we all suffer to some extent. there is an excellent article by psychologist Dr Peter Harvey who is attached to Leeds Hospital HERE It explains really well how we feel and why so please do give it a read and pass it on to your nearest and dearest too.

It does get better but there is no harm in asking your GP for a mild sleeping pill to get you over the hump.

Radiotherapy is, I'm afraid a pretty brutal treatment and there are some significant side effect associated with it. It largely depends where its targeted. From what you've said it's likely to be your neck on one side where they found the cancerous lymph node and the mouth.

You're likely to get very sore and find it difficult to eat but the pain is manageable and there are ways round getting proper nutrition, from soft pureed foods to replacement food via tube.

Your neck m might burn but again you'll get medication for that.

You're submandibular salivary glands are going to get a dose probably and salivary glands are particularly radiosensitive so they will stop working leading to a dry mouth once the mouth has healed. Hopefully the treatment will spare one of the major glands under the ears. Something to ask your consultant.

Please do take really good care of your mouth hygiene. It's vitally important both for coping with the treatment and for keeping your teeth which are imperilled by lack of saliva.

Radiotherapy makes you very tired so just go with the flow, try gentle exercise but don't fight it. Time to watch rubbish tele or read all those books you promised you'd get round to.

I didn't have chemotherapy so can't comment mush on that, except to say it makes some people pretty nauseous and the chemo team will give you medication for that.

Issues will arise as you progress through treatment so please stay with us for support.

It's hard but doable....

Best wishes 

Thank you so much for your hastey response,  I really appreciate the detail given from your own experiences.  What a brilliant community this really is, can't thank you enough. 

1. Hi Alborg Dani has pretty much covered everything. So welcome to the club none of us wanted to join. 
   aAs fir Christmas emotions suffice to say it’s pretty normal that first year. I was 3 months post radiotherapy for tonsil cancer with several affected lymph nodes. For me I was waiting for scsn ri be done and resumed I’m pretty leval headed but I did find myself popping notes it boxes for the following year just in case I didn’t make it. We had a laugh the following year when yes I was still around to read the notes I had left. 
   I am now 3  years and 3 months into remission. 
   Chemo radiation is pretty brutal but if I could do it anyone can. I had 2 out of a planned 3 chemo type cisplatin. The best advise us take it day by day and take your meds as directed by the team I was lucky wasn’t nauseous. But if you are ask team fir stronger anti sickness pills as we are started on the cheapest meds. 
   well done so far on your recovery you’re doing really well   Any questions just ask 

Hazel x

Wow Hazel,  what a wonderfully inspiring experience.  I'm so pleased to hear about your remission,  you must look at life in such a different way now. Your story is so helpful for me to anticipate the next part of my journey. So grateful for your response,  now you can go and enjoy another of your 'extra' Christmases xx

Hi,Alboyg, welcome to our group we are all here to help each other as much as we can, so ask any questions you may have. Dani and Hazel, have mostly covered it, although I would add if you are offered a feeding tube ie. a PEG or a RIG, it would be my advice to have one, it will take the worry out of eating, if it becomes difficult to eat during and after your treatment. All the best.

Regards Ray.

Hi I certainly will do. Our mottos has always been one life live it. I am a glass half full person by my nature so I took a positive mental attitude it wasn’t going to best me. We’re all here to help you however we can. 
Hazel x

s has for sleep before treatment started I slept fine during treat I was up several hours most night mouth  hygiene n g tube feeding. But once everything had down I now get 8-9 hours most nights. Dry mouth may be with you fir a while the need to sip water during night fir me only stopped about 6 months ago but I coujd drink in my sleep 

Thanks Ray, I really value your advice. I can only imagine the pain right now, but I'm ready for it mate.

Thanks again Hazel, I'd give anything for a good night's sleep right now x

Just don’t stint on analgesia. There’s no need to be brave. Pain killers work best taken by rote, spread through the day before pain becomes difficult. Morphine and don’t forget the laxatives as opiates slow your gut down  

You're welcome, as for pain,  like Dani has said you will be given painkillers, so don't suffer in silence let your team know, when you need them.

Ray.