Left tonsil cancer

Alij1 said:

My  uvula and roof of my mouth seems to have dropped and it’s nearly dragging on my tongue and it makes my heave sometimes. It seems to have narrowed my ability to swallow thicker foods like mash. Is this part of the recovery and will it all move back up where it’s supposed to be?

Hi. Well done on getting through. 
I think you will find that your uvula has practically been zapped to a stump which will make your whole soft palate look lower. You’ve lost the dangly but for ever but everything else should start to look less swollen in time. The gagging is made worse by sticky saliva. 
Mashed potato is really hard to swallow this early. Try sweet potato instead. Your throat muscles will be weak so you need to strengthen them. Are you doing g your swallow exercises every day? That will help rehab. 
Recovery is a marathon. Just take your time. 

Thanks Dani for replying. I can still see my uvula just about but it seems like the roof of my mouth has lowered. Is this just swelling and will go back in time?

Sounds like it. When is your next review? You could ask then but for now it doesn’t sound anything to worry about. Work on your swallowing. Six weeks is still very very early. I wasn’t happy with my eating for six months. 

Thank you for replying. My next review is dec 10th, so I will ask then. It just frightens me as it’s so low and uncomfortable to swallow

Alij1 said:

It just frightens me as it’s so low and uncomfortable to swallow

Try not to be frightened. Your throat has had a real battering and takes a long time to recover. Most of us do very well though we are never exactly as we were

Hi my uvula melted away. The swelling will go down but if takes time I was a good  6 months before I could try mash potato it’s too sticky. Sweet potato is easier but that took time. Poached  eggs were one of my main sources of protein. They slip down. Then eventually andded smashed  avocado. I ate weird combinations of food for a long time it was all about calories not enjoyment for me. Double cream added to soups cream cheese tj scrambled eggs. 
do your swallow exercises and jaw ones regularly I still do mine even now and will do forever they are routine now  

hugs 

Hazel xx

Thanks Hazel, that’s reassuring to know.

Hi,

I had only the right tonsil taken out and like you, my uvula rests on my tongue. I asked about this at a previous check up and my consultant said that it was because muscles had been removed and everything has stretched around the resection site. 

Im almost a year out of treatment and if it reassures you at all, I am far less aware of it now than I was back then. I’m aware of it yes but I’ve almost grown used to it. 

Hi Dani, my brother is due to start Radiotherapy 22 Dec for tonsil. Yet to confirm if chemo required, but no surgery needed . His biggest fear is pain. Now I know everyone different but what was your experience and have you any coping strategies. The oncologist seems to have implied, meds won't deal with it. 

Thanks 

Fiona

Hi Fiona,

You are right - we all have different pain tolerance levels.  I would say that the tonsillectomy pain is worse than the RT pain.  However, the tonsillectomy pain lasts around 2 weeks whereas the RT pain builds slowly during treatment and then slowly diminishes over 2+ months post treatment.

Drugs will not deal with all the pain, but they are pretty effective at making it manageable.  2 things are essential. 

Firstly take the drugs prescribed on time every time - even if you think you don't need them.  It is about maintaining a level of the drug in the system.  Often you can stagger the various drugs to keep a level of pain relief fairly static.

Secondly tell his RT team about every change in pain level and if the prescribed drugs are working or not.  They are his key to making sure everything is as comfortable as possible for him and will normally move heaven and earth to get someone to see him to review the drug regime if at all possible.

Don't be scared of the heavyweight drugs.  He will not be on them long enough to become addicted and they will keep a close eye on how he is using them to make sure he is safe.

Finally you may be surprised as to how effective paracetamol is especially in the early stages of treatment and the later stages of recovery.

I hope all goes well and keep asking the questions.