Tonsillectomy

Hi PD60 and welcome.  Slightly different to you but they had 2 attempts at my tonsils.  The first a large chunk was taken looking for the cancer and then both were taken as a precaution as they could not find the primary.  I had other bits taken as well as a precaution.  I am relatively unique in my cancer pathway.

You talk of tonsillectomy and tongue pain.  I assume the tonsils have settled down by now.  Normally by around day 10 the pain subsides. Thus I am guessing they did some surgery on your base of tongue and that is what is causing you some issues??

I've had 3 operations on my tongue and none of them have caused any form of long term pain for me.  Others with more extensive surgery may have different experiences.

That said 4 weeks is still quite early on for surgical recovery from a major operation - as an example adult tonsillectomy is on a totally different level to childhood tonsillectomy.  At this stage I would certainly be going back to either my clinical team or my GP for help if it is causing you distress.  You should not have to suffer significant pain long term.  It may mean they need to adjust what you are taking until it all settles down.

Thank you for taking the time to reply Peter and I wish you well on your journey. 

I should have given more details; no, I didn't have any other surgery apart from the tonsillectomy.  The Consultant said that as the tonsils are a seedbed for infection it would be better to have them removed. I did ask was this normal procedure but the reply was  vague. As you note the pain did subside after 10 days or so and shortly afterwards I commenced treatment; 30 days high dosage radiotherapy to mouth, medium dosage to neck plus 6 days chemotherapy over 6 weeks . The hope is that the radiotherapy shrinks the neck tumours to avoid the need for what they called 'invasive surgery '.

My pain relates to the radiotherapy on my mouth; my tongue feels inflamed when I speak ir swallow.  The medics told me this should pass 2 weeks post-treatment but getting worse 4 weeks post-treatment. 

I also have significant constipation but thankfully the skin on my neck has healed.

It is very humbling to read some of the life histories of people on this forum and I would like to help others if I can based on my experience 

Hi PD and welcome. I too had cancer in the base of my tongue but no nodal spread so I avoided chemotherapy 

I had 30 days RT

Im often confused why the medics tell us we will feel better two weeks after treatment ends because it’s never ever true. 
Radiotherapy has a residual effect for 2 to 4 weeks after you finish so you do actually get worse for a while. 
4 weeks is really early days. It’s a generalisation but most of us feel a little better by 6 weeks and turn a corner at 12. It’s still a long plod so I reckon you’re now where near any semblance of normal till a good six months. Even then improvements continue to 2 years plus. I’m over 3 years out and still finding improvement. 
My advice to you would be to make sure your analgesia is enough even if it means upping your morphine. I wasn’t off opiates till 12 weeks and then came off slowly. 
It’s not a race. You will get there. 

PD60 said:

I also have significant constipation but thankfully the skin on my neck has healed.

That’s the morphine. Make sure you’re taking enough movicol or laxido. You can take 6 a day safely I was told. 
And  yes, the skin heals quickly once it’s not being irradiated. 
How’s  you’re eating by the way? 

Thanks Dani.

I'm currently taking 2 laxido per day as well as 2 sodium dicousate.

My eating is challenging ; my tongue feels on fire and as if it's too big for my mouth.  However, the weight loss has steadied and no serious discussion on tube feeding.

I think the approach to H and N cancer is different in NI (where I'm based) in comparison to rest of UK, particularly when I read this board and your helpful blog. 

A day at a time. It’s not a race. I know how disheartening it is but six months from now all this will seem like a dream. 

Thanks Dani, that's reassuring 

All is clear now!!  Others will be far better placed to advise of the post RT recovery as I stopped at surgery only.  Almost certainly the constipation is caused by the opioids.  You should have been prescribed some laxatives.

Sorry I just hit the report button by accident.  No problems with your reply - just my finger trouble.  You don't seem to be able to reverse this particular accident!!

PFJTHS said:

Sorry I just hit the report button by accident.  No problems with your reply - just my finger trouble.  You don't seem to be able to reverse this particular accident!!

Hi Peter. If you have time can you report how annoying this is. I've been banging on to the mods to see if the techies can make this a two step procedure just like deleting a post is.

Thanks

Hi. Welcome from me the others have said most if what I would say. 4 weeks is still early we all get told the magic 2 weeks don’t know anyone and I’ve been at this 3.5 years. I had 35 radiotherapy and chemo . Take ot one day at a time some days 2 steps forward and 1 back. My blog below  will give you some indication of how my recovery went.

Hope it helps any questions just ask. 
We all get there some  take longer than others . I’m still getting slight improvement s even now. 
Hazel