Just saying hi - Hemiglossectomy- post surgery; pre Radiotherapy

Hi Panch 

welcome to our little select group of “experts”
At least it seems now you are on track and a plan is in place  

Try not to be scared  Radiotherapy itself doesn’t hurt but I’m afraid you will get a pretty sore mouth  

Make sure you pay attention to decent pain relief and you will get through it  

You’ll get support from dieticians to manage your nutrition and speech and language will give you exercises to keep your throat and jaw functional  

Problems usually start in week three  but although it’s tough it’s doable  

I was 67 when I was treated for tongue cancer and I managed. I’m 22 months in now and living a happy more or less normal life  

All this is to come so pop back as and when you have any more questions. We are all a friendly bunch with a lot of experience helping out. 
Good luck and let us know how you get on. 

Oh and stay away from Dr Google 

Hi Panch

yes welcome to our group  Radiotherapy is the way to go it’s hard but doable I am a wimp ! I cry if I break a nail but I did 35 radiotherapy sessions and 2 chemotherapy.Umm hate it when consultants say up to you but yiu did the right thing getting a 2 nd opinion.if we can help just shout out always one if us around at some point.

Hazel my blog is below it may help you i detail my experiences, remember me are all different you may get some of the side effects yiu may get all you certainly will get some of them But don’t fearvit .

Hazel x 

How did people go about getting a proper dental assessment? 

I had a 360 x ray before surgery and teeth were removed on the flap side - essentially to make space. But one surgeon mumbled about removing crowns, another said no - and I’d love a “clean” beforehand, but am not sure I can face the Dentist who twice said that the area I pointed out was fine (despite it having been biopsies 2 years earlier with an all clear).

Hi Panch my dental assessment was arranged by my cancer hospital when I met oncologist to discuss treatment that’s when dental appointment was booked for next day. They have to check your teeth to make sure they can stand up to radiotherapy .Luckily  I passed the test ,have to admit the possibly if loosing teeth worried me more than having cancer weird I know.

Hazel

Hi Panch and welcome

My dental assessment was made at the hospital where I was treated.   I've read several posts where people have received different advice from various dentists so unfortunately you're not alone in that!  Do either of the hopsitals have a good dental department where you can be assessed?

Linda x

Hi Panch - it’s horrible having RT with head and neck cancer but you couldn’t be in better hands with the Marsden . I had radical hemiglossectomy there 4 years ago and definitely needed RT as this was the second time I’ve had cancer -( first time was at a different hospital and they didn’t give me RT - was referred to the Marsden who said I should have had it but was too late and then it came back )

it’s a very hard road so I wish you luck . If you can keep up the swallow exercises and any speech therapy. The RT can affect both. I was wiped out for the best part of a year but am now back to a full and active life.

wishing you all the best

michelle 

Thanks for that.

After the 2nd opinion, I’m back under Mount Vernon in Northwood for treatment - which is just as well really as it’s just 15 mins drive away.

I’m now 4 weeks in and am actually feeling better than I thought I might. Just 5ml Oramorph every 4 hours or so plus various mouthwashes. I do have some scar tissue forming where the stitches attach my flap to the side if my mouth, but my surgeon says he will take a look after rather Radiotherapy. I’m just trying to keep things as stretch and as flexi le as possible. I’m still eating a little “real” food, but it’s getting a lot harder now. Throat & swallow still ok; no tube.

Starting to get much tireder now too.

Any hints, tips or suggestions gratefully received.

Stephanie x

Hi Stephanie

All sounding good for you so far.

My top advice would be to continue to keep your mouth as clean as possible and flexible, take your meds to pre-empt any pain rather than retrospectively and try to get a little exercise in the fresh air although not so easy at this time of year!  It's surprising how much better you feel after some gentle exercise but do also rest up when you feel you need to.  

Hope the rest of your treatment goes well.

Linda x

Oh, and at this time of year when the air is cold or it's windy I make sure I have a hood or some protection over my jaw and neck area as I find it starts to throb and ache when subjected to the elements!