Hi 

i am 10 month post radiotherapy for tonsil cancer understand where you are coming from but I had 2 chemo and 35 radiotherapy sessions never had a problem speaking but the general,tiredness etc may and probably will get to him just an idea whet  younhave  posted this is an old thread you might be better either starting your own or looking at say Radiotherapy For Throat Cancee in section living with cancer has that’s a current thread. 

I have a blog www.radioactiveraz.wordpress.com where’s I do a blow by blow account if my treatment. Just remember we are all different ,one if the worse things he maybface is lack of saliva which I still have and although speaking isn’t a problem I find talking for more than 10 min so or in a group of people dries me out and makes me tired. But we all are act differently some return straight to work a few work all way through it all depends on what treatment and how his eating is effected

hope this helps to hard to be precise   plan   For the long haul and hope for the short route. But I know people who have also returned too early and are  now taking longer to recover it really is a guessing game. 

Hazel 

Hi Scrapcat

Hazel has given you very sound advice "He may face lack of saliva which I still have and although speaking isn’t a problem I find talking for more than 10 min so or in a group of people dries me out and makes me tired. But we all are act differently some return straight to work a few work all way through it all depends on what treatment and how his eating is effected".

I finished my treatment end January 2014 so have now had the 5 year discharge.  I think it very much depends on the site of the original tumour and what surgery was involved.  Mine started in my tonsil but wasn't evident/diagnosed until I found a lump on my neck (a secondary).  Having said that, all is well with me.  I had surgery to remove the lump and a tonsil, but have had no speech problems at all.  Like Hazel, I have ongoing difficult with lack of saliva/dry mouth (possibly a permanent side affect for all who undergo oral radiotherapy) so I have to wash my food down with lots of liquid to the extent I eat smaller portions than I used to because I get over-full with the extra drinking required. 

However I've learnt to cope with that and am eternally thankful that the treatment I had (albeit gruelling at the time with daily RT and weekly CT) saved my life.

Wishing your husband the very best going forward.  It's a tough time but you have come to the very best place for support.  Check back this thread.  I have made lifelong friends through this experience, we gave each other great support.  We hail from all corners of the UK and met up in London 2015, Liverpool 2017 and Edinburgh 2019.

Irene J

hi scrapchat 

I recovered fairly quickly from my operation it was a T2 on the side of the front of my tongue, I’d say within 4-6 weeks of surgery I was talking again as normal. I had ana amazing consultant who worked to minimise the things that would impact on my speech.

the bad news is that I’m on week 4 of 6 radiotherapy 16/30 treatments and from about week 2 the swelling and blistering in my mouth and on my younger have meant I’m unable to talk very well at all, my partner just about understands me but I’ve downloaded an app that I can type in and it will speak for me, a lot of it is the pain that’s stopping me talking properly.

my oncologist is confident writhin 6 weeks of finishing I should be talking properly again. Had my operation first week of may and optimistically hoping to be back to work first week of September. It’s very different to each person I think as the consultants all seem quite reluctant to give timelines or guarantees on speech and taste etc coming back to full health

Thanks

Joe

More than 1/2 my husbands tongue was removed and rebuilt. He had a very hard time with radiation with pain and burning. He did not want a feed tube so I blended everything and supplemented with Scandi shakes which are @600 calories. He did not finish radiation. He did ended up hospitalized oding on pain meds he was on liquid oxy, fentayal patches, gabapentin. I had him come off everything and slowly he healed and went to speech therapy and was back teaching in a classroom 7 months after durgery

Hi Irene J

justca quick question is Vatch aka Garybone if your gang z? Haven’t seen him post on a few months just wondering if he is ok ? And did he get the 5 years all clear 

thank hazel x

Hi Hazel - we have two Gary's in our 'gang' Gary J (AKA Guzzle) and Gary V (AKA Vatch).  I've forgotten the order of our treatments/diagnoses but we are all 5 years all clear round about now or sometime very soon.  Met Vatch and his lovely wife Claire in Edinburgh a couple of months ago and he regularly posts on Facebook so I'm delighted to report that he is fit and well and just celebrated his daughter's graduation from Portsmouth Uni with First Class Honours in Biomedical Science - what a clever girl!

Hi

Great news all way round   It’s Gary aka Vatch whose blog I found just over a. year ago who helped me in my early days  of  diagnosis n treatment . If u contact him let him know Hazel aka Radioactive Raz is now one year since treatment started and am doingbok I still update my blog . 

Plus like you we’ve s small tight bunch of us who have already met up and send private messsges almost daily. 

pass my congratulations on as well re their clever daughter

Hazel c

Hi Joe

How is it going? You must have nearly finished your radiotherapy? I’m about to start mine a week on Monday. I had my surgery on 11th June, they removed the tumour and I also had a free flap reconstruction and selective neck dissection. Final staging was T3N0. I’m going to be having radiation to the left side of my tongue.

I’ve lived in Hong Kong for about 10 years and had the surgery there but I decided to get the radiotherapy at the xxx in the UK, mainly as I was so comfortable with the oncologist there who’s a specialist head and neck guy. He’s told me that loss of taste is temporary and should return 3 to 4 months after treatment ends. He said there might be some foods that don’t taste the same anymore but that taste buds are constantly regenerating so there shouldn’t be permanent loss of taste. Let’s hope he’s right!

Like you I’ve never smoked, don’t drink much and I’m only 39, so not a typical tongue cancer patient. My biopsy was p16 positive, and although HPV has no impact on oral tongue cancer (unlike base of tongue, throat etc), my consultant said he thinks that’s highly likely to be the cause. 

Nicola and the rest of you who posted on here 5 years ago, I’ve read the whole thread and am pleased to see you’re all doing so well. It gives me hope!

Selina  

Hi Selina,

Glad to hear the surgery went well! A T3 mustn’t have been ideal but good to see it was N0 so the nodes were clear.

I’ve got 7 sessions left of 30. 

I was warned about the pain that the radiotherapy was going to cause but for the first couple of weeks it was fine I was managing the pain with 30/500mg Co-Codamol by the middle of week 3 though I took a big dip and started the Morphine which was upped straight away and then on to Fentanyl patches it took a week or so to get the the point where I was able to manage the pain properly. My taste went around 2.5 weeks too, now everything tastes awful, apart from spinach and ricotta pasta with tomato and marscapone sauce which I have found to be ok it tastes a little odd but it’s manageable. Water tastes salty and my mouth is always tacky. Hay fever hasn’t helped.

Tge worst thing is the mask for radiotherapy, you have to really take a moment to make sure you’re happy with it before they start the treatment otherwise it can be very uncomfortable. I’m in a Tomotherapy machine - it looks like a cross between a CT scanner and an MRI I’m strapped to the bed with the mask put in the machine to scan me to make sure I’m in the right place then I’m brought out the machine whilst they check the scan against the cost CT then back in for treatment all in all it’s about 15/20mins a day.

my best advice is to make sure that you stay on top of the pain relief as that’s what really makes a difference between a good and bad day for me. Also whilst you still can, eat eat high calorie and fatty foods you’ll need to stores for when you can eat properly I’m on mostly nutrition shakes at the moment and dropped 4kg last week. 

If you have any questions just give me a shout happy to answer any you may have! It’s going to be really hard so I wish you all the best and strength to see you through it

Joe