hello nicola, first of all the most important thing is staying positive,yes there are horror stories out there but the number of people ive meet over the past 6 years with the same condition have come through it to lead a near normal life ,obviously i understand your concerns especially as you have a young daughter ,which is why i suggest not to hide your symtoms,the more people that now will be able to help you when you need it, true its going to be a rough ride the next couple of years but you can pull through this, if theres any info on what the proceedure is for the op or the possible follow up treatments after please let me know , i was stage 4 tongue and lymph in neck ,im 6 years post op and although at times its been difficult im here and doing my upmost to lead a normal life again ,you can too,please let us all know how things go all the very best x

Dear All

Finding it hard to have to be posting here at all but my husband is waiting for treatment for tongue cancer, surgery at least (including some lymph node removal) and then maybe radiotherapy if he needs it. I'm focusing very much on practicalities at the moment... he's a teacher so speech is important to him, how long in your experience before he might be able to get back in the classroom? Should he be thinking after Christmas or longer (assuming things go well). What impact would radiotherapy have on his speech recovery?

Thanks :)

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

Hi Hazel, I'm in touch with Gary via Facebook and have just passed on your message.  I think his 5 year anniversary must be around the end of this month or early August.  Wonderful to read that you too have a tight-knit gang who have supported each other all along the way. I've just had a quick read through your wonderful blog (methinks inspired a bit by Gammraygary ;).  I still have a few weird food issues, which I doubt will ever leave me now, but with the 5 year all clear under my belt , I consider it a small price to pay.  As you quite rightly said at the start, when you get that bloody scary diagnosis your first thoughts are the darkest.  I thank my lucky stars that I was born in the 50s and not a decade or two earlier, otherwise I probably wouldn't be here to sing the praises of CRUK and the ever-increasing number of cancer survivors.  I've just sent a wee donation to your justgiving page.  Sorry it's not more but I just sponsored several folk doing wonderful fund-raising stuff (for CRUK, Macmillan and other cancer charities).

Well done you - good luck!

Hi

thank you so so much  I haven’t received notification yet but will keep my eye out the amount doesn’t matter like Tesco say every little helps. Our grandson gave me £1 st the weekend which lol I gave back to him Sunday morning plus a bit more as he stated in bed past 0700 am.   Yes gamma ray definitely inspired me. Our little gsng really motivate each other with tips and jokes. Agree glad we were burn in the 50 s as have heard horror story’s if wall bricks being used to hold your head in place   Shudder the thought. 

Thsnk you once again it means so much 

h xx

Sorry Hazel, don't know what went wrong, I must not have finished the transaction.  Took me a while to find your donations page again, but it should be through now.  Best of luck, Irene x

Sorry Hazel, don't know what went wrong, I must not have finished the transaction.  Took me a while to find your donations page again, but it should be through now.  Best of luck, Irene x

Hi Irene

Thankmyou very much for your kind donation I will report back ca after I’ve done  the ride in the 27 th. yes they have notified me that you’re donation is there thank you investigate again

Hazel xxx