New to this community and to this journey

Hi and welcome 

I was the same as you. BOT SCC HPV+ T2NOM0

I've just looked at those letters…. 

6 weeks RT

Have a look at my blog at the bottom of this post. Another of our members has a useful one too.  Just click on https://community.macmillan.org.uk/members/22d37318976e4a238b6f5f9a3c989e67  

Hi and welcome to the group from me. It will be a few tough months, but there are things your team can give you to help with any side effects you might get, always keep your team updated on how things are going for you, don't suffer in silence. You can ask on here any questions or worries you have; someone will always answer if they can. Stick with us, we're here to help if we can.

Ray.

Welcome to the group. You will get loads of advice from people who have experienced something similar to you. I found I was fine up until week 4 of 6 weeks of radiotherapy and then the side effects locked in for me. Taste became like cardboard, dry mouth, painful ulcers. However my treatment was for jaw cancer not tongue cancer. Keep on top of the pain killers and if they are not helping enough make sure you speak to your oncologist to get them reviewed. I had to write down when I took the pain killers and when the next dose was due as it becomes really hard to remember everything. 

Good luck with the treatment

Lyn

Hi welcome from me treatments hard but tske it one day at a time. In 7 years post treatment. 
Hazel x

Hi and welcome from me.  I describe the treatment as brutal and recovery as torture.  Remember that recovery is a marathon and it takes many months to feel normal again.  It is a frustrating process with many steps forwards and a few backwards, but you will get to a new and good quality of life post treatment.  As to other questions - ask away!

Hi, I’m now one year post treatment and yes the treatment was tough but I can now look on my mask as an old friend. It hangs in my shed! 
The worst side effects were the lack of taste so dislike of food quite early on. The radiation burn but this was short lived. Use lots of burns cream.

If you have a Maggies at your hospital go there they are amazing. 

Taste started to return within a few weeks of finishing treatment but it is still not quite as it once was. I enjoy food again now but think it will always need to be accompanied by sauce or gravy. You quickly learn to adapt your diet and it is a small price to pay. 
The treatment seems to be really successful so keep positive and you will soon be through it. 
Julie

Mine was under my tongue in a salivary gland, so the treatment might be similar. 
You might find the blog of my journey interesting too. 

Hi Nacho and welcome from me.

You haven't mentioned if you have, or are having a PEG fitted?

Most of us here relied heavily on tube feeding for many weeks post treatment. 

Recovery will be a journey of highs and lows, with eating and drinking being difficult and painful, so celebrate each and every high, no matter how small,  with family, friends and loved ones. Each high is a sign you are recovering. 

Best wishes as you start along this path.

MickyC

Thanks MickyC - over here (the US) or at my clinic at least the docs say they don't routinely fit a PEG. Only if/when weight loss warrants it. 

I am a little concerned about this. I've been skinny all my life and now at 71 I'm 6' 4" and about 194lbs (a bit less than 14st). I'm trying to bulk up but not sure of that's going to be enough to carry me through the treatments. 

Something to bring up with the Dr. again?

P

I would advise to discuss it further.

My PEG was fitted weeks prior to treatments as the last thing you want when the side effects kick in, is them trying to go down your throat with a tube and camera.

I couldn't eat or drink anything orally for around 4 weeks post RT treatment and got all my calories and hydration (and pain relief meds) through my PEG during this time.

Many people here would agree its an essential aid on our road to recovery.

Good luck and do stay in touch as there's years of combined experience to be called upon from us here on these forums. 

MickyC