Scared stiff

Hi  and a very warm welcome to the online community

I'm very sorry to read that you have recently been diagnosed with tongue cancer and, although I didn't have the same cancer type as you, I know how frightening being told you have cancer is.

As the community is divided up into different support groups I'm going to recommend that you join the head and neck cancer group where you'll find others who have had tongue cancer. There you'll be able to ask questions, share experiences and get support. You should also connect with other people who have had radiotherapy for tongue cancer who can tell you about their experiences with side effects. Don't forget, your consultant has a duty to tell you about all the potential side effects you might get but it doesn't mean you will get them.

To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post questions in the same way as you posted here and join in with existing conversations by clicking on 'reply'. 

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you need any help finding your way around the community just reply to this post.

x

Hi Susan

I'm Dani , a happy survivor of tongue cancer diagnosed in August 2018 and I hang out in the Head and Neck group Latchbrook has pointed you to. Pop over there and start with THIS THREAD by Markel. He has just finished his radiotherapy and is at pains to point out that it wasn't as bad as he thought it would be. There is plenty of help and encouragement there so come over and say hello.

Remember not everybody gets all the side effects and there are ways to mitigate your reaction particularly if you start before treatment begins. Hopefully see you there

Hi Dani! You had the same as me. Thank you for replying. I will read your blog. I want to know if there's any way of reducing possible side effects that I am terrified of getting. 

HI again! I read your blog and it's almost identical to my story. I also told my Gps what I had in order for someone to refer me. How does that work??? Did you post what to do to mitigate side effects? If so, please point me towards it as I want to be proactive. Thanks! 

Hi Susan. I'll put up a post today on the blog.

Follow the blog and you'll get an email update when it's up.

There are things you can do.

Yes....Head and Neck k cancer its still rare and I suppose GPs don't see it too much. I think clinicians are aware now of sudden lumps in the neck but even then oral SCC is not the first thing they think of. Things are changing but you're right. We still have to be proactive sometimes in getting a diagnosis. I count myself lucky I have the medical knowledge and feel for those who don't.

A word, though.

Please stay off Google. Much of the information is out of date and lots even dangerously wrong. Forget the stats. 

OK - I read your blog up to 4 weeks treatment and need a rest! It all sounds awful. 

I totally agree with what you said.....

"I thank God my mum has gone in a way. I know what a mother’s love is and she would have been unbelievably wounded." 

My mom and dad would have been sad beyond belief if they were here to know what's happened to me. That is the only redeeming feature I can think of at the moment.

Susan. Take the blog with a pinch of salt. I was 68 when it all started and I am a coward and a glass half empty person. It’s one of the reasons I’m still here lending a hand because if I can get through it so can anybody. And once you’re in the system you are well looked after by a team that is good at what they do