Hi Nicola,

Welcome to this friendly and supportive forum. I am sorry to read about your symptoms and feel sorry that the doctors didn't pick up on it earlier. Treatments are improving all the time Nicola and new drugs are being developed all the time.

Hope when you get your scans done the cancer has not spread. Anytime you feel the need to talk, rant or rage, this is the place to do it and I and other will do all we can to help and support you. Please keep us updated when you can, best wishes, Brian.

Hi Woodworm,

Thank you for replying to my post.  I'm sure I will be on here a lot to share info and vent my anger. I have already noticed that the few people that know about my situation already, haven't reacted in the way I would have liked/expected, so talking to other people that are familiar with the situation will help.

I will keep everyone posted.

Nicola xx

Hi all,

I'm not sure if this group is still active but...

I am sadly a new recruit to this group. On Friday I was diagnosed with a Stage 2 cancer on my tongue, the CT and MRI came back showing no signs of spread. My consultant wants to do an operation to remove the cancer from my tongue (2.1cm) under the right side, and also do a neck dissection to remove the lymph nodes.

Pretty worried about it all and reading this forum has been such a comfort to know I'm not the only one.

Just so confused at the moment I'm 29, never smoked and don't drink.

I'm mostly worried about how my family are going to cope as we go through this journey, I am trying to stay really positive about it especially around them as I don't really feel that telling them about me being scared might make them feel worse :s.

Thanks

Joe

Hi Joe,

Sorry to hear this news and you must be very worried about what is to come. I remember it well and like you, was told more or less the same thing at first about a neck dissection and a partial glossectomy. 

It is all so scary at first and it is a difficult time but please be assured that you will get through it. For me, the surgery was the easier part (although not pleasant!) but now you would never know that I’ve had done. Life is good and I live a very normal life. I have just been on a cruise to celebrate my five year cancer free milestone!

Your family will probably be the ones that get you through it, my little girl kept me positive and a reason to keep going which was the only thing I needed. We are very lucky have our NHS, they will work wonders for you and before you know it, this will all be over. 

Stay at in touch, let us know how you are doing. Let us know when your surgery is and perhaps I can give you some tips or advice.

Take care,

Nicola

Dear Joe and all other 'newbies' embarking on this journey......

While it's hard to read about others going through the anxiety, emotional turmoil and gruelling treatment following a cancer diagnosis, I'm so pleased to see that Nicola's thread is still going strong and she continues to share her experiences with others.  

I also underwent treatment for head & neck cancer in 2013/14 and Nicola's thread was truly the very best support for me as I went through similar ups and downs. 

Through this wonderful forum I have been blessed to make and meet some very special friends - Nicola, Simon (AKA Fray), Guzzle (Gary J) and another Vatch (AKA Gamma-ray Gary) - I commend his wonderful blog gammaraygary.wordpress.com.

We all met up in London in 2015 and got to meet Guzzle's lovely friend Jayne who had been through a dreadful skin cancer experience and has been part of 'our gang' ever since. Two years later we got together again in Liverpool when my husband Malcolm and Vatch's lovely wife Claire joined us. Some of us have just had another reunion in Edinburgh this weekend to celebrate our 5 year mark.  Sadly our 'founder members' Nicola and Simon/Fray/Dave couldn't join us but we hope to meet again in Bristol later this year or early in 2020. 

I will never forget how much support, encouragement, friendship and laughs (as well as tears) this forum and these lovely people brought to me - just invaluable! 

In the hope it might help others approaching treatment, going through it, or in recovery - here we are yesterday, very much enjoying life.  My avatar photo shows the whole gang in Liverpool 2 years ago.  Sending positive vibes to you all x

[[]]

Hi Joe

Sorry to read of your news.

I went through surgery for the same last month. I too was pretty much floored and wasnt sure if I could do it. But the folks on here gave me the push I needed to go for it.

You will be surprised at how you will recover,Im 6 weeks post op and fine,eating well, all healed up just a few twinges in neck scar to remind me. The numb areas will take a while to come back, but I hope not too long.

Your scan results are great news though, thats just what you want to hear.A wee bit positive news!

If you stay strong your family will too. My advice dont overthink things just take things a step at a time,dont overload yourself with worry and stressing.

Take care & best wishes xx

Hi Everybody 

I went through the whole experience in January 2014 too. Unfortunately I didn’t find this site until 2015 so I really missed out on your wonderful support. I spent the whole of 2014  having operations, chemo and radiotherapy. I’ve just had my 5 year check with ct scan and I’m doing fine. Slight problem with my coroted artery this year which is something to do with the neck resection and treatment. But it’s fine really, I don’t let these things get me down, I just have to take some aspirin now to keep my blood thin. 

Would be nice to meet up if you ever get nearer to Kent anybody 

Best wishes

Carol

Oh dear I remember this happening to me regularly when I was a regular contributor to the site.  I typed up a lengthy reply and somehow managed to lose it before posting!  So here goes again:

Dear Carol

Delighted to hear you are at the same stage us 'our gang' and doing well.  We'd be delighted for you to join us when we next meet up, probably in Bristol.  I realise it's quite a trek from Kent, but closer than Liverpool or Edinburgh!  We'd welcome anyone else on this thread - Heddus? Joe? Clara? Pat? Sherry? anybody else I've missed?  

Between us (Nicola, Gary aka Guzzle, Gary aka Vatch and Simon S) I hope we can remember to post on this thread when we have a date for our next reunion.

For those playing that dreadful waiting game for test results, I'm sending positive vibes through the ether.  If you get bad news, get straight back on here for some great support.

Love Irene x

Hi Irene

That would be lovely to meet everybody.

We can take our caravan for a few days in the Bristol area and also meet our other friends that live near. I’ll keep an eye out for your meeting date.

keep well

Love Carol x

We’d love to welcome some new members to our gang! There are plenty of places nearby in Bristol for your caravan Carol, we’ve had a good laugh when we’ve all met up and it’s a special friendship to have, as we’ve all been through very similar treatments. It really helps me to speak with and share experiences with people who really understand. 

We will certainly let you know when it’s arranged.

Joe - any news yet? Please come back and let us know how you are. 

Soeak soon,

Nicola

Hi Nicola 

I think we were going through this crap about the same time. I was diagnosed in December 2013, so I spent all of 2014 getting through the ops and treatment.

I’d love to meet you all for a get together 

love 

Carol 

Hi all

I've got some questions regarding symptoms....I have a fingerprint sized patch on the front right side tip of my tongue, it fluctuates with ulcers and sores and tingles. I've had it for roughly 8 weeks, since I first noticed it. Last week I had some pin spot bleeding on the side and I've had some numbness/tingling intermittent on my lip and face. This area also has a rough feel like a cats tongue.

I've got a 2ww apt at maxillofacial on Thursday, obviously I'm worried. My husband is convinced it's geographical tongue, which I'm hoping for. 

Any shared advice guidance greatly received x

Hi all

I've got some questions regarding symptoms....I have a fingerprint sized patch on the front right side tip of my tongue, it fluctuates with ulcers and sores and tingles. I've had it for roughly 8 weeks, since I first noticed it. Last week I had some pin spot bleeding on the side and I've had some numbness/tingling intermittent on my lip and face. This area also has a rough feel like a cats tongue.

I've got a 2ww apt at maxillofacial on Thursday, obviously I'm worried. My husband is convinced it's geographical tongue, which I'm hoping for. 

Any shared advice guidance greatly received x

Hi Lenny

You have done the right thing in getting your symptoms checked by Maxol facial as they are far more qualified than a GP. There are many people who have been in your position on this forum but have been perfectly fine. There are many things that it could be besides cancer so please try not to worry until your appointment. 

I have been through this so the main thing is that you are being seen early which is never a bad thing. Good luck with your appointment and please get back to me when you have been.

my very best wishes Carol 

Thank you Carol, it's hard not to let the mind go crazy

Hi Lenny

Just wondered if you’ve  had any news regarding our last chat.

It would be lovely to hear from you.

Best wishes

Carol