Hi Nicola

I just thought i would drop you a line as I have been chatting to simon who appears to have gone through the same thing i am now facing

At present I have a secondary site in my lymph node on the right hand side of my neck ... they can not find a prime site I have had multiple cameras and tubes doen my throught had a ct scan and a PET CT scan and no primary site found ... I am now going into Addenbrookes on monday for multiple biopsies from the back of the toung throat and a scape of the tonsil area (although i had them out when i was 8) before they assess my treatment plan

At present i have been told that they seeno need to operate and think the lump can be dealt with ... via the 6 week of chemo and radio therapy ... so you appearto have had it a lot worse than myself

I know what i have and accept it and like where Simon was i just want to get on with it and reading your and Simons posts has given me a flavour of whats ahead ... i know its different for everyone

Im just trying to get a perspective on what i am now facing and how long im going to feek crap for as i have a business to run and am trying to put in steps to limit the impact of my absenses

regards

Gary

Hello everybody,

Sounds as if everyone is doing well especially Gary. Have you finished treatment now? How are you feeling? Sounds as if you have coped well, how was the cookie? There was no way I could have eaten a cookie at this stage with a frazzled tongue! As for being bunged up, Laxido was what I was prescribed, it seemed to help. Strangely I've still got them as well as some other meds, I feel weird about throwing them away but I'm not sure why I'm keeping them, kind of a safety net I suppose. Keep me updated with the Leeds meet up, I love Leeds. I will try and make it if I can. You sound as though you have escaped the phlegm issue, I still get a sticky mouth first thing in the morning but the phlegm problem settled down a few weeks after treatment.

Simon, I've noticed an improvement with food too. I eat three meals a day most days now which helps the fatigue. Pleased to hear you say you have days when you feel like you've never had cancer, I look forward to that. I'm still waiting for my peg to come out, I have a tongue check up next week and I'll be making my disappointment known, I just want it out now. The referral should have been done almost eight weeks ago so it's time to make a bit of fuss I think! I'll be glad to be rid of it however every time something comes to an end and its another step closer to being normal again I get a little wobbly. I suppose like you were saying, it's all been a safety net and when it was time to have my PICC line out or stop meds etc I felt a bit shaky. Sounds as if you are back into the swing of life which is great, I hope you get the help you need with the night sweats.

Irene, sweet potato chips are a great idea! I will try that. I find regular chips too dry too and I can't have ketchup as it stings but I did try chips and mayo but again was still too dry. I add caramel syrup to my coffee and a big spoonful of sugar, otherwise I can't taste the coffee alone. The worst times are in the evenings when I fancy picking at something nice to eat. I used to have chocolate or cakes/biscuits, now it's rice pudding with a dollop of jam but it all takes so much more effort! Sorry to hear about the episode of blood, perhaps something was a little harsh on your throat which made it bleed. I know my throat is still ever so raw and wounded. If feels as if someone with long nails has scratched down the inside of my throat and the same areas seem to sting most when I get brave and try something a little spicey. It was also very sore when I had a bit of a cold and cough recently.

Gary, I'm sorry to hear of the position you find yourself in because of cancer. None of the treatment is pleasant but it is manageable. It does get depressing at times especially if you are unable to eat but you just have to keep reminding yourself that it won't be like that forever, only three months ago I couldn't ever imagine eating normally again but I'm already tucking into meals. In terms of time off of work etc, I didn't work at all throughout my treatment but that was due to the major operation I had a couple of months before my treatment started and I was told to expect a minimum of four months of recovery time from the surgery alone. However I did meet another person having the same treatment as me and he managed to continue working through most of the six weeks, I believe his job was partly physical. I would suggest putting steps in place to ensure you don't have to work and if you can then its a bonus. You never know how you'll feel from one day to the next and it can be quite exhausting. I know I couldn't have thought about working when it was happening for me, I struggled for three to four days following the chemo each week but everyone is different. Also, try to remember that the recovery for a few weeks afterwards is when you will also need to rest. It all sounds like such a lot to think about in the beginning but as long as you have help and support, it's only a short time of your life that will be disrupted. You'll be back at work and back to normal before you know it! I hope all goes well on Monday, let us know how you get on and please feel free to ask any questions. I'll be thinking of you.

Speak again soon,

Nicola xx

Thanks for this feedback Roz_Dog. It's really useful and I have flagged this as an issue for investigation by the developers. 

Please continue to bear with us and we'll get back to you as soon as we can.

Best wishes, 
Jenn
Cancer Chat moderator

Hi Gary/Vatch - just wanted to say .... I always felt pretty connected to you through this thread but now realise, having read a lot of your brilliant blog and back a bit through the thread that I didn't really say a lot in direct response to your posts.  I also confess I tended to get you and Gary Guzzle mixed up (blaming my age on that one!).  Just saying now that you are both top blokes, using your bad experiences to do your best to try and help others facing similar situations.  I think I had the impression that you sailed through your treatments because neither of you complained much and maintained such a great sense of humour and encouragement to others, but having now read your blog I recognise it as a pretty blow-by-blow account of my own experiences.  Good on you mate!

Hi Guys,

I had some really good news today and was given the all clear in the neck nodes so that is effectivly the end of my cancer treatment and they are confident they have got it all.

I realaise how lucky I am that it was caught early and had not spread any further from my tongue, and that I do not need any other treatments.

I have had it really easy compared to others and it was down to luck. Unlucky I got Cancer but lucky it was on the front of my tongue, had it been on the back I would of not had known anything was wrong until I had a lump on my neck.

I am ever so thankfull to everyone on here expecially Nicola as I was able to read your story when I first was diagnosed and I knew how things worked.

I will have a scan in a few months I think to make sure nothing is wrong but I am told I should be fine.

I will stay on here as I want to help others as much as I am able to.

Once again thank you to you all and this forum and will start to live life a little more now and enjoy it rarther than just living to work and doing something I did not live before my diagnoses.

I will try and raise awareness of tongue cancer as well as no doubt people will ask about the scars, will be a talking point.

:)

Hi Guys,

I had some really good news today and was given the all clear in the neck nodes so that is effectivly the end of my cancer treatment and they are confident they have got it all.

I realaise how lucky I am that it was caught early and had not spread any further from my tongue, and that I do not need any other treatments.

I have had it really easy compared to others and it was down to luck. Unlucky I got Cancer but lucky it was on the front of my tongue, had it been on the back I would of not had known anything was wrong until I had a lump on my neck.

I am ever so thankfull to everyone on here expecially Nicola as I was able to read your story when I first was diagnosed and I knew how things worked.

I will have a scan in a few months I think to make sure nothing is wrong but I am told I should be fine.

I will stay on here as I want to help others as much as I am able to.

Once again thank you to you all and this forum and will start to live life a little more now and enjoy it rarther than just living to work and doing something I did not live before my diagnoses.

I will try and raise awareness of tongue cancer as well as no doubt people will ask about the scars, will be a talking point.

:)

Thanks for your messages I am so pleased, it feels like its over before it even begun. The NHS were so quick to treat it. I will start going to the dentist now as I did not before, and I am on a mcuh better deit with carrot juice so hopefully I will be free of these decease for many years to come.

Thank you all.