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

Roz,a young guy of 25 was getting treated when I was - he was a smoker but shouldn't have smoked rough to cause it. I used to smoke but was hpv positive. Just concentrate on getting treated and recovering.

regards, Gary

Hi all,

Good news, it has not spread to the lungs etc. They were right when they said it was very unlikely that it had.

So they will have to cut out just under half of the left side of my tongue, and will somehow fold it over so it does not look much different. I don't quite understand how, but my mind goes blank when I am talking about it with them, I will have to take a pen and paper with me next time as they suggested and write down all these questions beforehand.

The person doing the work seems very confident and does seem to know what he is talking about. They seem like a very robust team. I am very happy that they are doing the work.

They are also going to test my lymph nodes with dye and test one, rather than taking them all out. They are confident none of the cancer has broke away and gone somewhere else as its still early stage. I will not need any other treatments.

I consider myself very lucky, I know I will have some trouble once my tongue has been cut but I am aiming to make a quick recovery. I know it could of been so much worse.

Hi Irene and Jo,

Jo, I only realised that Lina Bellinghmam had passed away when I read your post earlier about it and how it had bought you down.

I have to say it rather shocked me. I hadn't seen the news for a day or so , but remember thinking it was only the other day she was planning to stop chemo in November and enjoy her last Christmas with her family. Shocking really. I am sure it has resonated with you and so not really surprised you have been reflecting.So lot of friend hugs.xx

Irene, I have been there too. When you find out old friends and neighbours have died from cancer and it is always a shock at first. Especially if as in my case with one friend I didn't even know she had become ill. She was younger than me and I had moved away from the area so hadn't got the news. Eventually heard it from my daughter as she was still friends with her son.

Why do we believe we should know about these things??  I am glad the book I suggested to you had helped your friend as well.

Many hugs to all you lovely virtual friends out there.

Annabel. xx

Hi Roz dog,

Just wanted to say welcome, you've come to the right place for great friends and helpful support.

Glad to hear the positive news that it isn't in the lungs.

Take all the guidance from the guys and girls on this thread who have the experience .

Wishing you all the best in your journey with this disease.

Hugs

Annabel. xx

Hi Roz,

Writing down questions is a good plan - I used to go armed with a list of things that I wanted answers to. It is also a good idea to consider taking a relative, partner or close friend. Sometimes they will remember to ask things that you forget and they can also remember what you were told but forgotten in the heat of the moment. I used to sometimes take my wife and she usually came away more clued up than I did.

Don't be afraid to ask questions on here - loads of us have been through similar experiences and people are keen to give support if they can.

Welcome to this exclusive club!

Simon.

Hiya Roz

So glad to hear that your cancer has not spread but sorry that you are having to undergo reconstructive surgery to your tongue. As you know, Nicola has gone through this and is doing just fine now.  I'm sure she will be a huge support to you (as we will all try to be) becayse she has first-hand experience of a similar procedure.

I remember when I was having my treatment that I got so angry and upset to see youngsters like yourself going through this.  It's not pleasant at any stage of life but just seems all the more unfair that when you are young and should be enjoying life to the max, to have to cope with this bombshell.  However you will get through it and before you know it, this will all be a distant memory.

Keep your chin up mate and do keep in touch and let us know how you are getting on.  As I think I said before, it's a brilliant place to ask questions, get helpful tips and have a moan if things are getting you down.

We'll be with you all the way!

Love Irene x

Hi Annabel

Lovely to hear back from you and thanks for sharing your similar experiences.  Have also been really sad about Lynda Bellingham - what a gutsy and inspiring lady though! 

Much love to everybody.

Irene x

Cheers Jo, will be raising a glass to all my chatroom pals this Christmas and New Year for sure!  I remember bringing in the 2014 New Year on an Activia prune yoghurt

Hi Irene,

You've reminded me - I remember so much wanting to enjoy Christmas dinner last yeat but I struggled to get even a roast potato soaked in gravy down. I managed a small school dinner-sized portion but it was hard work and I had to leave half of it. You've made me look forward to this year where things should be much better! Bring it on!

Simon XX

Hi Simon

Yes we've come a long way since this time last year.  Bring it on indeed! Irene x

Hi Simon

Yes we've come a long way since this time last year.  Bring it on indeed! Irene x