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

Hi All,

Vatch,  I have not heard of anyone having pain after surgury.  They cut into the front of my jaw

then on round the inside of my jawline and then downwards to the bottom of my neck.

The righthand side of my mouth and jaw still feel numb as though I have been to the dentists,

but no pain. I have a lump on my neck where the fluid cannot get past the scar tissue but it

is painless.  I have never had a problem with the PEG, it allows you to get nutrition without

eating.  I never feel hungry and my wife sometimes has to remind me to feed. I used to love

food and wine and my wife is an ace cook.

Simon, like you I lost 2 stone (13 to 11) but I had been working too hard to find the time to take exercise

and now feel better for it. Like you I am deafer since the RT but this may be just be advancing years.

I still sometimes have a dry mouth have a spray I use prior to running. I inhale through my nose to try

to retain moisture in my mouth when running.

Gary, 10K a champion!   When younger and competing I only ran 10miles most days.  Keep it up it

can only do you good. I found I lost a lot of muscle after three weeks in hospital.  My calves were

wrinkled as though I was old. The idea!!

Nic,  Being retired and not having the pressures of a job made it a lot easier for me. I can't imagine

what it must be like to have sole resposibility for a young daughter.   It must be such a relief now that

your future and hers are assured.

Colin

Col, Ten minute miles! Slowly slowly! Just trudged 5.5 miles after travelling back from Brum. Wish I could get all my energy back!

Hi everyone, it's my first day back at work today after everything that's happened this last year. Feeling very nervous! Wish I didn't have to go back,  feel a completely different person now! But at least I'm in a position to be healthy and to be able to work again. A year ago I was all stitched up and not able to talk or eat properly!

Off I go, I'm sure it will be ok.

I will reply to everyone properly and also let you know how I got on.

Speak soon,

Nicola xx

Nicola

An emotional day i bet as you try to get you life back to what it was

I hope it went well,I am sure it did

I've been watching the tv all night ... the stand up to cancer and for reasons i just cant explain I balled my eyes out over all those stories ... just felt i had a close connection with them all and felt what they went through .... even though my circumstance was in no where as bad as theirs

Vatch

Nicola, well done,!

Well done Nicola, hope all goes well for you x

Nicola,

Just seen your post.

Of course you are a different person to the one who went to work before.

You're one with an extra load of experiences and understanding.

Amazing to think you how far you have come  in a year. Well done you.

Thinking of you and looking forward to hearing how it all went.

Hugs

Annabel. xx

Hi Irene,

Long time no chat.

How are you doing these days love.?

would love to hear.

hugs

Annabel. xx.

Hi Nichola

Just wanted to say well done for taking a huge

Step forward.you have come along way since

Last year and I'm sure you are nervous.

Take step by step and I'm sure you will be fine.

Hugs hun xx

Hi Nicola,

Wow, what a long way you've come. I remember the feeling of not wanting to go back to work. but after a short while being glad I did. It's all part of the recovery process I think.

I hope that the first day back was okay for you. How many hours did you go in for? I started at 4 hours or so per day and then increased slowly over the following weeks. I used to be a bit of a workaholic and do 10 or 12 hour days regularly. I'm now careful not to go over 8 hours unless there's some crisis going on. My view of what's important has shifted.

Keep us posted - we're all on tender hooks.....

Simon XX

Hi Nicola,

Wow, what a long way you've come. I remember the feeling of not wanting to go back to work. but after a short while being glad I did. It's all part of the recovery process I think.

I hope that the first day back was okay for you. How many hours did you go in for? I started at 4 hours or so per day and then increased slowly over the following weeks. I used to be a bit of a workaholic and do 10 or 12 hour days regularly. I'm now careful not to go over 8 hours unless there's some crisis going on. My view of what's important has shifted.

Keep us posted - we're all on tender hooks.....

Simon XX