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

Hey Nicola, will Definately keep you updated about Leeds and hopefully all the others here. I hope to meet Access and maybe a few others from the branchial cyst thread who have been a great help to me and it would be lovely to meet anybody here who fancied it. Its a long way but I plan to get the train and stay over carrrying onto Scotland to see some friends the following day. I'm still eating. On co codemol, oramorph and just got a patch which helps me through the night. IM afraid the dreaded phglem has arrived! However I only have 4 days left (4 radiotherapy and1 chemo). I hope to get through without the dreaded NG tube. Some fellow patients been in since week 2. Anyone remember how much symptoms got worse first few weeks post treatment?

I am just enquiring about a week in a convalescent facility in Harrogate through my employer . I hope to spend week in the gym, sauna , getting massaged / pampered to get my energy levels up. It may be worth checking via employers/unions/health insurance etc is if anything like this is available. I know you went on a similair thing and found it beneficial Nic! I hope you all continue healing and that you spend s shedload of Euros on nice things in France Nicola,

All the Best, Gary

Oh sorry cookie was good! Have you tried trifle. Yum!

Hi Gary, your convalescing sounds great! I remember feeling at my worst up to ten days after treatment ended, my very bad days being when I over did it. I finished on Friday 20th December, managed to struggle up to Christmas Day, but by the end of it I was feeling very ill but by New Year's Eve there was a massive improvement. Get lots of rest and sleep when you have to. I have never slept so much as I did then! Hope the last few days go ok for you this week. Euros purchased and at the ready!

Speak soon, Nicola.

Hi Nicola,

Good luck for your tongue check up this week. We both know it'll be clear and I'm sure that you're going to make your feelings known about your PEG tube. It you have it in much longer we'll have to get it a birthday present!

You reminded me of Christmas - I remember that my target was to eat a full Christmas dinner with all the trimmings - didn't manage it unfortunately but I did manage to struggle through about half of it. By way of a contrast, I had two small fried beef burgers last night - I checked to see that there wasn't any black pepper in them and, surprise surprise, they went down really well. The trick for me was to ensure that they are not done too crispy and to cover them in cheese and onion sauce. It turned out to be the best meal I can remember for a long while. I'm also majoring on those magic noodles thingys at the moment - they slip down really nicely too because they're soft and retain a lot of moisture. They are also easy to do in the microwave which is important for me because I'm useless with the cooker!

Hope all goes well this week. I'm keeping an eye on the Vatch thread - he seems to be almost exactly a year behind you and I.

Good luck with the PEG.

SimonXX

Nicola, the euro rate looks good. More of a reason to indulge yourself! IM not going to be complacent. I know things can get worse for the first couple of weeks. Feeling a bit sleepy now! Just have to keep eating! Regards, G

Simon, burger sounds great!

Nicola, the euro rate looks good. More of a reason to indulge yourself! IM not going to be complacent. I know things can get worse for the first couple of weeks. Feeling a bit sleepy now! Just have to keep eating! Regards, G

Simon, burger sounds great!