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

Delighted to get some glad tidings - your news is fantastic Jo!  Hope you have a wonderful Christmas and enjoy your little tipple.  

Last week I had the most enjoyable meal out ever since being ill.  It's still all a bit 'hit or miss' and I wasn't looking forward to it much, but we went to a wonderful new local French restaurant with a great reputation and I made all the right choices.  Taste buds are definitely still gradually improving and I got the quantity and consistency right on THREE courses with a glass of milk to help the main (fish) course down.

Simon, hope the dratted technology lets you catch up with us soon, would be great to hear from you.   Lots of love and best wishes to everyone, Irene x

Hi Guys, 
 
I hope you are all well. 
 
I just got out of hospital for my neck dissection after two weeks. Not that long but more than I expected. 
 
The original neck dissection operation was a success but I developed a chyle leak once the surgery was complete. I woke up in intensive care a day later and that worried me. But a doctor came around and said this leak was not life threatening and the next day I was moved to a normal ward. 
 
The hospital was really quick in arranging another operation as they had to go in a block this leak, I was filling about four or five drains a day with this white/yellow stuff, in they went through the ribs rather than through the neck again as they said this was best and used keyhole surgery which only took an hour or so to block a duct. The leak then stopped. I have had hardly any pain at all, only pain was from the lung/chest drain relating to the keyhole surgery, and that was only when I was walking about. Consider myself very lucky everything was fixed, people really went out of their way to make sure things happened, wish I could thank them all. 
 
I spend the rest of the time recovering although once I started eating I was much better and once my drains was out they said I could go. 
 
So pleased to be out for Christmas. All the doctors and nurses were very professional and nice and I could not fault them one bit. 
 
I am able to eat as before my jaw just feels like it is swelling after eating for a while then I give it a break. 
 
Results due in a few weeks for my dissection but I will forget about that over Xmas and try and eat a bit of Xmas dinner. 
 
Happy Christmas to you all.

Good luck with your results Nicola

Hi Roz Dog, it sounds like you've really been through the mill since your op, but delighted to hear you are home in time for Christmas and looking forward to a bit of Christmas dinner.  Hope you manage to have a lovely day with your family and forget about hospitals and test results for a bit.  Look forward to hearing how things are going in the New Year and wishing you a happy and healthy 2015.  Best wishes, Irene x

Hi Everyone and a Merry Christmas to you all,

Well, what a nightmare I had getting back into this site. Finally got back to being logged in and typing a post yesterday on my iPad at work - typed a longish post and the site crashed me out before I hit enter - how I laughed! I gather that others have also had teething problems with the new format? I usually try to embrace change but this really seems to be a case of 'if it ain't broke.......'I have to confess that I gave up trying for a while - it was so frustrating.

Anyway, how are you all doing? I enjoyed catching up with everybody's news - it's really like going to a party and seeing all your old friends.

Nicola, sorry to learn of your dental issues. What a nuisance, especially at this time of year - I hope they don't interfere with your enjoyment of the Christmas fare. Plenty of gravy sorts most things out - not much good on mince pies though - how I yearn for a hot mince pie and cream! It's great that your latest scan was good news again - that's nice news to take into the festive period, speaking of which, I bet your daughter is excited, not only with what Santa brings her but also with having her mum so much healthier than she was last Christmas.  Speaking of which, what a long way we've come over the last twelve months - a few ups and downs along the way but ultimately in a better place than we were at this time last year.

Guzzle is still keeping to form as Mr Motivator - top man! Vatch continues to make progress and everyone else seems to be slowly moving in the right direction. Poor old (or should I say young) Roz Dog he's been through the wars but hopefully he's on the right track now. Irene, Jo and Debbie are still an inspiration to us all - thank you to you all for being such a great bunch over the last year.

I'm in a generally good place. My night-sweats have returned though and it's been blamed on a thyroid problem (can't remember if it's over or underactive) which is likely to have been caused by the radiotherapy. I've got another blood test in February whereupon they tell me that I'll be on medication for the rest of my life which will hopefully sort the issue out for me. I still get fatigue and have insomnia most of the time (you'd think the former would cancel the latter out, but alas no). Most importantly, all my check-ups have been clear. Eating going fairly well, no bread, chips, curry or black pepper of course but at least I can eat and taste which is more than I could comfortably do last year. And no PEG tube this year!

Anyway, I'm going to hit enter before this darn site crashes me out again.

It just remains to say that I wish you all a very merry, peaceful and, above all, healthy Christmas, and let's continue with the good progress in 2015 - especially you Roz Dog.

Simon XX    

Welcome back Simon!  Can't tell you how delighted I was to read your lovely post and catch up with your news.  

Sorry to hear about your thyroid problem and hope the medication does the trick, but great news that your check-ups are clear and you are eating reasonably well - what a gigantic step forward from this time last year eh?  Like you, I never eat bread at all these days, but I am managing a few chips now and again (sweet potato ones are even better)!  I am completely off chocolate (and still can't believe I'm saying that having been such a chocaholic).  I thought I might try a Quality Street last night just to see if anything had changed, but it still tasted all wrong, sort of salty but can't really decribe it.  I've turned into a bit of a trifle addict (those ready-made individual jobs from the supermarket) so have made a HUGE one for this afternoon and am looking forward to it more than the turkey and trimmings, but I should manage some of that too - with lots of gravy and bread sauce!

Have a wonderful Christmas everyone, and a happy HEALTHY 2015.  

Lots of love

Irene x

Folks I need some help....I'm talking to chriswat who's as a post cancer of the oropharanx.....she is in a bad place and needs people talking to her to prove that it does get better....if you can help me I would be grateful

Vatch,

The details of the post oropharanax cancer person was omitted from your post - any other way you can put her details on? I'm happy to drop her a line. I tried your recent activity but couldn't find the relevant thread.

Laters

Simon

Here's a link to the thread that Vatch is talking about

Cancer of the Oropharynx

Sorry guys, not sure why the information was hidden in Vatch's post (will flag this up with the developers to try and cure this glitch). 

Jenn
Cancer Chat moderator

Hi Vatch, now that the moderator has provided the link, I've just dropped her a line and hope I have managed to offer some support/comfort.  So sad that she is feeling so low, especially at this time of year, brings it all back....  Great that Simon will write too - he gave me wonderful support and advice during and immediately after my treatment.  Hope you are doing OK.  Cheers, Irenex

Hi everyone thanks for your messages.

Hope you all had a good christmas day.

Good to hear your MRI results were clear Nicola.

p.s. is anyone having trouble getting onto the site. Everytime I try to login it tells me my password is wrong. It is not. Then when I try to reset it I get an access denied page and I have to clear my internet cookies to reset it. Really weird issues but I get on in the end.

Hi Roz_Dog

Sorry that you're having problems. Can you let me know what browser you're using and are you accessing the site from a saved/book marked page? 

If you can give us some further feedback I'll flag with as an issue for investigation. 

Thanks, 

Jenn
Cancer Chat moderator