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 Nicola, 

I hope you are well. I have not had any results back yet, but my tongue has gone down to half the size it was in hospital, and I can eat solid foods using the right side of my mouth. I have my results soon so will keep this updated.

I myself should be going back to work soon and I have decided not to talk about it with people unless they ask. I think you had a lot more to go through and it must get annoying keep explaining it to people. I used to think people who have had cancer would look a certain way etc but I have seen many others when I go to hospital and they all look fine like they have never been ill. I must admit I found it hard before I got it to understand why someone could be ill when they look fine on the outside. But my whole way of thinking has changed since then and I understand it alot better.

Will keep in touch thank you for replying.

Yeah Vatch i woould agree, but I could not understand it fully as I have had a pretty easy ride with it.

Hi Guys,

Bit of bad news but not major, My neck biopsy results came back and there were some cancer cells within the neck nodes.

They are going to remove all of my nodes from the front of my neck to make sure its all gone. Providing they are free that should be it, if they find any then it will be radio but I will cross that bridge if I come to it.

It would of been done anyway had I been anywhere else in most other hospitals. 

Everyone have a nice weekend.

Hiya Roz_dog

Really sorry to hear they found some bad cells in your neck nodes - a bit more worry I know, but as you rightly say this is 'not major'. Hopefully the neck dissection will do the trick, if not, then you join the ranks of many folk on this forum who have had RT.  It ain't very nice but you will get through it and it will be well worth having it done.  One day at a time.... You have exactly the right attitude and will soon be looking back on all this as a bad memory.  Best wishes, Irene x

Thanks Irene for your message:)

Hi Vatch, I go in a week and a half time, quite quick, thanks for your wishes. Good luck with your results.

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