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 Rozdog

Just wanted to wish you all the best for tomorrow and wish you a speedy recovery.  Look forward to hearing from you soon.  Love Irene x

I have a question friends.  I know there are different schools of thought between different hospitals but I've been re-reading some threads today and wondering about the fact that I haven't had any follow-up scans during the time since my treatment ended in January.  I did ask about this and was told it was because they are able to see the site of my primary cancer (the one I had no idea I had) from visual exams of my mouth/throat (i.e. when they put the spatula on base of tongue and make me say AAAAH to the point of gagging).  I've lost count of the number of times I've tried to look down my throat in the mirror and see nothing.  I've always placed my trust in the team treating me and been happy to be sent home after monthly checkups with 'all well, see you in a month' but in light of others' follow-up treatment am now wondering if I should have been given a scan to confirm all is well?  I'm sure I must have a case of the anniversary jitters because it's just been in the past few weeks I'm starting to worry again about a recurrence although I have no symptoms - being a bit paranoid maybe?

Hi Irene and Nicola,

Thank-you for your words of support. 

I have my pre op drinks to take at midnight and 5am!:D These are meant to help quite a lot in recovery.

I have an early start to have the dye injected and then just a few hours wait until the surgery.

Its nice to hear from you knowing you have been there. I suspect the fear of it is worse than the actual thing.

I will update you all once I am out of hospital which should be only a few days later.

Thank you so much.

Hi Rozdog,

Just catching up on this thread and see you have surgery tomorrow.

Well wishing you all the best for the op and a speedy recovery. I am sure your mouth is going to feel strange for a while but eventually you will get used to it,especially once it has finished healing.

So sending loads of good wishes 

Hugs 

Annabel. xx

Hi Irene,

I can understand your worry and concern that they are only using their eyes to check for signs of returning cancer. I think we all get a certain reassurance with these scans/xrays etc.However like you I too only have a checkup where they feel and look albeit in a different place.!!! Also There are always slight risks in having scans /xrays  so if it isn't necessary then it's understandable they don't choose to risk it further. However if you are really worried why don't you talk to them about it next time you go? I am sure the will be able to settle your mind and if you are really desperate see if they will do one for you. 

Goo d luck with it Irene and you are definately not being paranoid. 

Hugs 

Annabel xx. 

Friends

Many of you will be aware that Access (branchial cyst thread) recently lost his battle - such a loss, a lovely man who supported so many people on this wonderful forum.  I've just received a PM via FB from Gary (Guzzle) who is unable to log in here at the moment, asking me to post details of Access's funeral arrangements as follows: 1015 on 19/11/14 at Wear Valley Crematorium, Coundon, Bishop Auckland DL14 8NR.  

Sad times.  Love to all, Irene x

Hi All, 
 
Sorry to post after seeing the bad news above. It brings home to me how horrible this illness can be. 
 
I have just returned from hospital after having my surgery on my tongue. I was in surgery for about 5 hours (I think), and took ages to wake up after. The surgery was a success.  
 
At the moment my tongue is the size of a golf ball, But I am in hardly any pain, the biopsy was far worse.;) It also has a thick yellow coating on it which scrapes off, did anyone else get this after tongue surgery? 
 
I am drinking special food drinks at the moment, but can swallow fine. They also said my speech is good and once the tongue has returned to a normal size I should be able to speak ok. 
 
Eating is a lot harder than i thought, I cannot eat anything solid or non liquid, I can manage yoghurt and custard. If I put anything solid in my mouth it just falls to the bottom and I have no control over it, apart from digging out with my finger. But its slowly getting better each day. 
 
My stay in hospital was fine, but I much prefer to be at home. I am up and about I go back in next week to find out my neck biopsy result. Hopefully these will be fine. I consider all this a small price to pay for life. 
 
Thank-you to you all. 

Hi Roz_dog!

First of all sorry if you get two similar replies to your post.  Am a bit of an old-timer and thought I had written a lengthy reply to you, but now looks like I lost it in the ether!

I am delighted to get some good news from you after all the recent bad stuff.  Great to hear your surgery was a success and although you are having a few eating issues at the moment, it is good to know that your speech is unlikely to be affected.  

This forum is great for sharing experiences and seeking advice.  I can't help with the coating on your tongue but it has certainly had a hell of a bashing so you are bound to suffer some side effects, hopefully short-lived! 

Hang on in there pal, before you know it you will be living life to the max again.  As you say, it's a small price to pay.  I keep reminding myself of that when I moan about food issues now and again (well probably more now than again if I'm honest!).  You are doing just great and this will soon all be behind you.  

Love Irene x

Hi Roz_dog!

First of all sorry if you get two similar replies to your post.  Am a bit of an old-timer and thought I had written a lengthy reply to you, but now looks like I lost it in the ether!

I am delighted to get some good news from you after all the recent bad stuff.  Great to hear your surgery was a success and although you are having a few eating issues at the moment, it is good to know that your speech is unlikely to be affected.  

This forum is great for sharing experiences and seeking advice.  I can't help with the coating on your tongue but it has certainly had a hell of a bashing so you are bound to suffer some side effects, hopefully short-lived! 

Hang on in there pal, before you know it you will be living life to the max again.  As you say, it's a small price to pay.  I keep reminding myself of that when I moan about food issues now and again (well probably more now than again if I'm honest!).  You are doing just great and this will soon all be behind you.  

Love Irene x

Hi 

Firstly, Roz Dog the white coating is probably thrush. If you tell the doctors, they will give you something for it as they did me. It soon went. Hope you soon start to feel better.

Irene - it is so sad about Access, isn't it? He'd want us all to remain positive though wouldn't he? 

Debbie

x

Hi Debbie, you are right, he absolutely would.  Best wishes Irene x

Thank you for the kind messages.

It is starting to go down now and I can swallow alot easier, the sore throat is also going.

I noticed some things taste different. I don't seem to like Tea anymore or orange.:D Sweet stuff tastes the same.:p

hardly intuitive.

Answer to below

Its not obvious how to navigate the system.

Jo  ..... Where has your glam avatar gone? x