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

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 Annabel (and all my chatroom pals)

Lovely to hear from you and thanks for asking!  I'm really good thanks apart from still not enjoying my food much, but I think it is still gradually improving and I know I've come a very long way.  My treatment finished end January and I was back at work part-time from April.  I started off at 2 days a week and gradually built it up with a mixture of working from home and the office.  We have a really big event the first weekend of July (Scottish Game Fair at Scone Palace) which is a really hard slog physically with lots of extra hours involved.  I was pretty worried about how I might cope with that. As it turned out I had a recurrent throat infection all through June which took several courses of different antibiotics to shift, and I wasn't well enough to work the whole weekend.  I've been feeling pretty normal since about the end of July, apart from the food issues, so nothing to complain about, although I do about the food!  I hear myself starting to go on about it at great length whenever people ask how the eating is going and realise I must be boring them to death, so I tell myself I must learn to say 'fine thanks'  and then zip it!  Nicola and Fray Bentos, I think this answers a question I saw in an earlier post and forgot to reply to - your response made me laugh Simon as it's exactly what I feel!

I've been meaning to post an update for a while but have been really busy with my elderly parents (90 and 88).  Mum was not long home from hospital after her second artificial hip dislocated, then Dad had a week in Ninewells after a nasty fall and bang to the head, home for a week, then has been in his local 'cottage hospital' GP unit for the past 3 weeks.  He's much much better, but getting increasingly frail.  So lots of hospital visiting, occasional overnight stays with Mum.  Glad I have two sisters to share it with but one of them is now away to Ireland to visit her son and family so it's going to be another really busy week.  Hopefully Dad will be back home soon, just waiting on getting morning and bedtime care package back in place for them.

How are things with you Annabel?  I hope you're continuing to get good feedback at your checkups?

Well it hadn't clicked until I came on here to read the latest updates that it is a year today that I had my first operation to remove the lump from my neck which started the whole thing.  At that stage it was thought to be in my parotid gland and 95% likely to be benign, so it wasn't until lab results came back that I got my diagnosis on Hallowe'en which will probably stick in my mind forever.

So many of us had a pretty rotten Christmas last year so hope everyone is looking forward to making up for it this year.

This forum was such tremendous support for me during the difficult days and it was you Annabel who recommended that wonderful book 'in your face' to me and Nicola.  It helped me a lot and I passed it on to one of my chemo-buddies back in January.   I've just re-read some earlier posts and it's great to see how we have all moved on.

Nicola - it was great to see your photos and put a face to your name.  I tried uploading mine but had problems with file sizes and cropping, might have another go now that I have a bit of spare time on my hands.  Meantime, if any of you are on Facebook and would like to say hello, you should be able to find me by searching for Irene Johnston (nee Murray) from Bridge of Earn.  My current profile photos are me and my daughter in pirate fancy-dress and a big group of girls in hill-walking gear (Amy and her mates who climbed Ben Nevis for our local hospital's cancer campaign last month).

Gary (Guzzle) I think I found your page but wasn't 100% sure, I will send a PM in a minute and hopefully you will confirm it's you!

Best wishes to everybody - keep well.

Irene x

PS - been feelin a bit 'maudlin' today, reflecting on the past year which prompted me to try and hook up again with my 'chemo-buddy' Donna who also read the 'In Your Face' book and found it really uplifting after experiencing tongue reconstruction.  We sat together in chemo a few times, exchanged emails and I visited her when she was admitted to the ward at the same time as me.  I feel like I've been kicked in the stomach as I've just found out via google and facebook that she passed away back in April.  Just feeling gutted.  Have others had this experience?  I made friends with two other lovely ladies when I was admitted for a few nights with extreme sickness/dehydration, both of whom lost their fight shortly afterwards.  I will never forget them though.  Feeling very sad. x

Access 14 from branchial cystvthread is ill. He is a lovely person. Hurts. G.

Access 14 from branchial cystvthread is ill. He is a lovely person. Hurts. G.

So sorry to hear that Gary.  I followed the branchial cyst thread to start with as there was a suggestion that's what mine might have been.  I remember Access as a regular contributor, always supporting others.

Irene you did indeed find me and succeed where Nic failed!

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 

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