Hi Colin, Debbie, Meerkat, Andrea, Annabel,

I'm finally out of hospital after ten days. My operation went well and my recovery has been quick. Apparently I'm "superhuman" accordingly my doctors as I have recovered a bit too quickly!!  Thy can't believe it!

The operation was 8 and a half hours and as planned, 50% of my tongue was removed and replaced using tissues/muscle and an artery from my left arm and a skin graft from my tummy. They also removed my lymph nodes on one side of my neck and removed two wisdom teeth! I was under anaesthetic at 10am on the Thursday morning then in an induced coma in intensive care until the saturday morning. I was then moved to the ward on the Sunday afternoon,

My tongue looks very neat. It's still very swollen on the one side, but the swelling has reduced a lot already. It's odd because part of my tongue is white as in the colour of my arm skin but the old part of the tongue is the usual pinky/red colour! The switches are dissolvable and should come out over the next couple of months. I was told to expect to not be able to talk as soon as I was awake but I was chatting away! My speech was fairly clear too so that pleased me, I didn't even need to use the whiteboard I had bought to communicate! My tummy wound has been fine until now - the dressing was removed yesterday before I left the hospital and it's become itchy and I'm aware of it all of the time whereas before I was not. My neck wound has been fine, very neat and tidy but I can not turn my head too much or too quickly and it has been tighter over the last 24 hours, so I'm going to ask the nurse to look at them today when I'm back at the hospital for an appointment to have the stitches removed from my arm. My arm is by far the worst wound, there is a large area on the inside of my wrist which will be scarred and then a long line up towards the inside if my elbow where the artery was. Luckily I'm not vain and I'm not worried about scars! This wound has been painful at times and it's still heavily dressed with a splint so I can't move it or use my left arm at the moment. I think the removal of the tooth wisdom teeth was probably the most painful part though! This caused a lot of swelling and bruising, I look as though I have been beaten up!

I've never had an operation before so I was very surprised at how incapacitated I was following the operation. I was not allowed out of bed or to sit up at all whilst in intensive care but the day after I got to the ward I was encouraged to move around but I couldn't do much at all. I needed help to sit up, stand, use the loo. My sight was a bit blurred and I couldn't even hold a book or text on my phone. I was very dizzy on my feet for a few days and I didn't expect that at all so that all threw me a little but by 6 or 7 days post op I became very independent. I had a problem with phlegm and saliva for a coupe of days in which I seemed t be producing lots if it but that has settled down now and 6 days following the operation I was allowed to try very small sips of water then on day 7 I was able to try soup. So that's my diet at the moment - soup, ice cream, custard, yoghurt and the nutrition drinks from the hospital. 4 days on and it's already getting tedious!

Overall, it's been ok. My stay in hospital was as comfortable as it could be and I salute all of the doctors and nurses who have looked after me, they've have done a fantastic job and I couldn't have asked for more. I've been sent home with tonnes of medications and instructions but I have felt totally at ease the whole time as I well well informed about everything.

It's so nice to be home and not be poked and prodded every couple of hours for blood pressure checks, temperature etc! I've missed my little girl terribly and everything all still seems a bit surreal, I still can't quite believe what I've gone through and that it happened to me. I now have to wait a week to find out if I will be needing radiotherapy but I'm optimistic that I won't. My surgeon is confident that all of the cancer was removed from my tongue during the operation but they can never be too sure about lymph nodes. It's been an experience but as always, you people were on my ind the whole time. I'm anticipated a long recovery time at home (approx 4 months) which I will certainly make the most of and do as I'm told and rest.

Speak soon,

Nicola

Nicola,

I have been wondering how you are doing when I found your post. It is wonderful that you have and are doing so well. I am delighted to hear you are "superhuman", and home already.

Well done for facing what you had to go through, and I am sure your positive attitude helped overall.

Look forward to chatting over the next few weeks of your recovery.

best wishes

Annabel.

Hello Friends

Just a quick update now that the first week is under my belt.  I was up at 3am feeling pretty sorry for myself and wondering how the hell I will cope with 5 weeks of this (bad taste and continual mucus getting me down already).  I've just re-read most of this thread and given myself a really good kick up the backside, which I think is just what was required!

Simon, I notice you gave Nicola some very sound advice to take each day at a time and not look too far ahead, which I think is precisely what I need to be doing.  I've ticked off week one and all I should be thinking about now is today.

So I've had 4 blasts of radio (23rd, 24th and a double on the 27th) and my first chemo on Christmas Eve.  I really shouldn't complain because I was so delighted that my taste buds were still OK on Christmas and Boxing Day and I had two lovely days with my family (without having to cook which was an added bonus). I had a bit of nausea especially early mornings but the anti-sickness pills usually did the trick by mid-day.  I had a continual dull 'sicky headache' but not too bad.  However by Friday my taste buds seem to have gone completely haywire, as expected.  Because I am still able to eat, I feel like I'm just shovelling stuff in because I still can, but not enjoying anything.  At first I was enjoying sweet things more than savoury, but now I just can't think of anything I would enjoy eating.  When I have a notion for something, then try it, just a big disappointment!  At the moment Heinz tomato soup is what I'm thinking I might fancy, so will give that a go.   The nausea I'm feeling now I'm sure is more to do with the muck in my throat rather than the chemo-effects - it just feels different somehow.

My chemo day was not as bad as expected and in some ways very therapeutic.  I met lots of other lovely people at different stages of treatment, all in good humour, many in festive hats and flashing earrings, just getting on with it and making the most of the day.  One lady had a very similar story to you Nicola in that she had had part of her tongue reconstructed.  She had been on PEG feeding pretty much from the start because of post-op mouth pain and I felt so upset that she was the only one in the ward having to turn down the chocs and sweets that kept being passed around.  My husband can be a grumpy sod and comes across as a bit of a hard man, but he raelly is the biggest softest lump inside (always first to cry at sad films!).  When we were saying our cheerios and Merry Christmasses and my 'new neighbour' was heading home looking particularly miserable, his wee face just crumpled.

On a lighter note, there was lots of laughter and banter too, mostly about the huge backlog of named bed pans in the loo waiting to have contents measured. Probably the worst experience of the day was having 3 attempts to get cannulised which meant quite a delay to getting my first drip going - I gather this is not uncommon.

So back tomorrow for a double zap morning and afternoon and pre-chemo blood tests.  My hospital is about 40 mins from home but luckily I have a friend and sister who live nearby so I will spend the time in between with them (including a nap).  My first double-day was Friday past and because I managed a good afternoon sleep I didn't feel too tired driving home.

So that's where I am at the moment.  Really nothing too much to complain about so far, other than the bad taste and being unable to enjoy my food.

Before I forget, Annabel - I've just ordered myself a copy of 'In Your Face' off Ebay - thanks for that tip.

Wishing you all the very best and thank you for all your invaluable advice.  The next time I need to give myself a kick up the rear, I will remind myself what you have all gone through with such strength and good humour and that I CAN do it too.

Love Irene x

Hi Irene,

Hope you get somerhing from the book and glad you found one on ebay.

I am sorry I haven't posted to you before today, should have but sometimes I am very tired after working like the last 3 days.

All holiday cottages now cleaned and prepared for people coming in for New Year. All arriving tomorrow.

Sorry to hear your going through a bad taste and mucous stage , sounds pretty yucky.

I am sure it will improve once you have finished your course of treatment.

Keep your chin up Irene, like Niccola you can get through this.

What is it about grumpy old men, I am married to one too, ba Humbug.!No he's lovely really, just goes round saying Ba humbug at this time of year.!!!!!!!

I have to say I laughed when you said your husbands wee face crumpled. Bless him.

Anyway I hope 2014 is a good year for you and you get ontop of this bloody disease.

Take care love,

hugs

Annabel.xx.

Hi everyone,

I hope you all had a lovely Christmas. Mine was a good one even though I was still suffering from the side effects of Radiotherapy.

I finished treatment 10 days ago and I think I reached the peak of the pain for the following week and I was taking morphine, codeine and Ibroprofen ( as well as laxatives!) I used the nebuliser a few times and the mucus issue got worse. It then turned green so I went to my GP who said I had a chest infection and prescribed me some anti biotics. I have a 7 day course so a few days to go yet but I already see an improvement on the green suff! Although I'm now producing a lot of gooey saliva which I'm having to spit out into tissue literally every few minutes. I'm getting through a loo roll each day and its getting annoying now so I really hope that settles down soon. This morning was the first time I can remember that I woke up without my tongue being in pain so I feel I'm now on the upward slope to feeling a little better. I have been extremely tired and sleeping an awful lot but these last couple of days I've felt slightly more human and less tired. Even managed a trip out to the shops today which is the first time I've been out in over a week! All in all, it's been a tough couple of months but I got through it, with the last couple of weeks being the worst.

Irene, how is your treatment going?  You must by now have competed week 1 - well done. How are you feeling?

Simon - did you enjoy your Christmas dinner and trifle? Any improvement on the night sweats?

Jo - did you manage to enjoy a glass of Bucks Fizz? Have any of Simons food tips been of help to you?

Thanks all for your previous posts and good wishes for Christmas. I wish you all a happy new year and let's hope it is a good year for us all, I think we deserve it. After my rough few months ( and I know I still have a way to go) I've made a list of nice things that I wish to do next year. I feel I need some me time to enjoy life a bit more rather than worrying and stressing or hospital appointments! I will be thinking of you all when I toast in the new year.

Speak soon,

Nicola

Hi Irene,

I just posted an update then read your latest. Well done for getting through week 1. I've been thinking of you this week.  I'm sorry to hear you were up in the night feeling sorry for yourself, I've had many a night like that over the last few months so I sympathise. I don't remember much difference with my taste buds after the first week, it was more around weeks 3-4 that I noticed a difference with eating with taste buds lost at around week 2. I'm glad you got to enjoy your Christmas though. Jelly was something I was able to eat for a while, you could try that, or rice pudding or custard.

Taking each day as it comes was definitely good advice form Simon, thinking ahead too much just uses up too much time and energy that you won't have at the moments. Ensure you tell the radiographers when you really start to suffer pain wise.  Good luck for this week, how are you getting on with the mask?

Will be continuing to think of you this week.

Nicola xx

Hi Nichola

I just wanted to say I've been reading your posts

And well done for getting though the treatment .

I do hope from now on its gets easier and you get

To enjoy time with your sweet little one.

Takecare Hun xx

Hi Nicola,

Belated 'Happy Christmas' to you!

So glad to read that you were able to enjoy Christmas! Did your little girl have a lovely time too?

Ah, the Buck's Fizz! I finally enjoyed a glass yesterday! Up until then, I'd had a few bad chemo days so we just postponed Christmas and yesterday, was Christmas Day in our house!!

My kids (21 and 23 so not really 'kids') are coming over today to have a meal and open their presents! Guess it's Boxing Day then?

Simon's food tips have been great! Also from a reminiscent point of view too! The good old 70's  We used to have ready meals back then you know ... Vesta curries and noodles (I think that's what the brand name was!) I was only young at the time!

Anyway, enough of my blether!

Keep up the speedy recovery after the radiotherapy! I remember being amazed at how quickly I felt better after its peak; each day far better than the one before!

Nicola, I wish you and everyone else on this thread a Happy New Year!  You're right, we all deserve a good year!!!

Take care, chick,  Jo xxxxxx

Hi everybody,

I hope that you all had a nice Christmas and I wish you all a happy and healthy new year.

Nicola, I really feel that you are on the downhill stretch now. The mucus issue should hopefully resolve itself over the next few days and you can hit the ground running in the new year. Well done for getting to this point and still having a positive attitude - that's what gets you through.

Things are generally good with me. My nightsweats appear to have eased significantly - I have not had one now for 6 days (I have my fingers crossed and I'm touching wood as I type). There is a small fly in the ointment in that I have a small but very painful ulcer on the side of my tongue. When I went for my check up on 19/12 it was painful but there was nothing to see - the oncologist said that he couldn't see anything to worry about. Of course within 48hrs the ulcer reared it's ugly head and is now visible. I discussed this via e-mail with the Macmillan nurse and she has arranged for me to see the oncologist at the end of this week in order that he can have a look at it. Hopefully it's nothing to worry about. One of the things with our situation is that it's easy to become paranoid about every ache, pain and lump. I'm adopting a 'better safe than sorry' attitude.

I still have periods of tiredness, I used to sleep for around 5 hours per night - now I'm up to 8 or 9. I'm still using the PEG for some easy calories each day - the tube comes out on 7/1 so that will force me to take food completely orally. I feel that I'm becoming too reliant on the PEG.

I didn't do trifle on Christmas day but I did do turkey, roast potatoes, stuffing and most of the trimmings (all soaked in lots of gravy). I then had a small amount Christmas pudding with a lot of cream.  I managed to eat about half of it - I find that you get to a point where you know that it would be foolish to struggle on any further. I even had a small scotch and coke.

Irene, well done for getting through week one. I can promise you that the time really does fly by and before you know it all this will be behind you. Meeting people in a similar situation going through the same experiences really helps - a bit like this group really.

Jo - I'm glad that you liked the food suggestions. I'm doing banana and lots of custard today. I had Angel Delight last night (butterscotch, of course). I remember the 70's diet with fondness along with a hint of shame - remember Cadbury's Smash (".....they peel them with their metal knives..........hahahahaha"). Seemed somehow sophisticated at the time). Nicola - you really had to be there!

Happy New Year everyone - 2014 will be much better than 2013!

Simon XX

Dear Nicola, Simon, Jo, Annabel and Friends

Happy New Year!

Despite my best intentions to be asleep long before midnight I found myself sitting up in bed supping an Activia prune yoghurt to welcome in 2014!  I had a slight 'chemo-head' again after Round 2 yesterday but in general it was better than Round 1 and I had a relatively good day yesterday with taste even making very fleeting reappearance.

Was feeling pretty green again this morning but the headache has eased as I've been flushing gallons

down my PEG as advised yesterday.  Last week I drank plenty on day 1 but less on day 2 and it didn't

even occur to me to put it straight into my tummy, so despite hating it at the start, I am already aware it is going to be good friend. I'd lost a couple of kilos since last week (oh how delighted I would have been to see that six months ago) which surprised me because although I've had little appetite I've been going through the motions of shovelling high calorie food down while I still can. They said the dietitician will speak to me soon and probably get me onto supplementary drinks.

The nausea feels very like being pregnant again - the very thought of some things (especially coffee

and alcohol) make me want to heave.  I did buy in a bottle of Advocaat to toast the new year (my

granny's festive tipple) thinking it might be a pick-me-up, but writing about it at it now is quickly becoming a bad idea!   Double radiography on Friday (sounds like a school timetable!) and that will be

week two ticked off.

Nicola - getting on OK with the mask thanks, I don't find it too claustrophobic.  However I had a lot of bother with glut in my throat on my last double session.  The last few days it's been that which has made me retch in the mornings, not the chemo, and I was worried about choking on the radio-bed especially in the later stages.  Radiographers assured me that if/when that happens (not often they said) just to wave my hand and they will release me/do it in stages.  I was worried that this was becoming a problem so early on but as I think I've mentioned before, I've had a problem with catarrh in throat for years so perhaps that's why.  Really pleased to hear you're beginning to feel a bit better after the infection/green goo.  Must have felt like a huge achievement to get out to the shops - well done you - onward and upward!

Annabel - thanks for yours, sounds like you've been a very busy bee over the past few days.  elighted to hear your life is returning to normal.  I'll let you know how I find the book.

Jo - sorry to hear your last chemo days were bad but glad you enjoyed a well deserved Buck's Fizz and what a good idea just to postpone the whole shebang till the 29th.  My best friend who emigrated to Australia in 1981 celebrates Christmas in July every year with a crowd of ex-pats (they do it in the December heat as well).  They rent a lodge in the Blue Mountains (or somewhere else where it's a bit colder) to re-live Christmasses past with all the works - decorations, hats, presents, food, drink, games (and probably hangovers!).  I'm thinking that's a great idea for those of us who haven't had the best Christmas 2013!  Vesta curries and ready-meals made me laugh again. I remember when I was around 12 staying with an adult cousin and his young family and had recently been experimenting

in the 'exciting new Vesta range' so asked if I could buy and make a Chow Mein for them.  I was used to my Mum's gas cooker at home and they had electricity.  The crispy noodles should only be in for seconds but I left them on the ring after switching off - they were of course completely cremated!

Simon - good to hear that you are on the up and the night sweats have eased off.  I can completely understand the 'every ache pain and lump' paranoia and I'm sure that will be all our futures but 'better safe than sorry' it must be!  Glad you enjoyed Christmas Dinner and scotch and coke. That's my hubby's tipple and occasionally mine but I'm more of a wine gal.  Up here (near Perth) he gets lots of stick for adding coke to whisky as you can imagine!  Support nurses said I should have one or two drinks over Christmas if I fancied it before the throat starts to nip - but it's just not of interest.  I was very disappointed not to find any Butterscotch Angela Delight (or any other flavour for that matter) in Tesco's the other day.  It all seems to be ready-pots of custard, rice etc.  No sign of Instant Whip either  Sorry Nicola, more tales from a bygone era!  I am now on the Quaker Golden Syrup instants for breakfast though and boy did I enjoy my ice-cream yesterday!

Well, if I do break the seal on that Advocaat bottle I will be toasting us all, but I've a feeling it may just be the lemonade!  We all deserve a happy 2014 and I'm sure mine will be from March onwards!

Love Irene x

Hi Debs and all of my friends on Cancer Chat. I just wanted to wish you all a great and positive year ahead, also to everyone else who is on here or finds themselves in this predicament . Good luck everyone .

Ferry xx

Thanks, ferry! Happy new year to you and everyone else here too!

Irene, I too was worried I'd choke on the phlegm whilst "masked-up"! However, I used to have a good spit in my large mound of kitchen roll (lovely!) which was always by my side and it was fine. I think the mucus slows down when you lie down!

Debbie

Thanks, ferry! Happy new year to you and everyone else here too!

Irene, I too was worried I'd choke on the phlegm whilst "masked-up"! However, I used to have a good spit in my large mound of kitchen roll (lovely!) which was always by my side and it was fine. I think the mucus slows down when you lie down!

Debbie

Many thanks Deb, that's comforting to know.  I have been stocking up on kitchen roll though!

So far I'm having a good day , just been to the shops to spend a couple of Christmas vouchers so a nice lift!