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.

Wow Nicola,

Fantastic that you've finished your treatment!!

I was interested in Simon's food tips (thank you Simon!) as although I don't have a problem putting food in, my stoma means that my food transit is very quick and I'm not getting the full 'goodness'  and calories  from what I put in! I remember the 70's very well, so Frey Bentos pies and butterscotch Angel Delight were food highlights in my youth! I actually had a Frey Bentos pie some weeks ago . . . Smaller than I remember, but then, most things are these days! Curly Wurly and fudge bars are very minuscule nowadays!

Your reference to your weight made me feel positively gigantic! I'm trying to reach 50kg for Christmas! (Not sure what that is in stones, because I've 'converted' to the hospital measurements! As I was a 60's child, the conversion to metric has been a bit of an puzzle! I'm still a pounds and ounces, feet and inches kinda gal!

Like Simon says, I hope you can enjoy a good Christmas and to see the smile on your little girl's face will bring joy to you, I'm sure!

I'm looking forward to my one little glass of Buck's Fizz on Christmas morning and I'll certainly be raising my glass to you and all the others on this wonderfully supportive forum . . . shame we had to meet here, but it's good to be supporting each other!

Take care, Nicola and I look forward to reading your future posts!

Wishing you love and joy over the festive period, Jo xxx

Well done Nicola,

Knew you would get there.

Wishing you a relaxing and peaceful Christmas, hope your little girl has a wonderful time.

Hope things continue to improve over the next few weeks.

I shall drink a Baileys to your health on Christmas day.

hugs

Annabel. xx

Dear All

You first Nicola - a huge pat on the back and virtual hug for getting that final treatment under your belt.  I am so pleased for you, even though you are probably going through the worst of the pain now, it will all have been worth it.  It must be wonderful not to have that daily trek to hospital, dreading the next chemo session and the icing on the cake your weight is up a notch and you get to spend Christmas with your daughter.  I do hope you have a lovely day. You haven't scared me at all, I would rather know all the facts and possible side-effects in advance and anything less nasty than what you've experienced will be a bonus. I keep being told that everyone has different experiences.

Debbie, Simon and Meerkat - thanks for your good wishes, I'll keep you all posted.  I've been having a laugh at all the 60s/70s food chat, especially about things getting smaller!  My sisters and I were joking the other week that Mum used to feed 5 of us from a Fray Bentos steak & kidney pie eeked out with lots of spuds and veg!   Penguins have also shrunk a lot.  When my husband was in the army he used to eat a lot of tinned food and he still has a soft spot for the old Fray Bentos soggy pastry with all that gravy, a few lumps of kidney and half and inch of steak if you're lucky!  So it's a great easy swallowing tip for me Simon and something that will be a 'treat' for my hubby too.  Meerkat I share your feelings completely on the metric system!

I had a lovely get-together with some school friends this morning.  We had a real laugh and completely avoided the cancer topic.  I had confided in one of them a while back but hadn't seen the other for ages and decided not to drop it on her just before Christmas, so that can wait a while.  Also I had an email from another friend wanting to organise a school reunion for 1st February - oh dear, my last treatment is on 31st Jan!  She and I organised our first one 5 years ago and I'd love to be involved again but I think I'll have to come clean with her too and see if we might put it back 2-3 months.  It would be something to really look forward to.

I'll keep you posted and wish you all the very best .  Merry Christmas!

Love Irene x

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

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

HELP!  I can't believe I've gone from two really upbeat 'normal' days to this.  Since yesterday my throat is on fire and I am scarcely eating at all.  Have also been sick 3-4 times since last night for the first time since treatment started - not chemo related, purely a combination of the overdose of dairy products in my tum and muck in my throat.  The very word 'creamy' makes me heave now.  When I saw my support nurse on Friday she told me I was doing all the right things re eating, just trial and error.  I explained the dairy intake was beginning to make me queasy in itself, tried some different soups, etc.  They said I'd see the dietician on my next chemo day as I've lost 2 kilos since last week.  Today I feel as weak as a kitten, anything that has gone down has come back up (inc anti sick pills and painkillers) and I feel that right now I just want to start tube feeding and not have the stress of trying to eat for the sake of it.  I know everyone has different experiences, but did this kick in very quickly and suddenly for others?   They upped my cocodamol dosage last week but it's only barely taking the edge off the pain so hope I can get something stronger soon.  I also have mouthwash as well as Difflan which is soothing but short-lived.  I just tried spaghetti hoops - only managed a couple of spoonfuls.  Also finally found and tried butterscotch Angel D and again can hardly taste it but everything just too damn rich and stomach-turning.  Feeling sorry for myself - any tips?

Irene x

Hi Irene,

I'm really sorry to hear that you are experiencing some difficulties at the moment.

Thinking back to my treatment this was about the time that I began to suffer with extreme nausia, uncontrollable vommiting and sore mouth/throat. Not sure which chemo you're on but if it is cisplatin like mine then this is renown for sickness related issues. The hospital should supply a strong dose of anti sickness medication - both during the chemo and to take home - to deal with this. Not all anti sickness meds work for everyone. I was told that I should go to my nearest A&E should I experience uncontrollable vommiting - this I did twice and I was admitted on both occasions to allow me to be rehydrated and for anti sickness medication to be provided via a drip. I was also in possession of a card that I had been given which allowed me to be fast-tracked in A&E - much to the annoyance of the people waiting there. Uncontrolled vomiting during treatment is a serious business and should be treated as such. I do sympathise as the feeling of nausia slowly grinds you down. It is important to keep your nutritional intake up and so the nausia does need to be dealt with.

I think that I moved over to solely PEG tube feeding at about 2 or 3 weeks in. I was unable to swallow more than once or twice a day and even then only a small sip of water. I was completely unable to take food by mouth. Once I'd accepted that the PEG was my life-line and needed to be relied upon totally for a while, things became easier - it took pressure off me and I was able to keep my calorie intake up.

In relation to the pain, Difflam was good but at about the stage you are at I had moved on to morphine (Oramorph). This really helps with the pain management. People may tell you to gargle with aspirin etc, but I quickly realised that I need to move onto the 'big guns' to keep the pain in check.

It might be an idea to do two things, firstly to ask that your anti-sickness meds are reviewed, and secondly to ask for Oramorph. If you find yourself vommiting and unable to keep food or medication in then seriously think about going to A&E - I found the service there first class and they were able to control the sickness and nausia far more effectively than the staff at the cancer clinc were.

The above comments are obviously based solely upon my own experiences and I have no medical expertise whatsoever.

Good luck, Irene. It's a rocky road but it is worth the journey. Things do get better and soon this will all be a bad memory.

Feel free to ask anything you want.

Chin up girl!

Simon XX

Hi everyone,

Happy new year to you all!

I've started the new year feeling positive again as I feel noticeably better and more like my old self. I'm feeling stronger and I'm able to cope with doing more things each day without getting tired out so easily although I'm constantly being reminded not to over do it! I have been staying with family for two weeks but I'm back at home now. I'm only taking cocodamol three times a day now but I have some anti biotics for oral thrush (second lot since treatment started) and I've also been prescribed some more anti biotics for my chest infection. Although this improved it got worse again and the green stuff is back! So apart from yet another problem with my PEG, I feel ok. Unfortunately I have an "over granulation" of skin at my PEG site which is where the skin tries to grow over the tube. It was very sore last week so I called the community nurse out to have a look at it and she finally showed me how to unclip the PEG and pull the plastic bit away from my skin so I can apply some steroid cream which she prescribed. It feels a lot bette now, but looks very ugly. I have a huge black scab stuck to my skin - urgh! I'm told this should fall off though in time. I'm still unable to eat via my mouth and still have no taste but it's still early days and I'm in full swing with using my PEG now and I just get on with it. It's become normal for me. I'm still spitting out the extra saliva/mucus. I keep remembering that Debbie said I should be able to stop spitting by new year, unfortunately I've not been tha lucky, but I do see an improvement.

Simon - glad to hear the night sweats have improved and that you could enjoy Christmas dinner. Are you going ahead with the PEG removal tomorrow? Is there an update from the oncologist about your ulcer? I was only treated on one side of my mouth but I now get ulcers on both sides of my mouth. I worried about this too but my head and neck nurse assured me that it's to do with the imbalance of chemicals in my mouth from the treatment and was completely normal. Hopefully this was the same for you.

Irene - sorry to hear how you are feeling. You must be beginning week three now and when I think back to my week three, my taste buds had gone but I didn't feel too bad otherwise. Ask if you can speak to somebody next time you go for treatment, don't wait for your next review. There is always some advice or medication that can be offered rather than you suffering, the main priority is to get through the treatment - radiotherapy especially - so you'll get all the help you need to ensure this happens. If you are struggling with food/liquids via mouth, put some through your tube instead. You can still try and eat orally as well but anything you can't manage that way, use the tube instead. Doing a gradual change from mouth to tube is probably better than a straight swap as I did, as I then found it hard mentally to get used to it. I hope you begin to feel better and keep telling yourself that this isn't forever. In a few weeks time you'll have completed treatment and can begin to recover. That's now I got through it. Always come on here for help and support too    I've been thinking about you.

Speak soon,

Nicola xx

Oh Irene

I am sorry to hear you are having such a rubbish time at the moment with side effects of your treatment.

I can't really give you much in the way of advice as haven't gone through what you are. I did wonder wether sucking hard boiled sweets would help at all. Or antiseptic throat sweets. Tell me if I am talking rubbish , I won't mind. I thought they might help with overcoming the dairy/muck in your throat bit. /and give you a few caloires.

The only other thing I can help with is sending a load of supportive hugs and best wishes,

Annabel. xx

Hiya Nicola,

Welcome back and Happy New Year to you. One things for sure - this year will be better than last year!

I'm glad to hear that you are making good progress and that you are slowly feeling stronger. You are making faster progress than I did but I put that down to my advanced years! Sorry to hear about your PEG though - the PEG tube has really been problematic for you right from the beginning. I hope that things improve now that you can adjust it.

I have deliberately refrained from using my PEG for 5 or 6 days now. This is in readiness for its removal tomorrow (which I'm going ahead with). I'm not quite managing to get in the 2500 calories orally but my weight is stable so I'm happy to go ahead. The tube has really been a life-line for me as I went several weeks without any food or drink by mouth. Having said that I'll be glad to see the back of it. It still amazes me to think that they weren't going to give you a PEG.

I'm sure that your mucus situation will resolve itself soon. How I hated carrying a blooming kitchen roll around with me!

The oncologist looked at my ulcer on Friday and said that he was confident that it wasn't anything to worry about. He was of the view that where my tongue is still slightly swollen it was rubbing on my back teeth that this had led to the ulcer. The ulcer has shrunk slightly over the last 48hrs and is now less painful than before. That is a huge relief because, as you know, these things can play on your mind. I'm sorry to hear about your ulcers - I found that Difflam was good at dealing with the pain (it stings a bit at first but then it goes to work and the pain subsides for a couple of hours).

Well done for getting this far, Nicola.

Speak soon.

Simon xx 

Hi Irene, just wanted you to know that I'm thinking of you and hoping you're ok. I really understand these difficult times as it wasn't so long ago I was in your position but it feels so long ago already! Three weeks after treatment has ended and I'm feeling pretty good! This will be you before you know it!

Also, the book Annabel told you about is a brilliant read, I couldn't put it down. Annabel told me about it too a little while ago and I went straight onto Amazon and ordered myself a copy.

A big thumbs up for completing week three, rest up over the weekend xx

Hi Simon,

How was the removal of your PEG? Did it go ok? Was it all straight forward and pain free? Are you still finding it a little painful to eat/drink? I hope you're doing ok. Yes I agree that any ulcer, pain or lump in the mouth is going to be a huge worry for us going forwards, however, we must remember that the chances of it being anything serious are very slim after the bout of radiotherapy we have had, as the whole area has been sterilised. Still well worth getting checked out though, I've had my oncologist look at a couple of ulcers in my mouth too during treatment.

My PEG is lot better thanks, the nasty big black scab has now fallen off following the use of some steroid cream twice a day and I can now spin it again. I had a review yesterday with my head and neck nurse, dietician and speech therapist who all said that they are really pleased with my progress and say I'm doing really well. I had to get a second round of anti biotics from my GP for my chest infection, these are stronger and I have to take four doses a day. That along with another dose of another anti biotics for oral thrush, four feeds a day and three doses of pain killers and a laxative, I feel like I'm constantly filling my PEG with something! I'm well used to it now though and do it all without thinking about it. God only knows what I would have done without my PEG, as troublesome as it has been for me! The mucus issue is noticeably better but I'm still carrying a loo roll everywhere I go!

I say well done to us both for coming this far!

Speak soon,

Nicola xx

Hi Niccola,

So glad to hear you sounding so upbeat and chipper.

Happy New Year to you and wishing you all the best

Hugs

Annabel. xx

Hi Nicola,

I am so pleased that you are making such good progress. I'm sure that the mucus issue with resolve itself soon - that for me was one of the worst side-effects.

The PEG came out without any problems. I had sedation - you don't go to sleep but you get a bit drowsy and before you know it it's all over. I now have what looks like a small bullet hole in the middle of my stomach. It is nice not to have the tube flopping about everywhere.

You're right when you say that PEG feeding becomes part of the usual routine. I used to wander around the kitchen watching TV whilst feeding or medicating myself. I used to mutter the odd rude word when I removed the syringe without closing the valve and the contents would  squirt out everywhere (much to the entertainment of my wife) - I did that frequently in the beginning - happy days!

Things are generally still going well with me. I am now finding that I can eat food that is hotter than lukewarm in temperature and I can now take soft bread and slightly rougher food (fish in breadcrumbs covered with sauce for example). My tongue and mouth are slowly becoming less sore.

I visited the dentist for a regular checkup today and I discussed my lack of saliva with him. Apart from the obvious increased risk of decay, he mentioned that a number of his other patients who have had this issue have found that regular rinsing with salty water can help to stimulate the saliva glands back into life. I was aware of the cleansing action of salt water but I hadn't heard of this potential benefit. I will give it a go as there's nothing to lose and something potentially to gain. I'll let you know how this goes.

My appetite is well below what it used to be pre-treatment and I haven't put any weight on, but I'm sure things will improve now that my sore mouth is getting better. We're going to try a Chinese takeaway tomorrow night - that would have been unthinkable a couple of weeks ago. A curry is a long way off yet though.

One strange thing - As each day goes on I develop a strange double chin. The area under my chin seems to fill with fluid and when I get up the following morning it's reduced again. I've done some research and this appears to be something called lymphedema. It's caused by the frying of some of the tubes leading to the lymph nodes. I don't think it's serious and as I'm not considering a career as a male model I'm not too bothered. Apparently it may resolve itself in time. There is a video on YouTube showing how to massage it away if it's a problem - I can't post the link as this site won't let me but anyone reading this who is interested can search YouTube using 'Lymphedema self massage'.

I really am so pleased the progress you are making, Nicola - well done.

Simon xx

Dear Simon and Friends

Bless you Simon, I saw your message just as I was getting ready to leave for hospital but didn't have time to reply and they kept me in for 3 nights which was just what was needed to sort things out.  I retched and vomited all night.  Just seemed to be an endless white then yellow river if you get my drift.  I even wrote a rather dark and disgusting poem about it later!   Rang hospital who said no need to go straight in as my temperature was fine but to report to the Ward first thing going in for radio downstairs anyway and they would admit me to try and sort things out.  I really should have called earlier in the day but it's a lesson learnt.  They did say that it was likely the double treatments to compensate for Public Hols may have caused a sudden excess of mucus.  Anyway I also had a touch of thrush, so medicine for that.  Was put on a morphine/anti-sickness driver for 2 x 24 hour infusions plus rehydration drips.  They reviewed my usual meds (I am on Domperidone - why does it sound like champagne? four times a day) plus a 3 day thing the name of which I've forgotten, plus steroids plus the anti-sickness drip that goes through just before the Cisplatin.  They have always stressed that they can try lots of anti-emetics if required.  So on the Ward I also had 2-3 injections for sickness and they've given me some of that home with me too.  I was also on Oramorph and that was  brilliant, however I could tell that my dedicated support nurse was surprised they had put me on it so soon.  I have some of that at home now too but have not yet taken it as the throat has calmed down considerably and would like to hold off using it for a bit longer as I know I'll need it in later stages.  So back home yesterday like a new woman, albeit almost completely PEG feeding now.  Just hadnt expected it all to happen so suddenly!  I'm struggling a bit to get the right quantities down me but I think that needs my bowels to swing into action first - sorry TMI but I guess we've all been there!  Thanks for the info re A&E though, it's a 40 minute drive from home to Ninewells in Dundee, but there is an A&E at our local hospital in Perth so will bear that in mind.  I hope all is well with you, I'm not very good at picking up all the threads and I don't want to sound all 'me me me'!  Oh yes I think I remember there is no concern about your mouth ulcer, thank goodness.  I have a few of those at the mo which they say are not linked to the radiotherapy as you can see a definite line now where they are treating me.  It's more to do with teeth rubbing against tender/swollen tongue as you also described.

Nicola - so glad to hear you are on the road to recovery albeit slowly.  Pity about further PEG problems though, it really has been a thorn in your side added to all the other problems you could well have done without.  So nice to know you have been thinking about me and yes, that is me at the end of week three now.  I have learnt the lesson to ask for help when needed and have called my support nurse again today.

Annabel - lovely to hear from you.  Re sweets I've been trying everything under the sun I think.  For a long time Ricola herbal sweets were working for me but now almost anything with fruit in nips like mad  However today I did discover that I am enjoying sparkling water better than plain so that's a bonus.  I just wish I could find something that tastes nice though.  Strangely enough I always manage to eat well on chemo days in hospital.  I think they said this was likely to be the effect of one of the pre chemo flushes?  I was amazed to eat a whole bowl of soup and then custard on Tuesday!  That reminds me of another story, when I went down from chemo ward for radio I was hooked up to driver drugs on one side and chemo drip on the other.  When I came out of radio (helped by therapists to dress) I was sitting in the waiting area for the porter to wheel me back to ward when I realised my right hand was hurting like hell and when I looked down it was a big balloon.  The radiotherapists said don't worry a nurse is coming for you shortly (to escort me back to the ward).  I said I was fairly sure this needed urgent attention, but luckily my nurse arrived seconds later (an auxiliary I think) and went oh my god GET THAT SWITCHED OFF NOW furiously stabbing at buttons on monitor, and marched me back up with my arm in the air.  No great harm done but fortunately it was only the pre-chemo flush going through.  I asked my chemo nurse what would have happened if it had been the chemo going into tissue not vein and was told ' erm something more drastic altogether' eek narrow escape!  Oh yes and I got the book and read it within a day.  I have now given it to my chemo-buddy Donna who has been through a very similar experience with having tongue reconstruction.,  Thanks so much for recommending it.

Lots of love and thanks to you all.

Irene x