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.

Hi Nicola,

I'm so pleased - you're nearly there. One more week and then no more travelling to the hospital for the daily zap. I remember how that motivated me towards the end of my treatment.

You are right about the mucus - this was a real problem for me. I used to carry a kitchen roll with me everywhere I went. Normal tissues were just not up to the job. Without getting too graphic, I did wonder where all this stuff came from - it seemed to be neverending. The good news is that it went away fairly soon after the treatment stopped (maybe after a couple of weeks). The nebuliser helped a little bit.

I too had a PEG lady come and visit very early on. She showed me how to turn the PEG around, and that was pretty much it. She said that she would phone or come back but that was the last I heard from her. The only other assistance I have had with my PEG was from the nurses at the weekly check-ups. I'm still using my PEG to put in 2 pots (800 calories) first thing in the morning. That is because I still need to load up on calories and my mouth/throat is still slightly sore. I have debated with myself delaying having it removed for this reason but I think I will go ahead on Friday - I have found some high calorie things that I can manage. Last night I had a Frey Bentos steak and kidney pudding soaked in gravy (disgusting, I know). I could just about manage it and the important point is that it was 900 calories. Soups and things like tinned spaggetti are all very well because they're easy to eat, but they contain very little in the way of calories. I can drink the NHS pot meals but they taste so rich (no doubt due to the high calorie content). Having the tube removed will make me go down that road though. I'm now up to 10.10 - I really want to get to 12 stone plus. The lightest I've been is 10.5 at the end of my treatment.

As you know, I went to the GP last Tuesday about my low red and white blood cell counts, the nightsweats and my aching limbs - to give him credit things have moved quickly after this. I went for a neck, chest and pelvis CT scan on Friday and I am seeing the haemotologist on Wednesday. The GP explained that in very rare cases a high dose of radiation can prompt certain blood disorders, he did say that he couldn't believe I would be that unlucky - we'll see! Also, I have my first ENT oncology review on Thursday and then the PEG removal on Friday - all in all, an action-packed week ahead.

Sorry to hear that you've been sweating at night. I've done a bit of research about this and in well over 95% of cases the cause is not serious. It can be caused by the stress of all that is going on at the moment. Also, the chemo drugs can cause sweating at night - this should go away within a few weeks after the last chemo session. True night sweats involve one waking up and finding oneself absolutely soaked - almost as if someone has thrown a bucket of water over you whilst you were asleep. When it happen to me the other night I immediately took my temperature and found that I was one degree below normal - so it's not a fever as such. I hoping that I'll get to the bottom of this on Wednesday.

Like you, I found myself to be very weak during the last week of treatment. My wife had to take time of work to take me to hospital for the last few sessions. Remember to accept all offers of help and assistance.

We shall all be thinking of you this week. It's a funny thing but  even I'm looking forward to you not having to go for your daily zaps!!

You've come a really long way and there is only a short distance left to go - well done, Nicola! Get this week out of the way and then it's all downhill - yippee!

Best wishes,

Simon XX

Well done, you two!

Nicola, you are almost there! Yuk! That mucus! I used to carry a bucket around but as Simon says it does go a couple of weeks after you stop the radiotherapy! By New Year's Eve, you should have stopped spitting!

Good luck for Friday, Simon. That will be a relief! Can you open your mouth? I struggled to open my mouth very wide so I had to flatten chocolate eclairs to squeeze them in! I thoroughly recommend the mini eclairs for a few extra calories!

Keep going, guys!

Debbie

Hi Debbie,

Yes, I can open my mouth but it is difficult chewing and swallowing becuase of my continuing sore tongue and throat - I've got a large ulcer on the side of my tongue right at the back that is very painful. Things have got worse over the weekend.

In readiness for when I am without a tube I tried a bowl of runny porridge this morning - gave up half way through. Even gave up on drinking the NHS milkshake and reverted to the tube. If this keeps on I might have to delay having it removed - as much as I am looking forward to being without it.

Nicola - only 4 more days after today!

Simon. xx

Hi All,

During my review appointment yesterday with the speech therapist, nurse and dietician, they have told me I will need to be admitted to hospital if I lose anymore weight. I am currently 5 stone 5, this sounds tiny but I am very petite, only 4 ft 11" tall and normally only weigh between 6.5 and 7 stone. I don't think I've ever been heavier than 7 stone in my life, other than when I was pregnant. So it's no shock to me that my weight is this low, my aim was always to stay above 5 stone if I can. But they have other ideas! It baffles me that in the beginning they said I wouldn't even need a PEG at all and I had to beg for it. Now they say I'm losing too much weight! I told them blank, I'm not going into hospital, not a chance. I opted for the PEG as I was worried I wouldn't be able to eat and I didn't want to risk being in hospital to be fed fed via my nose. So I went through all of that pain and problems of having the PEG, so there's no way that's all going to be for nothing! They have said I must try some ice cream or anything I can manage to add some calories. I have been told to have five Fortisip drinks per day going forward, I've been having four so I will now move up to five.

I went to the supermarket yesterday, had a really good look around to try and find things that I could possibly manage to swallow. I bought a few things but I know it's probably a waste of time but I will give it a go. I'm finding that the consistency of ice cream, custard, yogurts are the worst things as they tend to stick to my throat and my throat/pallet are in the area of treatment so also sore and ulcerated. So I'm leaning more toward drier consistencies, such as a biscuit or cake, washed down with water. I'm going to try them today. Can anyone suggest anything?

A feeding machine was also talked about, apparently I can hook myself up to it at night to feed me so that's something to think about. I'm also going to be given a nebuliser tomorrow to help with the mucus. I felt I was doing well but yesterday's review has bashed my confidence. I'm trying not to listen to them too much, I know what I can manage and what I can't. I desperately want to stay out of hospital so I will force myself to swallow something and I don't feel that being in hospital will aid my recovery at all. I need to be with my little girl, especially at Christmas.

Annabel - I won't be able to have Christmas dinner this year unfortunately. That was my initial target following my surgery back in September but that was before I knew I needed radiotherapy and chemotherapy. I'm using the PEG all the time now and I anticipated another couple of months before I attempt to eat via my mouth, possibly longer. My daughter is only two so doesn't understand all about Christmas yet but she does get very excited when she sees Christmas trees etc! She has rearranged all of the baubles on ours numerous times already and only the chocolates at the top of the tree are still in tact! I think I'm more excited than she is, I can't wait to see her open her presents, that's what's spurring me on right now.

Simon, sounds like delaying the removal of your PEG could be a good option for you. Your body has been through so much, perhaps everything is taking a little longer than usual to heal at the moment. Maybe let your doctor get to the bottom of the night sweats and nausea before putting yourself through something else? I was glad to hear you've had similar contact with the nutritionist regarding your PEG so I'll stop worrying about that for now. Thanks for your reassurance about the sweating, I was hoping that would be the case. This is all so un-glamorous! Do let us know how your appointments go this week, I'll be thinking of you.

Debbie, thanks for your reassurance also. This mucus is never ending, if I don't spit it out, it just dribbles out of my mouth! It's horrible! I've taken on board what you said and am counting down to the new year for when it might let up a bit!

Never have I wanted to wish time away as much as I am now!

Speak soon,

Nicola xx

Hi Nicola,

Really sorry to hear that you're having issues with your weight.

Thinking back to what I was able to eat......

The NHS milkshakes by mouth or PEG - these are a good option as they are so high in calories. 400 per pot is a lot and you will struggle to find anything higher in calories of the same volume.

Soup (veg or potato & leek etc). The soup isn't high in calories but I used to soak some soft buttered bread in it (Warbertons is high in calories).

Scrambled eggs, cheese omelettes and fried eggs.

Tinned rice pudding (although you might need to water down with cream or milk as I found it quite thick).

Tinned macaroni cheese

Microwaved baked potatoes (the skins go soft instead of crispy if you do them for about 8 mins turning once) with spaghetti hoops and grated cheese.

Tinned spaghetti bolognase.

Tinned ravioli

Angel delight (butterscotch was nice).

I personally couldn't manage anything dry. The food pump sounds like it might be a good option - it's surprising how hard it can be to eat when you have no appetite. It is amazing to think that you had to persuade them to allow you to have a PEG fitted.

I phoned the hospital yesterday and asked them to cancel my PEG removal for this Friday as I feel that it is just a week or two too soon. They said that they would reschedule for early in January. I still use the PEG for two pots at breakfast and I would struggle to make the required 800 calories per meal without it. Last night I had another Fray Bentos steak and Kidney pudding - they really are quite disgusting but it's 900 calories.

Good luck for this week, Nicola. We're all thinking of you.

Simon. XX

Hi Nicola

Thanks for yours.  I haven't spoken to MacMillan yet re the financial stuff, but I will certainly do so.  I'm still working (till Friday) with lots still to do/notes to write up so I can hand everything over feeling reasonably relaxed about being off for so long.  We are a very small team so my absence will have quite an impact and I'm trying very hard to leave comprehensive notes on all that my work entails before I leave them in the lurch.  So I'm oping to get down to paperwork/admin stuff for myself between Christmas and New Year when hopefully I still have a bit of energy.

I now have my full treatment plan.  I start on Monday with radio, then both radio and chemo on Tuesday.  Several days of double radio morning and afternoon to compensate for the 2 days holidays at Christmas and New Year. Because I haven't really had any pain/symptoms other than the lump removed from my neck, it is so weird that sometimes I can still forget this is happening.  I do know I am running out of steam at work but only 2 days to go; I think that is the only sign that I am ill.  Therefore when I went to hospital this week (simulator sessions for final checks with my mask) after not being there for a week, it suddenly hits home again that this is for real.  Oh, they also checked my PEG, which has eased up considerably but sometimes can still be uncomfortable) and are happy that it is OK which is reassuring.

I've just seen your later post so will reply to that in a mo....

Best wishes

Irene x

Well Nicola, you are certainly going through it now and my thoughts are with you.  It's what I've been well warned about, the end of treatment and the few weeks after are the very worst. To hear about it direct from you is a bit daunting but also good for me to know exactly what I might have to face.

I will keep my fingers tightly crossed that you manage to keep your weight stable to avoid hospital at all costs and enjoy Christmas with your little girl.

I dread the mucus thing.  I have had a problem with excess cattarh in my throat for around 3 years (post nasal drip they call it - just that my body is over-producing cattarh) and have been to-ing and fro-ing to my GP with this complaint since it started December 2010.  When I got this diagnosis I was convinced there must be a connection and I've asked the question of every single medic I've crossed paths with, however they all say it is highly unlikely to be related. Anyway, forewarned is forearmed!  I hope it settles down soon and really do send my very best wishes to you. 

Let's all look forward to a happy and healthy Christmas 2014.

Irene x

Hello Simon

I've been following Nicola's story and taking note of your nutritional recommendations.  It takes me back to the novelty convenience foods which arrived on the supermarket shelves in the 70s - especially Fray Bentos pies and Angel Delight!  I will certainly bear all your suggestions in mind when the time comes.  They assure me it is more likely to be when than if, but I am carrying a fair bit of extra weight to start with and hoping that might help me fight it.

Wishing you all the best for a speedy recovery.

I'm just about to start out on this horrible journey so wish me luck!

Irene x

Hi Irene and Nicola,

Irene, you're right about the 70's food - Angel Delight and Fray Bentos are very much of that era. At least I haven't moved onto Party Sevens and Babyshams. Good luck on your journey - it will be well worth it in the end and I can honestly say that time does fly by once the treatment starts.

Nicola, I don't think you're old enough to remember the 70s - you really had to be there!

One thing I left of the list is porridge. I've been trying those Quacker Oats boxed sachets where you just measure the milk out from the empty sachet, tip onto the porridge and then microwave for 1 - 2 mins. They do some nice flavours like apple, rasin and cranberry, and golden syrup flavour. I add a few sultanas to mine. The porridge doesn't contain a huge number of calories but you can use full fat milk and even add cream. I have to let it cool down for a long time because I can't take anything too hot at the moment.

I had my second all clear from the consultant today - you will both be there soon. My blood is slowly improving although the nightsweats remain a mystery. He did say that they may go as and when my blood counts get back to normal - hmmmm, we'll see.

All the best.

Simon XX  

Thanks Simon that's all very encouraging.

I'll bear in mind the Quaker oats as well.  I've tried the golden syrup variety before and enjoyed it.  Yes, I thought the 70s reference might be lost on Nicola! In fact I'm now thinking they probably appeared in the late 60s! Butterscotch Angel Delight does bring back fond memories.  We used to make it with Carnation milk to make it even nicer.  Now this is really beginning to sound like my old bad habits of comfort eating, so just hope I am still able to taste it when I take that trip down memory lane.

I'm on a bit of a pre-Christmas high having finished work this afternoon and feeling happy/relieved that I've managed to keep working till now and haven't left too many loose ends.  It's just like I've downed tools for our normal 2 week Christmas break and that's all I'm focussing on at the moment.  Fingers are tightly crossed that 2 days treatment won't interfere too much with Christmas day but time will tell.

I'll probably share my feelings/experiences here as things progress.

Best wishes and keep well.

Irene x

Thanks Simon that's all very encouraging.

I'll bear in mind the Quaker oats as well.  I've tried the golden syrup variety before and enjoyed it.  Yes, I thought the 70s reference might be lost on Nicola! In fact I'm now thinking they probably appeared in the late 60s! Butterscotch Angel Delight does bring back fond memories.  We used to make it with Carnation milk to make it even nicer.  Now this is really beginning to sound like my old bad habits of comfort eating, so just hope I am still able to taste it when I take that trip down memory lane.

I'm on a bit of a pre-Christmas high having finished work this afternoon and feeling happy/relieved that I've managed to keep working till now and haven't left too many loose ends.  It's just like I've downed tools for our normal 2 week Christmas break and that's all I'm focussing on at the moment.  Fingers are tightly crossed that 2 days treatment won't interfere too much with Christmas day but time will tell.

I'll probably share my feelings/experiences here as things progress.

Best wishes and keep well.

Irene x

Hi Irene,

I think you should still be up to partying after two days. If the two days include chemo then just make sure they give you the anti-sickness meds - if you're on Cisplatin then you'll need them. They forgot mine at the beginning and I was hospitalised for 36 hours.

Nicola - If I've done my sums right your treatment is now complete - yippee! No more daily zaps. You're on the home straight, well done!

Seasons greetings to you both.

Simon.

Xx

Hi all,

Treatment is finally over!!!!! I feel like punching the air with joy - if I had the strength to do it! To think back four months ago when I first came on here when i found out I had cancer and now I look at how far I've come since then, it's amazing.

Thanks Simon for the food tips. When I read your post a few days ago I went straight into the kitchen and made myself a cheese omelette. It was very painful to swallow but I forced it down. Also dunked rich tea biscuits into a cup of tea and managed a couple. Although a few days on the pain has stepped up even more so I don't feel I could manage to swallow any food right now. Having said that I have now gone up to five stone 7, a 2lb increase, which is probably down to the NHS drinks. I'm having 5 a day so 2000 calories a day which is probably the most calories I've ever had!!

I moved onto morphine this week, and still taking cocodamol and Ibroprofen. My mouth is pretty painful a lot of the time now and also my throat. I've been very tired, although not sleeping well, just a couple of hours here and there. My head & neck nurse, dieticians, radiographers etc have all been brilliant and making sure I have everything I need, during my weekly review today I've been told that I shouldn't expect to feel much worse over the coming weeks as my mouth hasn't changed too much since last week.

Irene  -  Yes the 70's was before my time! Funnily enough I have a butterscotch angel delight in the cupboard! Although I can't see me eating that anytime soon. Good luck with starting your treatment on Monday. I hope I haven't scared you at all with my own experiences, it did get tough at times and the mental side was series a lot to deal with but it is manageable and as Simon has said, time flew by.

The mucus issue is driving me mad, I've used the nebuliser a couple of times although I'm not sure it helped at all. I will keep using it though. Please do let us know how you're getting on. You'll be fine for Christmas, but like Simon said, if chemo is Monday/Tuesday you may feel queasy.

I hope the night sweats improve over time Simon, I read up about this today and didn't come across any new info that I can share other than it can sometimes take a few months for the body to recover from such treatment. So hopefully this will stop for you but it may take a little longer. My sweating has now stopped, or definitely improved and chemo only finished last week, we're all different, but I hope that's a bit of comfort to you. It makes sense that your blood is slightly different at the moment so is causing this effect and if I remember rightly, you missed two chemo sessions as it made you ill - from what I have been told at the hospital, that's a well know side effect but does gradually get better. I hope it does. I think delaying your PEG was definitely the right option although probably frustrating for you but best to play safe. I think I'll still be drinking these NHS drinks for a long time after my PEG comes out, we want to get back to normality with all the strength we can muster up!

I feel as if I want to throw a party as I've met a massive milestone today but I'll save that for when I can eat again! I've felt quite emotional today and recovery now feels much closer and manageable. Thanks everyone for spurring me on through my treatment, it really helped.

Speak soon,

Nicola xx

Well done Nicola! You did it! Now make sure you chill out for a few weeks to recover and you may want to stock up on laxatives because the morphine made me very constipated! Sorry!

Now it's your turn Irene! Just so you know, I was diagnosed with tonsil cancer in February and had chemo/radiotherapy in April and May. I felt ok by the end of July and it all feels like a distant dream now! It's still tricky mentally because whenever I hear of or read about anyone else having cancer it brings it all back. Still, it does make you feel glad to be alive!

Simon - hope the eating is improving. Maybe you can manage some trifle on Christmas Day!

Sending you all positive Christmas vibes!

Debbie

X

Hi Nicola,

What a wonderfully uplifting message - I am so chuffed for you. What a long way you've come and what a nice time to finish treatment - now you can enjoy Christmas with your daughter. No matter how rough you feel I'm sure that your daughter's smile on Christmas day will make you feel better than the morphine ever will.

Debs is right about the laxatives I'm afraid - I always ensured that I took laxatives every time I took morphine. It was difficult to get the balance right and it was easy to go from one extreme to the other, if you know what I mean - I'll say no more.......

I shall indeed be attempting some Christmas trifle on the 25th. It will be a quiet affair with just my wife and mother-in-law. There will be plenty of gravy on the dinner.

Well done again Nicola - I feel so good for you.

Irene, you're next and we're all thinking of you. As Nicola said, the time really does fly by - you'll be at the end of the treatment in no time at all.

A very merry Christmas to you all, you have all been so supportive and it really does make a huge difference.

Simon (aka Fray Bentos). xxx

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