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,

Sorry to read that this week's been a struggle and the chemo is making you feel so poorly. But you are doing so well; as Debbie says, keep going!!!

The impact on your mental state is understandable too. You've always managed to sound so upbeat and positive, but this in itself can be tiring; putting on that brave face and smiling all the time.

Make sure you take time to support your mental health too . . . Whether its through talking to your supportive family and friends, contacting support groups (don't know if that's something you're doing?) or by writing to your virtual buddies on here to let them support you!

Debbie's words are also wise about how differently you'll feel after a few more months down the line; in time, you'll look back and see how far you've come. Though it's hard to think like that at the moment.

Stay strong and feel proud of yourself, Nicola!  We're all right behind you and alongside you!

Love and hugs to you and your daughter,

Jo xxx

Hi Nicola,

Sorry to hear that this is becoming a struggle for you. You seem to be pretty much exactly how I was at this stage. I remember the cough (mine was caused by the excess mucus) and the mental impact of moving to solely PEG feeding. The fact that I was using the PEG for all my food and liquid quickly became acceptable and not a problem - in fact I was grateful for it. From memory I think it was 3 or 4 weeks after the treatment finished before I could take food by mouth again. Then it was a question of experimentation - mashed potato/veg with heaps of gravy followed by ice cream or yogurt worked for me.

I missed the last two chemo sessions due to a very low white cell blood count and extreme nausea - I suffered with this more than most. I would recommend that you continue with the Cisplatin if at all possible but do not be distressed if you do have to forego one or two of them - it is not uncommon, apparently. I would let the experts decide - that's what happened with me, they told me that I was too ill to take the last two but that I shouldn't worry about it because this was quite normal. I think you should be guided by what the doctor advises - he or she will know what your blood counts are and what the impact is on your system.

You asked how I am doing now - well, I'm afraid that, despite my clear scan, I have some ongoing problems that are causing me some issues. I would stress that these problems are particular to me and you will not experience the same. I am currently having night sweats. I wake at about 2 or 3am sweating in what can only be described as a state of fever. I get up for 30 mins or so, shower, and then I am okay again. I feel fine throughout the morning until just after lunch and then I come over all nauseous - this then lasts for the rest of the day. I still only weigh 10.5 whereas I should really be 12 stone. I have been to the GP a few times and I have had several blood tests - these all show that my white and red cell counts are low whereas my vitamin B12 level is more than double what it should be. The GP has been pretty useless in this area. It is now three months since my treatment finished so my blood should, I feel, have returned to normal. The GP has said he will write to a hymnotologist for advice. I am quite worried about this situation. I have an appointment with the consultant for my first check-up on 19th Dec so I will raise this with him.  

Food tastes pretty much how one would expect although I still have to avoid anything spicy including tomatoe ketchup and black pepper. Yesterday I had mince pies and cream and today I've had Christmas pudding and cream.  I am going to try a Jack Daniels and Coke tonight!

I am due to have my PEG removed on 20th Dec. I still use it first thing in the morning because it is an easy and quick way to load up with 800 calories. I will be glad to see the back of it though. Having said that, it has been a life-saver.

Nicola, I repeat that the above problems are unique to me - you will not experience these. You've nearly broken the back of this now. You will get more and more comfortable with the PEG and you will return to normal eating in a matter of weeks. My taste buds have returned to near normal and they are still getting better all the time. I also thing that I am slowly producing more saliva.

Remember not to focus too far into the future - I found that this helped. Take up all offers of support and assistance and just think about the next few days. You will get through this and it will quickly become a distant memory.

We're all thinking of you.

Simon XX

Hi Nicola

Was just searching for information on 'prolonged pain post PEG insertion' and it sounds like we have much in common.  You have been through a real nightmare with your PEG surgery - I thought mine was bad but poor you.  I really hope you have the worst of this experience behind you. 

I have throat cancer too.  Lump in neck found on second day of my Algarve holiday on 23rd August; GP day I got home, Maxillofacial consultant a week later (luckily I had private health insurance through work or it would have been a longer wait).  Originally thought to be in the parotid salivary gland and 95% likely to be benign.  Lump removed on 19th October, results 10 days later revealed it was malignant.  Further scans (MRI, PET, CT) showed it was a secondary cancer spread from a primary at base of tongue/left tonsil.  What I still can't get my head round is that I have never had any symptoms or pain from my throat.  Tonsil removed 15th November.  Recovery from both these ops was a piece of cake compared to my PEG insertion last Wednesday!

Wheeled from Ward to endoscopy unit for my appointed time of 1.30.  Nurse there discovered that my signed consent form was not in my folder.  They rang Ward 32 and after a very long wait were told it was still there.  They asked Ward 32 to deliver it to Endoscopy ASAP.  Meantime I lost my first place on the list and had a very long wait.  I did ask if I couldn¿t just sign another consent form and was told no.  Folder with my form finally arrived from Ward 32 (in time to get me into theatre at 1450 hours) but the form was filled in for the wrong procedure (RIG not PEG).  Dr Chaw pointed out the possible risks/side effects before I signed the form but I didn¿t see the other side or I might have picked this up myself.  So I ended up signing another form in theatre ¿ why couldn¿t this have been done at the start?  The procedure was the nastiest experience I¿ve ever had.  I¿ve had endoscopy before for acid reflux and didn¿t find it half as bad (not sedated, just back of throat numbed to stop gagging). With the PEG insertion I felt I was gagging all the time, had difficulty breathing and fully aware of everything that was happing including all the pain and tugging inserting the tube.  Would not want to go through that again without a full anaesthetic - so much for being told I probably wouldn't remember anything.

Four days on and I still have terrible pain in my tummy around the tube site.  Called out the district nurse yesterday who told me it looked fine (I know it's not infected and it is flushing fine with no pain) but I really thought the pain would be settling down by now.  I'm fine as long as I'm lying down.  As soon as I move about it is really uncomfortable.  I decided to drive myself into town (4 miles away) to finish my Christmas shopping today.  I was only there an hour and was almost passing out by the time I got home.  Bending, sitting up/down (esp getting in/out of car), rearranging pillows in bed is just agony.  I think I will call the hospital if it hasn't improved by Tuesday.  Most info I've found online seems to indicate I shouldn't be having this much pain at this stage.

My mask is made too but still have a similutor appointment to check things before my treatment starts on December 23rd (first of daily radio) and first day of chemo on Christmas Eve.  My hospital doesn't treat on Christmas or Boxing Day so I think I'm getting double doses either side and keeping my fingers crossed I might still enjoy Christmas Day.  I do hope you can too and I guess we can follow each other's progress and compare notes on here.

I haven't read your previous posts but will do so now.  Looks like your timescales might be similar to mine as you've been on here since mid-August.  I was following Access, Jacmay and Debs posts re branchial cyst (they thought mine might be that at one stage) but haven't chipped in until now.

I thought I was being really strong and positive about everything after two ops (lump removal then tonsil out) until this eposide.  I started wondering if I was being a real wimp and if I struggled to cope with this how the hell am I going to cope with the actual treatment?

I've just re-read your last post and see that you have by now started your treatment and hope it is going as well as it can be.  Are you having daily radio and weekly chemo or something different?

Very best wishes

Irene (isjheatherlea11)

Hi Nicola,

The treatment really is taking it's toll isn't it but please take strength from the good wishes everyone here is sending you.  You have explained so well how rotten the treatment is making you feel but you are finding the strength to continue on and for that I and others are very proud of you.  If it helps just think of how good that first glass of wine is going to taste when this is all over and you have got your taste buds back.

You have broken the back of your treatment schedule and everything you do from here takes you one step closer to the end and if you look hard enough maybe you can see that light at the end of the tunnel getting bigger.

All the very best to you Nicola and please accept a hug to help you through.  

Garf. x

Oh Nicola, I've read through all your posts now and can't believe what a dreadful journey you have had.  You are one very brave girl, bouncing back after every knock.  If I can tackle my treatment with half of your courage, then I think I'll be doing pretty well.  It sounds like you have never really made friends with your PEG.  I am absolutely hating mine but it's only been there 4 days.  I know everyone's different but just wondering how long it took for yours to stop causing you pain?

Sending very best wishes and every encouragement to help you through the rest of your treatment - hang on in there!

Irene x

Hi Irene,

Thanks for reading my thread and sharing your story. I'm glad my posts have been able to help/give an in sight to somebody else.  So sorry to hear your news, but like everyone else on here, we only get to meet each other due to being part of this same "club".

As for the PEG, they do not warn us how painful it can be. I was told it was a quick 20 minute procedure, I'd be sedated so won't know anything about it and that it would be sore for a few days. Sore?! I didn't call that sore! I was in agony! And I'm sorry to say it lasted for a good 8 days before it improved and then was still fairly painful for the first three weeks. Now it's fine, but I still get odd days where it's tender and sore. I was in tears with the pain sometimes and I'm no wimp! I remember crying to my mum telling her I wish I'd never had it however I am very grateful for it now as I am no longer able to eat via my mouth. It still gets a little gooey and crusty around the peg site and I have to clean it each day and spin it, but I will be glad to see the back of it and am already counting down the days for when it can come out! I remember getting a cramp type pain every now and then in the first few weeks, as if my muscle would suddenly contract for a few seconds, them release itself. Thankfully that only happens occasionally now but I couldn't lie down, I had to sleep sat up for a few weeks and just generally moving about was very painful. Well done you for attempting Christmas shipping, I couldn't of done that! You're probably in a lot of pain but it does get better. Do look after it though, keep it clean and flush it daily, the last thing we need is for it to be removed and another put in! I honestly think I'd rather starve than go through that procedure again. I think more aftercare is needed following a PEG and certainly more warming on how to cope with the pain, I was on Tramadol for a week.

Good luck with your treatment, mine sounds the same package as yours, six weeks of daily radiotherapy and weekly chemo (Cisplatin). I'm in week 5 now and I was coping really well until last week. I was getting myself to and from appointments and caring for my young daughter by myself and eating and drinking, but last week side effects really kicked in, this was from the chemo mainly, so I could no longer eat, feel weak and tired and nauseous. I'm relying on friends to drive me to the hospital each day now and I need a lot of help with my little girl as I don't have the energy. I find its taken me three or four days to get over the chemo each week, I have it on Wednesdays and by Sunday/Monday I'm feeling a bit better again. Radiotherapy is causing some unpleasantness in my mouth but nothing I can't handle yet and I just keep telling myself it's not forever and my mouth will heal in time. The hardest part for me has been the mental side of not being able to eat for such a long time. But when I can I will be making up for it! My relationship with food is going to change dramatically.

You sound a very positive person and I hope you have support to help you along the way. It has been tough at times and as I am a single mum to a very young daughter, I have found it hard sometimes to keep going and I'm doing it all alone. I think I would have found it easier if I had a partner to face it with so gather up all support you can. I have a rota for these next two weeks of different friends who are going to take me to the hospital or look after my little girl as I have just had to accept that I can't do it on my own anymore. Might be something you could think about organising for when times get tough. You'll be very tired and no food causes lack of energy so take all offers of help.

Feel free to ask questions or to just offload on here. This treatment really is a difficult and emotional time, we all need support to help us through it.

Speak soon,

Nicola x

Thanks everyone for your usual good words of support. I had a bad few days and was feeling pretty low but I started to feel a bit better yesterday so I'm going to make the most of today until tomorrow's chemo. Then I know I'll be feeling pretty rough again until next weekend but as tomorrow is my last chemo I feel more able to deal with it. My oncologist has changed my chemo drug slightly for this week, it's still Cisplatin but it's the sister drug which should lessen the nausea. He was worried chemo would jeopardise me being well enough to finish the radiotherapy so he said it was either change it or not have it at all this week. As much as I hate having chemo, I'd much prefer to have it than not at all so we're going with the sister drug. I just hope it doesn't cause any nasty other side effects!

Simon, I'm sorry to hear you've had a few issues. I hope these can be sorted for you as I am sure it's all a reminder of the cancer and you probably just want your life back to how it used to be. I guess we have been through such a lot, cancer is a big thing to deal with, so it's all going to take time to settle down. Night sweats and nausea isn't something you should have to live with so I really hope this improves for you. I'm pleased to hear you have been eating well and that your PEG is being removed soon. 20th Dec is my last day if radiotherapy so we can both look forward to that day! Please let me know how the procedure goes, as I'm already dreading having my PEG out!

Speak soon,

Nicola xx

Hi Nicola,

I'm really pleased to hear that you are feeling a bit more upbeat. It's also good news that this will be your last chemo session - another milestone gone. The end of your radiotherapy is in sight - I'm so pleased that you are nearly there. It is a struggle but it is worth it. I will let you know how the PEG removal goes. I've been told that it is much more straightforward that having it put in (which will be music to your ears considering the drama that you've experienced). I was given the option of having it taken out whilst awake or asleep - my pain threshold is normally pretty good but when I was asked the question I thought of your experiences and so I opted for the asleep option! In a perverse way I've got pleasant memories of when I've awoken after operations - I always feel nice and mellow.

I had a bad night again so I phoned the surgery at 8am - got an appointment for 8.30! Luckily I saw one of the better GPs and he's emailed for an urgent blood specialist referral - apparently I should be seen within 2 weeks. I just want to get to the bottom of my low blood count / nightsweat / fatigue issue.

I guess that you are like me in that you've been to more hospital and doctor appointments in the last few months than you have in the rest of your life combined. Just think, soon all this will be behind us and we can get on with the rest of our lives. I won't miss all the sitting around in waiting rooms.

Keep your chin up, Nicola - It's all worth it and you're nearly there

Best wishes

Simon xx

Hi Nicola and Simon

Just thought I'd let you know that my peg removal was fine in September. I was put out and, after the op, they told me to take paracetomol if I needed it. I only took one as there was no pain.

There was a hole but this closed up really quickly and I've now just got a scar (another one!). It's weird because sometimes it feels like the peg is still there and I have to feel my stomach to check!

So don't worry about the removal - it's fine!

Debbie

Hi Nicola

Good to hear back from you.  Well, I thought I'd turned a corner with my PEG.  I suddenly realised on Monday night that I was sitting quite comfortably on the sofa writing Christmas cards and things were much improved at work on Tuesday.  Today however it's been giving me jip again all day at work and I came home really tired then tried to have a nap to try and perk myself up before my office Christmas Dinner this evening.  Anyway I ended up calling off because I was so uncomfortable sitting up straight - a bit disapppointing as I was looking forward to enjoying one of my last special meals before I start losing appetite and or taste, but I think it was probably the right decision.  I would hate to have got there and been a misery-guts all night.  I know exactly what you mean by looking after it well so they don't have to repeat the procedure - that's just what was going through my mind, I couldn't stand that again!

It sounds like you have done really well to get so far into your treatment under your own steam, still looking after your little girl and eating and drinking.  I am certainly hoping to drive myself to and fro for as long as possible.  I have been warned that the last couple of weeks are the worst though.

Yes, my treatment is to be exactly the same as yours, with Cisplatin too.  It is of some small comfort that there won't be total hair loss.  I do have quite a thick head of hair so am hoping that any thinning won't be too noticeable, fingers crossed.  I am very lucky to have the support of my family, two sisters, one of whom has also been through cancer herself.  They will be kept pretty busy supporting our parents with one less pair of hands/driver for a while, but I know they will help me as much as they can too.  My husband had a stroke a few years ago and has not worked since.  We've just heard yesterday that his Incapacity Benefit will stop in January and he will be put on Jobseekers allowance which is a bit of a blow to say the least, just as this is happening with me. He's had an assessment and they feel he should be able to manage a 'desk job' of some sort, but I think he will really struggle.  His main problem is fatigue which is part-and-parcel of having a stroke, he just has no energy by half-way through the day. It makes me mad that he has paid tax for nearly 40 years, served in the army and now we are about to have a drop in income when things were already tight.  I know there's lots of support and financial advice available through MacMillan etc, so I may well seek that out. 

Anyway, enough of me moaning, I know I am fortunate compared to many others and I have several friends who have offered to run me to and from hospital if/when I can't drive myself, so I will take your advice and gratefully accept all offers.  It's a piece of advice that a few people have given me recently, i.e. if folk offer to help you they want to do so and it will make them feel better that they are able to do something positive for you.  The other tip I've been given a few times is 'eat as much as you possibly can before your treatment starts'.  I am no lightweight and have never in my life been given free rein to pig out until now! I remember we all worried when my sister was ill that she had just lost a huge amount of weight before she fell ill and lost lots more during her treatment - but as I think I said before, that was 9 years ago and she is great now - and we will be too!  However I don't think I can get too fat with this tube feeling like it's strangling me already plus my mask's already made and is a very snug fit (which it's meant to be)!

It must be awful to only just start feeling better from the chemo a couple of days before you have to face it again but its comforting to hear that you've coped well with the effects of the radiotherapy so far.   Just you keep as focussed as you are, it's not for too much longer and you will get rid of that damned PEG as well!

Keep in touch and yes, thank you, I will probably be asking for advice once my treatment gets underway.

Irene x

Hi Nicola

Good to hear back from you.  Well, I thought I'd turned a corner with my PEG.  I suddenly realised on Monday night that I was sitting quite comfortably on the sofa writing Christmas cards and things were much improved at work on Tuesday.  Today however it's been giving me jip again all day at work and I came home really tired then tried to have a nap to try and perk myself up before my office Christmas Dinner this evening.  Anyway I ended up calling off because I was so uncomfortable sitting up straight - a bit disapppointing as I was looking forward to enjoying one of my last special meals before I start losing appetite and or taste, but I think it was probably the right decision.  I would hate to have got there and been a misery-guts all night.  I know exactly what you mean by looking after it well so they don't have to repeat the procedure - that's just what was going through my mind, I couldn't stand that again!

It sounds like you have done really well to get so far into your treatment under your own steam, still looking after your little girl and eating and drinking.  I am certainly hoping to drive myself to and fro for as long as possible.  I have been warned that the last couple of weeks are the worst though.

Yes, my treatment is to be exactly the same as yours, with Cisplatin too.  It is of some small comfort that there won't be total hair loss.  I do have quite a thick head of hair so am hoping that any thinning won't be too noticeable, fingers crossed.  I am very lucky to have the support of my family, two sisters, one of whom has also been through cancer herself.  They will be kept pretty busy supporting our parents with one less pair of hands/driver for a while, but I know they will help me as much as they can too.  My husband had a stroke a few years ago and has not worked since.  We've just heard yesterday that his Incapacity Benefit will stop in January and he will be put on Jobseekers allowance which is a bit of a blow to say the least, just as this is happening with me. He's had an assessment and they feel he should be able to manage a 'desk job' of some sort, but I think he will really struggle.  His main problem is fatigue which is part-and-parcel of having a stroke, he just has no energy by half-way through the day. It makes me mad that he has paid tax for nearly 40 years, served in the army and now we are about to have a drop in income when things were already tight.  I know there's lots of support and financial advice available through MacMillan etc, so I may well seek that out. 

Anyway, enough of me moaning, I know I am fortunate compared to many others and I have several friends who have offered to run me to and from hospital if/when I can't drive myself, so I will take your advice and gratefully accept all offers.  It's a piece of advice that a few people have given me recently, i.e. if folk offer to help you they want to do so and it will make them feel better that they are able to do something positive for you.  The other tip I've been given a few times is 'eat as much as you possibly can before your treatment starts'.  I am no lightweight and have never in my life been given free rein to pig out until now! I remember we all worried when my sister was ill that she had just lost a huge amount of weight before she fell ill and lost lots more during her treatment - but as I think I said before, that was 9 years ago and she is great now - and we will be too!  However I don't think I can get too fat with this tube feeling like it's strangling me already plus my mask's already made and is a very snug fit (which it's meant to be)!

It must be awful to only just start feeling better from the chemo a couple of days before you have to face it again but its comforting to hear that you've coped well with the effects of the radiotherapy so far.   Just you keep as focussed as you are, it's not for too much longer and you will get rid of that damned PEG as well!

Keep in touch and yes, thank you, I will probably be asking for advice once my treatment gets underway.

Irene x

Hi Irene,

Sorry to hear of your PEG problems, I really can sympathise. Is it easing up at all yet? I understand how frustrating it is, I've not been able to make any festive parties this year either. I don't have the energy and can't eat or drink anyway! It's the part of having cancer that others don't realise, aside from the treatments, it's so disruptive to our lives.

Have you contacted Macmillan at all regarding your personal circumstances? I have found them a wealth of help and information with finances and home help etc. it might be worth a try, call their main number and they will put you through to the correct adviser to help with whichever area you need support. It's worth a go. The last thing you need is financial worries right now. All of your concentration and efforts will need to focus on getting yourself through your treatments so I would encourage you to contact them sooner rather than later. It is a joke how us cancer sufferers have to just plod along when like you said, some of us have worked hard all of our life and get little support at a time like this.

I feel I've hit a bit of a brick wall this weekend. I think I find the weekends hard as I'm alone at home with everything on my mind coping alone when I really would just prefer to be getting on with Radiotherapy! I have five more sessions to go so I hope this time next week I will feel a little brighter. My energy levels have dipped now to an all time low and I'm suffering with excess mucus which I'm constantly having to spit out, it's horrible. Thankfully chemo is over, I really don't think I could have handled another one.

Make the most of your last week before treatment. Eat well and do some nice things as in a few weeks you may not have the energy or will power! Feel free to ask any questions.

Nicola x

Hi Nicola,

I was so glad to see you had got throught the chemo, I realise the lst couple were a struggle for you.

Well done you, you should be proud of  yourself. just the last 5 sessions of radio to go through and then hopefully a rest at Christmas time.

How is your little girl doing Nicola? I bet she is looking forward to Christmas. Kids can get so excited, mind you so can big kids.

I know you had hoped to be eating by Christmas but you say you can't eat or drink yet, do you know when you might be able to? Have they given you a timescale.

Anyway  just wanting to send hugs and love to you to let you know am thinking of you and wishing you well

Annabel. 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

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