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 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 Jo,

Thank you for your last couple of threads, you're still sounding so up beat.

Have you had your PICC line yet? How was it? Does this mean you have been able to have your chemo at home? How are you feeling afterwards? I finished chemo yesterday, so my PICC can come out now but I agreed to keep it in for a couple of weeks just incase I was to feel poorly and require anti biotics. I don't want to jinx anything and end up back in hospital! I'm not even getting my nails done until I'm absolutely sure there's no chance of getting ill and being admitted to hospital as I know they'll make me remove them!

I had a slightly weaker chemo drug this week. It was either that or no chemo at all as I felt very unwell after the fourth dose. Iim feeling nausea right now, hence being awake at this time so I don't think I will escape feeling yuck completely but I haven't taken today's anti sickness yet so hopefully that will help. I'm going to go straight in for the stronger stuff this week rather than are the usual anti sickness meds and see if it works, as it didn't appear to uesterday. Radiotherapy finishes next Friday so I have seven sessions to go, I feel I can see light at the end of the tunnel now, even although I'm told side effects peak a couple of weeks after treatment ends. I feel I'll find it easier to deal with the pain in my mouth if I know I don't have to trek to the hospital everyday. I'm going to ask for something stronger tomorrow, as paracetamol is good but I don't it think that alone is going to do the trick from now onwards. I'm getting used to the PEG now and I feel I have accepted not eating so that also helps.

I hope all is going as well as can be expected for you. These are such difficult times and I find so much help coming on here and speaking with people who truly understand. I hope I'm able to offer similar to everybody else that needs it. This is not the best time of year either, to be experience such tough times but hopefully we can all come back on here next Christmas with happier stories to tell.

Speak soon,

Nicola xxx

Hi Jo,

Thank you for your last couple of threads, you're still sounding so up beat.

Have you had your PICC line yet? How was it? Does this mean you have been able to have your chemo at home? How are you feeling afterwards? I finished chemo yesterday, so my PICC can come out now but I agreed to keep it in for a couple of weeks just incase I was to feel poorly and require anti biotics. I don't want to jinx anything and end up back in hospital! I'm not even getting my nails done until I'm absolutely sure there's no chance of getting ill and being admitted to hospital as I know they'll make me remove them!

I had a slightly weaker chemo drug this week. It was either that or no chemo at all as I felt very unwell after the fourth dose. Iim feeling nausea right now, hence being awake at this time so I don't think I will escape feeling yuck completely but I haven't taken today's anti sickness yet so hopefully that will help. I'm going to go straight in for the stronger stuff this week rather than are the usual anti sickness meds and see if it works, as it didn't appear to uesterday. Radiotherapy finishes next Friday so I have seven sessions to go, I feel I can see light at the end of the tunnel now, even although I'm told side effects peak a couple of weeks after treatment ends. I feel I'll find it easier to deal with the pain in my mouth if I know I don't have to trek to the hospital everyday. I'm going to ask for something stronger tomorrow, as paracetamol is good but I don't it think that alone is going to do the trick from now onwards. I'm getting used to the PEG now and I feel I have accepted not eating so that also helps.

I hope all is going as well as can be expected for you. These are such difficult times and I find so much help coming on here and speaking with people who truly understand. I hope I'm able to offer similar to everybody else that needs it. This is not the best time of year either, to be experience such tough times but hopefully we can all come back on here next Christmas with happier stories to tell.

Speak soon,

Nicola xxx

Hi Nicola,

Great to read your update! It must be a relief to have finished your chemo and you are so close to completing your radiotherapy sessions!

Thank you for your info re the PICC line. Based on your post, I felt more relaxed about having it done and you were right! It was absolutely fine! It was painless and relatively quick . . . The X-ray showed it needed a slight adjustment, but other than that, I had no problems! I'm expecting to have two more chemo sessions then have it removed, but  the doctor wants me to have another MRI scan to look at the cancer spots on my liver and it may be that I have an additional session after the scan . . . Everything is a bit up in the air and at this time of year, appointments are a bit more unpredictable! Should know more next week! My partner has learned how to change my dressing and flush the line and next week, he'll be able to disconnect the chemo bottle at home so that's one less trip to the hospital.

I'm beginning to have more chemo side effects now! Tiredness mainly, but my mouth has become a little ulcerated! Not on a par with yours though, bless you! The steroids have affected me too! Some days I feel like the Duracell Bunny! Buzzing and unable to switch off! I'm learning to catch up with sleep when I feel the need! My cats are fascinated that I'm up and down throughout the night! They loiter around hoping for an extra breakfast!

Glad you're getting used to the PEG and I look forward to reading your post when you describe your 'first meal'        that won't be long!!!

Take care, chick, hope you get some stronger pain relief tomorrow and good luck with the rest of your radiotherapy . . . You're right, the light is getting brighter. . .  Must be the end of the tunnel! Nearly there!

Hugs, Jo xxx