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 Debbie - you don't sound shallow at all - just honest!  I was tipping 13st at the start of this so I really do need to shed some weight, just hadn't anticipated it this way.  I will be very happy to come out the other side a bit lighter than I've been for years.  Also my nephew gets married on 14th April so am looking forward to shopping for hopefully a dress size smaller!  My treatment ends on 31st January.  I saw my support nurse yesterday when I was in for radiotherapy.  She has arranged for the dietician to see me again tomorrow (chemo day).  I managed a bit better the second half of yesterday, now that I'm taking more of the Levowatsisname anti-sickness pill.  She did however say they might consider pump feeding for me.  My immediate reaction was what's the point of pumping it in if it still turns my stomach when it hits home, however this will be a different type of nutrition altogether, which is very slowly fed through constantly (overnight?).  I'm now wonderig if it might be like the driver I had for pain/sickness when I was admitted to the ward last week.  I really appreciate your support and advice Debbie.  It's so kind of you to keep contributing so long after your treatment and recovery to help others through the process.  Love Irene x

Hi Simon,

Really pleased to hear you are progressing well. You seem to be ploughing on with trying new foods, I bet that feels so good! I'm really looking forward to eating again. I don't feel ready just yet, I think I will know when the time is right, but my mouth is beginning to feel more 'normal' already.

So was your PEG pulled out from your tummy or did they choose the other option of cutting it and then letting the inside stopper pass naturally? I'm very worried about having my PEG removed after the problems I've had with it and I must say it doesn't sound very appealing having it tugged out! I too was sedated when they tried to put the PEG in the first time and it's a strange feeling! Did you have the camera put down your throat too? Did they stitch the hole? Is it sore now?

It's interesting to know that salt water can help with saliva - thank you for that tip. I've been advised to rinse with warm salty water to help keep my mouth clean and sooth any sores but I will also keep an eye on any benefits to extra saliva. I've also noticed my chin becomes slightly swollen sometimes so it's interesting to know this could be another side effect of the Radiotherapy. I had a very swollen chin following my surgery last year (it's hard to believe my operation was already four months ago!) and that was due to my lymph nodes being removed and it took around two months for my chin to reduce and look normal again. I also have lymphedema in my tongue. Unfortunately, when my teeth were removed, the graft on my tongue swelled out towards the side of my mouth and has not yet gone down in size. Radiotherapy hasn't helped this either so I have to wait and see if this swelling reduces on its own. If not then it could mean another tongue operation  

On the whole I'm feeling pretty good. I'm still getting some pain in my mouth, which has been slightly worse these last few days. My nurse suggested substituting cocodamol with paracetamol a couple of times a day but I was finding I was in pain before my next dose was due, so I've given up on paracetamol for now and have gone back to cocodamol three times a day. I'm wondering if the increased pain could also be due to me getting less rest now that I'm feeling so well again, so perhaps that's a sign that I need to slow down a bit and rest more. I'm also beginning to feel very hungry at certain times of the day, probably because I'm burning off the milkshakes rather than resting all of the time. The good news is I've finished one course of anti biotics for my chest infection so that's four doses of medication I no longer need to remember each day! Just a few days left of the other anti biotics for oral thrush and I can feel the improvement already. My sleep is still broken but I'm getting there.

I'm very pleased that both of us seem to be making such good progress, I'm so happy that the worst is now behind us.

Speak soon,

Nicola

Hi Irene,

You are doing so well. You sound as though you are taking on every bit of advice we give you and are asking for all of the right help at the hospital. You're halfway through week four now and I promise you it will fly by from here. Just incase no one else has mentioned this already, there is another mouth wash called Gel Clair. You can order some samples online for free and my Hygienist advised half a sachet at a time, diluted with water works well to sooth any mouth sores. Or gargling can help relieve throat pain. I did not need to use mine in the end as I found Diflam to be very good, but something to bear in mind.

I'm feeling so well already after only less than four weeks of Radiotherapy ending, so you really don't have far to go now. Keep up the good work!

Nicola xx

Hi Nicola,

Great to read that you're feeling pretty good at the moment. You sound like me in that you're 'doing more' and resting less! I seem to have more energy these days, but then forget I should be building in some rest time into my day!  The feelings of fatigue seem to bite me on the bottom during early evening, when I drop off on the sofa around 7o'clock. I have to catch up with the soaps the next day!

Glad you're feeling hungry and you've finished one lot of antibiotics!

You and Simon seem to be making great progress and it's brilliant that you can both offer support to Irene and others on the site!

Take care and keep up the good recovery!

Hugs, Jo xx

Hi Nicola,

I'm really glad to hear that things are still generally moving in the right direction for you.

In relation the the PEG removal - they adopted the 'pull it out' option with me (or at least I think they did!).  The sedation was a strange affair - the nurse said that I would remember what had happened immediately afterwards but that a few hours later I would have forgotten most of it - she was right. It is a bit like having a vivid dream that you can remember as soon as you wake up but then you forget a hour or two later. I remember the nurse putting the medication into the back of my hand then a few minutes later the doctor (at least I hope he was a doctor and not a passing hospital porter) came in and lifted my gown and started fumbling about with the tube. Next thing I know and hey presto he's whipped it out. There were no stitches - the nurse put a dressing on it and told me to change the dressing each day for a couple of days. There was a slight amount of bleeding/seepage but that was gone after about 48 hours. All I have now is a small round mark that I guess will fade in time. I know you've had some bad experiences with your PEG but you really don't need to worry about the removal. It is wonderful not having that tube flopping about everywhere. I now have a months supply of the milkshakes sitting in my garage and they say that they won't collect them - they told me just to dump it but it seems such a waste.

I'm keeping my fingers crossed that your tongue swelling goes down in due course - I feel that it most likely will as it's still only a short while since your treatment finished. I still have swelling and tenderness around my neck and my treatment finished over 4 months ago. The oncologist told me last week that I should not anticipate getting fully back to a 'new normality' for about 12 months. Things improve quickly at first but then they keep on improving, albeit slowly, in the months after that. I'm really hoping that my saliva glands begin to creep back into action because it is tedious having to take a sip of water every two or three hours throughout the night.

My eating is slowing getting better - I'm now having those microwave meals such as cottage pie, shepherds pie and the like. Waitrose or Tesco do them and they go down quite easily. Pasta tubes with cheese sauce also works for me.

Good luck, Nicola and keep up with the good progress you are making.

Simon xx

Hi Nicola

Thanks for yours and hope your recovery is continuing to gather pace.  As it happens I was prescribed Gel Clair last week, and I find it helpful.  The only downside is that like almost every medication it is aniseed flavoured.  I can hardly taste a thing, but I can taste aniseed and it's a flavour I've always hated - sod's law!

Well I'm now pump feeding Jevity through an Abbot Freego machine and so far so good.  What I hadn't realised though is that the calorific content of these big bottles is much less than expected so my dietitian wants me to supplement wth a couple of bottles of Ensure as well - not keen on this as it was making me feel sick from the start, but will do as I'm told.

Do you have any tips/recommendations for freshening up the mouth?  Rather than the not eating, what is really getting me down is the permanent evil taste in my mouth.  I would dearly love to drink fruit juices but anything with even the merest hint of fruit just burns my throat.  I jump from chewing gum to spearmint polo mints to tictacs to glucose sweets, but after a few seconds they too start to nip.  I've been eating Mini Milk ice lollies but finding them pretty flavourless too.  All suggestions gratefully received!

Thanks Irene x

Hi Irene,

I used to gargle with bicarbonate of soda (go easy though as the sight of foaming at the mouth can be quite alarming). I also used sparking water instead of still - after a while though that started to burn my tongue. My mouth was like Gandhi's flip flop.

My wife got me a selection of sugar free sweets/gums from the Holland and Barratt health shop. One was called Slim Fruits (smooth pastiles that come in a little box) and these were nice and mild - peach melba flavour worked for me. I would only take sugar free due to the risk to teeth from a lack of saliva.  

Good luck and I hope that next weeks treatment goes okay.

Simon XX

Hi Simon and everyone

Thanks for that tip - I'll try and get to an H&B sometime soon to look for these.  I've also been trying sparkling water instead of still which I found was quite refreshing.

However things have gone pear-shaped with me again since Sunday.  Now the Jevity pump feed is being spewed up minutes after I take a pause from feeding - along with all the anti-emetics.   Started off on Sunday with the excess glut in throat making me choke/retch then the Jevity started coming back and OMG now I have tasted that stuff, I never wanted to put another drop of it inside me for fear of the taste coming up!  Long session with my special nurse yesterday after Radiotherapy (she witnessed severe puking on glut/empty tum) and all to be reviewed today when I'm due for chemo.  She's going to get me a nebuliser.  All a vicious circle - the only advice they can give to help with the glut is to keep hydrated to keep it thinner, but now with all the sickness nothing, not even a syringeful of water is staying down.  Rang hospital last night who agreed not to take any more feed or painkillers till I've been seen today.  I doubt whether I'm fit for chemo and would be quite relieved if they admit me again to sort this out.  With no painkillers my throat is like a furnace so hoping they give me a nice injection to float away on!

My daughter has just arrived to take me to Ninewells, more anon.

Irene x

Hi Irene,

I'm really sorry to hear that you are having a bad time.

Based on my own experiences it really sounds to me as if you are at the point where you need to be admitted to hospital to allow them to sort your sickness out. That is what worked for me and I found that the doctors I saw on a general ward were better equipped to deal with the nausea. It can be a case of experimenting with various different drugs in order to find the one that works best. Make sure that you keep track of what you take and when. Once the drug that works is found you will need to understand which one it was - I remember that when my nausea first cleared up I had taken so many different medications that we were unsure which one had worked!

Good luck, Irene - we're all thinking of you.

Simon xx

Hi Simon

Just a quick update to say I've been in hospital this week and am feeling much better again.  I was admitted on Tuesday for 3 nights, same routine as before they put me on a syringe driver with anti-emetic, painkiller and a hydration drip.  They've also changed my PEG antisickness med to same drug as was in the driver (Metaclopramide I think) with Levomepromazine as backup.  Feed has also been changed to a different type with reduced dosage over longer hours to be built up gradually.  So far all is working very well so fingers crossed.  I'm having a very quiet weekend before my last week of treatment starts on Monday - now that's a nice thing to be saying isn't it?  You did tell me it would pass quite quickly and it has.  I didn't get my chemo session on Tuesday because I wasn't well enough but there are no plans to replace it, I will just have had 5 out of 6 cycles which I gather is common and acceptable for this type of treatment.

I now have a very thorough spreadsheet made up to record exactly what I'm taking and when, so thanks for that advice.

Hope you and all my other chatroom pals are doing fine and having a good weekend.

Love Irene x

Hi Simon

Just a quick update to say I've been in hospital this week and am feeling much better again.  I was admitted on Tuesday for 3 nights, same routine as before they put me on a syringe driver with anti-emetic, painkiller and a hydration drip.  They've also changed my PEG antisickness med to same drug as was in the driver (Metaclopramide I think) with Levomepromazine as backup.  Feed has also been changed to a different type with reduced dosage over longer hours to be built up gradually.  So far all is working very well so fingers crossed.  I'm having a very quiet weekend before my last week of treatment starts on Monday - now that's a nice thing to be saying isn't it?  You did tell me it would pass quite quickly and it has.  I didn't get my chemo session on Tuesday because I wasn't well enough but there are no plans to replace it, I will just have had 5 out of 6 cycles which I gather is common and acceptable for this type of treatment.

I now have a very thorough spreadsheet made up to record exactly what I'm taking and when, so thanks for that advice.

Hope you and all my other chatroom pals are doing fine and having a good weekend.

Love Irene x

Hiya Irene,

That's blooming brilliant. Sickness sorted and only one week to go.

You're right about missing chemo sessions being common - I missed two and was a bit concerned until they told me that people rarely get to do all six.

I'm really chuffed for you.

Have yourself a good weekend.

Simon XX 

Hi

I'm so pleased you are all progressing well!