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.

Oh Irene

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

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

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

Annabel. xx

Hiya Nicola,

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

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

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

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

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

Well done for getting this far, Nicola.

Speak soon.

Simon xx 

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

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

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

Hi Simon,

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

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

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

Speak soon,

Nicola xx

Hi Niccola,

So glad to hear you sounding so upbeat and chipper.

Happy New Year to you and wishing you all the best

Hugs

Annabel. xx

Hi Nicola,

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

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

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

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

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

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

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

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

Simon xx

Dear Simon and Friends

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

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

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

Lots of love and thanks to you all.

Irene x

Thanks so much Nicola, that's really encouraging.  I'm so pleased that the worst is behind you now.  Yes I found the book a tremendous read, very uplifting and have passed it on to my chemo buddy Donna, who like you had to have part of her tongue reconstructed.  My goodness what Lia Mills went through with that dreadful leg problem on top of all the other horrors it makes my little hiccup pale into insignificance.  However having said that I was very much in the gloom in the wee small hours last Sunday night and feel totally different today.  I will be having a quiet weekend though!  Lots of love, Irene x

Hi Nicola, Simon and Irene

Well done to all of you!

Simon - your comment about forgetting to put the cap on the tube made me laugh. I'd forgotten about that! How soon it all becomes a distant memory!

Nicola - you are doing amazingly well! Once you start to improve it really happens quickly so I'm sure you'll continue to see massive improvements. I had my first scan after 10 weeks. Is that when you're to have yours?

Irene - I kept putting huge pressure on myself to try and eat but I wouldn't worry about it. I didn't eat anything for weeks but once I started eating, there was no stopping me. A bit like simon who's about to tuck into a Chinese already!

Keep up the good work all of you!

Debbie

Thanks Debbie, that's really encouraging.  I think I was trying to force myself to eat for too long.  I'm still trying a little porridge in the mornings but a couple of spoonfuls is about as much as I manage.  The other end has now starting moving so hopefully I'll get on better with the tube today.  I too have have been having fun and games with the caps (one has broken off, the day after I've seen my PEG nurse of course) and getting stuff everywhere!  Looking forward to a couple of quiet, short visits today.  Do you mind me asking how much weight you lost over the whole process and am I correct in assuming that it drops off in a whoosh once treatment ends and they no longer have to keep you the right weight to maintain the mask's fit?  Love Irene x

Thanks Debbie, that's really encouraging.  I think I was trying to force myself to eat for too long.  I'm still trying a little porridge in the mornings but a couple of spoonfuls is about as much as I manage.  The other end has now starting moving so hopefully I'll get on better with the tube today.  I too have have been having fun and games with the caps (one has broken off, the day after I've seen my PEG nurse of course) and getting stuff everywhere!  Looking forward to a couple of quiet, short visits today.  Do you mind me asking how much weight you lost over the whole process and am I correct in assuming that it drops off in a whoosh once treatment ends and they no longer have to keep you the right weight to maintain the mask's fit?  Love Irene x

Hi Irene,

Sorry to hear that you're going through a tough time at the moment. I remember the wide varieties of anti-sickness meds. One of the doctors asked me which one works best - I had to laugh and told him I wouldn't know because I just take them all (about 4 or 5 different varieties, from memory). What with those and the anti-constipation tablets, antibiotics and various other things I think I was up to 11 tablets at one point.

On reflection, things certainly became much easier once I'd moved completely over to PEG feeding. I found that trying to maintain oral feeding was putting too much pressure on me. The calories were far easier through the tube than via the mouth. I didn't swallow any food or liquid for at least 2 or 3 weeks.

In terms of weight, pre-treatment I was 12.3 or thereabouts, the lowest I got to was 10.5 a week or two after the treatment finished. Today I am 10.8. I did worry about this but on checking the weight for height charts this is not deemed to be underweight so now I'm not so bothered. The only advice I can offer in this respect is to keep pumping in the required calories via the tube. Incidentally, I found that there was little point going over the recommended amount (which for me was 2400 cal) - I put in 3000 or 4000 for a week or so and it made no difference. As long as I put in the recommended amount things were okay.

All the best Irene and remember that the light at the end of the tunnel is getting closer and closer.

Simon xx

Hi Simon

Thanks for yours, that's all very reassuring.  Yes on the subject of meds, my sister joked when she collected me from hospital yesterday that our Dad (89 and slightly obsessed with all things bowel and medication related!) would be jealous of the size of my pharmacy carry-out bag!!

I'm finding that I'm struggling quite badly to get the feed into me without feeling or being sick.  I was sick again this morning, but I do have a back-up of Levomoprazine which I've now taken 3 times to counter the nausea which has kicked in since the feeding started.  I was also alarmed to see blood in the vomit until I realised it was coming from a blister on my lip!  I'll speak to my nurse when I see her tomorrow and hopefully it will all settle down once my tum gets used to the richness of the disgusting stuff - how could anybody actually drink it I wonder?!

I really do appreciate all your support and encouragement Simon and hope things are continuing to go well for you.

Thanks again, Irene

Hi Irene

I was 10.10 and I went down to 9.2. It happened fairly quickly and then stabilised. I haven't put any of it back on and the doctors are fine with that as I'm now the weight I should be! I think my stomach shrank after not eating for so long.

I would suggest that you try and avoid morphine for as long as you can as that's not great for the bowels! I managed to keep on a fairly low dose and didn't have patches but, when I came off it, I was quite ill for a week. The gp wasn't sure if it was an unrelated bug or withdrawal from the morphine!

Soon you'll be drug free!

Debbie

Hi Debbie

Thanks for the weight info.  That's exactly what I'm hoping might happen to me!  I was 3 stones overweight to begin with (not complaining now, better to have a bit extra to fight it off!) but if I end up a stone or two lighter and keep that stable, then I'll be happy.  Yes, I thought probably best to keep the Oramorph up my sleeve for now. It never occurred to me about withdrawal symptoms, but of course I can now see that is highly likely and will heed your warning.   I've been having a real problem wth the Ensure drinks not staying down.  I was supposed to be aiming for 5 bottles a day but at 5pm yesterday found myself still struggling with my second!   I rang my support line who consulted a Doc and said I could ditch the Domperidone in favour of the Levomepromazine I was prescribed as an extra anti-emetic to be used as required.  It was prescribed at two half tabs per day but they've said I can up that to 4 and so far this seems to be working!  Did you have Ensure as well, or some other foodstuff?  Mine comes in strawberry, vanilla and banana - it's weird that you can tell the taste if you burp or vomit!  I think I'm going to ask for all strawberry for the next batch because I seem to be tolerating it better.

Time I was back to sleep, thanks again for your help.

Love Irene

Hi Irene,

Sounds as if you've finally got the nausea under control. I think that it was levomepromazine that sorted me out in the end as well. I seem to recall that this drug was originally designed to treat schizophrenia - it did the trick for my sickness though. I hope that you can start getting the calories in now as you need to be as well nourished as possible towards the end of your treatment.

Well down, Irene - we're all behind you girl.

Simon XX

Hi Irene

Yes I was on ensure although I stuck to the plain one. I was told to have 4 or 5 but I don't think I ever managed more than 3 and most of them came back up! I wish I'd been offered that anti sickness drug as none of mine worked.

I know it sounds shallow but it has been quite nice not having to go on a diet this January! That's a first for a few years! Every cloud and all that! Ha ha!

What date does your treatment end?

Love

Debbie

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 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

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