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 Debs and all of my friends on Cancer Chat. I just wanted to wish you all a great and positive year ahead, also to everyone else who is on here or finds themselves in this predicament . Good luck everyone .

Ferry xx

Thanks, ferry! Happy new year to you and everyone else here too!

Irene, I too was worried I'd choke on the phlegm whilst "masked-up"! However, I used to have a good spit in my large mound of kitchen roll (lovely!) which was always by my side and it was fine. I think the mucus slows down when you lie down!

Debbie

Many thanks Deb, that's comforting to know.  I have been stocking up on kitchen roll though!

So far I'm having a good day , just been to the shops to spend a couple of Christmas vouchers so a nice lift!

Thanks Ferry, I'm a relative newbie and am really finding this forum is great for letting off steam, picking up tips and just brilliant support in general.

HELP!  I can't believe I've gone from two really upbeat 'normal' days to this.  Since yesterday my throat is on fire and I am scarcely eating at all.  Have also been sick 3-4 times since last night for the first time since treatment started - not chemo related, purely a combination of the overdose of dairy products in my tum and muck in my throat.  The very word 'creamy' makes me heave now.  When I saw my support nurse on Friday she told me I was doing all the right things re eating, just trial and error.  I explained the dairy intake was beginning to make me queasy in itself, tried some different soups, etc.  They said I'd see the dietician on my next chemo day as I've lost 2 kilos since last week.  Today I feel as weak as a kitten, anything that has gone down has come back up (inc anti sick pills and painkillers) and I feel that right now I just want to start tube feeding and not have the stress of trying to eat for the sake of it.  I know everyone has different experiences, but did this kick in very quickly and suddenly for others?   They upped my cocodamol dosage last week but it's only barely taking the edge off the pain so hope I can get something stronger soon.  I also have mouthwash as well as Difflan which is soothing but short-lived.  I just tried spaghetti hoops - only managed a couple of spoonfuls.  Also finally found and tried butterscotch Angel D and again can hardly taste it but everything just too damn rich and stomach-turning.  Feeling sorry for myself - any tips?

Irene x

Hi Irene,

I'm really sorry to hear that you are experiencing some difficulties at the moment.

Thinking back to my treatment this was about the time that I began to suffer with extreme nausia, uncontrollable vommiting and sore mouth/throat. Not sure which chemo you're on but if it is cisplatin like mine then this is renown for sickness related issues. The hospital should supply a strong dose of anti sickness medication - both during the chemo and to take home - to deal with this. Not all anti sickness meds work for everyone. I was told that I should go to my nearest A&E should I experience uncontrollable vommiting - this I did twice and I was admitted on both occasions to allow me to be rehydrated and for anti sickness medication to be provided via a drip. I was also in possession of a card that I had been given which allowed me to be fast-tracked in A&E - much to the annoyance of the people waiting there. Uncontrolled vomiting during treatment is a serious business and should be treated as such. I do sympathise as the feeling of nausia slowly grinds you down. It is important to keep your nutritional intake up and so the nausia does need to be dealt with.

I think that I moved over to solely PEG tube feeding at about 2 or 3 weeks in. I was unable to swallow more than once or twice a day and even then only a small sip of water. I was completely unable to take food by mouth. Once I'd accepted that the PEG was my life-line and needed to be relied upon totally for a while, things became easier - it took pressure off me and I was able to keep my calorie intake up.

In relation to the pain, Difflam was good but at about the stage you are at I had moved on to morphine (Oramorph). This really helps with the pain management. People may tell you to gargle with aspirin etc, but I quickly realised that I need to move onto the 'big guns' to keep the pain in check.

It might be an idea to do two things, firstly to ask that your anti-sickness meds are reviewed, and secondly to ask for Oramorph. If you find yourself vommiting and unable to keep food or medication in then seriously think about going to A&E - I found the service there first class and they were able to control the sickness and nausia far more effectively than the staff at the cancer clinc were.

The above comments are obviously based solely upon my own experiences and I have no medical expertise whatsoever.

Good luck, Irene. It's a rocky road but it is worth the journey. Things do get better and soon this will all be a bad memory.

Feel free to ask anything you want.

Chin up girl!

Simon XX

Hi everyone,

Happy new year to you all!

I've started the new year feeling positive again as I feel noticeably better and more like my old self. I'm feeling stronger and I'm able to cope with doing more things each day without getting tired out so easily although I'm constantly being reminded not to over do it! I have been staying with family for two weeks but I'm back at home now. I'm only taking cocodamol three times a day now but I have some anti biotics for oral thrush (second lot since treatment started) and I've also been prescribed some more anti biotics for my chest infection. Although this improved it got worse again and the green stuff is back! So apart from yet another problem with my PEG, I feel ok. Unfortunately I have an "over granulation" of skin at my PEG site which is where the skin tries to grow over the tube. It was very sore last week so I called the community nurse out to have a look at it and she finally showed me how to unclip the PEG and pull the plastic bit away from my skin so I can apply some steroid cream which she prescribed. It feels a lot bette now, but looks very ugly. I have a huge black scab stuck to my skin - urgh! I'm told this should fall off though in time. I'm still unable to eat via my mouth and still have no taste but it's still early days and I'm in full swing with using my PEG now and I just get on with it. It's become normal for me. I'm still spitting out the extra saliva/mucus. I keep remembering that Debbie said I should be able to stop spitting by new year, unfortunately I've not been tha lucky, but I do see an improvement.

Simon - glad to hear the night sweats have improved and that you could enjoy Christmas dinner. Are you going ahead with the PEG removal tomorrow? Is there an update from the oncologist about your ulcer? I was only treated on one side of my mouth but I now get ulcers on both sides of my mouth. I worried about this too but my head and neck nurse assured me that it's to do with the imbalance of chemicals in my mouth from the treatment and was completely normal. Hopefully this was the same for you.

Irene - sorry to hear how you are feeling. You must be beginning week three now and when I think back to my week three, my taste buds had gone but I didn't feel too bad otherwise. Ask if you can speak to somebody next time you go for treatment, don't wait for your next review. There is always some advice or medication that can be offered rather than you suffering, the main priority is to get through the treatment - radiotherapy especially - so you'll get all the help you need to ensure this happens. If you are struggling with food/liquids via mouth, put some through your tube instead. You can still try and eat orally as well but anything you can't manage that way, use the tube instead. Doing a gradual change from mouth to tube is probably better than a straight swap as I did, as I then found it hard mentally to get used to it. I hope you begin to feel better and keep telling yourself that this isn't forever. In a few weeks time you'll have completed treatment and can begin to recover. That's now I got through it. Always come on here for help and support too    I've been thinking about you.

Speak soon,

Nicola xx

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 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 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

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

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