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.

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 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

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