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.

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 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

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

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 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 everyone,

Thanks for all of your replies again.

Jo - How are things with you? Have you finished chemo yet or are you still having it at home? What's the next stage with your kidneys? How are you feeling? I also fall asleep on the sofa in the evenings and wake up to find I have missed what ever I was watching! By the time I get myself up to bed I only get a few hours of comfort then before I know it I'm being woken up by my two year old! The fatigue seems to strike now and then, mostly I feel fine and then suddenly I feel awful and I know I must sit down and rest. Funny how chemo can do this to us!

Simon - I laughed at your "Gandhi's flip flop comment as I know exactly what you mean. On the whole, all symptoms of radiotherapy are a nuisance but when speaking about them with you and the others who have experienced the same, I have a little giggle about them! As I have gradually become used to the dry mouth, painful throat and neck etc, when it occurs (usually first thing in the morning or during the night) I smile to myself now. Have you found the salt water to help with your saliva at all? I do worry about my teeth as my mouth is permanently dry so I shall mention this to the hygienist when I see them next. How are you getting on with your food?

Irene - final week! We told you it would go by quickly. I've been thinking of you an awful lot, I hope you're feeling a bit better this weekend. Sorry to hear you have been in hospital. My head and neck nurse told me last week that most patients having our kind of treatment do get admitted to hospital at some point. This week and the next few weeks will probably still be difficult weeks for you but like me, you'll probably be so relieved that you've come to the end that it will all seem so much more manageable. You'll probably sleep like a baby and feel so relieved that there will be no more daily treks to the hospital. How are the feeds going now? I don't have any tips for a fresh mouth unfortunately, I didn't feel the need as nothing was going in via my mouth, although I do taste the metallic flavour in my mouth occasionally even now and still could when I didn't have any taste buds left. Strange isn't it?

I haven't posted on here for a few days as I've not had a good week. I had my check up with my oncologist last Monday but I didn't see my usual doctor, it was a different one. She did the usual checks and asked me the usual questions etc and prescribed me another round of anti biotics for oral thrush then when I asked her about my periods (my last one was week 4 of radiotherapy, so 8 weeks ago) she looked really awkward and then told me that my periods probably won't return and I will most likely be left infertile due to the chemotherapy. I had heard of this being an effect of chemo but I was told by my head and neck nurse right at the very beginning that my chemo drug and my dose wouldn't have any adverse affect on my fertility therefore I never worried about it, so you can imagine my surprise when the oncologist told me something completely different last week. She also said it's likely I could go through the menopause now. She apologised that no one had had his conversation with me before and so I left the appointment feeling very down and upset. I am 33 and I already have one child but I never thought my daughter would never have any siblings so hearing such news was devastating for me.

The following day my usual oncologist called me and left me a message saying not to worry about it, he wasn't expecting my fertility to be affected and my periods will come back but will take some time. I had my usual appointment with my head and neck nurse on Thursday and my usual oncologist came along too to reassure me some more which I really appreciated. He spent a good half an hour with me, talking to me about statistics etc so I feel a lot better about it now however I suppose I'll never know until I try. He says my fertility shouldn't be affected but as me and one other patient of his are the only two young people he has ever treated for head and neck cancer, it's hard to say for sure but he did go onto to reassure me that he has other young patients who he has treated for lymphoma and they have gone on to have successful pregnancies. Also, my dose of Cisplatin was a low dose of 40mg where as a normal dose would be 100mg. It understand that fertility reduces with age but having had chemo as well, my chances could be slightly lower than the average person, but at least there is hope. I really do hope he is right but for the few days last week I had no appetite and it was constantly on my mind. I began regretting having the chemo but since being reassured I feel happier.

My dietician gave me a new goal last week on achieving 5 spoonfuls of soft food, three times a day as well as my five fortisips. I will also be having three calorie booster drinks each day, these should arrive with my delivery of fortisips this week so I haven't started them yet. I have put on 300 grams this week but at 5 stone 10, I really need to get some weight back on now, I have been managing half a bowl of ready break for the last two mornings with lots of sugar, then during the last few days I have had a few cups of tea, a couple of spoonfuls of jelly or rice pudding or custard but 5 spoonfuls three times a day is a bit much at the moment. I think I will have to work my way up to that and I find I feel quite nauseous after eating anything. Probably because my stomach isn't used to it. Hopefully I will get used to eating again over the coming weeks, as it took me a few weeks to get used to eating via my peg, so I will just need some time to build up to eating by mouth again after all this time. I also have another over granulation of skin at my peg site so I'm back on the steroid cream for that and it's been sore again - roll on the removal of his damn thing!

I will update you all again soon with progress, I hope you all have a good week, especially you Irene.

Nicola xx

Hi Nicola,

Lovely to see a post from you, but sorry you've not had a good week!

It's a shame you had mixed messages from the Oncology team regarding your fertility. So glad that your regular oncologist was able to allay your concerns and go through the statistics with you. It's great that your appetite picked up too, once you felt more reassured!

I hope you're able to reach the goal your dietician has set you. It sounds like you're getting there with your Ready Brek, custard and rice pudding! Keep up the good work! Hopefully, the Fortisips and calorie booster drinks will help you put some weight on too.

My weight seems to have plateaued just below 49kg (7st 10lb) no matter what I eat! Ah, the joy of a stoma! You put food in, but  it's out mighty quick!

My chemo had to be stopped as I was intolerant to it! Apparently I was in the 5% of folk who are unable to process it (something deficient in my liver!)

This pleased me as I'd had a rough time over Christmas, but the downside is, I can't have anymore, should I need it, after my liver resection! Let's just hope the liver surgeon does a good job!

I did have some good news regarding the chemo though; my last CT scan showed that one of the cancer spots on my liver was now undetectable! Yay! Though this does mean that a resection op may need to be delayed as the surgeon wouldn't be able to 'see' the cancerous area to remove it! And we'd need to wait until the cancer grows again!

I'm having an MRI scan on Weds and when the results are in, I'll be sent an appt with my liver surgeon. I'm hoping this scan will show where the cancer spots are and the op can go ahead! Am I odd for wanting an operation to go ahead?

Another plus, my energy levels are building and I seem to achieve great things each day (I painted a window sill one day!) and I'm also able to stay awake until 9 o'clock at night before I crash and burn on the sofa!

Well, Nicola, keep up the good work of putting weight on and supporting your other buddies on the forum!

Love and hugs to you and everyone else on this thread! Jo xx

Hi Jo,

Sorry, I got muddled and asked about your kidney, when I should have said liver! So it sounds as if it's good news and not so good news - good as in the spots have shrank and you don't have to have anymore chemo but then not so good as in you can't have anymore should you need it. I'm sure the surgeon will do a good job should you have the op, if I were in your position I would want the op too so you're not strange!

Great to hear your energy is up. Some days I feel like I have lots of energy but then other days, including today, I feel as tough I have none and I need to nap, but a bit difficult when I have a toddler wanting to pay all day!

Have you been following Hayley and Roy's story on Coronation St? I have found it difficult to watch so glad it's over now. Hayley was diagnosed at the same time as me and although a different cancer, it was all a bit too close to home.

It's very difficult to gain weight isn't it. Sometimes I feel like saying to the dietician, (as nice as she is) that its easier said than done!!

Love and hugs to you too,

Nicola xx

Hi Nicola

I was told at the beginning of my treatment that the chemo might bring on the menopause. (I'm 46). My periods stopped for 6 months and so I thought it had. I felt a bit annoyed that the cancer was responsible for that too! However, after 6 months, my periods just started again and have been as regular as clockwork ever since!

I know we're all different but I just thought id let you know my experience.

Debbie

Thanks so much Debbie, that makes me feel so much better! It's strange that we all get told different things isn't it, you being told it could bring on the menopause and me being told I had nothing to worry about. Do you think your weight loss contributed to your periods stopping too? I'm hoping some weight gain will help mine return, but it's still good to hear from another female who has received the same treatment as me.

Nicola

Hi Nicola and everyone else (this thread is really like one big support group),

Nicola, I am glad that you seem to be doing so well - you really have made excellent progress overall and I feel that you are ahead of me in terms of recovery. The dry mouth is a worry as far of the welfare of our teeth is concerned. I think that my saliva situation may have improved very slightly - I now only wake at night maybe twice with Ghandi's flip flop. I must confess that I haven't been doing the salt water as often as I should. I'll step it up and let you know how it goes as salt water is good for the gums and teeth in any case. I do clean my teeth now maybe 4 or 5 times per day and I use Difflam 2 or 3 times per day.

My food is very slowly improving. My main hurdles now with food are the odd ulcer that I seem to be getting, the fact that I have no appitite most of the time and the reduced saliva in my mouth. I am only getting around 1200 calories per day but I don't seem to be losing any more weight. I do have three meals although I cannot take anything with a lot of sugar in for some reason - probably just as well with the teeth situation in mind.

My issues at the moment are occasional extreme fatigue - for instance, today I could barely drag myself out of bed and it was a real struggle to make myself do anything constructive. I have also been experiencing some strange itching all over my body for a few days - this has been so bad that I scratched to the point where I drew blood. Fortunately the itching doesn't seen so bad today so maybe it's going away. The good news is that I haven't had any night-sweats for a couple of weeks now. One concern I have is that I have noticed that the lymph nodes in my groin are palpable. They are baked-bean size and are hard - I noticed them when I was in the shower. I don't think it is anything to worry about but you know how the slightest thing can set hares running. They may always have been like that and it could be that I've only just noticed. I will keep an eye on them and raise them with the oncologist at my next appointment.

Well done for all the progress you have made, Nicola. We are all so pleased for you.

Simon xx

Hi Nicola

I was told that it was the chemo drugs that would make my periods stop. Although I lost weight, I've only gone down to what I should be so I don't think it was that.

You are doing so well - keep that positivity going!

Debbie