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 Nicola,

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

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

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

Take care and keep up the good recovery!

Hugs, Jo xx

Hi Nicola,

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

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

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

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

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

Simon xx

Hi Nicola

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

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

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

Thanks Irene x

Hi Irene,

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

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

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

Simon XX

Hi Simon and everyone

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

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

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

Irene x

Hi Irene,

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

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

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

Simon xx

Hi Simon

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

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

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

Love Irene x

Hiya Irene,

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

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

I'm really chuffed for you.

Have yourself a good weekend.

Simon XX 

Hi

I'm so pleased you are all progressing well!

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 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

Hi Simon,

Could it be that you are coming down with something to cause your lymph nodes to swell up? Sometimes that can be a sign of a virus or similar? Worth getting checked though. I'm sure it's nothing but I understand how it will worry you.The dry mouth I can sympathise with. It's like no other dry mouth ever before isn't it?! I don't think I can put into words how dry my mouth is in the mornings, and during the day sometimes. Even water doesn't slide down like it should, it kind of gets stuck amongst the dryness!! How is your taste? Have you re-gained your taste buds or has it been gradual? I don't seem to have much taste yet.

I'm not sleeping well at the moment, can't get to sleep then when I do, it's broken sleep, then I really don't have the energy to get up in the mornings so I understand your lack of energy. It's frustrating isn't it? The cocodamol doesn't help either. I'm avoiding driving at the moment until I'm feeling up to it, also my neck is still pretty sore and stiff from the radiotherapy so I'm stuck in the house all day everyday. It's getting increasingly boring, I'm going mad! Not having three meals a day to break up the time doesn't help but I do look forward to my daily bowl of porridge! I ate a yoghurt today too which I was dreading as I thought it was going to be painful but wasn't too bad although my throat did sting after. Yawning is also very painful, it stretches muscles I didn't even know I had!

Debbie - thanks for the info. I spoke to my GP about this yesterday too and she was also reassuring. Also, how was the recovery of your taste buds? Did they gradually come back? I have some taste but not a lot and I'm hoping this will improve as it's still early days.

It was Irene's last day of treatment today, I do hope she is ok.

Speak soon,

Nicola xx

Hi Nicola,

Apologies for not replying sooner to your last post to me!

I have been following the Roy and Hayley story on Coronation Street. Although I'm not in the same position, the storyline has really moved me and there are so many aspects of it that I'm sure most of us can relate to. I think it will have raised a lot of discussions/debates in many households too.

Sorry to read in your post to Simon that you're not sleeping well. It must be hard having such low energy levels during the day, especially with an active toddler to look after! As you can see from the time of this post, I'm in a similar boat to you! Thankfully, it's a bit of a blip and the fact I fell asleep on the sofa for a few hours, hasn't helped!

I hope your sleep pattern soon improves, along with the neck pain you're experiencing. You've come such a long way, Nicola. Keep going!

Love and hugs, Jo xxx

Hi Nicola

My taste came back fairly quickly. Certainly within three months of the treatment ending. I had been told that I may not be able to eat spicy food again but fortunately it's fine and I was soon back on the curry! Yippee!

I can't drink red wine any more as I no longer like the taste. Also, dry food can be a bit difficult so, for example, it is now better for me to eat a tuna sandwiches than cheese sandwich  and chip sandwiches are too difficult. I think it's the lack of saliva because I find it harder to swallow really dry food. However, it's all pretty minor and nothing to worry about.

I didn't live on a diet of curry, red wine and chip sandwiches before! Honest!

Debbie

Dear Nicola and Friends

First of all sorry for not posting sooner.  I bought myself a little notebook/tablet thinking it would make communication easier over the next week or two when I'm expecting to be feeling at my lowest (so they keep telling me) and unable to sit in a draughty hallway on a not-very-comfortable chair at my PC desk.  However it's taking me a while to get to grips with the navigation and I keep losing stuff which is infuriating.  I typed up a couple of paragraphs on it a few minutes ago and managed to lose them before I had saved/posted the comment, so I'm back at the trusty old PC!

Well pleased to report my second stay in hospital did the trick again and I had a few good days last weekend with feeding and sickness back under control. Then on Tuesday I went for chemo as usual and found my blood count was too low, so instead had to have a transfusion and they gave me my chemo on Thursday instead.  All went well but I've been told to be extra vigilant re nausea/vomiting having missed last week's chemo and had this week's two days late. So far so good, but I am stepping back a bit on what the dietician instructed me as I did feel a twinge of nausea last night/this morning so cut the dose rate back and had plenty of breaks rather than risk getting back on that sickness trip again - no thank you!

So my final treatment was yesterday - it was a huge relief to know that I no longer have the daily trek to and from hospital, but strange not to be able to celebrate in a traditional way by eating or drinking!  I have been having lots of pampering sessions though, both at hospital, in the Maggie's Centre and from my daughter at home.  She's doing a manicure for me next week!

My neck skin is getting really red now but much later in the treatment than most and has not yet broken down, but I am keeping an eye on it!  I've been advised to ring into my support nurse with even the slightest problem or to go and see my GP with any skin issues.  My throat has been really sore the last couple of days and the mucus tastes just vile with nothing to alleviate it (must get to Holland and Barratt Simon but not handy for me).

Nicola - so sorry to hear you have had the added worry of fertility issues through mixed messages from the medics.  I do hope everything works out OK for you, it sounds like there is hope after all.  I have been following Roy and Hayley's story on Corrie.  I think they have handled the storyline very sensitively in general and although in ways it has been too close too home, it has also been a valuable insight into coping with a terminal situation. Sadly I recently lost two of my new-found friends who were in neighbouring beds during my first 3 night stay in hospital.  When I went back to the ward for my second in-patient experience one had passed away and the other did just a few days later, which was such a shock although a blessed release for both of them as they were in such pain.

On a positive note, I had a delivery of beautiful flowers this morning from my Mum, Dad and sisters.  Probably the first time in a while I have 'welled up' but it has been so good to have the support of family and friends, old and new, offline and online.  They also warned me I might feel emotional at the end of treatment anyway so I guess that's why!

I understand what you're saying Nicola re water getting stuck among the dryness - in fact that's a great way to describe it.  Sleeping is also really weird for me, just catching very short but sound naps and not feeling I'm getting any proper quality sleep.

Simon do please keep an eye on those lymph nodes and check with your oncologist ASAP?  Jo - sorry to hear about your chemo problems and hope all resolves itself satisfactorily i.e. you get your op as planned - no I am sure you are not odd to be wanting that!  Debbie - glad to hear your taste buds came back pretty quickly and you are back on the curry, red wine and chip sandwiches!  Seriously, it is good to know that any problems are minor ones.  I have my nephew's wedding on 14th April which my dietitian is using as my goal to be almost eating a full meal by then - fingers crossed!

Sorry this has been a bit rambling but thanks again for all your support and advice guys.  I will probably be asking lots of questions over the next week or two.

Love Irene x