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

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

Hi Nicola,

Regarding your sleeping, I remember that for a few weeks after treatment my sleeping was very hit and miss. I would wake up after only an hour or so and then have to get up and read/watch TV for a while. That passed after a few weeks and I now sleep for 8 or 9 hours on most nights - I have the normal interruptions where I have get get up and shower following nightsweats on some nights, or where I have to take a few sips of water, but generally I get back off to sleep okay. Prior to treatment I was a 5 or 6 hour per night person - I don't know if I'll manage to return to that.

I think that the dry mouth has improved very slightly - or it may be that I'm just getting used to it. Obviously I carry water with me whenever I go out and I guess that this is just a lifestyle adjustment that needs to be made.

My ulcers are continuing in anger and they are very painful. They are slightly improved today though. The oncologist was a bit concerned when I told him I was taking Oramorph for the pain - one of the ulcers is that size of a one pence piece and the pain is incredible (it rubs on one of my back teeth) - if he thinks I'm taking Asprin for that then he's seriously wrong!

I am managing some more adventurous food. I can now take food that is hotter than lukewarm (although nowhere near piping hot yet). Last night I had cheese and onion pasty, mash and sprouts covered in cheese sauce and I managed that without too much trouble. I also have half a tin of microwaved rice pudding with sultanas for dessert. I know how to live.

My taste is pretty good although I can't take anything with black pepper in or anything that is at all spicy. Like Debbie I used to like curry but I can't even take curried baked beans at the moment.  My taste buds were pretty non-functional immediately after treatment so I think that you can expect yours to recover over the next few days/weeks.

My neck is still a bit stiff and weak although this is improving albeit slowly. I still have an intermittent sore throat but again this is slowly improving.

It's incredible to think that I am now five mouths out of treatment and I am still having these issues. The good news is obviously that I am still clear of the tongue cancer so I continuously remind myself that this is all a price worth paying.

The lymph nodes in my groin are still swollen and this, along with my nightsweats, fatigue and itchy skin are somewhat worrying. My wife and I are trying to take the optimistic view that I couldn't possibly be so unlucky as to have one cancer cured only to get another! It is a worry though. The GP examined my nodes in the week and agreed that they are swollen and he sent me for a chest X-ray to rule out TB (no way is it TB!).

Irene - It is absolutely brilliant that you have got to the end of your treatment - well done you! Like you, my skin went very red but it did not break down - hopefully yours won't also. I also had low white and red cell counts and these did resolve in time (although my red count is still low but improving slowly). The oncologist said that blood counts can take up to a year to stabilise post treatment. Be sure to avoid people with colds or infections - you're on the home straight now and some other infection is the last thing that you need.

I have my latest check-up with the oncologist on Thursday - although it's technically an ENT clinic he will be hearing all about my groin nodes! As I said to Nicola, I am trying not to worry too much but it is playing on my mind - I'm trying not to constantly check my nodes (certainly not whilst walking around Waitrose anyway). Apparently, the only real way to check that a swollen node is due to infection rather than cancer is for one to be removed and then biopsied - that is what I will be looking for on Thursday.

I do so envy Debbie being back on the curry - what I wouldn't give to be able to sit down with a vindaloo and a pint of lager - maybe one day.

Anyway, sorry for all my woes. We are all in a better place than we were a while ago and I guess we need to keep that in mind.

Best wishes and good luck to you all - I'm off for another slug of Difflam.

Simon xx

Hello Friends

Simon, you crack me up "off for another slug of Difflam" that sums it up in a nutshell though doesn't it?! 

Sleeping patterns - yes that all sounds familiar to me too, wakening up after very short spells, however I did have a good night on Monday so feel I have caught up a bit.  Sorry to hear those ulcers are still giving you so much grief, they are such painful little blighters aren't they - aspirin - what?  So the long, slow journey back to eating is also progressing but all this five months after the end of treatment, so slow is certainly the operative word.  I must be PATIENT! Nicola, you are making good progress too, it must feel like it's taking an eternity, but hang on in there you are doing a great job and you will get there!

Yes it's great not to have to face the daily trek to hospital any more, however I did end up back there yesterday. Just an administrative thing which I'm sure could easily have been avoided and saved us an extra journey - frustrating!

I was issued with a leaflet by my Radiotherapy Dept when I completed my treatment on Friday. 

It advises you what to do  when skin on neck 'breaks down' i.e. go to your GP who will prescribe Hydragel

or ask Practice Nurse to apply a Hydragel dressing.  So it this happened on Sunday (of course), phoned GP surgery

first thing Monday and eventually got through around 9.30 due to usual Monday morning rush to be given appointment
for 3.40. GP and nurse have little or no knowledge re product which has an online drop down menu as long as your arm
and a multitude of dressing sizes and formats. Doc got the ruler out and plumped for the one that looked nearest the size,
printed my prescription and of course (I knew it!) the chemist didn't have it and couldn't get it till this afternoon.  
Overnight my neck got worse so I rang my specialist nurse (should have done so yesterday but was only following discharge leaflet!).   
By 11.00 a.m. we'd been to Ninewells and back, been shown how to clean off dead skin and apply dressings and sent home with supply 
of swabs and patches - (Mepilex Lite) completely different to the Hydragel the leaflet suggested but def the right ones for the job, so 
much more comfy now!  Why couldn't they have given me this info on Friday I wonder?  
When I asked they said they were in the process of updating all the literature!
Today my throat is really sore again and producing lots more mucus.  Struggling to get down sips of water.  I'd been feeling quite good over the weekend
and planning to visit my parents today (looking as good as my sister told me I was on Sunday) but today I might have difficulty passing that off!
Having been told side effects are likely to peak 7-10 days from end of treatment, I guess this is only to be expected.
Lots of friends are sending me ideas to keep myself amused during the next phase, knitting patterns and wool (charity baby knits), tapestry kit, film recommendations and books etc.  Something weird going on with my skin in general though.  I was looking forward to a proper manicure with acrylics from my daughter today, but think I need to shelve that.  Every single finger feels like it's about to break out into hacks despite lashing on handcream and Snowfire for the past few days - just excessively dry which I suppose is all wrapped up in other issues.
Off for a slug of water!
Apologies re formatting issues again!
Irene xx

Hello Friends

Simon, you crack me up "off for another slug of Difflam" that sums it up in a nutshell though doesn't it?! 

Sleeping patterns - yes that all sounds familiar to me too, wakening up after very short spells, however I did have a good night on Monday so feel I have caught up a bit.  Sorry to hear those ulcers are still giving you so much grief, they are such painful little blighters aren't they - aspirin - what?  So the long, slow journey back to eating is also progressing but all this five months after the end of treatment, so slow is certainly the operative word.  I must be PATIENT! Nicola, you are making good progress too, it must feel like it's taking an eternity, but hang on in there you are doing a great job and you will get there!

Yes it's great not to have to face the daily trek to hospital any more, however I did end up back there yesterday. Just an administrative thing which I'm sure could easily have been avoided and saved us an extra journey - frustrating!

I was issued with a leaflet by my Radiotherapy Dept when I completed my treatment on Friday. 

It advises you what to do  when skin on neck 'breaks down' i.e. go to your GP who will prescribe Hydragel

or ask Practice Nurse to apply a Hydragel dressing.  So it this happened on Sunday (of course), phoned GP surgery

first thing Monday and eventually got through around 9.30 due to usual Monday morning rush to be given appointment
for 3.40. GP and nurse have little or no knowledge re product which has an online drop down menu as long as your arm
and a multitude of dressing sizes and formats. Doc got the ruler out and plumped for the one that looked nearest the size,
printed my prescription and of course (I knew it!) the chemist didn't have it and couldn't get it till this afternoon.  
Overnight my neck got worse so I rang my specialist nurse (should have done so yesterday but was only following discharge leaflet!).   
By 11.00 a.m. we'd been to Ninewells and back, been shown how to clean off dead skin and apply dressings and sent home with supply 
of swabs and patches - (Mepilex Lite) completely different to the Hydragel the leaflet suggested but def the right ones for the job, so 
much more comfy now!  Why couldn't they have given me this info on Friday I wonder?  
When I asked they said they were in the process of updating all the literature!
Today my throat is really sore again and producing lots more mucus.  Struggling to get down sips of water.  I'd been feeling quite good over the weekend
and planning to visit my parents today (looking as good as my sister told me I was on Sunday) but today I might have difficulty passing that off!
Having been told side effects are likely to peak 7-10 days from end of treatment, I guess this is only to be expected.
Lots of friends are sending me ideas to keep myself amused during the next phase, knitting patterns and wool (charity baby knits), tapestry kit, film recommendations and books etc.  Something weird going on with my skin in general though.  I was looking forward to a proper manicure with acrylics from my daughter today, but think I need to shelve that.  Every single finger feels like it's about to break out into hacks despite lashing on handcream and Snowfire for the past few days - just excessively dry which I suppose is all wrapped up in other issues.
Off for a slug of water!
Apologies re formatting issues again!
Irene xx