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 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 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

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

Hi Simon & Irene,

I'm feeling a little down this week. My dietician prescribed some calogen drinks which are calorie boosters to help me gain some weight. They are disgusting. I'm not even drinking them, I'm putting them down my tube but they look disgusting and are making me feel very sick. Although I haven't yet been sick I have had diarrhea since Sunday (sorry if too much info!) and I only started them on Saturday. They look like gloss paint and have an oily texture so imagine mixing oil with milkshakes, not a good combination in the stomach! I'm still on 5 of the Nhs Fortisip milkshakes a day although I haven't managed all 5 over the last couple of days and I also haven't been able to manage my daily porridge and yoghurt for the last two days due to feeling awful. It's got to be down to these new calogen drinks so I called my dietician this morning to ask her advice but she's not in the office until tomorrow. I've decided to take a break from them until I speak to her as the endless trips to the loo are not helping me to gain weight and I'm concerned they will have the opposite effect. I'm supposed to have 100mls, three times a day but that's an awful lot on top on top of the milkshakes, when my stomach isn't used to it.

I'm also worrying about my trip to Euro Disney that I booked a few weeks ago. We're not going until June and its for 5 days, I wanted to spoil my daughter a little as I haven't been the usual hands on mum these last few months because of being so poorly so I wanted to do something really nice and extravagant with her but now I'm worrying I've jumped the gun and it will be too much too soon. My friend took me out on Sunday and we went down to the seafront for a little walk and browsed the shops, stopped for a coffee, it was lovely as was one of the first times I've been out and about in a while but it's literally taken me two whole days to get over it. I've been exhausted. So now I'm wondering how on earth I will cope walking around a huge theme park for 5 days. I know it's a while off but this recovery is going much more slowly than I had hoped. I used to think I could return to work next month, but now we are into February and I know there is no hope of that happening so I aimed for April/May, but after these last couple of days of feeling very tired I don't even think that's realistic either. My GP gave me a new certificate last week for three months and I had hoped that would be the last one. Now I'm wondering if I should cancel the holiday in June.

I'm concerned about my taste buds too. I always knew I would lose 50% of them due to the tongue op I had back in September, I'll never regain those obviously but I seem to only have about a quarter at the moment on the good side of my tongue. When I put food in my mouth I can taste it immediately but then after a couple of spoonfuls the taste disappears and the taste is very little. There is literally no taste towards the centre of my tongue and I worry that this is what I'm left with. If so, I can't see that I will ever enjoy food again or put weight on. I'm 5 stone 9 now so not much increase in the almost 7 weeks since treatment ended. I've had to buy some kids clothes as nothing fits me anymore and I just feel so weak all of the time. I feel I got through the surgery and treatment very well but living with the after effects are much harder than I thought. Maybe I need to give it more time but as no one can really say for sure how my taste buds will be on a permanent basis, it's really difficult to be patient. I'm getting increasingly fed up with being stuck at home, visitors seem to have dwindled now that the tough stuff is over and I hate having to be so dependent on everybody. Still, I have a hair appointment tomorrow so hopefully that will make me feel a bit better, it'll be the first time I've had my hair done since before my surgery last year.

Sorry to moan! But I have been thinking a lot about you both over the last few days. Simon, I'm sorry to hear you are worrying about the swollen nodes, I would be worried too though. I noticed a little lump on my forehead the other day, I probably bumped it on something without realising (or more likely my daughter bopped me on the head with one of her toys as I'm used to that!) but I kept checking it in the mirror until it had gone away. You'd be right to push for them to be tested when you see your oncologist tomorrow, hopefully he will be supportive of this, but yes, very unlucky if it were something serious but also very unlikely. Still, of course you will worry, more than the average person, after enduring what we have. Give us an update tomorrow if you can. The food you are eating sounds delicious! I often compare my myself to your progress when I'm thinking about food so it's good to hear what you are managing to eat. As for the ulcers, it's quite amazing how our head and neck nurses, dieticians etc have probably worked with many tongue cancer patients in the past but still seem clueless (to me anyway) how difficult it is to get back to normality or deal with the pain etc. if you feel you need oral morph to manage your pain then you'll be the best judge of that. There is no way you can keep up a good diet to gain weight if the pain is too bad - why can't they see that?! I must say that my mouth seems to be almost back to normal, I've not had an ulcer for a little while (touch wood) and the fuzziness around my gums is improving, it's just the taste that is frustrating me now, along with the indescribable dryness.

Irene - what a lot of efforts you had to go to about your neck! The last thing you need is trips here there and everywhere, how annoying for you! I remember those days after treatment very well and I certainly wasn't up to going out anywhere. I would agree that definitely postponing your nails etc is a good idea. I didn't get my nails done for many weeks afterwards in fear that I would jinx things and end up back in hospital! I also refused of have my PICC line out for a good couple of weeks after chemo ended incase I ended up back in hospital, as the line would need to go back in and the nails would have needed to come off! My skin on my neck did not break down fortunately, but it was very red raw and sore. I too was given some gel pads but now I only use aqueous cream. It seems to be more swollen these last few days though and the skin feels very tight so perhaps I could do with using something else on my neck now. My chin is also quite swollen right now and the one side of my face, I look a bit fat! Listen to your body though, sleep when you need to and get lots of rest. I have been amazed at how much it has all affected me. When we lie on the treatment table and they blast us with the radiotherapy, we can't feel it at the time so I think that's why I was so shocked at how much it has affected me over all. I remember being completely out of action for anything for a good 8 or 9 days, then it was a very slow improvement. Almost 7 weeks on and I still can only manage simple daily tasks, anything more and I'm wiped out. You sound in good spirits though.

Anyway, keep up the good work both of you, I look forward to hearing from you soon.

Nicola xx

Hi Debbie,

It sounds as if you bounced aback fairly quickly with your eating and your taste buds, I hoped as lucky as you.

I'm very disappointed to hear that you can't manage chip sandwiches, as that used to be a favourite of mine. Oh well. I guess I'll find something else instead. I think curry is a long way off for me as certain things leave a burning sensation in my throat. I hope that doesn't last forever though as I was a big fan of curry and white wine! I'm 7 weeks post treatment and feel recovery is going pretty slowly in terms of eating. I'm eating porridge and yogurts daily but had hoped to be a little further forward than this by now. It's ironic that I was always a fan of fairly dry food, for example, I loved a plain cheese sandwich, or crackers with cheese, chocolate and was not a fan of sauces with my food, but all that will have to change.

I think I'm at the depressing stage where eating and drinking again all seems a long way off!

Nicola