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

Hi Jo,

How is the sleeping going? I'm forcing myself to go up to bed at a reasonable time and read for a bit but I often fall asleep with the light on! It's better than sleeping on the sofa though. My energy levels have been really low this week after a trip out at the weekend, it's surprising how little I can manage and it's difficult to explain the tiredness. I suddenly come over all strange and just have to sit down for a while. Trying to explain that to a two year told is a bit tricky! I'm being quite firm with myself though and leaving some of the housework until the following day if I've already done a few things.

Hope you are keeping well and enjoying the soaps!

Speak soon,

Nicola xxx

Hi Nicola,

Sorry to read that you're feeling down and still suffering from low energy levels. I know that a lot of it will be down to your diet / food intake, but I also think the weather makes us feel uninspired and has a bearing on our mood! I am ashamed to say I do very little exercise and I know that I should do more, but today, we went out for a trip to a little Derbyshire village, walked the length of the high street and then when the heavens opened, simply headed home!

I remember feeling tired for many weeks after my first round of radio/chemotherapy, but as mine was pelvic radiation, I didn't have the added complication of my mouth being affected and therefore my food intake being hindered.

The calogen drinks you described to Simon and Irene do sound awful and it's a pity they're upsetting your tummy! I hope your dietician can give you some helpful advice when she gets back to you.

You mentioned in your post to Simon and Irene ("Hi fellow forum friends!") about a holiday to Euro Disney! That sounds exciting. I remember taking my kids there (seems a lifetime ago now! They're both in their 20's!!!)

I can understand your anxiety about going and wondering if it will prove too much. But it's nearly 4 months away and I'm sure your recovery will have improved even more by then. Maybe see how you feel in a months time? During a 5 day stay, you'll be able to pace yourself and see most things you'll want your little girl to experience (and she'll get tired too, so a late start after a lie in or an afternoon nap, will probably be in order for you both)

We stayed for that long and tended to do a few hours strolling round the park and then relaxed back at the hotel.  We couldn't go on a lot of the big rides as my son was too little! Thank goodness for the Mary Poppins merry-go-round!!

Are any of your family going with you?

Ah the soaps. Yes, I'm still watching them, but still find myself 'waking up' as the final credits are rolling! I'm going to take a leaf out of your book and go to bed when I feel tired! (And maybe I'll sleep in the spare bed so that my 'night owl' partner doesn't disturb me when he turns in past midnight! You're still doing great! (Bad grammar, but hey!)

Hugs to you and your little girl, Jo xxx

Hi Nicola,

I really sorry to hear that you have been feeling a little down. I know that I don't have to tell you that to feel that way at this stage is only natural. You won't feel that way all the time and I can say from experience that your low feelings will slowly decrease over the coming weeks as you gradually adjust to how things are (and as your body continues to slowly recover from all that has been thrown at it).

I can fully understand your feelings in relation to eating and trying to maintain a healthy weight. It is difficult to find things that work for you and the stuff that they provide I did find pretty horrible - I gave up trying to take them orally and just relied on the PEG tube, not only because of a sore throat but because of the taste and texture of the milk shakes. The dietician tried her best but in the main I ended up doing my own thing. At one point I was on a diet of creamy mashed potato and gravy followed by Angel Delight - again, it was about finding what worked for me and sticking with it. I tried not to get too hung up on calorie counting (although this is important in order to monitor progress) I found that as long as I was getting in a reasonable amount of food my weight didn't decrease by too much. Yes I have lost weight but I am not drastically underweight for my height. I think it's important not to put too much unnecessary pressure on yourself. I think that your remaining taste buds will slowly recover over the coming days and weeks. The dryness will be a longer term issue but I am finding that this can be managed to the point that it is not a major problem. I occasionally forget to take a bottle of water out with me but as long as I remember to do those little things then life if not too bad with the dryness. The main issue with the dryness, of course, is that it dictates what one can and can't eat. How I long for a bag of chips!

I am planning to return to work by the end of Feb. I'm currently doing a small amount of work from home but I do miss the human interation (I don't miss the commuting into London though).

I have been thinking about your planned trip - I really think you should stick with the plan. I say this because you have generally been making better progress than me and I am now 5 months out from the end of my treatment. I feel that if I wanted to I could undertake such a trip. You are much younger and fitter than me and I feel that you can expect to be in a better state than I am now by the time that June gets here. It will also give you something pleasurable to look forward to and aim for. It is a slight gamble but I really think that the odds are stacked in your favour. In short, go for it girl!

Latest eating tip - cheese and onion pasty microwaved for 50 seconds (so that it goes all soggy) and then coated with a thin layer of mayo. Disgusting? Yes, but it goes down easily and tastes okay.

My ulcers are still there but at not now quite as painful as they were and so I'm hopeful that I will see the back of these soon.

The visit to the oncologist yesterday went well. He did take the swollen nodes in my groin, nightsweats and itching seriously and he is referring me to the surgical team for a node biopsy. At least this should give me a definitive answer and hopefully some peace of mind. Oh, and my throat and tongue are still clear of cancer!

Irene - Are things now improving for you? Are you enjoying the freedom that not having to travel for your daily zap gives you? I remember that the first few weeks after treatment were fairly grim and progress did come, albeit slowly. The mucus was probably the worst side effect but it did reduce fairly quickly for me, hopefully the same will happen for you.

Debbie - We are all hoping to get on the curry again - you have really set the standard for us to aim for!

I do miss booze! How I long for a beer or scotch and coke. I have had the odd Jack Daniels and flat Coke but my tongue is still slightly too sore to really enjoy the taste. My alcohol intake has been replaced with Difflam - how sad.

Let's all look forward to a bright, happy and healthy future - and also we can look forward to wishing Nicola bon voyage when she sets off for Euro Disney.

Love and best wishes to you all.

Simon XX 

Hi Simon & Jo,

I saw my Dietician, Speech Therapist and Head & Neck nurse today and all are pleased with my progress again. They have suggested that I decrease from 5 of the Fortisip milkshakes each day to just 4 a day and replace the 5th one with some soup or scrambled egg. They have also suggested mixing some cream or melted cheese within it for the added calories so I'm going to try that tomorrow and see how I go. They have also suggested drinking one of the milkshakes each day in order to build up my calorie intake via my mouth rather than using my PEG all of the time. This will enable a quicker removal of the PEG so I'm all for that, as awful as the milkshakes taste! I have yet another "over granulation" of skin around my PEG, one seems to clear up and another appears, literally overnight so I think I will suffer with this problem until it's removed. Unlucky me! I was weighed again today at the hospital and I have gained 1.5lbs in three weeks so I'm now 5 stone 11. Not far off of 6 stone, I'm hoping to reach there by the end of next month! Simon, I think you are right to concentrate on eating what works best rather than concentrating on the weight gain. I'm going to do the same going forwards. I also forget to take a bottle of water out with me sometimes but it's something we'll both grow used to doing I'm sure. It's only a small adjustment to make considering all that's happened.

It occurred to me today that I always thought my PEG could come out around March as that would be three months post treatment but as March is only a few weeks away, there's no chance of that happening. It's amazing how quickly it has all happened and how much I have relied on the tube for feeding. It seems strange to imagine not using it anymore. My MRI scan is all set for next week. It's come around a little sooner than I first thought but I won't get the results until mid March when I next see my Oncologist. Fingers crossed for that! I'm feeling better this week and not so down. Probably the weather does have a little to do with my mood being down recently as suggested by Jo. I have been trying to get out and about a little more and doing some more normal things so maybe this has helped, even though I am absolutely shattered afterwards! Sounds the same as you were describing Jo! My nurse seems to think my trip to Euro Disney will do me lots of good and that I'll be ready by then, so I'm pleased about that and yes Jo, we have a friend coming too so I'll have some help with my toddler should it all get too much!

Simon, I'm glad to hear you are planning on returning to work. Good luck with that. I can't wait to get back, will you be easing your way back in by doing half days at first? I expect it will be very tiring. Any further news on having a biopsy of your nodes? Your new diet of soggy pasties and mayo does sound pretty bad but if you can eat it then well done to you! You'll get some funny looks when you're back at work and eating these strange combinations during your lunch hour!

Jo - I hope all is well with you, keep us posted with any updates on your liver the the op. I've been thinking of you.

I hope Irene is ok. If she is anything like I was, she will be sleeping constantly at the moment with no strength to do anything! We're thinking of you Irene!

Thanks for your words of encouragement, it helps me a lot to speak to people that understand this rocky road.

Speak soon,

Nicola xx

Hi Knic,

Thanks for your post. I read a little about how you've come to be apart of this discussion board and I hope all is well?

Thank you for your encouraging words. Many people say I'm an inspiration for dealing with what I have, although I don't agree. I've done what I've had to do! I'm sure anyone would do the same. It's been tough but I'm hoping to open the champagne in a few weeks when I have the results of my next scan.

Speak soon,

Nicola