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.

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 Nicola,

Good to hear that you are still making progress. I know that things can seem to move very slowly and I think it's usually best to compare ourselves with how we were a few weeks ago (as opposed to just a few days ago). I've found that the journey can be something of a 'wavy line'. By that I mean that we will not necessarily feel better every single day - in fact some days we will feel worse that the day before. The important thing to focus on is the overall trend which is one of improvement and a slow return to better health. Yes there are ups and downs but overall there are more of the former and less of the latter.

Well done for putting on 1.5 pounds. I know how hard it can be. I'm stuck at 10.5lbs (which seems massive compared to you) but I've taken the view that this is okay as long as I don't start to lose weight. I've still got about 170 pots of NHS milkshake in the garage but I can't face them. I did ask if I could send them back as I no longer need them and I was told to throw them away which seems such a waste to me, especially in the current financial climate. My current food-fad is cheese and onion omelette, or mashed potato with fish in breadcrumbs with cheese sauce to soften things up. The mash needs to be very creamy in order to counter the dry mouth. 

The lymph nodes in my groin are still swollen - they have not gotten any larger but nor are they reducing. I'm still awaiting news of the biopsy and I will chase them if I haven't heard anything by the end of this week. I am seeing the haematologist on Wednesday so I'll discuss this with her as well (my initial referral to her was because of the swollen nodes so maybe she will chase this for me). Up until a year ago I was a really healthy and fit individual who rarely, if ever, bothered the NHS - now I seem to spend most of my time awaiting an appointment or trekking to the hospital for a blood test or scan. My mouth is still a bit sore and my ulcers have good days and bad days.

Good luck with the MRI scan next week, Nicola. I remember that I had a long time between the scan date and the consulatation. At the scan the radiologist said that the results were available within 7 days or so. I contacted the nurse and asked if my date could be brought forward by a week and this was done. It might be worth you being cheeky and trying the same - nothing ventured........

I hope that Irene is okay - I haven't seen a post from her for some time. Are you out there Irene?

All the best.

Simon xx   

Hi Nicola,

Great to see that your medical team are pleased with your progress. Their suggestion of adding cream or cheese sounds good advice to increase the calories. As you know, my diet is similar to yours in that I need the added calories (and salt!) and fibre is a No-no for me, so brown bread, jacket potato skins and too much fruit and veg per day, are not on the menu! (Still have trouble with this 'unhealthy' diet I find myself on!)

Glad to read that you're taking a friend to Euro Disney too! Bet you're looking forward to all the excitement of meeting Mickey and the Disney Princesses! We saw a lot of Chip N Dale when we were there (or Tic N Toe I think they were called in French! Or was it Tic N Tac?) Never mind!  I digress!

You mention 'granulation' when talking about your PEG. Excuse my ignorance, but what is granulation? I'm imagining over generation of skin cells round the PEG? Or am I wildly off beam?

You kindly asked about any updates on my liver op. You may regret asking

Well, following an MRI at the end of January, I met my liver surgeon in early Feb. I was aware that there were two, operable tumours in my liver from my previous scan in October '13. So my partner and I went into the meeting thinking we would be discussing the op and clarifying a date.

Unfortunately, my most recent scan showed another tumour had developed! I was rather taken aback as my last CT had shown that one of the tumours was no longer detectable! But CT scans are less clear than MRI's so sadly, there it was, in shades of grey, (don't think there were 50!     ) on the surgeons monitor! Three of the pesky blighters!

All the questions I'd prepared disappeared out of my head, so I've no idea how big they are, if they're near veins etc etc!

The upshot is, we're 'waiting' until April when I will be re-scanned to see if anymore stray cells have 'settled' and emerged as tumours. Then it will be decided if an op is still possible! Chemo is no longer an option as I had a mighty big reaction to it over Christmas!

The rationale behind the doctors advice is so that I'm not operated on now, only to find more tumours in a few months. I'm also hoping to have my stoma reversed at the same time - 2 for the price of one! But obviously, this all depends on the next scan results!

So in the mean time, I'm going back to work! I've already discussed a phased return with the head teacher, but it looks like I'm back in the classroom during week one! Hey, if I can deal with  bowel cancer, 30 kids ain't going to faze me! (Hollow laugh!!!)   

Maybe Simon and I can compare our 'Back to work' exploits?

I wish you well with your scan next week, Nicola. Let us know how you get on.

Take care, and keep up the good work! (Just practising for my 'back to work' )  

Love and hugs, Jo xx

Hi Nicola, Simon and Friends

Sorry it's a while since my last update.  I see you are both wondering about me which is really comforting to know and kinda telepathic Simon that I was trying to eat some Butterscotch Angel Delight as I read your post (more on that later!). 

I'm plodding along OK I think, but a couple more hiccups since I last posted.  Last weekend (why is it always the weekend?) I had another bout of sickness. We thought it was glut-related initially, but then it appeared to be getting worse as I tried to take my feeds so a change of of plan.  I tell a lie, I now recall it started Thursday evening when I threw up projectile-style en route to my GP to try and get my pain-relief increased.  I ended up being sick all Thursday evening and going back to hospital to see my specialist nurse on the Friday.  She took bloods which all tested fine, i.e. no dehydration this time, and things seemed to settle during the 3-4 hours I was at the hospital.  She was fairly certain like me that it was to do with the glut in my throat so just reminded me to keep sipping water and upped my MST.  Howewever I had to give up halfway through my night feed due to nausea setting in again.  Back to hospital on Saturday to be given a prescription for a new anti-emetic, Ondansetron (what a pallaver that was, satellite oncology pharmacy didn't have it in stock, and main hospital pharmacy was closed.  Went to the two big pharmacies at home in Perth to find neither had it.  Eventually got a generic form of the same drug at Superdrug and they ordered in the branded version to collect Monday.  All this involved hanging around for ages in the cold and wet when I really just felt like being tucked up in bed - not a happy bunny)!  So the pills worked, but then I had an allergic reaction - swollen face, slitty eyes, scaley rash on face and hives on arms and legs!  To GP on Monday for anti-histamine, which didn't seem to be doing anything by Wednesday so back again for steroid creams for my face and eyes and thankfully it has all settled now.  Sickness has also settled by increasing my regular one (Metoclopramide) and taking my previous back-up of Levomepromazine.  Other than that, you are right Nicola, I seem to spend a lot of time sleeping.  Almost every time I pick up a book or a magazine I seem to drop off after a couple of paragraphs!

I've also been trying little tastes of food but making no progress as yet (2 weeks since end of treatment so probably a bit early yet).  I had a sip of my husband's latte the other day and I could taste it was coffee, which was wonderful, but far too nippy on swallowing, which has been the same for everything else I've tried - ice cream, chicken soup, milk pudding.  As mentioned above I just made up some Angel Delight and while it tasted just as it should (I remember the last time I tried it during treatment I couldn't taste it much at all) it nipped like mad too.  I've just noticed that there are white spots on my tongue again, so am thinking I may need to go back to GP for more thrush-medicine! 

Nicola - really glad to hear that your team are pleased with your progress.    I've just re-read your post about granulation in the PEG area which reminded me I've also had an infection in mine (on antibiotics) and two nights ago my tube split between the two bungs at the top, so it was completely unusable and I couldn't take any feed that night.  Fortunately the district nurses sorted me out next day and even gave me a spare (the hospital are very frugal by comparison)!.   Also really pleased to hear it's all systems go for your Eurodisney trip and I'm positive that will help with your recovery process.  Very best of luck for your scan next week.

Simon - I will get to enjoy that Butterscotch A. D. one of those days!  I'm also taking note of your latest foodie recommendations for when my time comes. Can you recall how soon after end of treatment you were eating those?  Also best of luck with those biopsy results.  You mention your ulcers still have bad days as well as good.  Are you still taking Difflam (and anything else?) for those?

Jo - good to get your update as well and delighted to see you still have your sense of humour despite everything (something I am constantly being reminded is important). Funnily enough I was just trying to write a little ditty about one of my darker days of sickness when the 'fifty shades' reference also cropped up!  Very best of luck for your return to work and your next round of scans in April.

I'm due back to see my team on 26th February so will update you then. 

Love and best wishes to you all.

Irene x

Hi Nicola, Simon and Friends

Sorry it's a while since my last update.  I see you are both wondering about me which is really comforting to know and kinda telepathic Simon that I was trying to eat some Butterscotch Angel Delight as I read your post (more on that later!). 

I'm plodding along OK I think, but a couple more hiccups since I last posted.  Last weekend (why is it always the weekend?) I had another bout of sickness. We thought it was glut-related initially, but then it appeared to be getting worse as I tried to take my feeds so a change of of plan.  I tell a lie, I now recall it started Thursday evening when I threw up projectile-style en route to my GP to try and get my pain-relief increased.  I ended up being sick all Thursday evening and going back to hospital to see my specialist nurse on the Friday.  She took bloods which all tested fine, i.e. no dehydration this time, and things seemed to settle during the 3-4 hours I was at the hospital.  She was fairly certain like me that it was to do with the glut in my throat so just reminded me to keep sipping water and upped my MST.  Howewever I had to give up halfway through my night feed due to nausea setting in again.  Back to hospital on Saturday to be given a prescription for a new anti-emetic, Ondansetron (what a pallaver that was, satellite oncology pharmacy didn't have it in stock, and main hospital pharmacy was closed.  Went to the two big pharmacies at home in Perth to find neither had it.  Eventually got a generic form of the same drug at Superdrug and they ordered in the branded version to collect Monday.  All this involved hanging around for ages in the cold and wet when I really just felt like being tucked up in bed - not a happy bunny)!  So the pills worked, but then I had an allergic reaction - swollen face, slitty eyes, scaley rash on face and hives on arms and legs!  To GP on Monday for anti-histamine, which didn't seem to be doing anything by Wednesday so back again for steroid creams for my face and eyes and thankfully it has all settled now.  Sickness has also settled by increasing my regular one (Metoclopramide) and taking my previous back-up of Levomepromazine.  Other than that, you are right Nicola, I seem to spend a lot of time sleeping.  Almost every time I pick up a book or a magazine I seem to drop off after a couple of paragraphs!

I've also been trying little tastes of food but making no progress as yet (2 weeks since end of treatment so probably a bit early yet).  I had a sip of my husband's latte the other day and I could taste it was coffee, which was wonderful, but far too nippy on swallowing, which has been the same for everything else I've tried - ice cream, chicken soup, milk pudding.  As mentioned above I just made up some Angel Delight and while it tasted just as it should (I remember the last time I tried it during treatment I couldn't taste it much at all) it nipped like mad too.  I've just noticed that there are white spots on my tongue again, so am thinking I may need to go back to GP for more thrush-medicine! 

Nicola - really glad to hear that your team are pleased with your progress.    I've just re-read your post about granulation in the PEG area which reminded me I've also had an infection in mine (on antibiotics) and two nights ago my tube split between the two bungs at the top, so it was completely unusable and I couldn't take any feed that night.  Fortunately the district nurses sorted me out next day and even gave me a spare (the hospital are very frugal by comparison)!.   Also really pleased to hear it's all systems go for your Eurodisney trip and I'm positive that will help with your recovery process.  Very best of luck for your scan next week.

Simon - I will get to enjoy that Butterscotch A. D. one of those days!  I'm also taking note of your latest foodie recommendations for when my time comes. Can you recall how soon after end of treatment you were eating those?  Also best of luck with those biopsy results.  You mention your ulcers still have bad days as well as good.  Are you still taking Difflam (and anything else?) for those?

Jo - good to get your update as well and delighted to see you still have your sense of humour despite everything (something I am constantly being reminded is important). Funnily enough I was just trying to write a little ditty about one of my darker days of sickness when the 'fifty shades' reference also cropped up!  Very best of luck for your return to work and your next round of scans in April.

I'm due back to see my team on 26th February so will update you then. 

Love and best wishes to you all.

Irene x

Hi Irene, and welcome back - we were worried about you.......

You keep that Butterscotch Angel Delight at the ready - it's the future!

Seriously, in answer to your query about when I started to take food. My treatment finished on 4th Sept and I was unable to talk for around two or three weeks. I was solely PEG feeding until mid-October when I started to swallow water and really soft food such as jelly or custard. From memory that was about all I could manage for 2 or 3 weeks before I slowly progressed onto mashed potato and well-boiled soft veg. The main problem that stopped me eating was a very sore throat and mouth.

In relation to my ongoing battle with ulcers - I use Difflam every day and when things are really bad I dig into my reserve of Oramorph. The oncologist was horrified when I told him that I took Oramorph to deal with the ulcer pain, but then it's not him with an ulcer the size of a one pence coin on his tongue. Also, my wife tells me that I'm a lot more cheerful once I've had a shot of Oramorph!

I hope that you manage to keep the sickness at bay. The tendency to sleep a lot is not necessarily a bad thing in my view - I think that the body heals better when we're asleep and at least the time passes more quickly.

Take care

Simon xx     

Hi guys

Keep going - you are all doing really well!

Simon recovered quicker than I did. I finished treatment in the middle of May and I didn't eat until July! I can remember lying in bed in early July feeling as sick as a dog and not eating. I desperately wanted to be well for my friends wedding at the end of July and thought there was no way. However, by the time of the wedding, I was eating and I had a great time dancing the night away (even with my PEG!).

I agree that, if you feel tired (which I found to be more like jet lag!), you need to listen to your body and sleep. I know I've said it before but, once I started to improve, it happened pretty quickly.

Debbie

Hi everyone,

Just when I thought things were going ok, something else crops up....

I had my MRI scan yesterday. All fine, it took about 20 minutes and as I left I was told the results would be passed onto my consultant within 7-10 days. I already have an appointment arranged with my oncologist on 17th March for a follow up and I understood he would also discuss my scan results with me then. I didn't mind waiting until then for the results as everyone at the clinic is very confident that no cancer will be detected. After all, my treatment was the "belt and braces" following removal of the tumour during my tongue operation back in September so the treatment was a "just incase" scenario as they couldn't be sure if any cancer cells might have jumped further into the tongue and a scan wouldn't pick them up anyway as they would be so small.

Today I get a phone call from one of the head and neck nurses to say they want to see me at the dental clinic on Tuesday to discuss my scan results. I have immediately panicked and am thinking the worst as this is very sudden and less than 24 hours after finishing the MRI scan. After fretting for about an hour I call the nurse back (my usual head and neck nurse is not there today) and I ask if it's possible to speak to somebody today about my scan as waiting all weekend is now going to be traumatic. He agrees that it is rather quick to get results and want to discuss them and that it's likely something has been picked up from the scan for me to be called into the clinic so fast but he assures me he knows nothing. I have told him that four days is a long time to wait now when I'm obviously very worried so he kindly offered to speak to my Oncologist.

The nurse then called me back to say he has spoken to my Oncologist who has said none of them have yet seen the scan but the radiographer is concerned about something and he wants to discuss it further with my surgeon, consultant and oncologist at their weekly meeting on Tuesday morning. They will then see me at the usual Tuesday afternoon clinic to discuss with me. It seems obvious something has been picked up and I am now at my wits end. How on earth am I going to get though the weekend? This was not part of the plan! All I keep thinking is that there is another tumour somewhere, or that it has spread, or perhaps a new cancer has been found somewhere else in my body, I don't know what else to think. I have been so brave all the way through, I've dealt with so much but what if it's all been for nothing? What if I have to go through it all again? What if I'm not so lucky second time around? I've been making plans for a holiday and deciding how I will celebrate being cancer free, now I think I've been to cocky about it and should have waited until I knew for sure. I don't think I could face it all again. Just when my life seemed to be getting back on track and I'm beginning to feel better, I just want to get back to normal.

It was good to hear back from all of you.

Irene - you are being very brave in sipping coffee and tasting things. I stayed well clear of everything and completely relied on my tube for about 6 weeks after treatment ended. It sounds as if you are having bad luck like me with your tube! I used to worry about it splitting, how did they rectify it? What a pain in the backside for you! It also sounds as if you've had a very hard time with the sickness, you poor thing and I suppose it hasn't helped much with trying to maintain your weight. How are you finding your phlegm/saliva? I was constantly spitting for about three weeks after treatment ended! I hope you've seen the end of the sickness now and can concentrate on feeling better.

Simon - how did your appointment go on Wednesday? Any joy with finding out much more about your swollen nodes? Your diet seems to be moving on well. I wouldn't have considered breadcrumbs as I would have thought that would be quite rough on your throat but good to hear you are managing such things. I have been managing sloppy ready brek, yoghurts (the Muller fruit corner ones)  custard, soup, ice cream and jelly with double pouring cream. I've also been having milky coffees too and cups of tea. All seems to be going down very well, the only thing stopping me from moving on to more solid foods is my extremely dry throat. It's also still fairly painful. You are right in comparing ourselves to a few weeks ago rather than days, I felt my improvement is slow but when I look at it like that, there was no way I would have been trying all of these different things a few weeks ago.

Jo - wow you are returning to work! Good for you! That's a big step forward, I hope it goes smoothly and you don't over do it. Your diet sounds good, similar to mine although it's very difficult trying to put on weight isn't it. Most people would love to lose a few pounds whilst we have free rein to gain a fair few. Be careful what you wish for - is what I say to my friends when they complain about their weight!! The very best of luck to you with your next scans, I hope it can all be as well as expected. You sound very light hearted, even though the news must have been a shock.  I hope that returning to work will help keep you focused and positive until April.

So now I face four days of worry and anxiety. Not really sure what to do with myself. How could the treatment not have worked? They were sure they got it all during the operation. It can only mean that there is something new and I'm not convinced that the oncologist knows nothing about the scan yet, I just don't think he wanted to say anything over the phone. This takes me right back to when I first found out, the waiting was truly the worst bit. I will of course update you all when I can.

Speak soon xx

Hi Nicola,

I really feel for you! I know saying "Don't worry" is pointless.

Try to keep your mind occupied, but don't wear yourself out physically! I'm sure your little girl will offer a welcome distraction!

Try not to let your thoughts run away with you (easier said than done I know! It's one of the reasons I'm going back to work!)

Please let us know how you get on.

Sending you a big, supportive hug, Jo xx

p.s. Hugs to Simon, Deb and Irene too! xx

Oh Nicola,

I am so gutted about your news. You are making such excellent progress and I can imagine how you must be feeling. I won't waste time by telling you not to worry - I know that that is inevitable. What I would say is that scans tend to give a very rough view - of course I'm not an expert and I'm not qualified to give an informed opinion, but I wouldn't mind betting that scans set off many false alarms and that the ratio of occasions when they raise a concern that is later found to be non-consequential is high. You wouldn't have been having a scan if you weren't progressing down this particular road - the fact that you had a scan put you in the frame for a result that MAY or MAY NOT lead to the discovery of something significant. I think that the chances are that once further investigation is carried out it will likely be that whatever has caused the concern turns out to be nothing too serious. I genuinely believe this. I know that you going to fret and worry but please do try to keep an open mind.

Leading on from the above, if by chance it does turn out to be something serious then at least it will have been caught very early which has to be good news.

I will be keeping fingers, toes and everything else crossed for you.

You asked about my consultation on Wednesday - well the consultant examined my groin lymph nodes and said that they were swollen to around 1cm which is a borderline for concern but by no means a certain indicator of something serious (size does matter in this instance it seems). The fact that the swellings are accompanied by night-sweats and itching does mean that further investigation is needed. Additionally, my latest blood test shows that my white and red cell counts have gone low again which is another factor that indicates something is amiss. I pressed him about the chances of this being lymphoma and he wouldn't be drawn either way except to say that lymphoma is very rare. I told him that tongue cancer is rare yet I managed to get that without too much trouble. I am now to have a bone marrow biopsy next Thursday with a return visit to the consultant the following Wednesday to get the result. If matters are still inconclusive after that then I am to have a PET scan. I'm trying to keep an open mind, as must you, Nicola!

Please do try to have a low-stress weekend. We're all thinking of you and we're all here for you. Please promise to update here as soon as there is any news.

Take care and please, please keep us posted.

Simon XX         

Hi

Nicola and Simon - this cancer roller coaster is a rocky old ride isn't it? I remember one of my ovaries "lit up" on one scan but when they did further investigations it was nothing fortunately. It is so scarey though.

Please try and stay positive both of you.

Debbie

Thank you Jo, Simon & Debbie. I appreciate your replies and your kind words. I suppose we are in similar situations (or have been) in that we are having to wait for further news. It's such a worrying time and I really don't think the consultants etc really understand how worrying it is.

Debbie - following your MRI scan, were you rushed back in for a discussion of the results about their findings? I'm convinced mine has picked up something bad due to the timescales involved or they could have just told me at my next scheduled appointment.

Simon, more waiting around for you then too. It would indeed be very very bad luck to have a second cancer after all you have been through, that's how I'm trying to look at it for me too. I hope your bone marrow biopsy goes well this week and I'm glad they are looking into this for you.

Jo - I suppose you know only too well how the waiting game feels and I admire you for going back to work.

Back to my rubbish weekend of worrying. Speak soon xx

Hi Nicola

The scan on my ovary was an ultrasound and the person who did it told me there and then that it was ok.

However, after my first MRI (when they discovered I had tonsil cancer and a brain tumour) they didn't call me back early so I wandered in thinking the result was going to be good! Therefore I don't think you can tell either way. It may be that they've called you back early so you don't worry for too long after all you've been through.

I've got everything crossed for you!

Xx

Dear Friends

Nicola, my heart really goes out to you.  As the others have said, please just try to keep an open mind and keep yourself as busy/occupied as possible without overdoing things!  I remember my imagination working overtime when I was waiting for my scan results back at the start .  Now that my 4 week check-up is on the horizon (Wednesday) I'm starting to get all those niggly "what ifs" floating to the surface.  I am keeping everything very tightly crossed for you and sincerely hope there is no further bad news, as you have already gone through so much and coped with it amazingly well.  Things have settled down for me again, although my latest problem is a continually bunged up nose - neither nebuliser, Olbas inhaler nor steaming bath with menthol crystals is of much help. I don't actually have the Cold, it's just that my nostrils seem constantly blocked and of course it's always worst at night. Most days I wake up with mouth drier than the bottom of a budgie's cage because I've been breathing through my mouth most of the time!

Simon, likewise, please try and stay positive mate and it goes without saying that we are with you all the way and hoping for good news.

Jo - thanks for the hug - sending one right back to you, Nicola, Simon and Debbie.  Very best wishes for your return to work.

Debbie - thanks for your words of encouragement and delighted to hear that you enjoyed your friend's wedding, both eating and dancing the night way.  I intend to do likewise!

Best wishes to you all.

Love Irene x

Nicola, sorry, I just realised you asked me a couple of questions which I forgot to answer.  The split in my tube was in between the two bungs (the threaded one and the purple one) so it was part of the 'Y' connector, which they replaced 'in a oner' as they had done before.  I've no idea what would happen if he tube split further up other than having to replace it completely and neither of us would want that experience!!  The phlegm has been pretty intermittent with me.  Some days it seems non-stop and others not so constant.  I don't want to tempt fate, but apart from the allergy and the recurrent sickness problems, I'm thinking that my 2-3 weeks since end of treatment haven't been quite as horrendous as I had braced myself to expect.  I just hope this nasal congestion goes away soon and I will just try and be more patient re the return to eating as it sounds like most folks have taken longer than I had been expecting.  I x