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.

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

Hi Nicola,

Just a line to say good luck for later today. We're all thinking of you and we've all got everything crossed.

I've got the dentist today because when checking my latest ulcer at the weekend I spotted a new tooth growing sideways out of my gum under a back wisdom tooth. You couldn't make it up!

Good luck, Nicola - let us know how it goes.

Simon  xx

Thanks all for your encouraging messages.

I've been to the dental hospital this afternoon to see my consultant and oncologist and turns out the Radiographer was concerned about my "flap" on my tongue (the reconstructed part). It is still hugely swollen since the operation I had to remove six of my teeth back in October and the swelling has never reduced but on the MRI scan, it looked to the Radiographer as if there might have been another tumour (the Radiographer obviously didn't realise my "flap" was so swollen). So he alerted my consultant of this which is why they wanted to get me back in quickly so they could take a look in my mouth. As soon as they looked at my tongue, they were both certain it was nothing to worry about. I have to go back next week for a further check up of my mouth and tongue and possibly an ultra sound to double check that there is nothing lurking in the tongue but as far as they are concerned all is as well as can be expected.

This is a massive relief, I've had a horrendous weekend of anxiety and it all just came out in floods of tears today at the clinic! I think it was a build up of stress and worry from the last four days! So I'm not going to celebrate just yet, I'll wait until my check up next week, but fingers crossed I can then comfortably believe that the cancer is gone.

Simon - I hope your biopsy goes well this week and keep us posted of the results. How did you get on at the dentist?

Irene - sounds like you are getting on so well and it's only natural to worry when you are due a check up after everything you've been through. I think the occasional worry is something we will have to learn to live with but over time, hopefully the worries will occur to us less often. There is no other worry like it is there, when dealing with cancer. I reckon I have a few more grey hairs this week!

I'm just about to try some semi sold food for the first time this evening. My mum has made a casserole and I'm going to give it a go. I'll ensure I have plenty of gravy and mash up the food so I hope it will be ok if I take some pain killers before hand.

Speak soon,

Nicola xx

Jo,

Ever so sorry, I relished I didn't answer your question about what an over granulation of skin is. It's where my skin is trying to heal over the hole in my tummy, where the feeding tube is. Obviously the skin can't heal as there is a tube in its way so this growth of skin closes around the tube, then turns into a horrible big black scab! Not very nice! The scab is so big and solid, it prevents me from spinning my peg and is also very sore! Eventually the scab falls off with the help of some steroid cream but two days later, another one appears. I'm told to keep expecting it to happen until the tube is out which is going to be at least another month or so, so it's not very glamorous but not a lot I can do about it. It's one of the less irritating of all the side effects I've had so I'm not going to complain too much but I'll definitely be glad to see the back of this feeding tube!

I hope all is well with you and you are all prepared for your return to work. Thank you for thinking of me whilst I've been distressed these last few days and sending you a hug too! Xx

Hi Nicola,Great to read your latest post! It's such a pity you had so much worry over the weekend before your appointment. No wonder the flood gates opened at clinic. Like you said, the build up of stress and worry! Bless you!

I'm trying to 'train' myself not to worry about things, but it's going about as well as my lion taming training! (easier said than done!)

Hope you manage to eat some of your mum's casserole . . . Enjoy!

Take care and let us know how your check up goes next week, Hugs to you, Jo xx

Our posts have crossed! Thanks for the info on granulation. I guessed it was something like that. Glad the steroid cream helps!

I've had an annoying sore bit on my surgical wound where one of the 'dissolving' stitches just didn't dissolve! It was poking out of my tummy like a cat's whisker! Very bizaare. Thankfully, nearly 6 months on, it's on the mend!

Hi Nicola,Great to read your latest post! It's such a pity you had so much worry over the weekend before your appointment. No wonder the flood gates opened at clinic. Like you said, the build up of stress and worry! Bless you!

I'm trying to 'train' myself not to worry about things, but it's going about as well as my lion taming training! (easier said than done!)

Hope you manage to eat some of your mum's casserole . . . Enjoy!

Take care and let us know how your check up goes next week, Hugs to you, Jo xx

Our posts have crossed! Thanks for the info on granulation. I guessed it was something like that. Glad the steroid cream helps!

I've had an annoying sore bit on my surgical wound where one of the 'dissolving' stitches just didn't dissolve! It was poking out of my tummy like a cat's whisker! Very bizaare. Thankfully, nearly 6 months on, it's on the mend!

Hi Nicola,

Phew! That's really good news. It's such a shame that you had to go through all that worry though. These ups and downs do seem to be par for the course don't they? Your news has really cheered me up.

My trip to the dentist was interesting - apparently I've got excess 'cementum' suddenly growing out of the root of a wisdom tooth. It can be caused by trauma apparently. He broke a bit off and gave it to me in a plastic bag in order that I can give it to the oncologist next  week. It looks like a small piece of bone. He says that the oncologist should refer me to the hospital dentist to get the issue dealt with. Strange but true!

Next stop is the bone marrow test on Thursday. Life is one big adventure.

I hope that your meal went well this evening. I've found that anything with tomato in makes my tongue sore - I mention it just in case the same is true for you.

Take care.

Simon xx

Hi Simon,

I hope your biopsy goes well/has gone well today. I googled it to have a read of what it involves, hopefully it sounds worse than it actually is. I read that there are two types of biopsy, aspiration or trephine, which did you have? I hope it wasn't too uncomfortable. I know the biopsy procedure is a small thing compared to all you've already been through but it's still something else to deal with isn't it? I really hope the results are what we are all hoping for, but I'm sure you're going to be anxious over the coming week now. I wish these things didn't take so long!

That was surprising news about your tooth! I read a story on line about a man named Paul who had very similar treatment to us for tongue cancer and it sounds like he had a similar issue with his teeth where some broke away. I would say I will look out for this too but I don't have any teeth left on the "bad" side of my mouth as they were all extracted. Maybe it was a good thing after all! Incase you're interested, if you google "Paul's story tongue cancer" you should easily find it on the oral cancer foundation page. He also talks about some itchy bumps following treatment. His story was one of the first things I read when I first found out about my own tongue cancer.

Thanks for your previous message. It is a shame I had to worry so much and I'm still a little nervous about next weeks appointment, but less anxious than I was. I hope the recovery of today's procedure isn't too bad. Speak soon,

Nicola xx

Hi Nicola,

The bone marrow test wasn't too bad. A bit painful afterwards but no worse than a trip to the dentist. I had both tests done at the same time. They took some samples of bone marrow which they placed on 5 or 6 glass slides and also removed a small a piece of bone. Apparently only some of the tests will be ready for my appointment next Wednesday as the bone sample is slowly dissolved in fluid over a period of time.

Thanks for highlighting 'Pauls Story'. I had stumbled upon that some time ago but it was good to go back a remind myself of his experiences. It is encouraging that he seemed to experience some recovery of his saliva glands. I had forgotten about the itchy bumps he experienced, maybe that's what I have been having. I hope so because they seem less sinister than some of the other possibilities.

Anyway, you and I are playing the waiting game now. My next appointments are next Wednesday for the bone marrow results and then Thursday for my monthly oncologist check up.

I hope that you have a good weekend and please try not to worry about things. I stumbled across a YouTube video that discussed head and neck cancer (search for 'head and neck cancer' on the YouTube site - I can't post the link here) - it highlighted the fact that cure rates are very high and recurrence rates are low.

Take care, Nicola.

Simon xx 

Good news today! I'm officially in remission!

I had a check up today and my consultant decided not to do the ultrasound of my tongue. Him and the surgeon had another discussion about my scan and are happy that there is nothing to be concerned about. I will however be having an ultrasound of my neck at my next check up in one months time. This is purely for a baseline so that they have something to compare against in the future should they need to.

Needless to say today has been a day of celebrations! I had my first alcoholic drink since before the operation last September - a glass of champagne! I could actually taste it too. I'm going to attempt a pancake later as it's Shrove Tuesday!

It's been seven months of hell and today marks the end. It's been an emotional day but a day I'll never forget. Thank you to all of you for your amazing support and understanding throughout, you really did all help me through my darkest days.

Simon, I wish you luck for tomorrow's biopsy result, but I'm feeling positive for you. Please let us know how you get on.

Much love,

Nicola xx

That is such good news Nicola, congratulations and well done. We said you'd get there and you have,

hugs

Annabel. xx

Hi Nicola,

Thanks alot for the information. I am very happy for your remission! I hope my mom can go through all these asap. Please take care of yourself.

Ping

Hi Nicola,

Absolutely brilliant news. Well done. I'm well chuffed.

Simon xx

Hi Nichola

I'm so happy for you, you good news is so very

Positive, you deserve it after what you have been

Through. Hugs Hun and enjoy the celebrations. X

Hi Nicola,

Just an update - I can almost match your good news. There was no bad news for me. The haematologist said that although he didn't have all the bone marrow results back, the one that he did have seemed to indicate that my system is fighting something - he was unable to say what though. I offered the suggestion that although my chemo and radiotherapy finished 6 mouths ago (is it that long already!) I could still be recovering from that - he thought that this was a possibility. I'm now just awaiting a PET scan and a lymph node biopsy sometime in the next couple of weeks. The important thing is that there was no bad news.

Me thinks that 2014 will be better for us than 2013!

Monthly check up is tomorrow when I will entertain the oncologist with my sideways growing tooth/cementum.

Take care.

Simon xx 

Hi Nicola,

Just caught up with your thread and can't tell you how thrilled I was to read your news!

No wonder you treated yourself to a cheeky glass of Champagne!

Keep in touch though, won't you?

Simon, good to read your part too! A good couple of days for you both!

Love and hugs to all, Jo xx