Just an update on my situation - I met my doctor yesterday and also my cancer nurse and I now feel confident to leave my life in their hands as both were very nice and answered all of my questions with great detail.

My MRI and CT scans are tomorrow and I will receive my results next week on Tuesday. I can't bare the wait but I have no choice.  I am absolutely PRAYING that the scans don't pick up anything nasty other than what we already know.

My doctor told me that my tumour is at the back of my tongue, on the side, (I can't see it) and I will have surgery to remove it and hopefully less than half of my tongue will be removed. They won't know until the time of the operation if they will need to reconstruct my tongue with a skin graft from my arm.  They will also do a double neck dissection to remove all lymph nodes to reduce that chance of cancer returning however, the cancer may well have spread to my lymph nodes already, the scans will tell me this.  All of this will result in a 4 day stay in hospital. Radiation is likely but not certain yet but my doctor anticipates it will take a month for me to learn to swallow, eat and speak following the operation but possibly longer if reconstruction is involved.

Whilst at the hospital yesterday I mentioned again my sore throat and my ear and neck pain. I was assured that the ear and neck pain are "referred pain" as all are connected but they looked down my throat with a camera.  This procedure was just awful! I'm no wimp and am fully aware that I have a lot of discomfort and pain to face over the coming weeks and months but having the camera up my nose was very uncomfortable! I'm glad it is now done and the doctor said she couldn't see anything that shouldn't be there but she didn't sound confident and wouldn't look me in the eye when saying it so for some reason, my mind has still not been put at rest about my throat.

My main doctor always sounds so positive and upbeat which is reassuring however, when I had my first appointment at the ENT clinic about the lump on my tongue a few weeks ago, he was very confident it was just tongue trauma. He mentioned this yesterday and admitted he got it wrong but when he talked about treatment I find it hard to believe in his confidence and positivity.  What if he is wrong again? The other doctor who did the camera procedure yesterday always sounds less confident so it's hard to read them.

However, my doctor has said I am "special" to them already as they really have no idea why I have this cancer. They say I'm too young, especially as I have never smoked and rarely drink. They don't even believe it is associated to HPV due to the location of the lump but I will be tested for this anyway. So they are a little baffled!

So that's how it is at the moment.  The waiting is awful and I'm not sure how to deal with the "what ifs" going around in my mind. I'm expecting the cancer to have spread to my lymph nodes but if it's anymore than that I know that I will have great difficulty trying to stay positive. I have a two year old daughter who is at the front of my mind throughout this and I will do whatever it takes to stay on earth with her. 

I hope my information will be of use to others in similar situations and I will keep updating as I know more.

Speak soon everyone,

Nicola

Hi again Nicola,

I have just read your update and I have to admit to feeling more and more nervous for you the further I went.

I have an idea of how you felt having a camera fed through your nose as, when I was about 18 I had a cycling accident and underwent the first of three operations on my nose.  Two days after the first op' the nurse arrived to remove the packing which I didn't realize was a long length of gauze that had been packed into my nose almost to the back of my throat. Very painful and eye watering.

The confusion must be so difficult with some people seeming confident about your case and others who can't seem to look you in the eye.  There is every chance that the ones who don't look you in the eye have just trained themselves that way so as not to become emotionally involved with patients.  Then again I may be talking nonsense, after all I am no expert.

I will be keeping my fingers and toes crossed for you next Tuesday.

Good luck.

Garf.

Hi Colin,

Thanks for this tip! They seem to think I'll be up and about after about three days, I hope they are right. I've been at the hospital all day today. I had five appointments in total, one after the other, I was at the hospital from 10:30am until 5:30pm and now feel exhausted! I had my pre-op assessment, a meeting with my cancer nurses and speech therapist, a meeting with the surgeons, a dentist appointment and a meeting with the Head and Neck 5000 research project coordinator.

Turns out I'm having one of my wisdom teeth removed during my operation. This alarmed me but they say its got to come out anyway so best to do it at the same time as everything else.  I've also been given some of those nutrition drinks to drink before the op, as Meerkat mentioned. I have to drink three a day for three days then two on the morning of the op. The surgeons went into more detail about the risks of surgery and about the skins grafts. The risks are a droopy mouth on one side as they may damage the nerve in my neck when taking out the lymph nodes and also the nerve to my shoulder which can cause problems with the shoulder muscles. This worries me a little. The grafts will be from my arm to rebuild my tongue then from my tummy to cover my arm. My tongue will be two toned in colour due to the different coloured flesh of my arm to my tongue!

Just want to get on with it now but I have over a week to wait. I plan to keep busy and not think too much about what's to come, I will face it head on at the time. I'm still eating well, lots of yummy food whilst I can and everyone is wanting to take me out to lunch before my operation!

I will post again before my op, everyone from here are always in my thoughts, the support I've gained from this site alone has been wonderful.

Speak soon,

Nicola

Hi Nicola,

Have just seen your latest post to Colin. Wow! What a day you had yesterday! It sounded as if you were in the hospital longer than some of the staff who work there! No wonder you're exhausted. Probably physically and mentally with all the information you're processing.

I see the hospital team have said you'll be up and about after 3 days. The nurse at my pre-op assessment said pretty much the same thing. . . Up and walking about asap after the op and walking to markers on the ward corridors by day two, further by day 3 etc! Hope I'm not expected to do a lap of the car park by day 4!! I know it's all to do with DVT, just hope our bodies perform eh?

It's good that you're planning to keep busy. That's my 'coping' mechanism too! My partner gets exasperated as I'm beavering about doing 'little jobs' all the time! (I think his exasperation is two fold - 1. he says I should be resting and 2. I have this habit of starting a job then moving onto something else and so on, resulting in loads of things on the go with none being completed!) they will be! No doubt your little girl will keep you busy too, in a good way.

Glad you're eating lots! As you know, I'm following your example and I've reached the heady (should that be heavy) heights of 8 stone 3 pounds!! (Eating lots is tricky for me as my normal preferred eating pattern is 5 small meals a day (my partner likes 3 hefty meals a day) so I try to sneak a couple of extra snacks in through the day. Enjoy your lunches out!!

Do you know how long your surgery will take? It sounds as if there are a lot of procedures within one operation.

Your op is a few days before mine so I'm not sure I'll see your post-op post as our hospital times may overlap (don't think there'll be wifi in the hospital and my phone is archaic (just calls and texts!) but I'll look you up as soon as I'm back in the land of technology to see how you're doing.

I do hope you don't mind my ramblings. . . I think I write like I speak! Probably a good job I'm 'virtual'

Take care of yourself, Nicola

Best wishes, Meerkat (Jo) xx

Hi Nicola,

If you are having you op to-morrow I hope all will go well for you. Look upon losing your

wisdom tooth as a bonus.  I lost part of my jawbone. The fact I had a bridge fitted six

months previously at a cost of 2,400 euros made it more painful, financially that is.

I guess you will have to be fed by tube until your tongue graft has healed, so the

tube is definitely a good thing. I wonder if anyone else on this site has had a tongue rebuilt.

I'll be thinking of you.

Colin

Hi Nicola

Ive just read your posts and I wanted to wish you good luck. It is so hard waiting.

I was diagnosed with cancer of the tonsil and a brain tumour in february. After chemo and radio, I had a clear scan in relation to the cancer last month. The treatment was pretty grim in parts but you get through it. Like you, I've got kids and have never smoked or drunk to excess. I'm a bit older (45) but it has all been a massive shock.

I'm now waiting for a brain op which will probably be early next year.

Make sure you accept all offers of help so you can rest. I didn't see anyone apart from immediate family for two months because I couldn't speak and felt so rough due to the chemo but I kept in touch with my friends by text. I know they felt helpless and wanted to help.

You will get through this. It too six months but I feel fine now - just nervous about the next op.

Take care.

Debbie

Hi Nicola,

Just wanted to come on and wish you well in your operation. Will be thinking about you and your little girl.

Take all the help and support you are offered.

will be here when you get back.

Hugs and best wishes

Annabel.

Hiya Nicola, I've followed your posts on here as my mum was diagnosed with base of tongue cancer a few weeks ago, she isn't having an operation, her situtaiuon is different to yours... the cancer has spread to both sides of her neck. she's doing ok after having her tonsils removed and a neck dissection (she found that bit easier than having the tonsils removed) he's just completed 6 weeks of RT with weekly chemo.

i just wanted to say (as the others have) your attitude and approach to this is so positive .. so  keep fighting and we'll be thinking of you xx

Andrea

Hi Nicola,

You'll get this post when your surgery has been done, but just wanted to say I was thinking about you!

I hope you're recovery is speedy and as pain free as it can be. I'll not be logging after Tuesday (op day for me) so I'll have to catch up with your progress in a few weeks time. Take care, Meerkat (Jo) x

Hi, I'm sorry to hear ur story. My cousin had a tumor on hus tongue bout 12 yrs ago now , they opened him up down his chin & a bit below , opened his bottem jaw in haf & took it out this way. He was told he would never speak again & would need to learn sign language. Horrible to hear I no. But 12 yrs later he's fine. Apart from the scar down his chin. & slurs his speech a bit ,(was worse at the start but barley noticible now.. yes he did spk again & lost half his tongue but recovered fully to live a normal life :). Hoping & preying for u . Xx

So sorry to hear about your tongue cancer.   If it helps then I am a tongue cancer servivor.  i had a lump on my  tougue and was removed ten years ago.   I was devasted because after cutting the tip of my tongue I could not pronounce the words properly for two years and felt my world was coming to an end.   I did not give up so soon after after the surgery when I got enough strength I started physical exercising which I had done little of it in my life and started increasing the time on my physical exercise.   I learned cycling and now cycle 20 miles in a day and also walk 2 to 3 miles a day if the weather permits.   I never thought I was going to allow my cancer to take over my life and it did not.   I do have ups and downs but hey that is nothing compared to difficult time I had for the first year.   My advise to any cancer patient is to never give up and do a lot of xercise.   I also had an exceptionally good surgeon who supported me and is supporting me in my not so good time.   I do not know where you live but always happy to help.  I had lymph node removed but the scar is not visible anymore.   I hope this helps

My husband was diagnosed a few weeks ago, had surgery removing piece of tongue and reconstruction of the tongue. They also removed neck limph nodes. Dr feels all cancer in tongue was removed due to the margins. We are now embarking on the next part of the treatment whether it be radiation or chemo... Can you give me an idea of what treatment you had and are there any lingering issues???

My husband was diagnosed a few weeks ago, had surgery removing piece of tongue and reconstruction of the tongue. They also removed neck limph nodes. Dr feels all cancer in tongue was removed due to the margins. We are now embarking on the next part of the treatment whether it be radiation or chemo... Can you give me an idea of what treatment you had and are there any lingering issues???

Hi BACMMO,

Sorry to hear your news, but never fear the treatment these days is pretty good and within six months or so your husband should be well on the mend.  As you will see on this site the usual treatment is:

32 sessions of radio therapy and perhaps 6 sessions of Chemo.

The RT is painless but may give you something like mild sunburn.

The chemo can cause nausea and sickness. This will normally be controlled with drugs.

Once your husband has experienced the first week and knows what to expect it

is just a case of getting through it. 

It is probable that his speech will be affected for a while but most people get back to normal

within a few months.

My case was fairly bad and I cannot eat at all and only my wife understands my speech.

The professor told me this would be so before the OP. and gave me the alternative of

going home with a lot of morphine to see out 6 months.  That was 8 years ago and my life

is unrestricted in all other respects. So listen to the doctor, if he says things should be OK

relax and look forward to 6 months time when all this will be behind you.

Good Luck

Colin

My husband started treaments this week after fighting to get started chemo was on Monday and he is taking Docetazel due to being a diabetic. All sent well except he had an alergic reaction severe back pain, they stopped, gave benebrylwaited 30 minutes and started again, all went well, no side effects. he has had 4 days of radiation 1 more later today and they all went well. 1st day was alittle long doing all the adjustments but yesterday in out in 25 minutes for radiation. so far so good,,,1 week down 5 to go...

Bakmmo

Please pass my thoughts on to your husband this stage of the treatment is never nice and don't get easy as he progresses through. However we all go through this differently, some better than others, so my fingers are crossed for your hubby.

Hang in there it will be worth it and shout if you need to know anything

Having been through it thats what we are hear for

All the best

Vatch

Hello everyone!

I must apologise for my lack of replies recently. Life has been hectic but things have started to settle down so I'm back on here, I told you all you wouldn't get rid of me haha!

Good to hear from some newbies - Ken, Ryan, Mary & Gazza and a few others. Sorry to hear of your cancer news but you've come to the right place for help, support and advice. I've had the pleasure of meeting a great bunch of people from this site and I hope we will all be lifelong friends and always keep in touch and any newbies are also welcome on our next meet up! I'm also happy to give any advice from my experiences of the treatment.

Irene, Simon, The two Gary's, I hope you are all well. I'm now 18 months post treatment and doing well. Still finding new things to taste and feeling more and more comfortable with eating and also confident with different foods. My first proper curry a couple of months ago didn't go down too well so I'll avoid those for a while longer but I have found new things to enjoy instead.

I have another ultra sound on my neck in a few weeks, the lump which popped up a few months ago is still there, it's been scanned twice already buy they are confident it's nothing sinister, probably just a swollen lymph node from a cold I had. Hopefully they are right! I'm a bit concerned about my teeth, my lack of saliva is pretty bad since RT so I'm conscious of this having a damaging effect on my teeth and they seem to be decaying quicker than ever before so I'm going to have to talk to my dentist about that. However, life is on the up right now and I'm looking forward to a trip to California in August! I'm also starting a new job next week! 

Debbie, how's things with you? I hope your op went well if you've had it yet? I will be thinking of you. I must also, catch up with Jo's thread too.

Bye for now and best wishes to these going through their treatments. It does get much better!

Nicola xx

Hi Nicola, I just PM'd you through FB.  Seems I jumped the gun re your new job which hasn't yet started, so very best of luck with that and a holiday in California to look forward to sounds marvellous!  Best wishes to all the newbies on this thread.  I'm sure you'll get great support and advice here, as I did, and make lots of great new friends.  All is good with me (17 months post treatment) apart from bouts of thrush and a few moans about food, but not much to complain about really.  Hello to the rest of our gang, Gary, Dave and Gary.  Good to see you are all having fun x

Hi Nicola, 

Great to see your latest news! Glad to see you're managing to eat new things - I'm with you on the avoidance of curry,  though for wholly different reasons haha! 

Have a fantastic time in California and good luck with the new job. Really glad that your thread is still active and offering support to the newer forum members. 

How's the fatigue? Hope you're still pacing yourself! 

Well, off to catch up with Irene and Deb on another thread! It's all go haha! 

Sending big hugs to all on this thread, Jo xx

Hi Jo, lovely to hear from you!

I didn't want to reply to you until I had familiarised myself with where you were at with treatment etc. Sounds like (as usual) you are in good spirits and keeping busy with your work even with all that's been going on. I admire you for that although I'm sure it's difficult at times. I expect you will welcome the rest over the summer holidays!

My fatigue is much better thanks, although still strikes at times. I've got myself a new job which is less demanding and closer to home and I'll also be working less hours, which is great. I decided I needed to make some changes to accommodate being worn out all of the time so hopefully the new job will be a good change for me. My cancer was a wake up call to look after myself a little more :) 

I need to catch up with where Debbie is at, I'll have a good read on here when I have a bit more time.

Look after yourself, sending hugs back to you,

Nicola xx

Irene, good to hear from you too and thanks for the Facebook message. Wow 17 months already, that's flown by. I've struggled a little during this lovely weather recently, my thirstyness is terrible and BBQ food not so good for me but I manage. I hope we will arrange our Liverpool meet up sometime this year, it would be lovely to see everyone again before the year is out. I might give the chaps a nudge on fb and see how they are.

speak soon,

Nicola 

Hi Nicola, yes I share your sentiments on BBQ food (not that we've had much BBQ weather in Scotland - it has been just dreadful up here, no summer weather to speak of really)!  It certainly would be lovely to have our Liverpool meet, so nudge away!  

Hope all goes well with the new job.

Love Irene x

Hi all how are we all doing

sorry been a bit absent just trying to sort work out before a went on hols for two weeks

i had a great time away but was very ill at the start not due to food poisoning but I think my immune system is just a bit low and just could not deal with the new bugs....that's my theory anyway

Even though I ate like a pig 3 courses 3 times a day i only managed to put on 5lbs and appeared to have now lost 6lbs and I have only been back 2 days

wierd

anyway will catch up soon hope you are all ok