Hi Nicola,

Thanks for replying on the other thread.

Your cancer sounds similar to mine. I guess mine was further advanced and they said it was aggressive. I lost about 65% to 70%. which

didn't leave much. They didn't suggest a rebuild, perhaps it was too far gone. They also removed various other bits and pieces at the same

time so I cannot eat. This is no big deal as I have a perfect diet from 3 bags a day of nourishment via  my PEG. (2,100 calories).

The advice to eat well before the op. is good. I lost 2 stone plus after my op. I was 3 weeks in hospital but part of this was due to a blood

infection caused by the one grotty nurse.

The operation scars are very neat and I look pretty much the same as before, so I would't worry too much if I were you. They are just fine lines

on my chin and throat.   They took muscle (pectoral) from my chest for the blood supply. My OP. took six and a half hours.

The thing about an operation is that you are entirely unaware of it and should wake up without pain. I suffered fo 2 months with tongue teeth and ear

as you are so it was a relief.

I can speak, but not very well, you sound to be in a much better position.

The feeding tube in your nose is not uncomfortable, you just have to be aware it is there when moving in bed. Mine would often

come out an inch or two overnight. It pushed back in very easily.

It is not going to be a lot of fun but you will get through it and be fine. Just be positive and keep your sense of humour.

I used to tease the nurses and we had a good laugh. (Not easy with  my French)

Kind Regards

Colin

Hi Meerkat,

Thank you for your lovely message. I've not been given any drinks yet but my pre op appointment is next week so perhaps I'll receive some then. Another member on here has said he lost two stone following his operation and I can't afford to lose much weight at all so I've been eating well and trying to pile on some calories!

It is a relief to hear it hasn't spread isn't it. I felt like there was so much of a build up for me before my scan results, the days were a blur. So happy to hear yours didn't spread either and a good word - manageable - is sort of how I'm dealing with it too. I hope you have a lovely holiday, I'm taking a break from work before the operation too, I have so much to do beforehand and organise what with a two year old. Please keep me posted on how you are doing. My operation is in two weeks and I'm sure I'll post again before then.

Take care,

Nicola xx

Hi Colin,

Thanks for your reply and thank you for the tips with the feeding tube etc. I must admit I'm not much looking forward to that, I'm focusing ahead on when I can try swallowing some soft foods, that's helping me stay positive about it all. Glad to hear the scars are neat and you are right, it will be a relief to finally have this thing out and eventually no more pain - I hope?

I wonder why you weren't offered a rebuild. I must admit I didn't quite understand it all at first, I thought they were taking skins grafts etc to cover the wound on my to tongue, I didn't realise I would be having a new half built! It's going to feel very strange. They have said my tumour goes from the right side of my tongue (I can see it on the side of my tongue) into almost the centre of my tongue so they will be taking it away and a little extra. I'm glad you say no pain after the op, although I'm told my arm will probably feel the most painful due to the artery being removed and the skin graft, but all for a reason eh?!

Glad to hear you are sounding so upbeat and happy post op. I just hope I can be the same five years from now. I will post again with my updates.

Speak soon,

Nicola

Hi Nicola,

I had another thought.

I live in France so the routines may not be the same but after my Op.the bed was set so that I sat

at an angle of about 45 degrees. I think this was because of the large amount of mucus generated.

This may not happen with you.  I found after a couple of days in this position I had a numb bum.

If this does happen to you and the hospital do not provide a cushion which is doughnut shaped

it would be worth gettng a friend to buy one. Two weeks in this position is a long time.

Regards

Colin

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.