Hi all
I'm new to this site so my apologies if I don't quite get things right on here to start with!
I'm a 36 year old mum of two and I have just been diagnosed with malignant melanoma on the base of my Tongue which has migrated to my larynx and lymph nodes on the right hand side of my neck! Oh how lucky am I ???
I've been told that this type of cancer is very rare where I have it and I am one of 1118 other people that have ever been diagnosed with it?
I am due to have surgery on the 11th of January 2011 (my choice to wait until after Xmas for my children) as the consultant advised me that there is a strong chance that they will not be able to get it all and to prepare for the worst ? Those words will forever haunt me now!!!
I was just looking for any help or support that anyone could offer me having gone through any similar experiences or operations.
Thanks
Helen

I am not familiar with your type of cancer but can tell you that this is the right place - I know others will post. Have a wonderful Christmas with your kids!!!!

Good Evening Helly,
as you say oral melanoma is quite rare and I doubt if anyone can comment from personal experience.regarding the operations, there are many members who have had a laryngectomy and removal of tumours from the tongue is quite a standard procedure, only this week I attended a meeting with a lady who had such an operation three years ago and six months after no one would have known. neck resection is a normal part of surgery to treat oral carcinoma, I had a substantial part of my lower jaw removed to get rid of a cancer and the surgeon removed all of the lymph nodes from the right side of the neck whilst he was at it.Iam not saying it is all good fun but it is survivable, I am seventy four and seven years downline from the surgery and I enjoy a pretty normal lifestyle my father survived for eleven years after a laryngectomy then died of something totally different at the age of seventy nine, I am working on beating his record.
This is a worrying time for you but take heart from the survivor stories on this web site. If you want to ask questions, someone will have an answer for you, if you just want a good moan then go right ahead.
Keep Smiling
John

Hi Helen
I am so sorry to hear of your recent diagnosis. I know nothing of your type of cancer, but I would urge you to get a second opinion at a centre of excellence, such as the Royal Marsden, or UCHL.(both London) Especially as your cancer is so rare, your local hospital will have no experience of it at all. I too have a young family (although I'm much older than you) and have opted for treatment at the Marsden in London rather than locally, even though it's going to be logistically difficult and emotionally challenging being away from home. If you would like to e-mail me privately please feel free. I too begin treatment in the new year. Try and enjoy Christmas, but remember, there's no reason why you shouldn't enjoy many more, whatever the statistics say, it doesn't mean that that will be you. Statistics are made up of everyone, old people, sick people, people with underlying illnesses, neglected people... you get my drift! I feel quite passionately about this as I have done masses of research into statistics and I believe the only ones to bother about are the ones that give you personally great odds!
Take care and good luck.
Vicky

Thank you for your kind words and support it is just such an emotionally and physically draining time that I really want it to be done and over as soon as possible but my heart is wanting to have the most fabulous Christmas for my girls more.
The consultant that is heading my team from the Doncaster royal infirmary is a centre of excellence in this field and the rest of the team are from further afield including a specialist in menlanomas. I'm confident in the team but just so scared about what to expect after the surgery and how I can help my girls prepare for it and how I will look etc???
Thanks again

Hi Helen
Fantastic that you are already being treated by a centre of excellence. Having faith in your team is crucial I think.
I don't know how old your girls are, but my little girl is 6 and has special needs which makes her developmentally younger. I haven't used the word 'cancer' I don't see the point. I have told her that I'm going to hospital and will be poorly. I am making her a timeline and a memory box. I tend to drip feed information, so at random times, say when she's brushing her teeth - or any time - I'll just say 'you remember that after Christmas mummy's going to go to hospital?..' then I'll add something like, 'it might make you feel sad but Auntie Suzie will look after you' - then I move swiftly on. I have no idea if it will work, but I hope it will help prepare her. There are very few times I've regretted being a single mum, but this is one of them!
Have a great Christmas.
Vicky

Hi everyone
My family and myself had a lovely Christmas although it was tinged with thoughts of next week we enjoyed every minute and I even managed some of my sisters Christmas dinner.
Now for the serious time ahead and my operation is tuesdaY 11th of Jan. I'm petrified but have the brave face that my family need st this moment I was just wondering if a
Nyone can advise me more on what to expect initially after the operation?
Thanks again
Helen x

Hi Helen,
Welcome to the club no one wants to join! I know from experience what a terrifying time you are having right now, but staying positive and keeping a sense of humour is my best advice. I had part of the roof of my mouth removed, my lower left hand gum and jaw bone and some lymph nodes. This involved 31 hours of surgery,where my mouth and jaw were rebuilt using bones and tissue from my legs, followed by 6 weeks of chemo and radio therapy. All this was just over 2 years ago, and now I am leading a more or less normal life. I can eat more or less anything, albeit slowly and carefully and my scarring doesn't bother me at all, even though my legs look as if I've been attacked by a shark! I have a slight speech impediment (which my brother refers to as 'talking with a limp'), but again, it's a small price to pay. I hope this gives you a little encouragement, as I know it helps me when I read stories like Johns, who replied to you earlier. As I said before, think positive and keep a sense of humour, no matter how hard it may seem!. Wishing you all the luck in the world Helen, and there'll be lots of us thinking of you on Tuesday. And, we'll all be waiting for you to come back here and tell us how well you are doing! Good luck, and best wishes.
Dian xxx

Good afternoon Helen,
Your question regarding what to expect is a difficult one because we are all different. One thing we have in common is imagination, and at a time like this imagination is no help at all because our tortured minds tend to create a scenario which is far worse than reality. I expected to wake into a subdued world of extreem pain but it was not like that, my first thoughts were "I'm still alive....great" "the operation which has been playing on my mind is behind me.....great again" But where was all the pain I expected? it just was not there, I could think of plenty of times when I felt more comfortable but there was very little pain. The self administered morphine drip was a help but at the end of day one I gave up using it. I am not alone in this reaction, most people I have compared notes with have a similar tale to tell.
One thing which tends to be disconcerting is the number of drips and drains which which were inserted whilst you were still asleep but even these can induce positive thoughts, when, about day four, first one drip is removed then another and another next day. Each one feels like a milestone in the right direction.
I wish you well for Tuesday Helen
Keep Smiling
John

Thank you John and Dian for your well wishes, as you so rightly said John my mind is racing away and although I've had two fantastic Macmillan key workers talking me through the operation it does help to hear it from those that have truly been there and got the badges to prove it !!
May I ask how your family coped with seeing you after the operation as although it may sound strange that this is worrying me, I just dont know if there is anything more I can do to make it easier for them!
I've done the whole pictures on the Internet, leaflets and lots of talking but I'm worried Bout my childrens reactions in particular to what they will be fAced with to start with.

Thank you again
Helen. X

Good Evening Helen,
My younger daughter (about 35 at the time)came to see me in hospital and studied me for a while before saying"I think they have made a distinct improvement dad" which made me laugh and resulted in the most painfull part of the whole event.
Like you I was concerned about the reaction of my grand children who were six and ten at the time and I put off seeing them for a few days after I returned home. when I did agree to see them I said "I know I look a bit funny at the moment but I am still the same old grandad inside" The six year old looked at me in a strange way and said"of course you are grandad" and gave me a cuddle which did me more good than all the pills and potions.
Don't be too worried about the youngsters, it never ceases to surprise me how good they are at adapting to new situations, I think you will be pleasantly surprised at their reaction.
Macmillan nurses are super, they really are good at getting things done.
Keep Smiling
John