Not the best day of my life today. MRI & CT scan next week, then referral to oncology unit in Cambridge. Had been planning to spend more time with my husband in 2011 by cutting down working days - now looks like I'll be spending more time with him but not in exotic places.
Pretty scared today - not sure whether it's spread anywhere - trying to be OK for everyone else!!

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Gillik

Getting a diagnosis of cancer in the mouth is always scary. Try to get on and do the normal things you would normally do. Until your oncologists get the results of the MRI and CT scans and formulate a treatment plan, there isn't much for you to do. Your mind though will be going all over the possibilities. Try and learn/practice some relaxation/ meditation exercises as you will find them helpful. We are here to help with whatever questions you might have. Meanwhile, have a good weekend and ... wrap up well!

Best wishes

Vinod

Thanks for your post - nice to know you're there!. Much more positive about things today. As you say I need to concentrate on getting the results of the scans and then planning my treatment. No doubt will be back on the forum with many questions as things progress.

Hello Gillik
My Mum always used to say 'never put off 'til tomorrow what you can do today' ~ I guess you'll really be running thoughts like that through your mind right now. We are all, always planning to do something 'tomorrow', 'next week' etc. A cancer diagnosis brings the value of 'now' right into perpective and pulls you up with a jolt.
So sorry you find yourself on the stop/start ride of the cancer train. In this early stage it is very much about appts and waiting for the next phase before treatment actually begins. Although treatment is the tough part, at least things aren't so surreal once the show is on the road!
You won't find better/more support anywhere than on these forums so keep us all close and ask away or unload whenever you need to. There will always be someone here to listen.
My advice always is to love yourself stupid because today could be the last for any of us, mortality takes on a whole new focus once the cancer light comes on.
You may be in for a tough time, Gillik but there are so many survivor stories on the boards that should give you strength for the time ahead. Do you have plenty of support? Take any offers of help that come your way. Don't be 'strong' for others ~ much easier if everyone can be open and honest about how they feel. It will be tough for your husband as well and there is plenty of support for the carer on this site too ~ thankfully. It sure kept me afloat.
Thinking of you from way Down Under
Deborah

Hi Gillik

Deborah is right - there is nothing like a cancer diagnosis to put your life into perspective!

From personal experience, it is scary to be told that you have cancer and I always found the worst time was waiting for results. Its the 'not knowing' that I always found the hardest. But once you have your treatment plan sorted you will have something to aim for and you will get through it - because you have no choice. Then when you start your treatment you just have to take life one day at a time and go with the flow.

I'm now exactly two years down the line from having surgery on my tongue to remove a tumour (following by radiotherapy) and thanks to the experts, I have finally got my life back to normal.

This website is wonderful for sharing your thoughts or getting advice - but can just get a little addictive!!

Best wishes for your treatment.
Wendy

Thanks for your post. Each day I'm getting more positive about my diagnosis and more determined to get through whatever treatment I need to have so that I can get on with life.
Aware that the next months may be very difficult but I have a wonderful family and very strong friendships who will support both me and my husband through this. Several of them have experienced cancer themselves, one with oral cancer 7 years ago, so they know the score.
Again, thanks for your words of sense and encouragement - much appreciated

Now have results of scan. T2 3cm tumour on side of tongue - no sign of any spread. Have been to see the great team in Addenbrookes and surgery is planned for 20 January. Sounds a bit scary with free flap graft being taken from my arm, skin graft from leg etc and a neck dissection - but in the scale of things it's fine.
I have kept a really positive outlook all over the holiday season, had a great Christmas and New Year - and now looking forward to the challenges of 2011 with a positive, fighting spirit. I'm determined that something good will come out of all this.
Have gone into my comfort zone of making lists of stuff for while I'm in hospital - lucky to have a fantastic family and some truly wonderful friends - so I am confident that we will work through this as a team.
Thanks for the messages of support.
Gilli

Hi Gilli

You've got the same diagnosis I had, so I'm really hoping that it turns out as well for you.

Julia

Hi Gilli

So sorry to hear of your diagnosis, but I can say you are going to be in the best place for your operation and in the best hands.

I had the same operation in Addenbrookes nearly 3 years ago now and they were absolutely fantastic. On the day I was discharged a young girl only 21 was then going down for the same op and I am still in contact with her. She is doing fantastically well as am myself.

Are you due to have radiotherapy after your operation or are they not sure as yet?

You know, I felt very lonely after having the operation until I joined this website, which has been absolutely fantastic, but it is still not the same as having someone to speak to face to face. I am not far from Addenbrookes and if you want someone to talk to I would be more than happy to meet you, beit before your operation, during your stay in hospital or after your operation, just private message me and I will get back to you.

By the way do you know who your plastic surgeon is, I had Richard Price and my surgeon was Mr Moss, but Mr Moss is from the Peterborough hospital which is were I had my diagnosis.

Take care, keep positive, and should I not hear from you before your operation all the best.

Love Sue

Hello Gilli

I saw Yvonne today. She had just got back from her holiday in the Gran Canaria. She is really doing very well 6 years after her surgery and radiotherapy for her tongue cancer. Read her story and take heart, you will be fine too!

Best wishes

Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi Gilli

Its good that you are feeling so positive about it - this will definitely help you to get through it. I also had an identical operation two years ago.

Good luck
Wendy

Many thanks for all your positive words of encouragement and good wishes. My surgeon is Malcolm Cameron and the cosmetic surgeon is Amer Durrani. I also have the most fantastic nurse practitioner in Dorothy Booden who has already given me so much confidence about the operation and the future.
At the moment the need for radiotherapy is in abeyance, so far all scans/tests etc don't show any spread. But Mr Cameron is going to test the nodes and will then make a final decision after that.
Sue: I live in King's Lynn - so touching base with someone local would be great - how would be best to get in touch?
So onwards and upwards this week - can't wait to get it over with and then start planning life after surgery. I have always been a true fighter and the most important thing on my horizon is a birthday on 25 February and planning my next holiday. My husband and I just love travelling and especially when we can see wildlife in their natural habitats........ We're also lucky to have friends all over the world who we often catch up with in far flung places. Think the laptop is going to be working overtime on "surfing" opportunities
looking forward to updating you on a good recovery and thanks again for the support - it really has made this period of time so much easier to get through and has kept my spirits up.
Best wishes

Gilli

Thinking the best for you in your fabulous recovery!

Gillik,

How did the surgery go on the 20th? Please let us know.

Take care,

Mimi

Hi
Surgery on 20th went well and I came home late on Wednesday 26th.
Tongue seems to be functioning very well and I have a pretty good range of speech, albeit that it's still a bit fuzzy.
Also able to eat a wide range of food, had a great home made casserole last night and am enjoying being allowed to eat ice cream whenever I want!
Forearm graft site is a bit sore, but I can honestly say that other than that I have no pain and in myself feel OK
Main struggle is making myself rest enough to enable healing and recovery - I'm usually a real fidget and it's a real discipline to get a balance between pottering around at home and sitting down - think I'm nearly there
Addenbrookes hospital were truly amazing - I could not have had better care - I'm going back for first check up tomorrow so hopefully they will be pleased with my progress.
Many thanks for all your support leading up to surgery - it was a great help.
Best wishes
Gilli