Hi everyone my name is ems, im a 36 year old mother of two daughters 19 , 13 . i work partime in a supermarket .I have suffered with my nose for 18 months now first a hole in my septum appeared , septum completely gone now,cancer has destoyed my nose and has now eaten its way through to the roof of my mouth ,which is now making things difficult to eat when i drink it gos through the hole in the roof of my mouth and out of my nose its constant 24/7 pain and discomfort .Early next month im havin surgery to remove my entire nose and most of the roof of my mouth and top teeth , ive been to see the guys who are gonna be making me my prosthetic nose and the peoplw who will be making my teeth .this is all so unreal at the min im just keepin it in the day, one day at a time ,god bless all whos lives are touched by cancer xx

Good afternoon ems,
I wish you well with the surgery next month,I hope all goes according to plan.A Macmillan nurse will be assigned to your case and you will find she is a great help in many directions medical and non medical,don't be afraid of asking for help.
another website which could be helpful is :-
http://www.lets-face-it.org.uk/, you may have to copy and paste this link.

Keep Smiling ( I always end postings with this message, it may be a little difficult at the moment but do try)

John

Hi Ems
So sorry you have such a devastating diagnosis, but glad you finally got some answers. This site is a wonderful place for support and understanding. Mis-diagnosis seems to be a common theme here - very frustrating.
Wishing you all the best
Vicky

A hug from the states

Hi Em,

You're in for some rough times ahead but with your good medical care (and really good drugs, I hope!)you'll get through it all. Great that your daughters are old enough to keep the household going. Be sure to read the threads in the Survivor Stories forum to read how so many of us managed to survive it all.

We have a survivor, Sharifeh, who has a blog that's well worth reading. She's a sweetheart. Be sure to look at the blogs she has listed on the right side, 'My Cancer Warriors,' where even more people from all over the world tell their stories.

Sharifeh's Blog

Ems, we all care about you in that bizarre way that cyberfriends do. Come here any time for support.

Take care my friend,

Mimi

Sorry to hear your diagnosis but please take john up on the "let's face it" website. The woman who set up that charity, Christine Piff is such an inspiration, and her story is well worth a read. I have met her a couple of times and you can't help but be inspired by her. She wrote a book which is now out of print but I may be able to get you a copy to borrow if you want. If you contect christine at the charity she may have more copies also. She was about 30 when diagnosed and that was 30 years ago, she gives hope to us all.

Your diagnosis must be a great shock. However, I can relate that I had a student who had a prosthetic nose recently and I didn't realise until he made a comment about never needing a handkerchief. He'd carried on working. You can adapt to changed situations, but you do have to be determined and look for the good things in life. I know it sounds corny, but I really do find that it helps to remember little things that you see every day which are beautiful like a bird on a bird feeder or a child laughing.

I wish you every success with the treatment.


Chris
3.75 years from diagnosis

Hi everyone, my name is Honeybee, my husband just diagnosed tongue cancer. The doctor took his tumor out 10 days ago. And now, we are getting ready for the second surgery next month. Our doctor told us that he has to remove the lymph nodes since the tumor is in the middle of his tongue. Then, the grafts from his forearm. The whole thing sounds very scary to me. I hope anyone who have had similar experience can help us.

God bless you all!

Good afternoon Honeybee,
This is a very worrying time for you both but take heart from the positive experiences you will find on this website.Tongue cancer is quite a common form of mouth cancer and generally the treatment is very successful, I know several people who have had this operation and they were eating and speaking again very quickly and in most cases after six months no one would know that they had had this problem.
Please let us know how things turn out.
Keep smiling
John

Hi John, most appreciate your prompt reply. Thank you for you kind words and more Importantly, your positivity. We are going to have another CT scan on Monday, I keep my finger crossed. God bless!

Actually, I have one more question that what if we don't take the lymph nodes out? I know, it probably sounds bizarre, but it seems to me that the doc will combine two even three operation into one!! I am just so scared. Especially after I heard that he has to carry trachie. I don't even know that his physical condition is strong enough to take this op since he can't eat after the first operation.

Me again Honeybee,
Lymph nodes act like blotting paper towards rogue cancer cells and it is not at all uncommon to to remove them.
Seven years ago I had a twelve hour operation to deal with a cancer in my lower jaw, this involved removal of a significant part of the jaw bone and rebuilding with metal plate and a"flap" consisting of bone,tissue and artery taken from the left arm which in turn was repaired with more metal plate. Whilst they were doing the job the surgeons removed all fifty four lymph nodes from the right side of my neck. I was sixty eight at the time and not in very good health but I survived, as you can see. Please be assured that the operation will only go ahead if the surgical/medical team are satisfied that your husband can cope with it.
I was grateful that the removal of the cancer and the reconstruction was done all in one operation rather than several lesser events.
You mentioned my positive approach, it aids recovery to take a positive view one question which non of us should ever ask is "Why me?" there is no answer to this question and the asking only makes you feel worse.
Now Honeybee it is time for tea and I saw a rather nice looking cake in the kitchen so I had better go and get my share before my grand children eat it all. If you have more questions go right ahead and ask there are plenty of people with answers on the site.
Keep Smiling
John

Dear John, thanks a lot for the explanation. I will write all the questions down before next consultation.
God bless you!
P.s enjoy your tea time

Hi Honeybee

I'm sorry to read about your husband. Like him, I had tongue cancer. It's hardly my idea of a good time, but it is survivable. I just passed the 6 1/2 year mark.

It's not bizarre at all--the operations can be combined, but quite a lot depends on the doctor and surgical team. That's how mine was done, like one-stop shopping. I had a very restful day while they did the neck dissection (50 lymph nodes, all clear), took out (and replaced with my arm) half of the floor of my mouth and the afflicted part of my tongue. One operation is bad enough, I can't imagine having it done in stages. In addition to the trach, I had an ng tube. Since your husband can't eat, you might want to ask his doctors about a feeding tube.

Honeybee, I really hope that you and your husband find what you need on this site. We'll do our best to help you.

Hope you managed to get to the cake before your grandkids did, John. I've recently discovered parsnip cake (similar to carrot cake but spicier)--my new favorite!

Julia

Hi Julia, we are gonna go for twice CT scan next week plus one meeting with all the surgical team members. So far what I know is that lymph nodes out, reconstruction of the tongue(there is not much security margin btw), trachie, feeding tube.

Honestly, I am so scared! And terrified for him. I know it's gonna be draining for him as well as care giver. I am doing lots of researches to see how to take care of him after the operation. Pls anyone can give me some advice?
Scared honeybee :-(