Jackie, is her problem area on her upper gum or her lower? Several people on this forum have experience with one or the other. My cancer was on my upper gums, and there are several others here with similar circumstances. Let us know a bit more, and we can help you better.

BTW--I just yesterday had my 18-month checkup, and I continue to be cancer-free, so perhaps that will give your mother a bit of a lift.

Tell us more, and we can be more specific in our advice.

Jackie, just a note with regard to your comment about doing a lot of reading here. Sometimes it seems like the very sickest people or their caregivers post here. Please, please know that there are some like me who went through the surgery, radiation, and chemo and did not have a really tough time. I was very tired, and I was most grateful that I did not have to drive myself to appointments. But I bounced back remarkably fast to a truly normal life and am now more than five years past all of that.

The suggestions given above are excellent. I kept a calendar book with large squares to note all the apointments. The tip about collecting business cards is very good also. I guarantee you they will come in handy.

Finally, know that once the flurry of initial appointments settles into the routine of treatment, things will seem much calmer.

I wish you and your mom the very best of luck. Remember, for any question you have, there will most likely be one or more people here who can answer you from experience, which I found to be the most helpful when I was on the asking end.

Amy...I read your blog and words cannot express how much I admire your strength. I am so sorry for your loss and hope each day is getting a little easier for you

Christine... great idea about the notebook and business cards. I will go out today and pick up a small business organizer with a calendar and notepad and room for business cards.

August...I believe it is her lower gum but again I've got little information myself. I will fill everyone in with as much as I learn myself. Congratulations on the 18 month check up!!!! That definitely lifts my spirits (as I'm sure it does yours LOL)

Joanna...Thanks for reminding me that many people go through this without too much trouble. My mother in law went through a battle last year with cancer in her nasal passages. She was sick and had some really bad days and weeks but up until a few weeks ago she said she was feeling back to normal (unfortunately it looks like she is having a re-occurance now and we will know more about her cancer in a few weeks)

Again thank you all for the encouragement and suggestions. I have alot going on right now with trying to deal with a very active and difficult two year old, a mother-in-law who is in need of some love and support, we are also in the process of looking for a new home...the list goes on and on.

So if you don't hear from me for a few days it's not that I don't appreciate and value every word everyone has for me...it's just lack of time. I do check in on this board several times every day even for just a minute or two to stay up to date with new posts.

I have a very busy weekend coming up and will be out of town visiting MIL and camping with kids (long weekend here in Canada).

My update about fridays appointment will likely come next week sometime.

Have a great weekend everyone!

Hi Jackie,
I agree with everyones suggestions above. I found that I can't write as much as what the doctor is telling us....and there are so many doctors, interns, rns, social wrkrs....it feels almost impossible to recall what was said. I think a voice recorder would be an excellent tool to take with you, to record what the person is saying, I also think a notebook to write down your thoughts as you are being told different things.
I have two girls who are extremely close with my mom, they are 17 and just turned 11. My older one will talk about it, my younger girl holds a lot in...I bought her a journal, she write s in it anytime she doesn't want to talk about what is bothering her. She has shared her journal with me on a few occasions, the one point that was repeated was she felt insecure because she didn't know what was happening, and felt that everyone else knew and she was more frightened because it was being kept from her. Honesty works best. Our journey so far has been an insane ride...and yet, at the same time, it has brought us all even closer. We've shared so many changes in decisions with my mom, decisions that were out of our control, that as adults it was confusing, for my kids....I can't even label it. I think it helps to be open, it allows them to share their feelings too, and not be so afraid and confused on their own. My sister has a little girl who will be two in Sept. I saw her on Saturday, she looked at me and said, "Mom-mom? Mom-mom's hungry and tired." I almost cried. My niece, while only a baby, knew exactly what mom has been feeling.
This forum has been such a gift to me. I felt like my family and friends let me down. I was scared and alone...until I met my friends here. There is always a light on here, a safe haven, a friend nearby.
Hope your appt went well.

Hi everyone,
We just returned from visiting my in-laws.

Our appointment on Friday went quite well. We met mom's surgeon and radiologist as well as various nurses and surgical residents who also examined my mom.

Initially when we met with the radiologist he said treatment would probably consist of radiation followed by surgery depending on what both doctors discovered in their examinations that day. Within just a few minutes he had already changed his mind and said both he and the surgeon would probably suggest surgery first. I believe in his examination of her he could readily tell that it was quite advanced and more than likely well into the bone in her jaw.

I asked him about type of cancer and stage and he was very forthcoming about all the reports so far and let me read for myself and answered questions honestly and compassionately.

It is SCC and was staged at T4 N0 moderately differentiated.

The surgeon came in soon after to give his opinion and he said yes she needed surgery asap and upon examination found a swollen lymph node so changed her staging to T4 N1 with a whole bunch of mumbo jumbo after that.

He told her to cancel her CT scan at our local hospital this coming thursday and he would get her in tuesday or wednesday at his hospital and she could see him for a consultation and results immediately afterwards.

These doctors gave my mother a much needed boost of confidance. Just the fact that some doctors are listening to her and ready to offer her some immediate treatment makes her feel better.

I will keep everyone informed of all the latest news as I get it.

Thanks
Jackie

Jackie,

Just wanted to say Hi, and thinking of you and your MOM.

So glad you found this site. I know it was a gift to me as well.

The more you know the better you will feel.
Take care..
Diane

Hi Diane,
It sounds like you've been through quite alot in the last few years.

Glad to see you've overcome everything.

What doesn't kill us makes us stronger...right?!

We are still waiting for mom's ct scan appointment. The surgeon last friday said they should be able to set it up immediately and i've been calling his office and leaving messages with no response. Needless to say i'm a little ticked off. I'm not sure who else I can call.

Hanging in there

Jackie

Jackie-
I know it's not the protocol, why not call where she is supposed to have ct scan and see if they've heard anything from the office? Maybe they have an inside number they could call and ask about helping you schedule for your mom.
I know it sounds crazy to do, you wouldn't believe how many times one office mom was dealing with dropped the ball. You have to be the strongest advocate you can be, and sometimes they don't make it easy for us. When you went to the appt, can you recall the nurses name who was with your mom's doctor? If so, maybe call and ask for her, maybe she can respond to a call.
Good luck.

Thanks Donna,

We managed to get in touch with the surgeon's assistant this morning and she said that she didn't have any requisition for a ct scan for my mother. Why couldn't she have returned my calls and told me that? She said she would take care of it but I don't have that much confidence in her anymore .

I called directly to the cancer centre she went to last week and spoke to the lady at the head and neck clinic and explained the mix up. She said she will look into it and try to sort it out and get back to us tomorrow. I hope so or they will both be hearing from me again.

My mother already had an appointment at our local hospital for today for a ct scan but she cancelled it on the advice of her team at the cancer centre.

It's all very frustrating...this waiting game.

Hopefully tomorrow will bring some more information.

Jackie

Cancer is a hard enough battle Jackie but sometimes the battle with administrations can be just a difficult and a lot more frustrating

good luck to you and your mum

liz