Hi guys, I have been an observer here for a while. I came here on behalf of my mother-in-law who had her first SCC in 1998, surgery and radiation, cancer was in left cheek area. Recurrance in February 2003, had to wait till April for surgery due to Sars!! She had cancer in her right cheek this time and osteoradionecrosis had invaded her left mandible causing immense pain. They did bilateral neck dissection, removed left lower mandible, didn't re-construct and left her in quite a state. A feeding tube was never offered and I was not anywhere near as well informed as I am now, so she lost a lot of weight and became very weak. The reason I write tonight is, I was just checking in with her and she is really depressed. She feels like she is going backwards. Initially she was able to eat a little pureed food, now she is finding she is choking on everything, pureed soup has become a problem! She is unable to wear a lower denture due to lack of jaw. She dribbles everything due to lack of feeling in various areas, and in the last month feeling has been returning in the form of pain. The pain worries me, she didn't go to her last dr. appointment and I feel that she thinks its back. Throughout this, I have tried to support her and encourage her to hang in there, but I am running out of things to say. I don't even know if I am asking a question here or just venting. I figure if anyone has any ideas it would be you guys, you really know your stuff.... Thanks for listening.
Karen

Hi Karen,
When they removed the left lower mandible, why didn't they re-construct? You said your Mother-in-law dribbles everything due to lack of feeling in various areas. This is one reason I no longer eat in public. I compare it to watching an oversized baby eat.......more on the chin than in the mouth. I'm sure others here have the same problem. You have to make her understand that she must go to her Dr. appointments even if she thinks its back. Better to catch it early than to let it get to far along. Your support throughout this is I'm sure more help than you will ever realize. As well as any encouragement from you for her to hang in there. You said that you are running out of things to say. Just letting her know you are here if she needs you says a lot.
Keep us informed and remember we are here for you to vent at when you feel the need to.
David

David,
Thanks for responding. She has had a lot of problems with circulation and blood clots in her legs and they didn't think she would react well to having a piece of bone removed to re-construct her jaw. She refuses to eat in public which is a shame, but she is too self-conscious of how she looks and the mess she makes.
Karen

Karen...your Mother-in-law is a lucky lady to have you there to fight for her.
Please keep encouraging her, she is terrified.
Depression is a very real side effect when fighting cancer,maybe her Doc could prescribe something for her.Was she never offered a feeding
(peg) tube? You may also want to give her the recipe for the shake lots of us used. around 1400 calories.
1tablespoon Carnation powder
2tablespoons Ovaltine
1pkg Carnation instant breakfast
1/2 cup whole milk
1/2 cup half and half
2cups ice cream.
Good Luck
Marica

Welcome to the Oral Cancer Foundation Karen. I'm truly sorry your mother-in-law has to go through this again. She can survive this round to! Nice to hear of a 6-year survivor.

As our founder Brian told me when I had a reoccurance it's another bump in the road that I have to leap over. With all the support I've received I don't want to let anyone down. I have been practicing my leaping ability for two weeks now.

Please let your mother-in-law know it will get better. We are always told to measure your improvement in weeks not days. I found this to be quite true.

Best Wishes, Your new friend, Danny Boy

Karen - welcome to another Toronto person. Where is she being treated? My sister is at TSRCC at Sunnybrook.

Marica, thankyou for the kind words and the recipe, I'm sure she will like it. They really stressed how important it was not to lose weight but a peg tube was never offered as an option. We now know better.
Danny, as usual you know exactly what to say. Its easy to lose sight of the positive, I hadn't thought of her as a 6 year survivor and I know she hasn't. It's a nice thought....
Carol in RH, thanks for the welcome. She is being treated at Princess Margaret in Toronto. I am actually in Oshawa, and she lives quite close to you in Markham.

Karen,

Welcome! I am sorry your mother in law is going through what she is. It is a good thing, though, that she has you by her side. I can certainly understand how tough it must be for her to eat anywhere, much less in public. She sounds like an amazing woman to be where she is right now. It is important to keep her calories up right now and to keep her walking some every day. Her doctor should be addressing all of her concerns but I can see why she is so scared to go to the doctor.

Maybe you could make a list of all the issues with her and try to pick the one that bothers her or discourages her the most. Make an appointment to address at least the top of the list first. Help her to slowly build back her trust in the doctor(s) by helping her see the progress. Take it slow and work down the list.

Keep focused on some of the medical issues right now and her outlook will improve as they get resolved.

I wish there was more I could do for both of you.

Ed

KarenC - you are right about the weight issue - my sister was 100 lbs BEFORE her diagnosis. We finally went with the PEG tube right after she started radiation and she is on the high cal Isosource but still can't seem to get more than 3 cans of it into her in a day.