Mark, Thank you for a nicely worded, logical response. We are not on opposite sides of this thing, and think more alike than differently.

LOL, Okay people, big group hug now. Now that that is over with, let's pop some chill pills. Too many precious things out there to see, touch, feel, reflect upon. Say a kind word to somebody today, put a smile on someone's face, and thank God you are allowed to be apart of all the magic!

It hurts to read posts with personal attack going on here. We are unlucky enough to be one of the members in this forum but are lucky to have someone share our grievances, seek support and get valid information, etc. We are in the same boat fighting the same life battle involuntarily. We can ventilate our anger but should never let such ventilation take the form of personal attack. Anyone who commits this is a simple revelation of childish and irrational behavour. I hope Brian will not take Mandi's words too strongly and continue your good job here to help others.

Karen stage 4 tonsil cancer diagnosed in 9/01.

This is just my humble opinion, but let's face the fact that we are all in the same boat. Be it patient or caregiver - none of us want to be in this situation, but the facts speak otherwise. However this disease came to be in our lives - whether through a person's poor choices in life or just the twisted hand of fate, we must concentrate on surviving and beating this thing with every ounce of our strength. I am just a caregiver - I do the best I can, with what I have and with what I know, to help my husband in his personal battle. I am so inexperienced and frightened sometimes..I don't know whether I'm coming or going. But I muster on...and so does my husband, and so does everyone here - each in their own way and in the best way they know how. I am grateful for the kind and caring people here, who honestly give it their all to help others - while still facing so much themselves. It is through the contribution of the people here in this forum, that we learn. We learn not only in information on this disease, but also on how to be patient, to laugh, to give and to hope. These to me, are valuable lessons - and it is through this forum, that I have gained so much. As a caregiver, I may not be able to offer much in the way of treatment advice - but I hope to offer support to others, because I know how this can turn a family's world upside down. My husband's journey through this illness is my journey too, and I consider everyone here a part of my "family" - since a family shares things together. Best wishes and peace to all.

It occurs to me that what we all crave is a way to be heard. Crying in the wilderness doesn't work because there is no one to hear.

I am not trained in the ways of the mind but I am observant. A certain quantity of "screaming mad" resides in all of us because of what we are going through. Sometimes it is suprising what little things trigger the screaming. It could be amplified by personal immaturity but, to me, more likely it is because of super high stress. This cancer event is undoubtedly an extreamly stress inducing event. Those feelings are compressed and hidden in public but ocassionally come out when we are in the relative safety of people with whom we can relate. The same thing sometimes happens in families, and marriages. We vent with and sometimes on those people we love.

Overall I think this is cathartic and theraputic. But we all have to be sure that no one is accidentally on the firing range when we let loose. If someone gets hit, the result is even more stress for them and more stress is a very bad thing.

Finding a way to use that energy for something more productive would be great. Doing our best to use polite manners and more careful words will also help.

The pen is mightier than the sword. With a sword you can only effect one at a time. With words on the internet you can whack thousands at a time.

I sincerely second the thoughts expressed so well above by Danny, Julie, Jeffrey, Karen, DonnaJean, and Mark. We, all of us, are in the same boat. The support I have received here changed me from an out-of-my-mind scared idiot, to a calm and well-informed fighter. As the commercial says, that is priceless. I suspect there are many people here, posters and lurkers, patients and caregivers, who can say the same. While Mandi's remarks were out of line and hurtful, I know she must be suffering terribly to have so much anger. I hope the information and support available here can help her.

And Brian, with all my heart, I hope your situation is a false alarm!

Joanna

Dear Brian and all,

I am so very sorry. You summed it up perfectly for me Mark. I took out a lot of misdirected anger on here last night. Unfortunately Brian, I read your words in the wrong frame of mind. I saw them as condescending. After rereading every post in this thread tonight, it proved to me that I was very, very, wrong. I apologize.

I have so much bitterness inside of me right now that it honestly scares me sometimes. Believe it or not, I've been seen as a shy (hey take advantage of me!) type of girl all my life until recently. I've always been spiritual and tried my very best to help others. "Just have faith. Everything will get better", was my motto.

My husband's diagnosis came close on the heels of several personal losses. Each one profoundly changed my world. Before I could recover from one, another hit, until I was totally exhausted by the time my husband became ill.

After seeing the way he was treated by the oncologist, and his so called "home health care providers"....most of which didn't even show up and we had to do the flushings of his porta-cath, remove needles....etc.....on our own, the stress caved in on me. Just for the record, my outburst DID change things in the way this doctor now treats his patients. A receptionist now stays in the waiting room and monitors the patients' needs.

Also, I have done much charity work. My most successful fundraiser collected just shy of $14,000 for a local camp that gives cancer stricken children and their siblings a "normal" week at camp each year. This was 4 years ago....long before our cancer struggle began. Maybe I'm bitter because I thought on a sub-conscious level that doing good work would result in an escape from ever having to face this nightmare on a personal level. I don't know..... That sounds very selfish, I guess.

It's hard not to be defensive these days, but I promise not to do it again here. I just pray, that with continued effort, I will find the outlook and strength that I once had.

Again, I'm sorry. I never, ever, meant to harm any of you with my words.

Mandi

Mandi,

It takes a big person to admit they are wrong. Right now, you must be standing about 20 feet tall. And I believe Mark is right up there with you.

This is such a horrible disease and it takes an enormous effort to stay on an even keel. Everyone "loses it" once in awhile and I think that it what we saw happen here. Thank goodness we are all normally sane and reasonable adults. Now that the venting is done and apologies have been said, I think it is time to get on with the purpose of this forum, which is to help each other deal with the horrible hand that life has dealt us. Information, compassion and understanding are important weapons in this battle and OCF is one of the best places to find them.

Cheers to you for being a big enough person to admit your mistake.

Rainbows & hugs,
Rosie

P.S. We think we are seeing signs that the chemo is starting to work for Heather. Her trismus has improved. 6 weeks ago, her teeth were locked so tight she could hardly get an ice chip between them. Now, I can get my finger between! We are hopeful that his means the tumor is shrinking and relieving the pressure on the jaw muscles. Keeping hope alive! Sunshine and rainbows may still be ahead for her.

Rosie-
I have been thinking about Heather everyday now. I felt bad that I couldn't really reply to your last posts, mainly because you just were posting an update and really weren't in the mood for any uplifting messages, so to speak. With that said, I am so happy to hear that Heather seems to be doing better. You would know better than anyone else, any changes she has been making, and any progress she has made. You are with her every moment you can be, and that is so wonderful that she has you to be her cheering section. She has the support of everyone else here as well, which I am sure you already know. So please, keep posting these updates, no matter how insignificant it may seem, like her mouth opening a little more than yesterday, we all want to hear that news. I hope she continues to make positive strides daily! Best wishes for a great weekend!
Desiree'

Mandi