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#49430 04-25-2003 02:18 PM
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I guess that rule no. 1 of the experienced cancer patient is what has almost become a cliche for us: " Be your own advocate ". I, like most of us, was a little awed at first by the fact that I was at MD Anderson, rated the number one or two, depending on whose poll you read, best cancer hospital in the U.S. ( and, I guess the world ). I chose not to go to go to another facility for a second opinion, and, as I watch people from all over the U.S. and the world travel to Houston to be treated at MD Anderson, I still believe that I am being treated at the right place.

Having said that, I have learned that I must be my own advocate. Having an interdisciplinary team is a wonderful way to be treated for the cancer, but at times I have felt lost between the surgeon, radiation onc. and oncologist. Seven months late, I finally met my patient advocate, but as far as I can tell, she is worthless.

At present, I am trying to figure out why I am feeling less energetic, making less progress eating, and for the first time since getting better after treatment, feeling worse. My chest Xray showed " aspiration pneumonia " and after a swallow study showed no aspiration, the swallow tech assumed that it is reflux and prescribed Nexium for me. I am not satisfied with this, so I have been emailing my doctors, and even paged a couple of them to further discuss the matter.

I am scheduled to see the swallow people again on Tuesday, 4/29 and now, after paging him, will see the surgeon again as well. I have never had the need for surgery, but for better or worse, this fellow is my main care giver. But he doesn't have a care giver's personality...he has the arrogant personality of the renowned surgeon that he has been reputed to be for over 25 years.

My point: Don't be intimidated. Ask questions. Take a loved one with you to remember and write down what was said and to ask their own questions. Get business cards from every doctor and assistant..most have email addresses and pager numbers. And, as Brian said, if you don't feel right or you feel that something is wrong...pursue it. I am very fortunate to have physicians for close friends who constantly answer questions for me and attempt to steer me in the right direction...but all of us can demand a little time and ask questions...the doctors are obligated to answer them.

Don't be shy...it's your life. ( and my kids want me around a while longer)

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#49431 05-07-2003 10:58 PM
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Hi Danny,
Absolutely dead on. Should be require reading for all cancer patients. My HMO (Kaiser Permanente) has a feature that allows you to look up ALL of their doctors on-line, where they went to school, residency, etc. And they use a team approach which was a real plus. They also have advice nurses which bailed me out many times and were an excellent interface with the doctor. Kaiser has provided me with copies of all my medical records and tests. They give cancer patients first priority also. I have been extremely satisfied with the standard of care. They also paid 100% of the bill to send me to UCSF (rated #7) for IMRT radiation (which came to a little over $200,000.00 I might add). I put together a binder (4" thick) with medication information sheets, business cards, Dx information, treatment options and notes, that my wife transcribed at all of my visits. I spent a solid month on line researching everything I could find and made my decisions based on the highest standards of care available. It was the most important "project" in my life - possibly saving my life. I also have 2 close friends, one a research oncologist and the other a pharmacist and that has been very useful also. However ALL of the information I acquired anyone could get with some focused surfing on the internet. I did parallel research on benefits and financial aid. Great advice Danny. If more people "got into" their treatment, it might even improve the odds.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#49432 05-08-2003 04:05 AM
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Gary,
It sounds like you were much more of an activist and more thorough than I from the very beginning. My wisdom comes in hindsight from experience. In the beginning, like most of us, I , who knew absolutely zip about cancer, received my information from the doctors and did whatever they told me. I never heard of IMRT until I came to OCF and it was never discussed by any of my doctors.

Recently I emailed my radiation oncologist, who is very taciturn, and asked, " which kind of radiation did I have, IMRT,or regular?". He emailed me his one word reply: " regular ". Later my oncologist, who is very affable, explained to me why regular was probably better in my case, but the man who radiated me saw no need to explain anything.

When we are first diagnosed and every thing is spinning and time is of the essence, most of us don't stand back and do research...I didn't. MD Anderson's reputation is so stellar...who was I to question the experts. And, I do feel like I got excellent treatment...but that does not change the importance of being informed or the need to be your own advocate.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#49433 05-08-2003 01:23 PM
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Hi Danny,
It was either do the research or run through the neighborhood screaming and holding pity parties. LOL! I work as a consultant in the radiological devices field and worked for the very same company that built the LINAC that I was treated on. I just discovered IMRT days before I was scheduled to have XRT. My Head and Neck surgeon who was ordering the treatment protocol hadn't heard of IMRT either -I had to bring it to his attention. He is a great doctor, by the way, and I have complete confidence in him.
I have heard that XRT is preferable for certain types of cancer.
I had plenty of time to ponder things while my face was bolted to that table every day (but it would have been too late by then). It was overwhelming -Pull my teeth or not? 12+ hour surgery or not? Chemo or not? Radiation wasn't an option -OK -what type of radiation?. All of them being tough choices and possibly a one shot choice at that with, at very least, major quality of life issues attached to it, not even getting into the morbidity aspects. Whew! And I hate doctors - I don't go to them unless I'm dying -haven't had a physical since the 60's and don't like taking medications of any type -not even aspirin. And now I'm stuck in the middle of the system (at least that what it feels like). Doctors appts every 2 months, CT's, MRI's, PET's, bloodtests (did I forget to mention that I hate needles). Well my only explanation is the the strength to get through all of this did not come from me. The good news is I'm still breathing. I try to stay focused on what I need to do today and that helps a lot also.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
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#49434 05-08-2003 05:28 PM
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Hi folks,

I have another thought: Do you suppose by some quirk of fate (Murphys law etc.) the people with a talent for endless studying, 8 years or more of schooling, born into sufficient wealth to afford medical school, are geneticaly predisposed to having bad people skills, lack common sense, and worse, attract and surround themselves with other people with the same personality flaws....Makes you wonder. :p


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#49435 05-08-2003 06:08 PM
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It is easy to be cynical , but I find that doctors, just like lawyers, school teachers and bus drivers come in many shapes and sizes. I think that most of the doctors that I have met, especially in cancer care are very dedicated physicians and I respect them for their knowledge. Of course, some are outgoing and have good people skills, some don't and some are arrogant, just like all the other people that you encounter in life.
I am thankful for the doctors, especially their knowlege and dedication.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#49436 05-09-2003 05:18 AM
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The difference is that with a very few exceptions the others on your list aren't dealing with people whose survival is at stake.

People win large claims for emotional stress or some other such damages all the time in todays courts. What about the days and weeks of stress waiting for a test or report to find its way to the patient? Or the years of anxiety wondering if the treatments were done correctly, (or in my case when the radiation machine broke down for a week extending my pain and suffering.) Or the day your in the waiting area and you over hear the Doctor yelling at someone on the telephone (a personal call) and you wonder if that will distract him enough to miss something during your 3 month checkup. (yes this happened to me) And even when you end up waiting for 1 and 1/2 hours past your appointment time because some idiot didn't hit the return key on their computer so you were never registered. (even though your sitting in plain view in the waiting area and there is no one else)

Yes we are all human and subject to a variety of limitations. BUT they are the ones to have chosen to go into medicine. Therefore because lives are at stake and because the system doesn't do a very good job of weeding out the worst, we should be able to demand some kind of quality assurance. (Just for the record lawyers and teachers should be subject to penalties when they don't do higest quality work as well) The big problem is you don't get a chance to review the quality of their work before you start. I don't like buying anything I can't see first.

I see I have begun to rant...curiously I didn't really know how much this was lurking in my mind...Damn now I have to find a therapist.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#49437 05-09-2003 03:30 PM
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I think that I will seek penalites from my dry cleaner for not putting a straight crease in my trousers. He chose to be a dry cleaner and he must take responsibility.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#49438 05-13-2003 05:09 PM
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Rant away baby!!!! We all understand....we've been there! LOL

Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#49439 05-14-2003 08:00 AM
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I've got my beefs with doctors as well, both on the dental and medical side of things. But for every negative I have found with one of them, I have found another doctor who exemplifies the exact opposite. I would guess that if you ran doctors through a survey, you would find, that like those of any other profession, they follow a normal bell curve. There are some that should have the licenses revoked, and others at the top end of the scale which boarder on sainthood. Most in the middle. You would find some who have no people skills and some who will spend the caring time it takes to help you through a difficult diagnosis or outcome with compassion and understanding. I find Mark


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#49440 05-14-2003 11:04 AM
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This time you win. Every thing in the world is alright. We all gave our selves this disease so we get what we deserve or worse. At least I know my badly creased pants won't show in my coffin.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#49441 05-14-2003 04:35 PM
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This response I really don't get. All is not right in the world, which is obvious, and which I never claimed. On the contrary there is much wrong with it, including in a small part, (but certainly not at the level of the real horrors that continue unabated each day) the issue of not taking responsibility for ones actions. And I never said that we all gave ourselves this disease and that we deserve it. I said that 75% of those with oral cancer came to it through a poor choice, the use of tobacco and alcohol to excess, which is an established fact, not my opinion. I also stated that of those that have had this disease (at least in the last fifty years, my bell curve period) that particular group had weighted the cause of getting oral cancer towards a poor lifestyle choice rather than just the luck of the draw as in many diseases. I don


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#49442 05-15-2003 02:57 AM
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Mark,

This is just my humble opinion, but I think it is time to put your feud with Brian to rest. Your posts are very welcome here because you have been through this fight and can offer valuable insight. You seem to be a very caring person and are truly trying to help. However, making smart aleck comments to Brian are not helpful. No one who read his entire post would think he was suggesting that all cancer patients brought the disease on themselves or that they deserved to get it. And, no one in his right mind would think that he was saying that all is right with the world.

Everyone is entitled to his opinion, but please try to keep pettiness out of it. People come here for help and nit-picking and back-biting is just not helpful.

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#49443 05-15-2003 06:58 AM
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Guys..I apologize for being a bit flippant with my remarks about the dry cleaner. My point was a simple one. Obviously there are good and bad doctors ,dry cleaners, and even lawyers. (like myself ).I find that most professionals, especially doctors,are very dedicated and really care about doing a good job, although at times, of course, we wish that some of them could be a bit more sensitive.

Although I have been afflicted with this dreaded disease I feel no bitterness toward anyone, not even to God, if she exists.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#49444 05-15-2003 04:48 PM
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There is no personal fued with Brian. My reply was based on the fact that I really don't have time to argue and waste that energy simply for the sake of arguing.

Obviously I feel pretty strongly that several things must change if we are to see progress against all serious health problems.

It should be clear from my posts that my beef is with the low side of Brians bell curve: Those individuals that make life or death decisions for us but through omission, neglect, ignorance or any other errors, cause added pain or shortened life. In my OPINION there is very little mechanism in the medical system that forces these people to either catch mistakes early and improve our plight or allow us to screen them out of our personal health care portfolio ahead of time.

Excusing these "professionals", we rely heavily upon, is not going to make anything better. Neither is tolerating and defending the current status quo.

I do not require nor need any one to agree with my opinion. I feel comfortable that my OPINION is logical, and rational. Further:

Is any one perfect? NO

Do I know it all? NO

Should we accept a certain level of failure amongst the successes? Of course! Perfection is impossible.

Should we strive to minimize failures? Absolutely!

I doubt there is any disagreement on these points.

Now :

What are the best ways to minimize these failures?

Can these methods be applied by everybody or only to those in a position to be their own advocates.

Besides courts and lawsuits, what other ideas would help?

I apologize for the fact that:
The gloves came off (this is a hockey term) about the time my opinion post of what I see as a fairly serious problem, was somehow on the same level of importance as laundry.

There sometimes seems to be a tendency here, to miss the bigger picture of what really is the fight we are engaged.

Since I love all of you as I do my family there is no pesonal ill feeling towards anyone.


P.S. If any medical professionals read this or my previous posts, here is my disclaimer: My opinions are not the opinions of this web site nor the opinion of the others that post at this web site. They are in fact my personal opinions which I alone stand by. Frankly if you are a good medical professional then we probably agree. If you are low on the bell curve...how about a new occupation.

I will close with this quote:

To speak of atrocious crimes in mild language is treason to virtue.
EDMUND BURKE


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#49445 05-15-2003 07:52 PM
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Brian...here goes. You may get pissed off and kick me off this site. I hope not, because I have the utmost respect for what you have given us in this forum.

But.....I take offense at the fact that you seem to "assume" that we brought this disease on ourselves. Yes, many might have, including my husband who drank and smoked too much, but the oncologist has told us time and again to not blame his alcohol and tobacco use on this disease. The abuse has been something that he overcame years ago.

There are people who have never smoked or drank who are fighting this disease. There was a 4 year old child on our local news who died this week of the same affliction. How do you dismiss this?

In the law of averages, does 25% not mean anything to you? And for the record, yes, there are very stringent laws that protect you in a restaurant setting. Just ask any of us who own one. The health department is there for you once a friggin' month! There are many laws who protect your health.

On a government front, my nephew has been in Baghdad for three months.....protecting your ass from something highly more deadly than any restaurant fungus. Have you given him any credit? And as far as the car you are driving....well you bought it. Did you not make sure there was a warranty on it? Stupid if you ask me.

We might have given ourselves a bigger chance of catching this disease, but did you know about the symptoms and what to do about them before you were condemned for past behavior? I know we weren't.

Hindsight is always 20/20. But how many of us still wear glasses?

There are shitty doctors out there. Thank God, it seems like you never had to deal with them.

I've sat in the waiting room with my husband for over two hours while a hospice patient was falling out of his wheelchair waiting for help. We actually caught him a couple times before he hit the floor. All he needed was blood counts and his wife was beside herself. It was all she could do to get him in the cramped waiting room in his wheelchair. It was so bad, that when my husband's oncologist came in, I blew up.

He had NO FRIGGIN' clue what was going on in his own waiting room...where my husband had been or where he was at in his treatment. Just took my husband's weight, looked at his damn blood results from the week prior and expected me to put up with it. I WENT OFF....told him exactly what I thought of his inhumanity and watched as his nurses came off the floor a foot when I slammed the door to my husband's exam room and went to the parking lot to cry.

Do you even care what his response was? "His office was getting too busy. We would have to put up with it!!!!!!!" Brian, this is one of the leading oncologist's in the Tri-state area. (John-Hopkins, included)

The hell with them. They don't care. At least some of them don't. Don't try to tell us that it's our fault. We didn't ask for this shit.

This is bull. We are here to fight the same enemy. Get over it.
You are no damn better than the rest of us. You've just survived longer than most.

Mandi

P.S. Screw your "bell curve"

P.S.S. What "real" questions would you rather address? Your mortality?


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#49446 05-16-2003 04:54 AM
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Being a lawyer I have spent a good bit of my life arguing and debating, but I find these days that I don't enjoy it as much as I used to.I guess, because I think it is pointless and after having faced cancer, I would rather spend my time doing other things. I am a little amazed and taken aback by the level of Mandi's vitriolic attack on Brian. Gosh, this guy has dedicated his life, money and time to helping people like us. Most of us, including myself, have done nothing but worry about ourselves and our loved ones.

Brian is about the last person who would cast blame on anyone for having oral cancer. His empathy is obvious from reading any of his postings, as well, I believe, is his even handedness in discussing issues. Facts are facts...drinkers and smokers are more likely to have oral cancer and drinking and smoking are preventable. I am a non smoker and rare drinker who still got oral cancer. I have noone to blame, but for all I know I might have gotten it from sexually transmitted HPV virus.

Those of us with this disease have been dealt a bad hand. I just try to make the most of it and enjoy life as best that I can. I am very thankful for dedicated, caring people like Brian, who create forums like these that allow people like us to express our feelings. I have no problems with anyone expressing his or her feelings, but I do have a bit of a problem understanding directing your anger towards someone as unselfish and caring as Brian.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#49447 05-16-2003 05:06 AM
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Mandi,
You seem to have alot of anger, which being the caregiver for my husband, I can understand, but to lash out at Brian is really helping noone. I have been a member of this forum for almost three years and have read every post since. Brian has always been supportive, caring and informative. He does state facts, which frankly I am happy to have. However, just because he states that tobacco is a known cause of oral cancer does not mean he thinks everyone who uses tobacco deserves to get this cancer. In contrast, he is probably the person fighting this cancer the hardest by starting this web site and all the other things that the OCF does.
I always like to hear everyone's opinions and ideas about things, as we learn so much from each other, but personally attacking someone, especially Brian, is uncalled for.


Julie
Wife to Kelly
SSC tonsil Stage IV
July 2000
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MANDI You can post your screwed up distortions this time. I am leaving them so everyone else can see how off the wall and stupid your posting really is. But this forum is not for this kind of personal attacks and issues not related to oral cancer. Save this stuff for some other place. This is the only posting of this type that will be left on this forum. Any other personal attacks on me or anyone else, and it will be your last posting on OCF.

What does your family member being in the service in Baghdad have to do with anything related to what we are talking about on an oral cancer forum? I did my time in Vietnam long ago and I don't need your sorry ass, protected by veterans like me, to tell me what


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#49449 05-16-2003 06:19 AM
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Brian,
I will keep you in my prayers that all turns out well. I know you had to respond to that post, but please don't let it get to you. There are so many people out here who admire and respect you for all you have done and continue to do. Hopefully if she choses to respond it will be to apologize. She apparently has much anger that she does not know how to deal with.

Julie


Julie
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SSC tonsil Stage IV
July 2000
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Mark, Thank you for a nicely worded, logical response. We are not on opposite sides of this thing, and think more alike than differently.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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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!


Reborn June 27, 2001
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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.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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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.


DonnaJean
#49454 05-16-2003 04:55 PM
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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.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#49455 05-16-2003 05:06 PM
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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

#49456 05-16-2003 06:02 PM
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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


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#49457 05-17-2003 05:12 AM
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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. smile laugh smile

Rainbows & hugs, wink
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. cool


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#49458 05-17-2003 05:43 AM
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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'

#49459 05-17-2003 05:45 AM
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Mandi


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#49460 05-17-2003 07:21 AM
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This is my first posting here, and perhaps my only one, I am not a patient or a caregiver, but I do have something in common with at least Brian. I manage a non-profit foundation /charity. I watch many other organization's web sites and message boards to see how our organization can improve itself and keep the quality of what we offer at the highest standards. I have been intrigued by OCF since I first saw it as a beautifully designed, small, 20-page web site only 18 months ago. During my returns to it I have seen it blossom into a sophisticated, vibrant, and content rich environment with hundreds of pages. In many respects I have stolen from the OCF effort, as the example it provides is one of the better I have found, regardless of the size of the organization. You can imagine my surprise to hear in a communication from the foundation last week that it has no employees, no office etc. and that it is pretty much just Brian. I am amazed to say the least, that so much has been accomplished in such a short period of time with so few resources. I am particularly impressed with the family of posters that has populated the site, the tone of their postings, and the quality of not only the technical information that is shared, but the sincere empathy that posters have for each other. I have not found this at many other sites, and none to the extent I see it here.

The recent dialog in this forum obviously caught my attention. And I wish to share an outsider's observation with all of you. In all organizations, not only the success of the entity but the feel, the quality, and mood of everything that organization or charity does, comes down from a central point. Someone who has the vision, the passion, and embodies the core values of that organization, sets the mood in their manner in the office, in their passion for an idea, and in their compassion with other individual's struggles, be they employees, customers, or patients. That person sets the tone that establishes everything that follows. I suspect that in OCF this is also true. I think that the quote that is in Brian's sign off in each message says it better than I can, and it would appear that he tries to run OCF in that manner. What I have learned from my visit to OCF today and your founders last posting, is that a true leader also knows how to maintain balance and perspective, even if his own weakness are bared and revealed to accomplish that balance. Brian has a command of words that can cut, but it appears that they can also build bridges back to what has been cut. Only someone who really cares would take the time to do so. It is much easier to hit the delete button.

(This message edited to remove posters organization and name from signature by Brian Hill)

#49461 05-17-2003 08:15 AM
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Vietvet1968,

Bravo!!! Well said. You are welcome here anytime. And the best of luck to you in your own endeavor.

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#49462 05-17-2003 04:25 PM
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I think we have sufficiently beaten this issue to death. I am closing this thread of messages to new posts.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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