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Very Discouraged Disappointed Depressed Frustrated

LOVEOFMYLIFE
Posts: 4
Joined: Feb 2010

My wife was diagnosed with Large B Cell Lymphoma, T Cell rich (90%) in November 09. Lymph nodes, spleen, chest, intestines, spine are all involved. She had spinal cord compression from large tumors in her spine and could not walk until she got radiation treatments. I suspect she has residual damage as she cannot walk without a walker and is constantly falling. No one seems to care or has even looked into this.

She received three weeks of radiation treatments and only a few days later started R-CHOP. She has been hospitalized for 60 days, four different hospitalizations since the end of November. We spent Thanksgiving, Christmas and New years in the hospital.

When we go to the oncologists office everyone else walks in with their own two feet yet she is in a wheelchar and has to lay down in bed for her chemo. She received countless blood transfusions, platelet infusions, had multiple infections, was in septic shock and it keeps getting worse. Now her blood pressure bottomed out to 90/50. Her doctor's consolation yesterday was that another patient around my wife's age (55) died last week and that patients like my wife are very ill.

Yet my wife is being denied social security disability benefits. According to them this is 100% curable and she should be able to work a desk job. This also disqualifies her for SSI. We are trying to live on 339.00 a month that we get from a state medicaid program so minimal resoucres at a time when we are so vulnerable and in need.

This has been such a rude awakening and I have become such an angry bitter person. We have had countless problems at one of the local hospitals, a verbally abusive physician, infected port with staph, clostridium difficile infections, multiple large bruises from nurses who have been in too much of a hurry to put pressure on her IV sites after putting in an IV (that they missed) or drawing blood). I really don't feel her oncologist is even advocating for her needs-he runs a large factory and his nurses develop an attitude when I advocate for my wife--they seem to be too busy. In fact everyone to date has been too busy to even notice that my wife is profoundly depressed or that she cannot walk. I had to ask for physical therapy. I am always having to push for and fight tooth and nail for every little thing she needs which should be very obvious to others but does not seem to be, because everyone is pushed to their limit and are over worked.

I cry every day because I am so disappointed in human kind. After this experience if I were to ever get a cancer diagnosis, no matter how high the cure rate, I would rather die than go through what we are going through.

We cannot get another doctor because we are in a small city and there is NO competition. The largest medical center is 4 hours away. The local hospital is so dysfunctional it isnt funny. My wife had a heart rythm distrubance because they gave her too many IV fluids, he had hospital acquired staph infections, decubitus ulcer because the staff never turned him, her food tray was never ever correct (gave her fresh fruit when she was neutrapenic etc )in the 60 days she was there. They were asked to do a 3 day calorie count and they couldnt even do that correctly. I know that if this is happening to her, it has to be happening to other patients. They have gotten away with so much for many many years because there has been no reason for them to change and no one has dared to challenge them since they are the only hospital in town. I plan to deal with them at a later date. I do not want to sue but I have taken photographs, notes, voice recordings and have enough to make Michael Moores movie SICKO pale in comparison to what I plan to expose. I don't have the energy to fight with anyone right now but when all is said and done, I will come out fighting very very hard and all of this wil be exposed on a national level.

I feel very alone in this fight. Nurses should be advocating for my wife's needs but they are not and if I ever ever ask for one tiny single little thing they become hostile. I have killed them with kindness and tried everything imaginable. The cancer itself wouldn't be so bad if it wasnt for having to deal with all of the this and the forms, and applications and government for social security disability and medicaid, SSI, forms, paperwork, charity applications, doctor visits, treatments.

We are constantly on the run. The staff at all of the different clinis and doctor's offices are so insensitive--they want us to run to their office AT THEIR PACE totally clueless to the fact that it takes my wife two hours to get ready and out the door. Then when she is there, they are always in a hurry running around. WE need to remain calm becuase we just had to run from place to place for this or that and we cannot afford nor cope with the extra drama they are bringing to our table and into our lives.

Anyone else have these problems? Is it me? I tried to find a social worker to help us but they also do not have the time to help and everyone keeps pushing me off to someone else

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi LOML,
So sorry to hear of your wife’s diagnosis and ongoing trauma. I too live in a very rural area but fortunately I am only a few hours away from some of the best hospitals in the country. I’m sure you have explored options such as any relatives or friends that you could stay with that are nearer to large hospitals or universities? Here is a link to the CFAC (Cancer Financial Assistance Coalition). They also have links to organizations (such as the United Way) that can help you with a multitude of issues such as living expenses and transportaion to treatment (even airfare).

http://www.cancerfac.org/

Another suggestion would be to contact your local politician (state representative or congressperson?) for help and to report the hospital’s condition and lack of care. They may also be able to help you with the SS benefits.

I wish you and your wife the best of luck, don’t give up.
Cat

yesyes2
Posts: 462
Joined: Jul 2009

Hello Loveofmylife,

I am so sorry to hear about the difficult time both you and your wife are having. And I can totally understand your feeling of anger, sadness, frustration and depression. Having a cancer diagnosis for yourself or a loved one is a very trying time where you find you have very little control over your life or your loved ones. Be assured that it is not just you, and your feelings are normal and understandable. I really feel you could benefit from either a support group of cancer caregivers or a good social worker or psychologist. And if there is anyway for you to do it finding a new oncologist at a large medical center would be a great benefit for both of you. NHL can be ticky and better served from a major medical facility were there are experts in blood cancers. And it sounds like you would benefit from a new doctor as excuse me for saying this but your current doc sound like a donkey's rear end.
Feel free to post whenever you feel the need to unload. And please let us know how she is doing with her treatments.
Best to both of you.

yesyes2
Posts: 462
Joined: Jul 2009

Hello Loveofmylife,

I am so sorry to hear about the difficult time both you and your wife are having. And I can totally understand your feeling of anger, sadness, frustration and depression. Having a cancer diagnosis for yourself or a loved one is a very trying time where you find you have very little control over your life or your loved ones. Be assured that it is not just you, and your feelings are normal and understandable. I really feel you could benefit from either a support group of cancer caregivers or a good social worker or psychologist. And if there is anyway for you to do it finding a new oncologist at a large medical center would be a great benefit for both of you. NHL can be ticky and better served from a major medical facility were there are experts in blood cancers. And it sounds like you would benefit from a new doctor as excuse me for saying this but your current doc sound like a donkey's rear end.
Feel free to post whenever you feel the need to unload. And please let us know how she is doing with her treatments.
Best to both of you.

yesyes2
Posts: 462
Joined: Jul 2009

Hello Loveofmylife,

I am so sorry to hear about the difficult time both you and your wife are having. And I can totally understand your feeling of anger, sadness, frustration and depression. Having a cancer diagnosis for yourself or a loved one is a very trying time where you find you have very little control over your life or your loved ones. Be assured that it is not just you, and your feelings are normal and understandable. I really feel you could benefit from either a support group of cancer caregivers or a good social worker or psychologist. And if there is anyway for you to do it finding a new oncologist at a large medical center would be a great benefit for both of you. NHL can be ticky and better served from a major medical facility were there are experts in blood cancers. And it sounds like you would benefit from a new doctor as excuse me for saying this but your current doc sound like a donkey's rear end.
Feel free to post whenever you feel the need to unload. And please let us know how she is doing with her treatments.
Best to both of you.

yesyes2
Posts: 462
Joined: Jul 2009

Sorry, glich in computer, didn't mean to post three times. OOPS!!!

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Reading your story literally brought tears to my eyes and I commend you and your wife for hanging in there. I can't imagine how much extra strength it takes to cope on a daily basis. It sounds like your whole plan of care needs an overhaul. While this may seem like a daunting task the payoff would be well worth it. For example driving 4 hours to a larger medical center may not be as bad as what you are experiencing now. It really upsets me also to hear how the nurses are acting. As a nurse myself I just plain don't understand. I always advocate for my patients and their families. Start formulating a new game plan and find any advocates you can elsewhere. Once you start, the battle is half over. Things have a way of falling into place but it does take action. Keep a journal of all the events. Beat of luck and keep us posted.
God bless,
Mary

sparkling
Posts: 6
Joined: Feb 2010

I am so sorry to hear you are dealing with such heartless people. It's NOT the way it is supposed to be.

We've seen a few heartless doctors. I found that when we went back to our regular GP HE was able to point us in the direction of the heads of departments. We have been very lucky in this aspect. But....... one visit when my husband had pneumonia he had 2 horrible nurses, one a male, one a female. I called our GP and had them reported. I have since learned the male nurse was fired.

Advocating for a cancer patient is imperative to getting them what they need. This has fallen on your shoulders. Do you have any family members that can help with this?

I'm saying a prayer for you and your wife. I hope a compassionate doctor/nurse can be found.

Janie

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I AM SO SORRY YOU HAVE TO BE GOING THRU SOMETHING LIKE THIS AT SUCH A TIME AS NOW. YES, I CAN RELATE THE SOCIAL SECURITY PART OF YOUR STORY AS WELL. MY SON WAS IN A TERRIBLE AUTO ACCIDENT A FEW YEARS BACK AND WAS DENIED SSI. HE ONLY NEEDED IT FOR A FEW MONTHS.HE HAD A BROKEN LEG IN 4 PLACES AND WAS IN TERRIBLE PAIN AND NEEDED STRONG PAIN MEDS. HE WAS TOLD HE COULD DO A DESK JOB.I WENT WITH HIM TO THE SOCIAL SECURITY OFFICE AND THE PEOPLE(WORKING) THERE LOOKED TO HAVE THE BRAINS OF AN ICE CUBE. YET THE GUY ACROSS THE HALL IN HIS APT.COMPLEX WHO DROVE A BMW HAD AN APT. FULL OF PITBULLS AND SPENT THE DAY PLAYING ON A SKATEBOARD AND GOT FULL BENEFITS. NOT TO MENTION THE DISABILITY TAG ON HIS CAR.AT NIGHT THE HALLWAY SMELLED LIKE DOPE CITY COMING FROM THAT APT. WHATS WRONG WITH THIS PICTURE? SADLY IT GOES ON ALL THE TIME. THEY ARE TRYING TO CHANGE ALL THIS WITH AN OVERHAUL, BUT SADLY IT WILL MAKE IT WORSE FOR PEOPLE IN NEED AND BETTER FOR THE NON DESERVING, AS ALWAYS. DON'T MEAN TO SOUND SO NEGATIVE, BUT FACE IT, ITS THE TRUTH. I DON'T WANT TO KEEP ON WITH THE SOAPBOX BECAUSE I CAN REALLY RANT ON, BUT WHAT GOOD WOULD IT DO. IT NEVER HAS HELPED HAS IT. THIS COUNTRY IS HEADED TO HELL IN A HANDBAG AND VERY QUICKLY NOW. JUST ASK THE OLDER GENERATION OF HOW IT USED TO BE.
I AGREE WITH THE OTHER RESPONSES THAT YOU COULD TRY TO GET HELP FROM THE AMERICAN CANCER SOCIETY. HOPEFULLY THEY COULD AT LEAST POINT YOU IN THE RIGHT DIRECTION. MAYBE CALLING THE LOCAL NEWSPAPER ABOUT YOUR SITUATION COULD GET SOME ATTENTION AS A HUMAN INTEREST STORY.WRONG DOERS DON'T WANT ATTENTION OR EXPOSURE. YOU SURE NEED IT RIGHT NOW. CALLING THE DISTRICT CONGRESSIONAL OFFICE MAY HELP AS WELL. ITS GETTING CLOSE TO ELECTION TIME SO THEY MAY HELP. MAKE SURE YOU KEEP NOTES AS TO WHAT IS HAPPENING AND I AM SURE YOU ARE. THESE INCOMPETENT,MONEY HUNGRY SO CALLED DOCTORS SHOULD BE REPORTED FOR THE WAY YOU AND YOUR WIFE ARE BEING TREATED. THERE IS ABSOLUTELY NO NEED FOR IT. AGAIN,I AM SO SORRY FOR SOUNDING SO NEGATIVE BUT YOU ARE IN DIRE NEED FOR SOME HELP. YOU KNOW AND I KNOW ALL THIS RED TAPE IS ABOUT MONEY TO BE MADE AND IT IS A SHAME. I KNOW SOME ARE GOING TO READ THIS AND THINK, WHAT A BELLY ACHER, BUT WHEN YOU NEED HELP,YOU NEED HELP. PLEASE KEEP US POSTED AS TO WHAT HAS PROGRESSED. WE ARE ALL PRAYING FOR Y'ALL. YES, I LIVE IN A RURAL AREA AS WELL,BUT I HAVE GREAT ACCESS TO A CANCER CENTER WITH GREAT DOCTORS AND CARING NURSES. THEY PUT A LOT OF HOPE IN THINGS FOR ME. I COULD BRAG ABOUT THEM ALL DAY. IT IS TOTALLY UNFAIR WHAT YOU ARE GOING THRU. TAKE CARE, WE ALL ARE THINKING OF YOU AND YOUR WIFE. JOHN

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

It breaks my heart to hear this, I too agree with everyone else, try to get out of Dodge, and get to a better facility, it's easier said then done I realize, but it's something that would really help the both of you.........

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

What you are going through would be too much for anyone to bear without being depressed etc. So first off please know that your reaction to it is very normal! I am so so sorry that on top of your wife's diagnosis you have to deal with incompetence.

I read the prior answers to you and there are many great suggestions there. Support groups, a local politicion, or even finding some way to get to that medical center 4 hours away. Have you called the Leukemia/Lymphoma Society and/or the American Cancer Society? I beleive that they have resources set aside that can help people in a variety of ways. You never know, maybe they would have some helpful info for you. As an example, I know that our local regional Children's Hospital in Philadelphia has the Ronald McDonald House where families can stay to be near their children while they are in the hospital. Maybe there are resources like that...

My best to you. I'm rather new to all of this but already have found the people at this site are a lifesaver! Please stay in touch with us. It's like having a family that really gets it because for atleast part of your journey they've walked in the same shoes. Prayers to you and your wife.

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