Negativity On This Board!

All of the negativity on this board lately has almost made me want to give up and stop participating.  I can understand that people can be angry when they receive a diagnosis of myeloma - whether patient or caregiver or family or friend - and that they may feel a need to lash out or blame someone/something.  However this negativity does not help anyone and I would like to set record straight, at least from my experience.  I have been fighting this disease since 2002 and have seen my oncologist on a monthly basis for the entire time!  On top of this I have been hospitalised on 4 occasions and spent one month in hospice, have had blood tests on a weekly basis, blood transfusions every three weeks for one year -- I could go on and on, but the purpose is to say that I have NEVER found one person who was not fantastic!!  Doctors, nurses, pathology staff, radiotherapy staff, admin staff, cleaners -- every one of them doing an excellent job with the most positive attitudes possible.  Not one of them in any way made me feel as though they were only in it for the money!! So please, when you get angry about having MM, don't attack the medical staff -- in my experience I have been blessed to meet and to come to know all of these people.  In fact, the medical staff I have met are one of the bounties of having MM!!    Secondly, this idea that there is a cure for MM but that chemical companies are not giving it to us and that they are only in this for the money is also -- from my experience -- totally false.  I believe that these companies are all working towards making MM a chronic rather than a terminal disease.  They are inventing and modifying drugs in the hope of helping and they are making huge progress -- in just these last 4 years there have been gigantic strides forward, and if we had to be diagnosed with this condition, then now is the best time ever!! 

So please -- if you must be angry please do so somewhere else and keep this message board for those of us who want to be positive and who want to HELP one another.  I have gained so much information and support through this board and would hate to lose it.  PLEASE -- Stop being NEGATIVE - it doesn't help anyone, especially those of us who are aiming at living with myeloma!  Thank you, Cath

Good Evening Cath;

EXCELLENT POST!

Perhaps your super positive attitude has contributed to your therapy! Too bad you can't bottle it. I'd have my Dr. write a 'script for some.

Kevin

Thank you. Thank you from a family cancer victim (which sometimes I feel that I too was diagnosed with my mom and husband). And, thank you because I have worked in health care for 20 years. I have heard over and over again, how the government is keeping the cure for cancer a secret. PLEASE!

Yes, cancer sucks. But, so does heart disease, parkinson's, alzheimers and I could go on and on.

It is people like you that I admire. You have been successful battling this disease because of your personal strength and will power.

I have met so many wonderful people from my mom and husband's treatments. (rectal ca - mom/ hubby- prostate ca). I have a much closer relationship with both of them. I have been once again been reminded to understand that life is too short to waste. And, both of them, at this time are cancer free!

So, people, get out there and fight this! Be inspired by people like this!

Have a Merry Christmas to you, and I pray for a Healthy New Year!

lin 

Thank you Yvonne for your private reply and support.  With your specialist nursing background you would have been at the 'coal face' of helping people to meet the challenges of myeloma -- it would have been so difficult and now for you to also have cancer -- well, I admire your resolve to aim to get better so that you can go back to your nursing career -- WOW!  You truly reflect the kind of people that I have dealt with in the medical profession -- selfless and focused on assisting their patients to get better, no matter what!  I am not alone in my awe of you and your workmates and more and more often I am now reading letters in the newspapers and magazines from very grateful patients and families regarding their experiences with medical staff and hospitals -- in spite of all of the funding and staffing shortages.  When people have hands on experience and then try to understand the pressures that medical staff must work under they can't help but be in full admiration for the job you do. Thank you once again for your reply -- this board is wonderful for supporting each and every one of us and I appreciate the time you took to respond!  Best wishes for a safe and happy holiday season!  After 38 years of living 'down under', being  HOT at Christmas still seems wrong and I yearn for a really cold holiday!  Take good care, Cath 

Hello Cath;

'After 38 years of living 'down under', being  HOT at Christmas still seems wrong and I yearn for a really cold holiday!  Take good care, Cath'

We're in the midst of a storm scheduled to drop 6" by night fall and Sunday we're scheduled for at least 12" more. Send me the address of the nearest airport and I'll mail you down a yard full of the stuff. No charge, it'll be my pleasure to get rid of it.

My brother was in Australia for 6 months. Said if he ever left the States that would be where he'd move to!

You enjoy you holiday no matter how warm it is,

Kevin

I am glad that you're doing well and your "positive" attitude has benefit you so greatly; however, I feel the need to interject here.

 I was under the impression that this was a place for support.  A LOT OF PEOPLE struggle with this disease, not to mention are caregivers for family with this disease.  Unfortunately, not everyone is as fortunate as you.

Dear Mother/Myeloma I am in a very similar situation as (if you have read in my post Multiple Myeloma and Multiple myeloma and thalidomide) you will see that I have been repremanded for some negativity, however I believe some people deal with stress and difficult situations differently. Remember that I do not have cancer and some people here have a better outlook than I do. I can understand your frustration because I am trying to support and be positive for my brother which translates to lying to him and manipulating what the doctors tell me!!  You see, as i said before people respond differently and having been close to my brother for his 50 years of life, I know there would be no way he can digest the "truth" so I use the "smoke and mirror" method just like the doctors and hospitals who say his condition is "Very Sick" The doctors talk in circles and I have to rely on the internet to decipher the jargon ! but i do understand now and honestly I do not want to learn anymore as the tunnel out of this nightmare just gets longer !! 

Some people here have been "living" with myeloma and have some kind of remission  and they may have time to think about what could be next . WE DONT !! I have learned that multiple myeloma is not a death sentence but there are many different "sublevels" of M/M and stages but my brother has a very difficult type of M/M and the doctors have have given so little hope and such a short life expectancy (he was DX 7 weeks ago and I have been told 2 months to survive) now we all know that doctors are not God but when you depend on these professionals with all the latest technology and training you tend to believe what they tell you therefore I have so little time and so little hope that I have become a little angry and hope has turned into despair !!    Sometimes a shoulder or someone to talk to or just maybe a loud scream could help . but being stifled for being very upset would not offer any help either. You are very welcome to be angry or upset or sad or any other feelings you have . I can understand these feelings are directed to anyone , but I can understand that you may very well be quite upset at Multiple myeloma   good luck and god bless !!

Caregiver,

You're right.  MM is not a death sentence.  My mother was diagnosed with it over a decade ago so MM and I unfortunately aren't strangers.  Mom's health recently (within the last year) deteriorated and her doctor basically told me that there weren't any options left.  I refused to accept that, left my home in Los Angeles and moved to Florida.  I'm glad to say her condition has improved.  I, on the other hand, feel like I'm going out of my mind sometimes (thank god for xanax).  Mom has suffered many side effects as a result of all the treatment she's received:  neuropathy and blindness are the worst.  She can barely see so I do everything for her.  I also work because I have bills to pay.  It does help to come someplace and vent and talk to others who have similar experiences.  I'm not trying to be negative but it's frustrating and I dont think anybody should be reprimanded for coming here for support.  In all honesty, I have no place to go for support.  My siblings (who incidentally live in the same city as my mother yet refused to help her which prompted my move from LA) don't offer any kind of support whatsoever. If anything, my sister causes more problems but I won't go there.

 Hang in there, CG.  If you need to talk send me a private message. 

 

On 12/19/2007 MotherWMyeloma wrote:

I am glad that you're doing well and your "positive" attitude has benefit you so greatly; however, I feel the need to interject here.

 I was under the impression that this was a place for support.  A LOT OF PEOPLE struggle with this disease, not to mention are caregivers for family with this disease.  Unfortunately, not everyone is as fortunate as you.

I was under the impression that this was a place for support,too, but my negative comments got removed.  You are absolutely correct in saying,"Unfortunately, not everyone is as fortunate as you."

It is a sad state of affairs if a person, suffering from any type of feeling, fear, pain, sorrow, anger or yes even frustration or dissatisfaction with the treatments that they or their loved ones are receiving can not feel welcome and safe to post their message here. They should be able to expect at least compassion for what they are going through even if there are board members who do not agree with their comments because they personally have not had the same experiences. It is shameful to attack anyone just because they may have become so overwhelmed that they need to vent their negative feelings somewhere. This board is meant to be a haven of support and information. Please.....be more empathetic.