I have been recently informed through a personal message that I should respond to answers to my questions. Please do not think that I am rude. Everyone who has responded has my deepest gratitude.
As I am sure all of you have felt when you were diagnosed, a huge kick in the stomach with the thought that "this cannot be happening". With all the terms – kappa , light chains, lytic lesions – I feel like Alice in Wonderland falling down the rabbit hole!
So please know that I am deeply grateful and read every response that I get to my many questions. Thank you again.
Forums
Re: Thank you !
Oh my! I'm sorry to hear that someone felt like they needed to say that. As this is a support board I would think that people respond to help support others not to be "thanked"
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Thank you !
I agree with blair77. This forum has provided many of us with answers, encouragement, and support and It is indeed unfortunate that you received such an email. Getting thru the emotional impact of the initial diagnosis is extremely difficult, and it will take some time to level off . Personally I don't think you ever get over it completely, however you will eventually accept the diagnosis and get on with treatment.
You mentioned all the confusing and strange things like lite chains, kappa, lytic lesions etc. It is important that you educate yourself about myeloma so you can better understand what is happening and why. The myeloma vocabulary can be confusing and difficult at first, but it is a necessary part of understanding myeloma. Your better understanding of myeloma will alleviate some of the fear and confusion you now have. If you haven't done so already, I suggest you join a myeloma support group. They can help you.
I wish you and your husband the best and I hope you will continue to post on The Beacon. It's a great source of information and help, and please don't feel obligated to answer anyone directly.
You mentioned all the confusing and strange things like lite chains, kappa, lytic lesions etc. It is important that you educate yourself about myeloma so you can better understand what is happening and why. The myeloma vocabulary can be confusing and difficult at first, but it is a necessary part of understanding myeloma. Your better understanding of myeloma will alleviate some of the fear and confusion you now have. If you haven't done so already, I suggest you join a myeloma support group. They can help you.
I wish you and your husband the best and I hope you will continue to post on The Beacon. It's a great source of information and help, and please don't feel obligated to answer anyone directly.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Thank you !
I've been really surprised at the responses so far in this discussion. They are exactly the opposite of my initial reaction to the original posting.
I also think it speaks volumes about what a person thinks of this forum when they call it a "support forum", as if it was a forum run by a company as a way to provide help to people who have purchased the company's products or services.
I think "community" is a better description of what this forum is intended to be. I also see it described that way regularly here in the forum and elsewhere. And there are at least two things that help communities function well.
One is that people realize that communities are about two-way, not one-way, relationships. When someone in the community needs help, others in the community offer assistance. When that same person can offer help and support, they return the favor they've received (or will receive in the future).
The other is that small signs of courtesy and respect, that require very little time and effort, can make a big difference. This is such a simple, basic thing – the kind of thing your parents teach you when you're 3 years old – that I've had trouble understanding why those who have posted so far in this discussion have failed to recognize or admit it.
I also think it speaks volumes about what a person thinks of this forum when they call it a "support forum", as if it was a forum run by a company as a way to provide help to people who have purchased the company's products or services.
I think "community" is a better description of what this forum is intended to be. I also see it described that way regularly here in the forum and elsewhere. And there are at least two things that help communities function well.
One is that people realize that communities are about two-way, not one-way, relationships. When someone in the community needs help, others in the community offer assistance. When that same person can offer help and support, they return the favor they've received (or will receive in the future).
The other is that small signs of courtesy and respect, that require very little time and effort, can make a big difference. This is such a simple, basic thing – the kind of thing your parents teach you when you're 3 years old – that I've had trouble understanding why those who have posted so far in this discussion have failed to recognize or admit it.
Re: Thank you !
Speaking of volumes ... The word 'support' is part of the mission statement on the Beacon home page (click on "About Us"): " The mission of The Myeloma Beacon is to improve the treatment, care, and support available to current and future multiple myeloma patients worldwide."
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Thank you !
Hi Mildred,
I second what blair77 and dano said. In my opinion, a thank you is nice, but certainly not required or even necessarily expected.
To me, the best way to say thank you is to share what you've learned as you gain more experience with the disease, helping others who are not as far along the path as you when they ask questions. We all start out as pretty ignorant about this disease; I'd never even heard of it before I was diagnosed with MGUS back in 2009.
And I really like Cheryl G's two points about a "community." Well said!
I second what blair77 and dano said. In my opinion, a thank you is nice, but certainly not required or even necessarily expected.
To me, the best way to say thank you is to share what you've learned as you gain more experience with the disease, helping others who are not as far along the path as you when they ask questions. We all start out as pretty ignorant about this disease; I'd never even heard of it before I was diagnosed with MGUS back in 2009.
And I really like Cheryl G's two points about a "community." Well said!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Thank you !
I also don't feel "thank you's" are necessary on this forum. I think it's implied that we are all thankful for any answers or information we receive here. To be honest, there have been times where I saw that there was a new post on a certain topic, got excited and opened it, to then be disappointed that it was "only" a thank you! 
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Thank you !
Wow ! It seems that I have opened a hornets nest and for that I am terribly sorry, more sorry then you can realize.
Since my husband has been diagnosed in September, my anxiety has been over the roof. I have lost ten pounds and cannot eat from nausea, as I am sure all of you have. When my husband was diagnosed I searched the Internet and found this and again I am sorry if I did not know the correct protocol. I told my doctor that I had found this site and he highly recommended it.
Yes, I asked many questions and many kind people have answered me, and as Cheryl stated it, is a two way community and I promise you, Cheryl, if I knew what I was talking about concerning this horrible cancer, I would respond.
I think what bothered me about your statement is your reference to how our parents raised us. I am sorry, but I took that as a stab at how I was raised. You do not know me, nor do I know you, but I am not the rude person that was raised by a bunch of ill-mannered parents. Forgive me if you take this wrong, but I came here when I was scared and if I forgot to say thank you to an answer, I again apologize.
Actually, when I received that e mail from that person, I was taken back, I thought "how can I respond to someone's answer when I do not know anything yet about this cancer and have come here to find out." It also saddened me because it sort of reminded me of children and almost turned me off and this saddened me because whenever I feel that awful fear that we all experienced, I would come here and find answers and yes comfort.
I did not come here for someone to assume that I am ill mannered and to teach me manners that I have learned and practice daily.
So again thank you to all that have responded to my questions and this post. In the future, if I am still here, which I highly doubt after this episode, I will remember to say "thank you ".
May all of you be well and everyone who is diagnosed with this cancer will be in my prayers.
Since my husband has been diagnosed in September, my anxiety has been over the roof. I have lost ten pounds and cannot eat from nausea, as I am sure all of you have. When my husband was diagnosed I searched the Internet and found this and again I am sorry if I did not know the correct protocol. I told my doctor that I had found this site and he highly recommended it.
Yes, I asked many questions and many kind people have answered me, and as Cheryl stated it, is a two way community and I promise you, Cheryl, if I knew what I was talking about concerning this horrible cancer, I would respond.
I think what bothered me about your statement is your reference to how our parents raised us. I am sorry, but I took that as a stab at how I was raised. You do not know me, nor do I know you, but I am not the rude person that was raised by a bunch of ill-mannered parents. Forgive me if you take this wrong, but I came here when I was scared and if I forgot to say thank you to an answer, I again apologize.
Actually, when I received that e mail from that person, I was taken back, I thought "how can I respond to someone's answer when I do not know anything yet about this cancer and have come here to find out." It also saddened me because it sort of reminded me of children and almost turned me off and this saddened me because whenever I feel that awful fear that we all experienced, I would come here and find answers and yes comfort.
I did not come here for someone to assume that I am ill mannered and to teach me manners that I have learned and practice daily.
So again thank you to all that have responded to my questions and this post. In the future, if I am still here, which I highly doubt after this episode, I will remember to say "thank you ".
May all of you be well and everyone who is diagnosed with this cancer will be in my prayers.
Re: Thank you !
Cheryl,
This poor woman comes on here looking for help and answers to her questions concerning her beloved husband's illness, and you get bent out of shape because she neglected or forgot to say thank you? How petty. To me, everything she has written in her responses exudes her gratefulness for receiving the help that she was looking for. To me, that is the same as a thank you because I can read between the lines and see it there.
Mildred,
Please do not hesitate to come back here to look for answers to your questions. This is, by far, the best resource on the internet for this dread disease and no one should be made to feel unwelcome.
This poor woman comes on here looking for help and answers to her questions concerning her beloved husband's illness, and you get bent out of shape because she neglected or forgot to say thank you? How petty. To me, everything she has written in her responses exudes her gratefulness for receiving the help that she was looking for. To me, that is the same as a thank you because I can read between the lines and see it there.
Mildred,
Please do not hesitate to come back here to look for answers to your questions. This is, by far, the best resource on the internet for this dread disease and no one should be made to feel unwelcome.
Last edited by Blackbird on Fri Oct 17, 2014 5:05 pm, edited 1 time in total.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Thank you !
Hear, hear, Cheryl. Well said. I had exactly the same reaction you did.
And Dano, I don't see any conflict between what Cheryl said and what you quoted about the Beacon's mission. Communities happen to be one of the most effective ways to educate and support people.
I'm sorry you're hurt or offended, Mildred, that somewhat reached out to you privately, rather than in front of everyone else here, and offered you some advice. I would not be surprised if it was done, at least in part, to make it more likely that you'll get more help in the future.
I'm also sorry you were personally offended by Cheryl's statement that basic courtesies are "the kind of thing your parents teach you when you're 3 years old". I personally thought that statement made her point particularly powerfully, and I don't think it was aimed at you in particular.
No one here expects someone who is newly diagnosed, or caring for someone who is newly diagnosed, to start helping others or offering advice here in the forum. I certainly don't have that expectation, and I doubt that you were told that by whoever contacted you. One reason I help out when I can here in the forum, however, is because of the respect most people here show each other, even when they are in the midst of literally life-and-death situations.
I, for one, would hate to see that aspect of the forum change.
And Dano, I don't see any conflict between what Cheryl said and what you quoted about the Beacon's mission. Communities happen to be one of the most effective ways to educate and support people.
I'm sorry you're hurt or offended, Mildred, that somewhat reached out to you privately, rather than in front of everyone else here, and offered you some advice. I would not be surprised if it was done, at least in part, to make it more likely that you'll get more help in the future.
I'm also sorry you were personally offended by Cheryl's statement that basic courtesies are "the kind of thing your parents teach you when you're 3 years old". I personally thought that statement made her point particularly powerfully, and I don't think it was aimed at you in particular.
No one here expects someone who is newly diagnosed, or caring for someone who is newly diagnosed, to start helping others or offering advice here in the forum. I certainly don't have that expectation, and I doubt that you were told that by whoever contacted you. One reason I help out when I can here in the forum, however, is because of the respect most people here show each other, even when they are in the midst of literally life-and-death situations.
I, for one, would hate to see that aspect of the forum change.
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