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Re: Life choices
Glad that I found this thread tonight. I have found many sites, the Beacon one of them, to learn about smoldering myeloma and multiple myeloma. What I struggle with is to find a balance, to not become so consumed with myeloma that I don't live my life. To not holding my breath in between each blood test. To not overwhelming my husband with all these feelings while I try to figure it all out. Does anyone know of an online support group?
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Smittie - Age at diagnosis: 54
Re: Life choices
Hi Smittie,
The balance issue you bring up is a real challenge. You want to be informed, but you don't want to be consumed. It's an issue that comes up regularly here in the forum and in the articles written, for example, by the Beacon's columnists.
In our experience, there doesn't seem to be any universal solution to the problem. We would hazard a guess, though, that recognizing that balance has to be achieved is an important first step to accomplishing it.
We're a little confused, though, by your question "Does anyone know of an online support group?". Isn't that exactly what this forum is?
The balance issue you bring up is a real challenge. You want to be informed, but you don't want to be consumed. It's an issue that comes up regularly here in the forum and in the articles written, for example, by the Beacon's columnists.
In our experience, there doesn't seem to be any universal solution to the problem. We would hazard a guess, though, that recognizing that balance has to be achieved is an important first step to accomplishing it.
We're a little confused, though, by your question "Does anyone know of an online support group?". Isn't that exactly what this forum is?
Re: Life choices
Hi, Beacon Staff. I meant no disrespect. This is a great forum and I am new to it. For me, it is a place to learn about myeloma, talk about lab results, etc. To hear from the people who have done this longer. Learn from their experiences. It has not been the place that I go to when having a hard time in dealing with the emotions. Hope that makes sense.
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Smittie - Age at diagnosis: 54
Re: Life choices
No worries, Smittie. We didn't perceive any disrespect in your question.
You're right that many (most?) of the discussions here in the forum focus on what might be described as the "hard" (as in "solid", or "not soft") issues related to myeloma -- treatment options, treatment side effects, understanding lab results, etc.
The "soft" issues -- dealing with the emotional, psychological, and personal challenges of the disease -- don't get as much attention.
We're not sure why, since there's really no reason that those "soft" issues couldn't be discussed here as well. And we certainly want the forum to be as helpful to the community as possible -- on all kinds of issues, whether "hard" or "soft."
Could it be because there isn't a part of the forum specifically focused on those sorts of issues? Would it help to bring attention to them, and make people more willing to discuss them, if there were part of the forum dedicated to them?
Or is there some other way we could encourage discussion of such issues?
The other possibility, of course, is that people in general may not be as willing to discuss "soft" issues with people they do not know very well (or for some other reason). There was, for example, a suggestion recently about creating a new part of the forum focused on caregiver issues. No one commented on the suggestion.
In any case, you should feel free to raise here in the forum any questions or concerns that you have similar to those that you mentioned in your posting above. The forum is quite active these days, so we would be surprised if you didn't get a number of responses.
You're right that many (most?) of the discussions here in the forum focus on what might be described as the "hard" (as in "solid", or "not soft") issues related to myeloma -- treatment options, treatment side effects, understanding lab results, etc.
The "soft" issues -- dealing with the emotional, psychological, and personal challenges of the disease -- don't get as much attention.
We're not sure why, since there's really no reason that those "soft" issues couldn't be discussed here as well. And we certainly want the forum to be as helpful to the community as possible -- on all kinds of issues, whether "hard" or "soft."
Could it be because there isn't a part of the forum specifically focused on those sorts of issues? Would it help to bring attention to them, and make people more willing to discuss them, if there were part of the forum dedicated to them?
Or is there some other way we could encourage discussion of such issues?
The other possibility, of course, is that people in general may not be as willing to discuss "soft" issues with people they do not know very well (or for some other reason). There was, for example, a suggestion recently about creating a new part of the forum focused on caregiver issues. No one commented on the suggestion.
In any case, you should feel free to raise here in the forum any questions or concerns that you have similar to those that you mentioned in your posting above. The forum is quite active these days, so we would be surprised if you didn't get a number of responses.
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