Myeloma support group

I am deeply grateful for our myeloma support group.  Approximately 30 people (both with myeloma and "caregivers") meet once a month, organized by one of the couples in the group.  There's usually a speaker, a snack and then some check in time.  The speakers have been truly useful: a kidney specialist who clarified which numbers to look at, a pharmacist who explained the logic of the choice between  aggressive treatment and slow, incremental treatment, and especially the speaker from the International Myeloma Foundation whose numbers gave me such hope (last post).  If you want to become a true Myeloma geek, their web site is the best place to get educated. 

Part of what I value about the group is the ease in speaking about your disease status.  Most folks have had myeloma for several years, and all but one other has gone through at least one stem cell transplant.  Some people are in remission (no need of meds at the moment), a few are on the slippery slope of the disease in an aggressive moment with only limited tools left to use, most are in some kind of chemo program which is helping or keeping them stable (Gil's status).

I appreciate the reality check that the range of disease statuses are, too.  It makes my gratitude more grounded.  With everyone immersed in their own particular part of the struggle, it's easy to ask and to tell.

Outside of the group, I've noticed in myself both the discomfort of asking someone with cancer how they're doing as well as the discomfort of being asked and wondering what level or type of information they really want.   

Over the years at times I've been  hesitant to ask about some one's disease, wanting perhaps, through silence or comment, to convey the impression that I've gotten an optimistic impression of their status. (like my friend with a type of lymphoma which is, indeed, fairly easy to put into complete remission; yet in the past I've used that knowledge to let myself not always ask her what her disease status is)    I'm not sure all of what's behind my not wanting to ask, but I suspect some of it is a little bit of superstition that if I assume everything is ok, it will be.  Another piece may be feeling guilty that I have a kind of health that they don't (as though my asking might remind them of the injustice). Probably the last is the difficulty of wanting to express the "right" degree of concern without being maudlin, so silence is easier.

The flip side discomfort happens only occasionally when someone I don't know really well asks about Gil's disease status. I pause if my intuition is unclear whether they are just asking like a salutation "how are you" where "fine" is the socially appropriate answer, or for treatment number updates,  his sleep or moods, my sleep or mood or all of the above, non of the above. 

I've learned to respond with whatever degree of depth or intimacy my whim or our relationship elicits at that moment. If they want more, I figure they'll ask.

So, Kathleen's guide on how to ask someone with cancer what's up:

Do ask if you're thinking about it, but not if it's not relevant to you at the moment.

Ask what you're actually are interested in finding out (eg. mood vs treatment status)

Don't worry about expressing appropriate concern.  They're living with their cancer, and unless they're in the final stages, they're probably grateful to be alive and not in need of verbal hand wringing.  Caring curiosity will not offend.

In sum: ask for what you want to know and/or say how you feel and then move on to sharing the life you both have at this moment.

It's easy to do that in the support group.

Kathleen