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Wdnesday's Air


KatieB

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Gosh it feels like I haven't been in this forum in a while. So much going on with work- I keep waiting for the slow season...and then I realize we no longer have a "slow" season...events and conferences and diagnosis' happen all year round and it's a constant busy.

so this really isn't Just for Fun today---it's an Off Topic vent...

Yesterday was my in person lung cancer support group at the hospital. It's something that I facilitate as a volunteer- it's not sponsored by the hospital or LUNGevity so it's basically all me.

It's going into it's fifth year and I hope I can be honest here? I'm getting burned out a little. I have absolutely no help from other volunteers and I have no support from the hospital--they don't even post about the support group or put up a flyer once a month...all they do is let me use the conference space for the meetings.

Some months there will be over 10 people, other months just 1 or 2. It's a see-saw and It's exhausting to get ready for, purchase food for, and then have no one show up or one person in need show up and it's just me holding a one-on-one counseling session.

I've come very close to shutting down the group for good and then I'll get a phone call from a newly diagnosed person and that draws me back in....

Last month not a single person RSVPed for the meeting so I cancelled it (I was exhausted from planning HOPE Summit anyway) but then I got a call from a nurse in Dallas who told me her patient stood outside the locked doors and was LIVID that there was no group....well...she should have checked the website first or RSVPed right? My number, email and website are all over the flyers and internet. this Nurse ripped a hole thru me cussing me up and down until I told her I was a volunteer, doing this on my own time, and she could be my guest and have their own in person support group..... It just was so hurtful for me to be yelled at like that. The nurse ended up apologizing to me. I DID get in touch with that patient and you know what...she RSVPed for the meeting last night and SHE DID NOT SHOW UP.

I know there is a huge need for in person groups and I am proud to have been the first in the entire state but I'm feeling stretched thin and frustrated at the lack of attendance (due to the hospital not letting the patients know) that those I have helped in many ways for many years...aren't around to help me.

Help me with some words of advice friends.... I'm ready to just wash my hands of the people I thought were in my corner and who always "say" they want to help but are never around when I need them.

Thanks for letting me vent

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Vent away Katie! I think you’ve probably spoken for a lot of frustrated volunteers today. As a patient who would give a lot to have an in person lung cancer support group – I would hate to see it end because they are so few and far between. But no one can do everything alone – not for long anyway and only you can decide when you have done all you can. Perhaps a serious letter to the hospital, stating pretty much what you have stated here and more or less demanding some support would be helpful. While I’m not a big fan (although I volunteer for them myself), you might consider approaching the American Cancer Society – they do have volunteers and someone might be very happy to take over all the prep work for the meetings. I wish I lived in Texas – I would love to do it!

As for the attendance, I wonder if it is fairly common for the numbers to fluctuate so much. I remember Stephanie telling me that her “main” support group with just a general cancer support group that always had a fairly good attendance. She also belonged to an in person lung cancer support group, but she said that she didn’t think it was going to last because attendance was so spotty. I was pretty surprised that in a city the size of Seattle and its suburbs they couldn’t get enough attendance.

Then there are people who are just rude. 95% of the people I drive to treatment are wonderful and I feel so blessed to be able to do it – but I do occasionally get someone who seems to think I’m a high paid chauffeur with a company gas card and it is my duty to be at their beck and call!! Not much you can do but ignore them – most of them were that way even before they were sick.

Whatever you decide to do, remember you are very much appreciated by so many people. More than you will ever know.

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Thanks for taking the time to reply Diane. It means alot.

I actually have talked to the hospital and they connected me with their community marketing director who promised me the world...it sounded wonderful all the things she was going to do to promote the group...then I didn't hear from her for several weeks...found out she QUIT her job!

LOL

For some people it's a job...for others like me it's my life. I just wish I had more help.

I do believe a lung cancer group is much different than the general cancer ones...Steph was right. It does flux and it's mainly because when you feel SO BAD, you don't want to come to group...and when you actually feel good.....you don't want to come to group... lol

The majority of my members are new and they rotate in and out depending on how poor or well they are doing.

I'm ok with that cycle. I just wish we could reach more patients and not the random person one at a time.

Thank you for your encouragement. I wish you lived here too!!

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Well it sure does sound familiar. The person in charge at our local ACS kept promising to recruit more drivers - and when I finally called to see how that was going I was told she'd been promoted and moved to the Bay area!!

I'm not a good idea person - so hopefully someone will come along with a GREAT idea. In the meantime what about a post on craigslist or a community bulletin board - or maybe through the local newspaper - asking for a few volunteers. Our newspaper has a column once a month about local volunteer opportunities. I have to believe (it would be too disappointing otherwise) that there are some survivors out there, or family members of a patient or survivor, who would love to help if they were aware of the need.

Diane

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