Lack of post treatment information & support

justadirl

During my year of treatment I received an abundance of support and guidance. After treatment you get the whole "hooray you've graduated from chemo." Then BAMO, you're on your own with no clue what to watch for, what's going to happen or where to turn.

You burn out your friends & family after years of issues. I feel like a hypochondriac only the issues are really happening. Chemo brain, fatigue, heart issues, blah blah blah. You can see them cringe when they ask how you are so you keep it bottled up & put on the public face. Nothing makes me want to scream my lungs out more than someone telling me what an inspiration I am. They have no clue they're looking at the iron bar reinforced concrete wall.

There is no support group in a three county radius. Seriously I can't be the only person needing this service out of the hundreds treated yearly.

I would like to start a support group, a post treatment guidance & information program. Almost a how to locate services & information class along with post treatment healthy living.

As I am not a health care professional I don't feel remotely qualified to facilitate this. Does anyone have resources I can tap into?

dlb823

I think it's great that you've recognized the need for post-tx support and want to do something about the lack of it in your area. I know even our mid-sized local hospital runs a workshop dealing with exactly what you're talking about -- the physical and emotional aftermath of tx and finding a new normal, both for patients and caregivers. So I'm wondering if you could possibly contact some of the larger comprehensive cancer centers in the Pacific NW, and see if they have an outline for that sort of program. Then maybe contact the speakers they use and see if they can help you further or recommend people in your area with the right kind of expertise.

Here's a list of NCI-designated cancer centers. Maybe start with one or two closest to you. http://cancercenters.cancer.gov/cancer_centers/can...

Good luck, and let us know how it goes! Deanna

Moderators

Justadirl, your idea to start up a support group sounds like it would be great and as you said, more than likely is badly needed if there is no support group in a three county radius of where you live. Where there's a will there's a way!

Good luck with it and keep posting!

Best wishes from the mods.

Ariom

Hi Justadirl, I am not in the US, but I was directed by our breast care nurse, when I was first Dx to a local support group, in the small coastal town where I live, which was started by a local woman. She had placed an add in our local paper, the Breast Nurse helped to contact other women in the area. Tthe group had been meeting once a month, for a year, with about 10 members, the first time I attended a meeting.

As it happened, after a few months of going to the monthly meetings, the woman who started the group had some other health issues and she asked if I would take over the running of the group. It has been nearly 2 years now and our numbers have grown to a membership of 22, fairly regular participants.

We have all ages and stages, some women in treatment and others who were Dx many years ago. We have a couple of ladies who have had a recurrence, or a second Dx, many years after the first.

Our meetings do not revolve around breast cancer, as such, unless there is someone who has questions or advice is asked for. We have speakers, go on outings together and attend BC forums. The support network is great.

I wish you all the very best in setting up your own group, it is a really rewarding, interesting way to receive support and also to pay it forward, by giving support to others.