Gynecologic Cancer Survivors' Support Group

I had been aching since day one of my cancer diagnosis to participate in a live support group.  The medical center in Annapolis was not willing to provide interpreters.  I was looking into joining a support group at MSKCC but then I was in remission so quickly that I did not have a chance to join a group for gynecologic cancer patients.  Online support groups can be good sometime.  I often felt something was lacking.  As I mentioned in a previous post, some did not meet my needs.  I wanted to look in the eyes of others.  I wanted a live dialogue not reading and responding to posts.  I could not find any local support groups.  Imagine my thrill when I learned about the Annapolis Wellness House and that they do have support groups.  I learned of their Survivorship Support Group a couple of months after the surgery.  I wanted to participate.  Annapolis Wellness House, a non-profit organization, said they wouldn’t provide interpreting services because they are ‘non-profit.’  I was hoping to find volunteer interpreters that would be available for the support group that met twice a month.  No luck there.  I was not in the mood for another fight for interpreting services because technically they were obliged to provide access.  I had just finished a tough battle with two medical centers for not providing interpreting services at my first oncology appointments.  Then I did not have any interpreter for the surgery last October.  I wanted to put my boxing gloves aside for a breather.  

I decided to schedule my first three-month follow-up visit back in August with Dr. Jewell on the same day that the Memorial Sloan Kettering Cancer Center's Gynecologic Cancers Survivors Support Group met.  I requested that the MSKCC provide interpreters for this meeting.  They did.  

The first support group meeting was wonderful.  I was a new member.  I introduced myself and said I just had my surgery a few months ago.  They remarked, “And you have all that HAIR!?!?!”  For some reason, I felt guilty that I do.  They told me not to but that I should feel grateful my cancer was detected very early preventing the need for chemotherapy and radiation.  Those women have been together for various amount of time.  They joined the group when their cancer went in remission.  Two members, however, had their cancer come back at a later time and the cancer has metastasized.  They are currently undergoing treatments.  The risk of recurrence is very real.  We often talk about whenever a new physical concern comes up even in the most random place such as the knee, we are quick to wonder, "Is it the cancer coming back?"  This is a very common fear especially after completing treatment and entering the remission phase.  This fear subsides over time.  But like for the two members, it came back.  We also laugh and cry together over the stupid things people say to us.  We talk about trying to figure out our new normal.  We discuss our sexuality often.  We agonize over how some friends are unable to handle our cancer and are unable to be there for us when we need them.  We agree that we are blessed that we were treated at the country's best cancer center.  The meetings are facilitated by this great social worker who has a theme for each month.  She gives us reading materials, mainly meditations, to take home.

At the first meeting, I told them that I lived in Maryland and couldn't come to New York City every month but I would come each time I have a follow-up with Dr. Jewell.  One woman pointed to the video conferencing equipment in the room and said, "Why not?"  I was taken aback.  "You are one of us now.  You need to stick with us."  I was touched.  I have gained new friends.  They openly embraced me.  Even though as a Deaf person, I am so used to video conferencing all the time.  I use it almost daily at my telecommute job.  I did not even think of it as a possibility for the support group.  The social worker said she would investigate this possibility further.  I waited patiently and was missing them in September and October.  I was back in November.  There was a new member from Trenton, New Jersey.  She was baffled, "You came from Maryland for this?"  I smiled and said, "Yep.  I love this group!"  Then another woman who comes once or twice a year piped in, "Hello I came in from Brazil! We don't have something like this over there."  She was awed.  If we need to connect, we find ways to make it happen.  

My social worker, along with a team of social workers, worked with the IT department.  They said they would give the video conferencing option a test run for the December meeting.  Ironically I was really nervous about the December meeting.  I really wanted it to work.  I did.  I needed my safe place and I needed to connect with women who get it.  My social worker notified me liked an hour before the meeting that the interpreters called in sick.  Dang.  I was discouraged.  She assured me they were trying to come up with a solution.  They decided to try and make VRI work with the video conferencing platform.  When I connected to them, I could see IT people scurrying around trying to make it all work out.  And it did!!! I was surprised that the VRI interpreting platform did work out nicely for this meeting.  I was on the other side of the country in San Diego piping in.  Initially, I was worried they might forget about me since I was not physically present in the room but they did not!  This is largely a Deaf-related issue, after having been left out by hearing people often.  They really meant it when they said, "You are now one of us!"  Whenever I nodded or shook my head, they immediately noticed and asked, "Naomi what do you think?"  If I raised my hand, they were quick to acknowledge it.  I didn't feel like I was miles away.  I was THERE.  Since it was during the holiday season, the social worker handed out electric tea lights for us to share the light at the end of the meeting.  She said she would mail me all the readings and the tea light.  When everyone lighted up their tea light, I used my iPhone's flashlight app.  I had to improvise!  

Today when I was going through my accumulated mail from the past month, I find a tea light.  I smiled.  I spoke with my social worker today.  We are going to try for on-site interpreters to be present in the room with the group members for the January meeting.  We are going to see which one works better: on-site or VRI interpreters for all future meetings.  I was also pleased to learn that I don't have to be a patient of MSKCC to continue participating in the support group meetings.  I have been considering finding a local oncologist now that I just need routine follow-up checks.

It is really nice not to feel alone.  I do have amazing support from my loved ones.  It's just not the same.  I just need to be with those who have gone through this battle just like I did.