We spent 3 days thinking that Meg had breast cancer. During that time, I started thinking about
the new community that she was going to become a part of – or, I guess, that we were going to become a part of. You see so many advertisements for breast
cancer foundations, awareness events, and fundraising campaigns. I glanced through some of the materials they
gave us at the oncology office, and it seemed like there were three types of
support groups – breast cancer, prostate cancer, and then everything else. As tough as that weekend was, the fact that
she probably had breast cancer did provide me with some small level of relief –
at least this was something common that they know a lot about, and that so many
other survivors had beaten.
Obviously, it turned out not to be breast cancer. When they said gastric cancer, I didn’t
really know where to turn. I searched
around on the internet, and found a few forums, but they were sparsely
populated. People would post questions,
and responses took weeks or months to trickle in. I found a few blogs, and while they provided
me with some information, they didn’t really provide the opportunity for
support or interaction. A neighbor
recommended a local facility called “Life With Cancer”, but again, they didn’t
have anything specifically for gastric cancer.
It seemed impossible to find other people fighting the same battle.
About two months after Meg’s diagnosis, I was back on those
same forums, looking for more info. Now
that I understood a little more about the lingo and the treatments, I dug a
little further through the postings. On
the 5th or 6th page of one topic, someone commented that
there was a facebook group for stomach cancer.
But it was a private group, so it could be tough to find if you didn’t
know the exact name of it. It’s called
“Stomach Cancer Warriors and Caregiver Family.”
You have to request to be added, and then one of the admins will give
you access and ask you to explain why you joined. I believe the group was started in 2011, or
early 2012. When I joined there were
around 100 people, now there are over 250.
There is a lot of information there. You can browse way back and see the journey
of other patients. What treatment they
got, what kind of side effects they had, how they responded. You can do a search for your treatment and
read some conversations that people have had about it. (Although, for some
reason, tonight the search function is only going back two months, which is
leaving out a lot of information. I’m
hoping this is a temporary bug.) You can find out what kind of trials other
people are on. You can learn what some
of the newest drugs are. You can hear
unfiltered opinions about people’s experiences at certain hospitals, or with
particular doctors. You can ask
questions about anything and get responses from several people within a few
hours. You can talk to some long-term
survivors. You can find others who are
in similar situations as you. You can
become part of this community.
But, that is both the upside and the downside. This community, the stomach cancer community,
is not an easy one to be a part of. In
addition to all of the information that is available in the group, there are
also all of the struggles and heartbreaks.
Some of the earliest members of the group, the ones who were providing
so much information when I joined, are no longer with us. People go on there to not only share
information, but also to share their troubles, and to find support when things
are not going well. I remember one week
when it felt like there were 3 or 4 postings about warriors losing their battles.
That can be very hard to take when you
are trying to maintain hope.
I had told Meg that I had joined a facebook group, and I was
relaying some of the information I found.
It was the source of most of the questions I asked our oncologist. (Which, in the end, he told me were always
very relevant, very appropriate questions – the same ones he would’ve been
asking in my situation. So I think this
group led me towards the right information.) But I never told her the name of the group,
and she never asked. Then, in November
or December, I came home from work one day, and Meg said that she joined a
facebook group called “Stomach Cancer Warriors”, and she asked if that was the
one I was in. My heart sank a
little. I felt like I needed to be in
that group, to stay current on the information, but I worried that she would
get discouraged by reading what people posted in there. Like I said, there is no filter. You take the good with the bad.
Meg stayed active in the group for about two weeks. She replied to a few people’s questions and
shared some of her experiences. Then,
she told me she couldn’t look at it anymore.
She said people were just too negative.
Meg tried so hard to maintain a positive attitude, and exposing herself
to negativity was not going to help.
In a previous post, I recommended contacting a stomach
cancer organization like Debbie’s Dream Foundation as soon as possible after
receiving a diagnosis. They will tell
you the most important things that you need to know and the questions you
should be asking your doctors. Because
of everything I just mentioned, I’m not sure if I’d recommended joining the
facebook group right away. But, if you can handle the reality of the
situation (which I think you need to do at some point), and want to have a
place to share and find information and support, then I think it’s a good
community to join. However, I do think
it’s more appropriate for caregivers instead of patients (at least not stage 4
patients in the middle of their first line of treatment). It was a great resource for me, and it
allowed me to find other people who were going through what we were going
through. Some days, you feel like no one
will get it unless they are living it too.
So maybe there’s a better way to organize this community
online. But for now, this was the best
that I found.
(Postscript: I’m not
happy that I’ve been posting so infrequently lately. But I’ve been working through some stuff that I’m not
sure whether or not I want to publicly write about yet. I think I’m doing better now, hence this
post. Hopefully I’ll get back to writing
about once a week.)
No comments:
Post a Comment