June 11, 2016 8am
Just home from the
Sarcoma Symposium in Toronto yesterday. An amazing day of information and meeting new
people. At the Patient Forum, after we
all shared a bit of our story in the circle, I noticed so many people astounded
at how good it felt to connect and also health care professionals touched by
hearing, seeing, feeling how their patients felt when they were honestly and
openly talking to each other about their cancer journeys. It was a good feeling in the room at that time
J. Immediately
after people start talking about how to keep it up – email list, forming a
facebook group, etc. All wonderful and
needed but I want to suggest that this probably is actually already available
to all of us.
So how do you not feel
alone? How do you talk to someone who
understands you? How do you reach
out? We all want to connect in the way
we are comfortable with and this varies…this might be the first thing we need
to recognize. That just because the
person next to us gets a lot out of connecting with others on facebook, that
might not be for us. Maybe we really
want to read a book written by someone we feel we are connecting with. And at different parts of your journey how
you want to connect will change perhaps.
But I do think we all need to connect.
It’s one of our basic needs and as much as we would like it to be handed
to us like a prescription it does not come that easy. We have to be the ones who do this for
ourselves. And that I think is the thing
we the patient need to most recognize…that not feeling alone in this big mess
of cancer is a choice we get to make, each and every day. Is it all on our shoulders? I am not saying that because yes, our health
care team can help…they can offer ideas when we look like we are lost, or when
we ask. They can make things more easily
available when we do choose to seek. And
yes, those of us who are in the cancer journey can make ourselves a bit more
available to others. But ultimately, we
need to take responsibility for our own health…and that has many facets to
it…one being making sure we emotionally are not alone, that we are getting
support both emotionally and in learning from others experiences, to help
ourselves.
Looking back over the
last over the last 13 years of cancer in my life, I recall these are some of my
ways of reaching out: …
-
Reading
books written by other cancer survivors.
I have a pretty big collection of books now, and they range from books
that inspire, books that teach, books that make me laugh and books that help me
cry. Reading books was probably the first way I sought support from others. I keep them on a shelf in my room
and they are honestly like having friends with me, because I think when someone
writes a book they are putting their heart into it and when we read it, it does
become a way of feeling you are with a friend.
-
Internet
chat groups. I recall a phase when I
felt very much like I was the only one with my particular diagnosis and I
started looking up rare cancer sites, and signing onto their chat groups. Sadly, a lot of websites are no longer active
(this is a warning bell that always goes off in my head when someone says let’s
start a online chat group) because the persons who started it are no longer
monitoring it. But it’s like fishing,
you put a lot of lines out and sometimes you get a bite. On one of these ‘rare cancer’ sites I got a
response back from someone who also lives in Canada, but in another
province. Her and I emailed each other
for years and provided each other with a tremendous amount of support. We don’t chat now, that season has passed but
I still call her my friend and get a warm feeling in my heart when I think of
her.
-
Facebook
groups. Again, it’s like fishing. You have to join quite a few and find the one
that feels right for you. Things like
the frequency of posting by group members, the moderator (side note – I do
think it’s important to join a group that has rules of conduct and a moderator
for your own safety), and where the members come from geographically may affect
if it’s a good group for you.
Use a
reliable cancer support organization – something well established, reliable and
accountable such as The Canadian Cancer Society or disease specifics groups
like in my case The Sarcoma Cancer Foundation of Canada, The Liddy ShriverFoundation, Young Adult Cancer Canada, Sarcoma Alliance America. Find what fits with your situation but do
your homework and ensure the group is reliable, trustworthy (and not selling
anything!). These type of organizations
often offer patient to patient chat groups, peer support services, conferences,
small group get togethers and stories from cancer survivors you can just read
on your own.
- Tell
others how you are feeling and that you are looking to talk to someone who
understands – people want to help but you have to tell them what you need. More than once someone has called or emailed
me to say “I have a friend who _______ and I wondered if you would talk with
them?”. I and many other cancer
survivors are happy to do this. So ask,
or ask for your friend.
I am run out of
thoughts now (aka tired) but I come back around to how I felt at the circle
time yesterday. We all need to connect
in some way at some time. So please, go
a little bit out of your comfort zone, push a little bit past what your energy
says you feel like, go out on a limb just a little bit – please choose to do
this for yourself when you need it.
With much love,
Teresa
ps - one of the best things I ever did for myself was go on a Survive and Thrive Expedition. Words cannot described how good it was for me...not just fun but truly healing and learning and empowering. Please, please - if you are a cancer survivor between 18 and 40ish - give yourself a gift and go on an expedition. Don't over think it, just go! And if finances are a challenge, contact Fight Back Crew Young Adult Cancer Support as they can help.
pps - as I was looking for pictures to add to this blog post, I was reminded that often people we connect with are in our life just for a bit...perhaps even just one time. I had a hard time with this because I felt I needed to continue the connection. Sometimes you don't. Sometimes you connect with someone for one reason or just one season of your life. And it's okay that they move out of your life and you let them go. I think the critical thing is to be grateful for the connection at the time, and ever after. Gratitude will keep the memory and the good feelings in your heart. Gratitude is how you pay them back for what they gave you. Gratitude is what will encourage you to help someone else.
pps - I was praying on my way home from the symposium - Lord, I am so confused right now, much of what I have heard at this function has left me with more questions than answers. What was the sense in me going? Why was I there? It seems I now even more more mixed up about the things I was seeking answers to (I was seeking answers about my own personal cancer journey). This morning I woke up with this blog on my heart. I sat down with a coffee and the words poured out of me. God is Good !!!
ok...here are some of my fav pics of moments when I was connecting with others over our shared cancer stories....my heart is full of gratitude for those who have walked alongside me, and allowed me to walk with them. I could have added a thousand more, I have been so blessed. So much love.
A few from Survive and Thrive Owhyee River Expedition 2012....
And Survive and Thrive Grand Canyon Expedition 2013
