We don't go into a marriage thinking we're going to be living without our spouse.
So of course it's sad but
it is what it is, and so it's all about
so what's important is knowing
that not only can you manage it but that they're going to manage it.
You know when I was diagnosed,
it it was like I was there's part of the brain tumor
and so my fear was lack of communication at some point along the road.
So it opened up a million channels and I needed to deal with and be proactive with
right off the bat. So we talked about do not resuscitates,
we talked about funerals, we talked about dying, we talked about hospice, not dying
at home, dying at home
palliative care, the whole thing. And this is with Mike and the kids,
they were all there. So the resources
North York General has provided wonderful resources in terms of the
palliative care department. Dr. Horvath and Chada about think at a
and sometimes it's just sitting down and talking to them about your worries, your
fears, your concerns and where you want to go.
You know everyone's diagnosis is so different
and the way they handle it is so different
and the first little part of it
you just feels so completely out of control I think.
I think a lot of people feel just completely out of control,
and they're waiting for tests and it's just a really miserable time.
And I think whatever you can do at that stage
to sort of pull back some control whether it's
going at getting a book that helps you cook
in a cancer-free way, or taking some yoga or are taking some meditation
classes
or going to Wellspring to see what's available or calling
Willow -- is the other one that's so great and at North York General now
that gives you resources, people and places to
reach out to to help you with your journey because
it's pretty tough to do it alone.
How will you die and where will you die? I mean there are choices there.
You can die at home. You can bring in a hospital bed, you can bring in the oxygen
tanks you can get some assisted
nursing help and I really thought a lot about it.
I watched a friend of mine try to die at home and it was very, very hard on
her family
a lot of stress and
my belief, and of course this is projecting that it's going to be horrible,
my belief is that the home is sort of a sanctuary for everybody
and if they associate
a room in your house, or your house, as suddenly this place that's fraught with
the end of a life
does that undermine their sense of peace
and calm in their house. So
I thought, yea I think so, so maybe what I want to do is be in a hospice.
We're all going to die
and if we're very, very lucky we're going to have friends and family around us
and no discomfort. Like that is absolutely the best case.
So we have to try not to be afraid of death
and take advantage of the palliative options that are available to us.
You think all the stuff that's going on all over the world
and the heartbreak and suffering that children and people
go through and realize how really lucky
we are here to have this kind of health care.
The doctors really
are guestimating. They probably don't know. They probably don't know how the
tumours
are going to behave. They know that the tumours are in the brain
are the problematic ones and
I tried to get one of our doctors to pinpoint where they are
simply and how that it affects the function
because you can't help but want to know when I fall of this cliff
cognitively, what is it going to look like?
Is it going to affect my speech, my cognitive functioning or am I going to become
like this crazy lady whose screaming obscenities
at their family completely changing the personality of who I am,
or who I want to be. And that part
is the part that's difficult but
we had an appointment, and all the kids were there, with the palliative care doctor
who's a wonderful person at North York General
and so we express these kinds of concerns to her
and she gave us a great sense of peace which is where the palliative
piece comes in because
there's so much that's unknown about this stuff
and all you really want to know is that
you're not going suffer and your family's not going to suffer.
So she said we can deal with
physiological pain, we can deal with emotional pain
and we can deal with existential pain.
So in other words we've got you covered. Your family know who you are.
If your behavior become such that they know you'd be unhappy with that
she'll be able to deal with it. So part of it is the time frame but,
you know what, it sounds sort of like a hackneyed phrase but it's really
more about the quality of life.
You want to hang around
but not at the expense of the quality of your life.