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I think the shock of it, to be diagnosed
with a brain tumor specially as just over two years before that I was diagnosed
with breast cancer
then to be told you have a brain tumor that was a very big shock
and it did take me quite a while to get over that and to
feel comfortable again and to feel myself again.
I originally got involved in the
brain tumor field because of my son who was diagnosed
12 years ago and he
was diagnosed when he was turning 12 and he died when he was 13.
It was seven years ago I was diagnosed with
low grade -oladiglioma-
I've learned that there is a need out there
for support like, you know, just a simple
conversation to normalize their experience.
As a carer I have to fill
several roles, I'm not only a husband but I'm also a carer, a
father and also I facilitate
a Cancer support group
as well. My mother had brain tumour so she
was diagnosed when I was 16 years old
with a low grade brain tumour. She
travelled that journey for almost eight years and had a really good quality of life
up until the end so my role as a family member
evolved throughout her journey and
unfortunately to her passing away. That is a constant
thing in the back of your mind that you're walking
around with a brain tumour because they only could take less than half
out and it's still there
and is slowly, slowly growing and creeping
and it's a worry and the frightening thing is when you have to go for your
check up you have your MRI
and then you have to wait for the results and it's a nervous time because
you never know what you going to be told. Currently
with running monthly support groups, I
also organize a yearly brain tumor expo
where we have invited speakers come along and I
try and get some good up to date information
passed on to the attendees and we get about
seventy or eighty people coming along. By going to the support groups,
support group meetings, they sort of say, ah ha,
I know what you're talking about
I felt that and at least now someone can actually
tell me that, they would know, they've done that
they've been on that journey as well, so
I find that really rewarding and also like, you know,
being, giving an empathic shoulder if
you like, That's the most rewarding thing.
I found it very, very helpful for myself just to hear that
other people going through the same, having the same problems
and having the same, you know
feelings about having a brain tumor and then
on the other hand to be able to help new members,
people that come along, to ask questions that they didn't ask
didn't dare to ask the neurosurgeon because they thought it
was a silly question so that's where we're helpful
as a support group. I can now look
back internalize it as a learning so
I've got a lot of learnings to how I deal with situations and how I can
sympathise with other people and look at other people's,
step in other people's shoes if you like and and put the carers hat on, put
family member, put the patient hat on. I've learned a lot of what could've been done
better
from communication as a family and more information from the doctors,
see the value in patient support groups because now I have attended them through
BTAA.
So it's really, it's made me think what I would have done different
and how I can apply that to different situations now so I'm a lot
more calmer, and
less scared, when I think back about the past.
A lot of people when they
first are diagnosed they get sympathy from their
family, friends but that's not really what they
want. They need some positive
encouragement that they can actually, not only
beat this disease, but to actually live
a normal life.