Brain Tumour Alliance Australia members sharing their stories.


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.

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