I was losing my balance, fell down the stairs and that’s when I said to my Mum; “there’s
something not right, you know?”. I lost my speech, my lefthand side from head to toe,
and then one morning I was due to go for a scan and that’s the morning when I actually
went off to A&E.
I was a mother, I worked full time, day to day living was normal then they discovered
I had my brain tumour and everything had to stop and change. Everybody has basically had
to adapt to my recovery.
I was told that I had 12 to 14 months to live, my husband actually thought that was how long
the treatment would be, I had to hold his hand and say; “No that’s how long they’ve
given me to live!”.
And when he died I missed the Paul that I was married to as a husband and I missed the
Paul that I was looking after as like a baby. In some cases it was hard because he did change
so much with it being a brain tumour, any other cancer and the person would probably
be the same person wouldn’t they? Whereas when it’s a brain tumour they are different.
I’ve realised that other kids my age have been able to do stuff that I couldn’t. I’m
trying to overcome that, and it’s really a challenge because I just find it overall
harder to do, simple tasks.
I couldn’t dress myself, I couldn’t work out which way round a top went, I put my shoes
on the wrong feet, I tried to make a cup of tea, I knew I needed the kettle, but I didn’t
have a clue what else to do. I had to be taught everything again, but it was traumatic, not
just for me but for my family as well to see us going through it. You know for me you get
on with it, you live or die, but for everybody else they’re watching you. They’re wanting
to know, what you’re feeling; “How are you feeling? How are you coping?”. What’s
going around in their heads is far worse than what’s going around in mine.
You do need somebody else, even from a carers point of view. You need to know this is right;
“Can I tell you what I feel like?” The fright you’ve got, thinking on a nighttime
trying to get to sleep; “What if she dies? What am I going to do, it’s my little girl”.
At Castle Hill I could go there and you could say this to people.
We really needed some support didn’t we?
Yeah, my Mum went down quite a bad… she was’t good at the start of it. Her confidence,
everything, it just knocked her. She was in a wheelchair, she couldn’t even walk. Where
they’ve got my Mum walking again. So they have been fantastic.
My confidence has been close to nil a lot of my life.
And that’s impacted on me with everything.
Macmillan were there for me straight away, to make sure that I had all the equipment
necessary for my recovery.
So as soon as she was able to, we got her home with the help of Macmillan, which was
great. But initially it was just getting her in and out of the bath. And they provided
us with a hoist for the bath which was absolutely brilliant, because it’s your Mum, and at
the end of the day she’s still got to keep her dignity. So by doing that it was great
was’t it? Little bits mean such a lot.
With what the nurses have been helping me with, now I’m much more capable and more
independent than I was before. So that’s really helped.
I think Macmillan really supported me mentally because they helped me understand it was OK
to be the person that I am now, even through basically the biggest change of my life.
People don’t understand that it is a brain injury and you have got brain damage. Somebody
said the words “brain damage” and I thought; “Gee, that’s me”. People don’t see
that side of it because you’ve got your make-up on, you’ve got your smile on and
you’re fine. I’ve done the wheelchair, I’ve done the stick, I’ve done the wig,
I’ve got a trike because I couldn’t balance on two wheels and they wouldn’t let me drive.
The Brain Tumour Support Group is where you can go and talk to other people who have the
same. And like for me being now six and a half years down the line, people look at me
and go: “Wow, you can progress to that”. People are listening to patient voices like
myself. So hopefully, in the future, it’ll be a lighter journey, because it is a dark,
dark hole what you are in.
Can’t thank them enough for what they’ve done for my Mum, and finally I’d like to
think that we are getting her back, how she was.