May also marks the start of brain tumour awareness month and
the colour for this is grey. It seems at
such odds with the splashes of bright shades I see in the magnolias in full
bloom, rhododendrons, cherry blossom, tulips and an abundance of green shooting
everywhere.
But when my five-year-old daughter was diagnosed with a
brain tumour everything in my world turned grey, so actually, for me, it is the
most fitting colour. That was fourteen
years ago, and I am one of the immensely lucky parents who can say this year, I
get to celebrate her twentieth birthday with her, and she still has breath in
her body. I don’t have to mark the years
like all too many other parents who are faced with a heavenly birthday sliding
in through the night to mark another year of loss.
The first tangible experience of a brain tumour for me was insight
and knowledge through a pastor at a local church. She would share how she was visiting an eighteen-year-old
girl in hospital with a brain tumour, and how she was dying so bravely.
So, when Jasmine became ill and I heard the words brain
tumour, I crumbled as I felt those doctors were handing her a death sentence,
and this was way before we even got to pathology and cancer entered the playing
field.
A brain tumour diagnosis is a grim pill to swallow. I was lucky. The care Jasmine received in that children’s hospital extended to me, and I will be forever grateful for Dr. Cochrane, who sat by my side prior to that surgery after the most gruelling night of my life when that tumour was bleeding in her brain. But he spoke kindly, compassionately, and factually about the surgery he was about to perform on my baby girl. He didn’t mince his words, and he didn’t leave anything out. He laid out the bleak picture of what he needed to do, and the massive risk involved. If she survived the surgery, and it was a big if, he told me about the effects that it could have; that she may not be able to swallow, she may have reflux difficulties, she may have breathing difficulties, incontinence, suffer extensive brain damage, have physical disabilities that could affect movements like walking, co-ordination, balance. She may be mute.
It sounds horrific in a list like that, but after that night
I’d had when her tumour was bleeding, and causing such swelling in her brain,
if I’d had a scalpel in my hand, I’d have cut that tumour out myself, having
witnessed pain in my baby girl I’ve never seen the like of before.
That hospital ward was frantic around us that morning and a
technician almost ran into that room and said heatedly that, “we’re ready to go
now!” and Dr. Cochrane simply said “no.”
And that technician said, “but we’re ready now, we need to go now,” and again, that remarkable surgeon replied very measuredly, “we’re not ready.”
And I looked in that man’s eyes as he waited for me to
process everything that he’d just told me, giving me a moment’s grace to
breathe as I realised he was asking me to let go of my daughter. He was telling me she may not survive, but
either way, he was allowing me time to say a goodbye to my daughter before I
handed her to his care. It was looking at that incredibly skilled, but
incredibly human and kind man that I realised that a brain tumour diagnosis
completely changes a person’s life. We
do have to say a goodbye and life is divided now, before and after diagnosis.
It was me in the end who said, “ready,” and that one word closed one chapter of my life and started a radically different story.
So, its brain tumour awareness month, and what do we really
want the world to be aware of? I don’t
know the answer to this. I can only talk
about what my own knowledge and experiences have been, and actually, it isn’t
even really my story, it’s my daughters.
But what I’ve learned is this. A brain tumour diagnosis can be manageable or
catastrophic. It may mean one surgery or
multiple surgeries. It may mean cancer,
or not. It might mean things you could
do before, no longer factor in your life.
It might mean that people you thought you could count on melt away, or
there may be new people that come into your life that become hard and fast
friends in the lifelong way. It may mean
you live with fear like you’ve never experienced, or that you see simple things
round you in an intensely bright new light and can take joy in them and just be
plain grateful. It might mean there’s
lots of information and medical advice about the tumour, or there might be
precious little known about it. That
tumour might be removed and stay away, or it might grow back at twice the speed
and be twice the size as the first one discovered. It might mean… it might mean…. It might mean….
this list could go on and on and on.
And those simple pleasures, like having a hot cup of tea, smelling freshly cut grass and having the capacity to cry and feel your heart break are all actually gifts, because it means I’m still upright and able to experience a slice of life. Only one day is given, and nothing is a given, because one day is all any of us have.
I think about that eighteen-year-old girl whom the pastor
spoke of and what does it mean to die bravely I wonder? I don’t know if I have the strength of
character to die bravely. And to be
honest, I don’t even know if I have the strength of character to live bravely
most of the time.
I have worn a silver bracelet for a lot of years that has
the word “brave” on it to remind me how brave my baby girl was, along with all
the children we met on her cancer journey and recovery from brain tumour
diagnosis. I need the reminder because
the recovery isn’t linear, side effects shift boundaries and evolve, and I have to get my brave on more times than I ever thought I would have to in this life. There are still peaks and
troughs. There are triumphs and sorrows, and I realise life has a habit of ebbing
and flowing for everyone, whatever season you find yourself in. People have hard things going on, all the
time.
Another bracelet has recently been added to that one, and
this one was given to remind me of how strong I am. I don’t feel strong, and I fake it much of
the time, but these things visual, tangible, and real on my wrist remind me
that I have strength enough to just keep taking the next step. And that’s all I
have to do, just one step, in the next moment.
And all the moments join up into days, and then months and then years of
this great big adventure of life I’m living.
I feel grateful.
And whilst we’re doing that, the doctors, scientists, the fundraisers, radiographers, chemists, biologists and every single unspoken hero and underdog who is part of the clockwork that makes the world of medicine tick can continue on with doing what they do to ensure that more knowledge grows, treatments get better, more help is given and more lives are saved when this diagnosis comes along.
