Grey for May

May rolls round and it’s incredible.  Everywhere I look there is new life, growth and such stunning displays of colour and beauty that it can take my breath away. 

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.    

Behind all of this though are the ordinary people, the people like you and me.  The people who put £1, £20 or 50p in a collection bucket.  The people who buy a ribbon.  The people who extend grace to the others we see in our communities wearing a sunflower lanyard to signal they live with a hidden disability.  The people who offer kind words of support to friends, or strangers, who are on this walk.  The people who give a moment of their time to another, or deliver a meal, give someone a ride to an appointment, run an errand, provide a box of tissues or just a safe space to rest for a while.  And finally, the people taking the time to read this, please know you have an immense impact on the people like me, who are part of a club we never wanted to join, those of us touched by a brain tumour diagnosis.

 

 

Dear Lisa

It's May.  I've posted photos my Facebook page and they're greyscale, because it's Brain Tumour Awareness month and the colour is grey.  I look at the photos of the scenary I love and call home, and the children I love and hold precious with the colour drained out of them and think how fitting it is. When my child was diagnosed with a malignant brain tumour all the colour left my world.  But it is 5 years ago now.... and that is cause indeed for celebration.  They have been gruelling years and I wish I could go and whisper in my ear some things I've learned along the way.... for this is what I'd tell myself.

My dearest Lisa,
Your world is about to change.  You are going to get up one morning and everything will be normal, but it is never going to be normal again.  Your baby girl is going to look so small and fragile and you will have to endure the longest night watching her life ebb away.  There will be discussions about harvesting her organs and you will scream silently and vomit in the sink.  You will pray, beg and try and make all kinds of deal with God to take you in her place and you are going to feel like you are disconnected from your body, mind and soul.  You are going to be forever changed by this event.
But know this, Lisa.  She is going to survive that night.  She is going to survive the 8 hour surgery to remove that tumour and she is going to get through the months of cancer treatment that lie in front of you.
Breathe.  Keep breathing. You are going to have travel out of country for treatment and you are going to crumble.  But during this time you are going to meet some people and they are going to become the lifelong friend kind of people.  Your stories are now interwoven and you will be forever grateful that it was exactly these people that you met during those times.  You will take your girl and they will fill her body with drugs and her brain with radiation and one day you will be overcome with it all and collapse on the corridor floor leaving the radiation room.   You will be picked up and carried by a man to a sofa who will hold you for 5 mins and just let you cry in his arms. The kindness of strangers is great indeed. You'll then panic about your son but he'll tell you it's all taken care of.  And after a while he'll carry on his day and you'll carry on yours and there will be many moments like this.
There will be a barrage of mascara Mondays and 5 years on, you will allow a smile to play on your lips when you stand in front of the makeup counter looking for non-waterproof mascara.  You know how  the woman shopping beside you is just looking for mascara, but to you, its brave in a bottle.
You will yearn for your home and your family.  Know this - you will get there.  You will get your hearts desire and make that change.  You will get there.

such an innocent sounding word

I came across this post that I'd composed some years back recently and it was a timely reminder to stay grounded and grateful.   The skin checks continue - I had to have another part of my skin removed this year - from my face.  The doctor told me it would leave a scar, then he had commented how pragmatic I was being which he found refreshing - we didn't linger long on the scar side of the conversation.  I wasn't too bothered about that.  I am covered in scars and they map out the journey of the road travelled thus far.  They may not look pretty but they tell the story of my life.  Some due to accidents, some due to cancer, some due to harm caused, and others like the scars on the inside tell the story of the salmon girl years.  I did end up having to have treatment for melanoma after I'd written that post, but the sentiment still remains the same. 

I now sport a rather fetching Indiana Jones style scar on my face just below my lip and it doesn't distress me - it reminds me how lucky and blessed I am that in this day, this moment, I am healthy and its good to be alive. 

2012

Melanoma.  The word doesn't sound threatening, it doesn't sound as though it could turn your world upside down.  It doesn't sound terminal.  It doesn't sound malignant.  When I was told I have malignant melanoma, though I knew what that meant, it didn't fill me with the same level as panic as when the Doctor started saying cancer.
That was 2 years ago, and I was fortunate.  It was caught early and I had a wedge of flesh cut out of my body, and all the disease with it.  Given an all-clear and told to come back to see the Dermatologist every 6 months.  So every 6 months, off I go to the Dermatologist, who looks at my pushing 40 year old naked body, under bright lights and with a magnifying glass.  Lady Godiva I may not be and I wonder what runs through his mind - is all flesh just a slab of meat?  I don't have a gym toned body - instead it wears the evidence of giving birth twice, eating one too many pieces of chocolate and not dog walking 3 times a week as swiftly as I should.  It also now bares many more scars - removals of more "tissue" that is unhealthy.  And the waiting continues over and over again.  I am cut, the skin gets sent to pathology and the results come in.  Then sometimes I am cut again with a wider excision, sometimes I am told - yes this mole or area is changing and they are pre-cancerous cells, sometimes they are dyspraxic and sometimes it is the innocent sounding melanoma.    I have multiple scars on my feet, my back, my arms, my neck and chunks of me have been examined under a microscope because they're unhealthy.  This isn't supposed to happen.  I thought I would have one isolated incident.  My children are 8 years and 5 years and most days I feel so lucky and blessed.  I am well looked after by these medics.  They find these diseased cells early enough that I only have to have skin removed by surgery.  I don't have to have skin and body poisoned by radio or chemotherapy.  Yet.  Some days I think I will live to see my children all grown up.  And some days I think about the moles that they don't find.  My body is covered in freckles and moles.  What about the ones that might go unnoticed?  I'll be honest.  Some of the ones that I thought were fine, have been unhealthy, so how's a girl to know?  We don't know how much time we have.  Let it be a daily walk in gratitude, harmony and vitality.  This finite life on earth is short, even at 80 years its way shorter than we think.  There is a time to be born and a time to die, but the living - that part comes in between.  This gift of life is just out there waiting to be grabbed with both hands. How will you unwrap this gift today?