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?

Resolutions

New Year’s Day comes with all its trappings.  Before long I will see a plethora of joggers in new looking lycra pounding the pavements and signs springing up everywhere for weight loss clubs.  Social media will fill my screen with adverts from the latest guru about how to declutter, cleanse, live my best life and succeed in my relationships and all resolutions to lose weight, get fit, live with intention and purpose.But what if you know you left 2022 truly giving it your best efforts and it was still an abysmal year, or peppered with sadness, hard things, and difficulties?  I won’t be making resolutions, because I’ll very likely fail at the first hurdle and why would I put that pressure on myself? Let’s face it, I still have a house full of chocolate and Christmas cake so that intention to shed a whole load of pounds isn’t happening this week.  If I am to go in to 2023 with any kind of resolution, it’s simply to set the goal to treat myself with kindness and a bit of compassion. I will tell myself at the stroke of midnight 2022, and today and tomorrow and the next, “job well done, girl.”  Because every day I wake up, show up, take part, and do anything, whether that’s hiking a fell, or having a cry in to my coffee, is in fact, living my best life.  So, it’s time to stop telling myself I need to improve, compete, have as tidy and beautiful a home as I see in the pages of magazines and all too frequently on the social media pages of friends.  It’s time I stop letting myself feel less than in some way.  It’s time I be my own best cheerleader and extend grace for my messy life that is definitely not Facebook neat, Instagram filtered perfect or measured by the number of likes on my status.  It is in the details, in the mud on my boots, in the pink petals on the cactus and the wag of that tail that knows how to live fully in the moment joyfully.  It’s at every turn, and this year I’ll endeavour to take it as it comes, the good stuff, the bad stuff and the downright ugly stuff – all of it, with no resolutions and no pressures on myself, just living simply and simply living the best life I can. 

Waiting with Wolves

She puts her arms round me and I collapse in to them.  I'm at my sisters to pick up my son and this day goes right up there with being one of the longest of my life.  I am drained right through.  We left for Manchester early with Jasmine all broken up on the inside.  Fear can do that to a girl.  She doesn't want to go, and neither do I.  We are heading for her MRI.  She is trying without sedation for the first time; it's a new hospital, new staff, new experience all round.  The thing she holds on to is that there is a needle involved and it darkens her world.  She's had broken sleep for 4 nights and hasn't eaten much for 2 days.  Anxiety building and it makes me feel all wrong inside.

We stop at motorway services and buy a Disney CD and try and lighten the mood singing Hakuna Matata but our hearts aren't really in it.  We're both faking it.  We get to the hospital and the first thing we're told is that we've been sent her letter in error - there isn't actually a slot for her to have an MRI that day.  They're already late.  We don't even know who her new oncologist is and who to send the images to when they're done.  It doesn't fill with me confidence and I feel sick, hoping and praying they won't ask us to come back a different day so she goes through this anxious build up again.  I feel it too.

Then they say they'll try and squeeze her in.  And we wait some more and Jas colours, we play cards, have a few rounds of hangman and her voice comes small when she asks when will it be.  An hour or two later,  I still can't answer then someone comes to tell us that Jas will be next.

She has created a picture on the way here for her new team.  It says "you're as brave as a wolf pack" and I draw strength from her positivity as we prepare.   She picks her music, gets comfortable and climbs on the stretcher that will roll her in to the MRI.  I'm holding my breath then when they put her head in the brace and we make it try to sound fun and cool and call her a storm trooper, I am slammed back to Boston and treatment days of her lying on a stretcher, still with her face in a cage ready for radiation to be pushed in to her to young body.  I want to throw up, but I smile and squeeze her hand and tell her she's awesome and brave and can totally do this.  She whispers she feels closed in and I say "I know babe," and try and reassure her thinking all the time, I don't know if I could do this.   It's loud and she jumps when it starts and I watch her chest rise and fall rapidly and just hold on and pray that she can somehow feel OK and get through it.  A few minutes in and I see her lip quivering and she's trying to hold it together and I'm right there with her, but right there in that room, with her hand white knuckling mine my heart is broken right open and I'm just plain devastated that my girl has to keep on walking this cancer journey.

She knows the worst is yet to come.  The second part of the scan they do with IV contrast.  She climbs off the table and wants a break and then sobs in my arms and I just hold her and she keeps asking, "when will it be?"  Another 20 minutes of waiting and build-up and then they're here to access her.  It isn't pretty and I hold her in a vice grip and as her tears and screams flow out of her, the life flows out of me and I just don't want her to go through this anymore.  I don't want her to have to have blood tests, IV's, checks, scans, consults, evaluations.  I don't want her to have had cancer.

Coming home we pass a coach tour bus.  It's the firm my mum used to go on tours with and suddenly my soul seems to vaporize and I'm hit afresh with grief and loss and I miss my mum.  When I tell Sarah she says it's just mum letting you know she was with you and I like that, but at the same time there's an ache, because she's not with me, is she? Sarah holds me and I say,  I just wish Beanie didn't have to go through it and I cry my heart out for her childhood filled with this ick that is cancer.  I cry for Finn with his endless days of being delivered to someone else for the day when I can't look after him. For all she's endured and it keeps right on coming.  How does she do all that and keep right on feeding the right wolf?  How does she just keep going?  I hold her that evening and when she's all snuggled in with bunny and her blanket I wonder at the miracle that she is, that the person that she is becoming.  I'll wait now.  Wait for the scan results, for the appointment for the consult with her new oncologist and I'll breathe and believe the scan is going to be clear and keep on being clear and keep on believing. And while I'm waiting, I'll thank God for this girl who inspires me every day.

The Right Wolf

"You can take a road that gets you to the stars. I can take a road that will see me through."  
Nick Drake

"Well, I'm glad you're still here," she says.  And just like that, she pours out the love and dispenses salted caramel chocolate biscotti - always.  I'm always glad to have spent time in her company and we talk, we laugh, we pray and sometimes we cry.  She offers me acceptance, pure and simple and in this moment, I am glad I am still here too.



Sometimes it feels like waiting is all I've known in recent years. There's been a lot of waiting with Jasmine.  Waiting for hospital appointment cards, waiting for surgery instructions, waiting for treatment plans, waiting in hospital corridors and too small windowless rooms.  Waiting for scans, for results.  And the wait and see if she's grown, if the cancer's come back - or not.

We talk about how everything happens for a reason, how everything happens in God's time, how there is a plan and if it's meant to be, it happens.  If it's not, it's because it's not time yet, or it simply isn't meant to be.  I wonder if there really is a reason for everything and I'm not sure there is, not sure there isn't.  I think sometimes things just are the way they are.  I don't ask "why" too much because some things I just never am going to know the answer to and I could drive myself crazy trying to understand.  I simply don't understand why children get cancer, and die, every single day.

Finn, Jas and I stretch out our bare toes together in front of us and cuddle up for movie night.  We make popcorn, we throw a blanket over us and we talk about feeding the right wolf.   We embraced this wolf thing after watching Tomorrowland.

So when she finds me and she can't put reason to what troubles her and there are no words for what she doesn't understand but the pain of it threatens to engulf her; when she finds me and her voice is small and she snuggles in and whispers "the wrong wolf is winning."  In that instant she doesn't need to say anymore and I can hold her in it for a time, then together we'll chase the wolf away and give victory back to the right wolf.   Finn can ask me, "which wolf is winning today?" and it grounds me to think about what I'm grateful for and there is always, always something to be grateful for.

We are living a snapshot of life that isn't the most comfortable, easy or happy.  It's broken pieces all laid out in front of me and like a jigsaw puzzle, some pieces fit when you try them and some don't.   Some pieces I just have to wait to rebuild and that friend and I try and figure out what it is I'm supposed to be doing, learning, and living in this waiting time.

As I rest in that friends company who says I'm glad you're still here, we crunch on our biscotti, sip the coffee and I'm grateful that she's right here with me taking the road that will see me through and learning to wait well.

Gold

It’s 1^st September and today I will wake up and put my brave on.  I will get dressed, I will walk my dog and I will drink coffee and I will wear gold.

I will take my daughter to meet her Grandmother and revel in the life that she breathes in to her bones and be grateful that she is on her way to a pool party with her brother, family and friends.  The clouds can gather, the rain can come and I will be grateful, just plain grateful.

I will meet my friend and we’ll talk and we’ll laugh and we’ll cry a little.   When that small girl, she’s not so small anymore, puts her hand in mine and it’s warm and my heart fills, I will think about how some days it still catches me unawares and can feel as raw as the day they told me she had a mass in her brain.    I will never tire of looking at her in this day. I will never stop thanking God for the marvel that she is.  Twinned with that, I will never stop feeling the pain of what she has endured.   How helpless a mother can feel, as she’s unable to take away the harrowing ordeal that her daughter has lived through in her short life. 

This summer we have lived large.  We have embraced life and we have laughed.   With hospital appointments looming for Jasmine, I choose to and fully believe her good health and recovery will continue.  I will believe for cure for her and for every child and parent that is faced with a cancer diagnosis.   I know what it is to walk that path, and keep on taking the next step.  The mascara Mondays come, and they come more often than I’d want.  But because she’s the bravest person I know, she inspires me to put my brave on and step out boldly in belief. 

I’ll wear gold this month, for my girl, for your girl, for your boy, for your brother, your sister, your son, your daughter, your grandson, your granddaughter, your nephew, your niece.  I’ll wear gold for the ones who earned their angel wings and I’ll honour their bravery and their lives. I’ll wear gold for the children in treatment this day, for the ones who were treated 5 years ago, and the ones who were treated 15 years ago.  And I’ll get my brave on and I’ll keep right on believing this day, this month, this year and every one that comes after.