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.

Jasmine's Journey

It's stifling hot right now.  The temperature sores and my energy gets zapped by mid-afternooon and all I want is another cold drink and a nap.  Instead, I'm running round getting packed up for a camp trip.  It's the first of the year for the children and me and usually we have already been at least once.  We're late starters.  There seems to have been a packed calendar with activities for both the children and me.  It tells of a normal healthy and busy family life.  I like it.

There are still the days marked on the calendar that say BCCH - Jasmine appt.  They are scattered throughout the months and we just spent a marathon day there on Monday.  Jasmine had her neuropsychological evaluation.  She spent 4 sessions with a psychologist and assistant with some breaks in between having her knowledge and abilities tested.  In reality though, she's being assessed to see if there's damage from brain surgery and radiation treatment.

She loves the day.  She enjoys the "games" she gets to play.  She is quiet though and the doctor asks me if she's anxious.  Of course she's anxious.  Every time I set foot in the place I am transported to another realm of feelings.  I can't describe them.  It's hollow, it's empty, it's grief, it's relief, it's elation, it's horror, it's gratitude, it's survival, it's love, it's dark, it's light and it's all rolled in to one and there's no harnessing it or controlling it.  I can be perfectly fine but then it hits you from left field on a Wednesday afternoon at 4pm...... I never see it coming.   So is she anxious?  No shit Sherlock! No doubt there's something in there that gets stirred up for her when she goes, even if it isn't a needle phobic MRI day.  It's just the cancer journey.

"She has performed incredibly well!"  I am told.  And I break out in a huge smile.  We chat some more and I hear about how academically able she is.  Then I hear about the "areas of concern."  That though her brain is incredibly able, she has some damage to the neurological pathways that control the execution of tasks - whatever that may mean.  In short, she takes longer to do some things and sometimes memory plays a part.  She may need support in school in the coming years.  My emotions get stirred up again, and I'm awash with gratitude that she's alive, doing well, that her recovery is being tracked so she can get all the help she needs and that today she has no evidence of cancer in her body.  Then I'm suddenly feeling heartbroken and angry that she needs support because of the damage cancer and treatment has done to her body and brain.  Then suddenly I'm feeling glad because she had proton radiation therapy in place of radiation and "it really saves the brain."  Then I'm fiercely pissed off that her brain needs saving and she had to have radiation in the first place.  It's a jumble of feelings and I feel I don't know what - it's just that mixed up place that parenting a child with cancer is.

Last night that bright and beautiful girl ventured downstairs to tell me that she was feeling sick.  She was clammy and though the fan was on it was stiflingly hot in her room.  I asked if she wanted to sit with me for a while, but she said she was tired so could she go to her room and could I go with her.  After I re-opened all the windows - she'd closed them as had heard a story that a tarantula had escaped from Science World and no way was that spider climbing in her window - I cooled her with a cloth and tried to soothe away the worries.  Inside I was laughing my head off and loving her character and the fantastic and interesting person she is and will become.  I prayed for God to hold her and help her.  I watched her looking all clammy with her brow furrowed and her eyes glazed over as she was slipping in to sleep.  From nowhere,  I was suddenly transported to the night she was admitted to hospital.  She looked the same.  Last night I watched wanting her to close her eyes and find rest and sleep and I couldn't help but silently cry a river of tears.  So different to watching that expression and wanting her to open her eyes, keep opening her eyes so I knew she was still with me and had not yet left this world.  The ache and sorrow is as raw and fresh as it was that night.  I don't know if it heals with time or is just what I will carry forever.  How can I make sense of all this?  Sometimes I think I must be going insane and that I must be the only person who feels like this - and surely as she's doing so well, I should be absolutely fine.  Most of the time I am but those triggers come and I don't always see them ahead to prepare for them.  And I wouldn't even begin to know how to prepare for them anyway.  Does anyone?

So Jasmine's Journey is this shared journey for our family.  Each of us traversing the inclines and rough terrain as best we can, loving the smooth sailing and free falling of the better days.  Life is a little like that for all.  I'm learning that the best I can do is just keep putting one foot in front of the other and take the terrain as it comes, living in that moment alone with whatever it brings for my girl and me.