new pjs = happy boys

Aunty S shopped for snuggly new pi's for the boys this week. It made them all kinds of happy crazy dancing about in their new bedtime wears!

I love bedtime around here. Boys getting into warm pi's in front of the fire, lots of stories read, snuggling together on the couch, sneaking in school readers too, and then into bed with prayers together, little songs to sing and sweet cheeks to kiss to sleep as we tuck them in. Fun.

This week I have been rocking out my new beanie with the 'pon pom' that Soul loves so much. Not as cute as the boys in pi's, but keeps my head toasty in all this fog and rainy weather we have had in lil' old Adelaide this past week.

I love snuggling up in my cozy blankets on the couch with the fire blazing while I listen to the rain bucket down. Now all I need is the energy to make a cup of hot chocolate and I'll be all set!

starting taxol with a side of transfusion

Taxol was pitched to me as a low maintenance chemotherapy drug -  or at least one with very minor side effects. One that would get down and dirty with cancer while I carried on with life pretty much aside from perhaps a day or two of feeling more tired than usual.

Umm...not exactly accurate in my case!

After my initial infusion almost three weeks ago I was overcome with fatigue to the point of not lifting my head off my pillow for any extended length of time until day before the next infusion. Every fibre of my being felt deeply tired. With a HG count of 71 instead of 100 it made sense. However, for whatever reason the blood transfusion has been unable to keep my numbers up. Dr K thinks this is perhaps due to the cancer in my bone marrow, or perhaps some very slow internal bleeding somewhere (what the?) but whatever the case I have had two more transfusions to boot, and today am still knackered. Sigh.

Only two months ago I was racing the boys around, running my household, and getting stuck into life. I really am chained to my bed or the couch at the moment. Just such a sudden and unwelcome aspect.

Praying for a heart that is anchored in Jesus during this storm. 

My daily work is to trust my Jesus. To not focus on the waves and the rising ocean, but to fix my eyes on Christ. 

This is such hourly, minutely, secondly work. I fail and I fall and I struggle to get up and trust Him. With each appointment and with each day of exhaustion, and with each day of seeing my family get on with life without me it is WORK to trust, because I can't make any sense of this thing and there's hardly any respite.The difficult days are by far outweighing the easy and light days and so it is work to put aside my interpretation of my circumstance and look to Jesus and in the deepest place in my heart trust Him.

But it is my daily work, and i will keep on. 

Glad God doesn't mind baby steps.

A trip on bikes to Glenelg the day before my treatment starts

Heading off to a party my sweet friends threw for me

sports day

True and Brave had sports day today at Belair National Park in the drizzling rain. It's the day that all the minutes of practicing hurdles (over kids picnic chairs on the front lawn) was about to pay off. 

I had told the boys I would do my absolute best to come and watch, but that if I couldn't come cos I was too tired, that I would ask Gramps to take some video so I could see it later. When Mum and I got there we could see Gramps with his camera following them around. He is the absolute best Dad and Gramps ever. Reminds me of how he captured almost every single minute of my own childhood on camera. All the mundane and the sensational. Love that.

Laying in bed this morning, and dozing in and out of sleeping and hot flushes and feeling disheartened I wasn't there cheering them on was one of those hard days when it's clear I'm not in control of my days and the impact on my boys is not one I would welcome. I wanted to be there the whole day, dammit. I wanted to be all up in the action, cheering them on, wearing red war paint myself. 

But it's ok. It's just not how I wanted it.

My lovely Mum drove out to the park in the hopes that the boys might be competing in events near where we could park the car so I could watch. We didn't manage to get too close, but with the help of some trusty binoculars (sorry other parents who thought I was keeping a sharp peeping Tom eye on your kids!) I did see True race and caught a glimpse of Brave play volleyball.

If only True and Brave had known mama was there.

And the deep sorrow of many years to come of mum not attending dampens my mood this afternoon. I've taken on some cares of tomorrow by the looks of my messy heart.

It's the skipping ahead days and months and years that will do my head in if I let it. The jumping ahead to sports days, and birthdays, and school awards that will make me feel ripped off and jaded that it's all going to be 'taken away'...

But nothing has been taken away because all of life, even this very day is a gift, a total gift, that I can't make happen myself or orchestrate even if I wanted. No one can add even one day to their life by worrying. And my Jesus said it so I know it can be trusted. I know that it is true. Besides, if I had a choice I wouldn't be adding a day, but a lifetime to cuddle and play and enjoy and give time outs to my sweet boy brood.

One extra day wouldn't be enough.

So I'll lay aside not being able to get out and cheer at sports day. I'll thank you Jesus for my Dad who is out there in the drizzle now filming the boys athletics. They will know they are loved, and it is a wider and deeper love than just what one mama can give: these boys of mine have the love of a Heavenly Father who will provide for all their needs, come what may.

A safer love than just what I can give them alone. And so my heart is thankful.

hair gone

I heard the door open and shut. I can't mistake the sound of my love coming home. I look forward to that sound all day. 

He's let in the cat, or maybe he's let the cat out; hard to tell, but the boys are making a fuss of it all. I breathe out slowly. I've remembered what we agreed had to be done today. My hair has started to fall out days ago. I'm covered with itchy, gross, wayward stray strands that won't stay where I want them anymore. I've begun to avoid running my hands through my hair at all...really don't want to pull out a clump.

He's quietly set up a chair and the razor in the bathroom. The second time he has shaved his wife's head. Not the maiden voyage. No uncertainty about how I will look. We have travelled this before.

Last time, two years prior, our little True about four years old at the time watched without blinking as the hair fell down, piles of long fair locks cascading down on the grey tile in ribbons. One minute a crowning glory and the next swept up and binned.

What a difference a day makes.

This time True and Brave begged for their heads to be 'made bald', and the night before they had followed through and the #1 all over had thrilled them to the core - running around the house in an excited frenzy-all baited breath over their new look. And the feel! I couldn't stop running my hands over those perfectly formed, sweet heads...eyes that looked ten times the size and sweet soft skin of cheeks softening the stark impression.

But me?

Freckled skin on cheeks, eyebrows threatening to abandon ship. Wrinkles around eyes deepening with lack of hair, and no protection for tired drawn expression thanks to chemotherapy and anaemia. 

And when I take my seat in the bathroom ready to just get it done, the last time floods back and it all tastes like deja vu and the tears I don't want to fall just come anyway, and it's pathetic, and Huz says he is so sorry to have to do this my love. And I know he is. Know he feels bad for me. But it doesn't feel like pity, just him being on my side. 

When he has cut off the longest locks his phone rings. A work emergency. He has to answer, but why now? Why when I look like a beast in this cropped hair? 

At least the boys have abandoned the jumping in the bath game they have played as they watched me and now they are watching 'Clifford the Big Red Dog'. I'm grateful they don't see the tears. But this time I don't cover my head as soon as I'm done. I don't bother. These boys of mine can't be protected from it all like I tried so hard to do last time. They must be made to see. Must be allowed to see the sickness in Mummy. 

And it breaks me. 

i love huz

Dear huz

I am all busy thinking about how well you love me, how deep we have traveled together over the past 11 years of our marriage. We have loved one another with all our hearts from the very beginning, and I can't imagine the person I would be without you. I actually can't imagine the girl I would be...most likely lots more fiesty ; )

I woke up all out of sorts this morning. The morning of Brave's 5th birthday party, and the emotional struggle I was facing in planning to go along. There will be many many more birthdays ahead that I won't be able to attend. So many celebrations I will miss out on. The sick feeling in my stomach gave witness to the desire to be there today and the fear of going and having to face countlless school parents with well meaning questions. I couldn't do it. Couldn't bring myself to go. And you knew Huz. The whole time you knew my heart and why I was a mess.

And when you just spoke it aloud to me, and I heard the thoughts in my heart reflected exactly, it just made me fall to pieces. And when you held me and just let me crumple up, there was a kind of healing in the deep hurting place I was protecting.

Truth is that I'm not very brave.

Truth is that I want to think I can just push on, but my heart has taken a big old beating in these last few weeks.

Truth is that when I talked to Brave about how mummy was really tired and didn't think she could come to his party he was totally fine with it, and said, 'I wish you could come mummy but I will tell you all about it'. 

Thankyou Jesus for the grace from a 5 year old, and the deep love of my husband.

I am more than blessed.

birthday pancake brekkie for Brave

extra chicken or a broom with that?

This week Grandad did a head count of our chooks. Came up as 6. Problem was that we used to have 6 chooks and then 'chocolate' one of them got sick and had to be buried a couple of months ago. Hmmm. Something had to be wrong with that head count then.

True helped Grandad bury that little chooky, so today he was super baffled and suggested we check the hole to make sure she hadn't come back to life!!

Turns out our neighbours chook went for a little walk across the road, and Huz and Brave let her in when they saw her wandering around our yard. 

Problem solved.

Phew. I was starting to wonder how they had begun to multiply before our very eyes!



Just a little funny quote to add: The boys were about to head out to Brave's 5th birthday party at the park, and I wanted to brush their hair after their shower. When I got out the brush, True asked me why I was BROOMING Brave's hair. 

Brooming! 

Oh my I really need to brush their hair more often!!

It's called a BRUSH my boys. A brush.

xx

a splendid day

One must wait until the evening to see how splendid the day has been.
Sophocles

I love this. Because you just never know what joys today might hold. And sometimes those joys don't surface until later in the day. 

I want to 'gut-believe' in the good touch of God. (Ann Voskamp, One Thousand Gifts) 

But until it's my default to believe in His fierce love and protection, I am naming the good things He gives me each day to remind myself that even when the day is bleak, He is with me.

One of the clearest things God has ever said to me was when I had a long scan of some sort right back in 2011 when I was first being diagnosed with cancer. I was laying in this huge machine and got to about halfway through the 20 mins when I started to panic and wanted to just get out. 

I felt Him say, 'Beloved, I am here'. 

Immediately I calmed, my heart rate slowed and I felt entirely calm. 

He was here.

That was all I needed.

The scan finished up and I got out. To anyone else it was just a routine check, and I was the poor girl just being diagnosed. But I felt the presence of God, and He had made the inside of that machine holy ground.

So typical that my Jesus would make a moment so ordinary, so mundane and so ikky into something more. He's rad like that.

i feel good...I knew that I would now!

I am almost out of days until I start my next round of chemo, but am beyond thrilled that today I actually have started to feel 'normal'! Oh my, today I actually went out for coffee with my gorgeous friends Sal and Chelsea and it has literally been two whole months since I have been practically anywhere. (Sal and I even fit in a quick trip to the op-shop...ahhh bliss..I adore a good op-shop outing) 

It felt so strange to get dressed in something other than trakkies and bedsocks. I'm so glad they took me out though - It's been hard to keep perspective being at home in bed for so many days straight. When I got home I immediately wanted to go out again! Don't make me sit in my house unless I absolutely have to...i've had enough of being in my room to last a lifetime.

Then I read this as I was lazing by the heater in the afternoon:

'You would be very ashamed if you knew what the experiences you call setbacks, upheavals, pointless disturbances, and tedious annoyances really are. You would realize that your complaints about them are nothing more nor less than blasphemies - though that never occurs to you. Nothing happens to you except by the will of God, and yet God's beloved children curse it because they do not know it for what it is'.
One Thousand Gifts
Ann Voskamp

Hmm.

That is extremely challenging for me at the moment. 

I have lost almost total control of every.single.part.of.my.life. 

I have family and friends helping with everything from meals to childcare to transporting my boys around, to taking them to the doctor. We have just enrolled Soul in childcare, and True and Brave will be going to after school care a couple of afternoons in a row. Our church family and neighbours have been making us meals, and my beautiful mum and mother-in-law have been cleaning and washing and tidying and putting away on repeat for the last few months continually.

That overwhelms me.

That feels like I'm letting the 'we are healthy people' down.

Actually I would love to be able to help someone else the way we are being helped, but instead I am on the receiving end. 

That feels harder in some ways. I like very much to be self sufficient.

Anyway.

This experience which I'm walking absolutely feels like an interruption (that's an understatement) and I have complained sometimes aloud and lots and lots in my head about the hardship of this cancer.

And so, 'nothing happens to you except by the will of God'. This is pretty full on to take in. I need to change my theology! It has always comforted me that God is 'sovereign' and absolutely holds the whole world in the palm of His hand. I love that I can have this as the bedrock of my faith. God isn't going to change. He is in control.

But.

That leaves me reeling a little when I think about all the grief I am walking through thinking about leaving my boys so young, leaving my Huz when I want 50 more years of being married to my incredible husband. When I think of all the 'life' I'm no longer participating in as I lay in my bed trying to recover from awful toxic drugs pumped into my body. When I think about the revolting 'cloud of chemo' that shrouds me until the next time I'm due for the same concoction all over again.

It's easy to sink into self-pity. It's easy to want to jump into a big ol' pit and just stay there.

I don't think that's what the God wants for me. The butterflies in the pit of my stomach are showing my desperate desire to control some of this, to write it off as a huge 'interruption' to my life. In so many ways I don't like the thought, but there is a comfort to knowing that this is God's path for me, and He will not let me go. I need to keep holding His hand.

A very wise friend gave me that advice a few years ago when I was first diagnosed. 'I can't choose the circumstance, but I can choose Whose hand I'm going to hold'. This just about sums up the dilemma. And really what would I choose? Him of course. A thousand times Him.

I am more than blessed.

a saturday morning breakdown

Night sweats distort my perception, and the repeated waking makes the night feel tedious. I'm awake now, with boys needing breakfast, a husband needing peace and I'm unfit for duty with this heart all blurry and water coloured. 

It's a full time job to pretend I'm okay. 

I'm not.

Soul is knocking at my locked bedroom door. I've pleaded with Huz to let me have half an hour to cry and be on my own. Writing calms me, and lets the pain take a shape. It's less elusive than the big bad wolf of fear breathing down my neck. At least on paper I can search my heart and the places I've let fear be the hero instead of my Saviour. 

I need a Saviour.

This volume of pain must be measured beyond what I can manage. What must be tonnes and tonnes of heavy worry surely can't be just for me? 

The hours drag out when my bones ache, and my body just won't cooperate to heal. I count down the hours until I can have a bath as a distraction.

And I should really hit the delete button on this post because it's not masquerading as upbeat, it's just the cry of my heart...help me God for the waters are up to my neck.

My hope is being tested in the firey furnace, and I'm crouched on the sidelines with fingers and toes crossed I will come through.

I can hear one of the boys being put in time out. There's crying and wailing, and 'Dadddddyyyy...I want Mummy', and then it's only a second before this changes to, 'sorry Dad, sorry Dad, sorry'. 

Am I that much different from my boys? 

I would make this pain vanish in a second if I could. It's beyond my capacity. I can't choose the path, but I can choose whose hand I am holding as I walk through. 

And I won't be letting go of the hand of God. 

This I know.

murmuring thanks

I'm murmuring thanks soft. 

it's barely audible. 

Mustering up a gladness in my weary bones has been left to the side for the last few weeks, but it's my soul that's going bankrupt in the absence of the thanks. It's revolutionised me before this giving thanks in the mini blessings, the unseen music that I hear playing in the background of doctors visits, desperate prayers to be well, tears that I let sneak down my face when it's just me in the bathroom. Because it's not all sad. It's deep too.

When I swallow the thanks that sparks small and soft I am left empty. Because there's always thanks to be murmured to my Jesus. He sustains me when my soul is heartbroken and I don't know I can wake up and do another day. He is watering the garden in my soul, inhabiting my heart.

Yesterday I woke to terror. The terror of the night where fears roam free and take over, gaining ground and size. Too big for me to reign in, too big to wrestle. Huz held me close, spoke truth to me. It was still early, but True and Brave came in, wrapping little bare arms and legs around me on each side, snuggling as close as possible and showering kisses on my cheeks. 

And my God who sees it all gave this gift just when I was at my lowest. His mercies are new every morning. And I murmured thanks soft because I couldn't help it. And then I remembered how long it has been since I have thanked Him for anything. 

He hasn't stopped giving gifts, both the hard and the welcome ones.

Mothering is at once the hardest and the holiest and the happiest 
(Ann Voscamp One Thousand Gifts)

I never knew being a mother would revolutionise me, break me so I could be mended and see everything entirely differently. God's greatest gift to me in so very many ways. How could I have known? And it's taken me years to get comfortable in it, years to warm up, see how my selfishness needed to be broken into a thousand pieces by ways of little hands and hearts needing all of me when I have longed for silence, peace, less housework.

Jesus you knew what I needed so much better than me. I have been sanctified in so many ways through motherhood. What a gift.

And so this begins my list. My little list of thanks.

aunty A has to go home

Aunty A has to go home this evening. All the way to Turkey, and I'm not ready to say goodbye. It's been such a treat to have her here. She has taken over caring for all of us and I will desperately miss her. 

I've battled today with what I am looking forward to at the moment. Chemo definitely doesn't count. Actually nor does any trip to Tennyson. These appointments are pretty much all that is in my diary. I'm thinking I really need to plan something lovely for this week off! 

My mini miracle has come. The miracle of having an extra portion of energy. I swear my red blood count has upped or at least stayed at the point it was after the extra blood on wednesday. Of course I won't know until I get bloods done on tue, but I am certain it has to be better. This time last week I had my head on the pillow pretty much 24/7 and today I've been sitting up lots, and my mind even feels like it can make a decision or two if push came to shove! An improvement that's for certain.

The best part of an extra shot of energy was feeling good enough to go out with Aunty A for lunch yesterday. We kept it pretty short and easy and just went to one of my favourite spots along the beach just near Glenelg at the Broadway Cafe. 

I can't even put into words how amazing it was to have my beautiful sis with me and have her all to myself to just chat and be with each other. She is such a significant support to me and a huge encouragement as she has been fully journeying alongside us since I was first diagnosed. I am more than blessed. Having two sisters by my side means I never have to feel alone as I process it all. She's leaving tonight, and will drop in this afternoon to say goodbye. Will be very difficult to say goodbye. I've got the Kleenex ready.

Feeling like a lost ship at sea.

round one done!

Taxol round one done baby! For the last three weeks I have had my weekly infusion of taxol and as it happens pretty much a weekly blood transfusion or two thrown in there too. Add in a power port insertion surgery, and it's pretty safe to say I am a hospital dweller through and through.

my pretty orange decolletage after port is put in

The actual infusions themselves have been super straight forward and have been given over 3 or so hours. The blood transfusions are longer depending on how many units - they have taken up to 5 hours in the chair. Lucky those big old plush chairs at Tennyson are so darn comfy.

Huz making me laugh at chemo

The most challenging part without doubt has been the overwhelming fatigue that has made me feel each of my cells are gasping for oxygen, and then laying down on their own individual feather pillows and declaring a strike until I can organize better air flow and working conditions. C'mon little guys! This is when I need you the most and you are totally just laying down on the job. 

Slackers.

With my normal racing around a lie down actually sounds appealing, but this kind of tired has dragged along some unwelcome companions such as boredom (but too stinking exhausted to even play music) and a side serve of mild depression. 
 
Today I feel way less tired than I have done. A little corner of my heart is celebrating, but I'm cautious as day two after chemo is always mild compared to day three and four, so I'm expecting the next couple of days to be bumpy to say the least. 

I'm planning to try a couple of new things in the next few days to detox so I'll have to see if they make any difference at all. I've been drinking warm water with lemon juice squeezed in today - really really yum. Tomorrow I'll be having an epsom salt and lavender oil detox bath and might even throw in an enema if I'm feeling brave. Just want to take things into my own hands a little more instead of just waiting around for my jolly red blood count to hit the roof.

True and Brave are about to be dropped home by Granny & Gramps, Soul is coming round with cousin L and Aunty N and also Aunty A is coming round. She only has two more days here before flying back to Turkey and I'm going to totally lose it when she goes. It has been amazing to have her here. There are no words. When a sister fly's all the way around the world to see you when you are sick you know you are loved!

Aunty A came with me to treatment and some blood tests this past week. She is such sunshine. All the nurses love talking with her and she is just the perfect relaxing companion to take along. 

I just realised though that we havn't managed to take a photo of us together since she's come. No surprise really as I'm not exactly dressing to impress these days and barely ever really feel like having a camera pointed at me, but I have to remember to take some this afternoon amongst all the crazy!

Just one more thing since the boys aren't home yet...

My 'Jesus Calling' has been so very encouraging for my spirit over recent months. A recent theme in my life is all this waiting. Waiting for results. Waiting for this pain to pass, this chemo drip to finish, this afternoon to drag on, this exhaustion to cease. Waiting.

'Waiting on me means directing your attention to Me in hopeful anticipation of what I will do. It entails trusting Me with every fiber of your being instead of trying to figure things out yourself. Waiting on Me is the way I designed you to live; all day every day.' 

Light bulb moment. 

Waiting on God is not like waiting on circumstance. Waiting on God is how I have been designed to live in hopeful anticipation. It's just how to put skin on this when I'm not able to lift my head off the pillow, and my heart is sinking and downcast and it's just all hard work and I'm searching for the sunshine or even the silver lining; I'd take that...but even the lining seems grey.

So what does it look like to trust and wait on Jesus in these times. 

I guess I'm in the middle of learning.

brave's 5th birthday letter

Dear Brave

Tomorrow you are turning 5 years old. And in your words, 'What the hecka?'

Your little baby self is in my minds eye-so little, very petite, deep eyes peering back at me, and a persistent cry reminding me that you are really the boss now that you have arrived. 

You have always had spark. An attitude of defiance sometimes, and a straight forward unapologetic view of yourself and the world. Love that.

You play hard and then crash. I've not ever seen one of the other boys fall asleep in about 12 seconds flat as soon as their head hits the pillow like you do.

When you come in with your little lips pursed to kiss my cheek first thing in the morning, or your cheeky grin (with that dimple I love) tempting me to just scoop you up for a cuddle. Your cuddles are better than medicine. They heal.

And so the dressing up continues with True. You now have your own crazy schemes and plot outlines to contribute, and the giggling and the silliness ramps up even at 6.30am, and gets me all hot under the collar as Dad and i try to steal maybe just a few more minutes sleep. And then I listen in to the banter, and I can't stay mad, can't even wish you'd be quiet, because the two of you together have the strongest bond, the deepest love for each other, and the desperate need to hang out all the time. 

You love animals with passion. We used to say that you 'loved too hard' Brave. But it's changing, and you are loving with a sweetnesss in place of the hard squeeze it used to be, and Galahad likes you. We have been wanting to get you a dog. We will, because I sense it will be one of your 'happy places' in life. One of the things God has gifted you with.

Tomorrow we have Granny & Gramps, Aunty A (back from Turkey for 10 days) Aunty S, and Nana & Grandad coming at 7.30am for a birthday pancake breakfast. You are excited about opening presents, and I am exited about seeing you gorge down your maple syrup and pancakes and be celebrated and gets lots of cuddles and to tell you how glad we are you are here in our family, how we wouldn't want it any other way, how you being here is sunshine and joy and funny sayings, and smelly pops and asking you again and again if you washed your hands after visiting the bathroom, and you are loved Brave. You are deeply loved.

This weekend we have planned a 'space party' for you in Bonython Park. We have invited the whole class, and some special friends from church, and friends from far and wide are going to help cook and run games for you and basically just lavish love and attention on you Brave. Can't wait for you to have an amazing day.

It's always hard to put into concrete words what you boys mean to me. It's vast and it's hard to wrap it up like your presents and cards sitting on my dresser waiting to be given to you. 

The words don't seem large enough, potent enough to spread out loud on this page...just in case you think that 'I love you' is just three words next to each other, and not the feeling of a thousand balloons being let up into the sky at the same time and littering the blue air with colour and joy and abandonment. You are colour and life and a spectrum of bold wonder to me Brave.

Love you Brave,

Love Mummy xx

the best thing since sliced bread

Today I sit at the cancer center, hooked up to receive blood for a blood transfusion from a person I have never met. The soothing ticking over of the machine comforts me somehow. It's measured and it's steady; following protocol. My senses are all at once nauseous and clean, taken over by exhaustion and can I please just shut my eyes for a bit?

Last week Miss J explained the infusaport to me. She hauled me over the other side of the room, taking me past the brown padded chairs, and the dark grey ones with the wooden levers right up to the chair which Doris sat in. 

Doris said I could take a peek at her port. For a $10 fee. 

And after she was hilarious and witty and at probably around seventy years old, she seemed happy enough with it. 

Afterward, I saw Huz had been talking to the wrinkled beauty next to her. White hair and gentle, she had asked Huz if I was worried about having it put in. She told him that she had fought against having the port for a long time, 'but it's the best thing since sliced bread'.

Back at my own chair, I looked across, and she waved.

Thanks Doris and sweet old lady!

Yesterday the port went in, and today in goes the blood from a stranger. I'm feeling a little more awake 3 hours into the transfusion, but it's best not to get squirmy thinking about this blood, this life, this gift from a stranger.

I am more than blessed.

a reason for hope

After the knock at the door, my friend's husband was brave and handed me the meal she had made us. He could have left quickly, with a small tight smile or a sorry expression. He asked me how I was instead, if I was feeling positive? And all at once I didn't know how to answer, didn't know if I was positive or negative or ambivalent or just really scared.

It changes.

This morning it was hope filled with hope. As big as a hot air balloon headed into a sunshiney day with just a still breeze. 

This afternoon the knots started with a simple granny knot and built up and up on themselves until they could have held a ship steady against a warf. 

I answered him, but it was a simple answer. My hope is in Jesus. Not exactly sure what I'm meaning when I say it, and fully aware that this answer could be a let down as perhaps I'm supposed to be pretending I'm not dying. Pretending that my doctor didn't just show me scans with tumors throughout my body, growing and growing and making my eyesight go strange and my legs ache. 

I trust Jesus and choose to hold His hand, but I will not pretend this means I will see my 40th birthday. If I do it's gonna be a huge celebration. It will be at Carrick Hill on those huge lawns with hundreds of my favorite people, and it will be glorious, and I will raise my glass to the extra years, the ones I wasn't supposed to have, and I will think back to the knots and the fear and the year 2014, and it will be epic and I might even have some extra wrinkles, and my boys will be older, and I long for that.

But. if it's less time that I have then I will trust Jesus knows what He is doing with my family and my life. If all my days are written in His book, then i'm really not getting ripped off like it feels sometimes. The days were never mine to have. 

I really have to work on my answer though, because as the days turn into weeks, I want to be ready with an answer for the hope I possess. 

I think it looks harder to live this from the outside than it feels to live it from the inside. 

I have a reason for hope.

a day for Soul and I

Soul and I like a nice relaxed morning around here after sending the big boys off to school. He toddles, asks for puzzles, follows me around, and just lately has thrown into the mix standing silently half hidden in a doorway until I see him. When I look, he just stares back and says; 'hiding' before running off. It's become a serious sport! Reminds me of Pat from 'We Can Be Hero's'...totally cracks me up that show.

True and Brave are getting really good at doing 'bag jobs' before school (getting lunchbox from fridge, packing up readers and sight words, remembering a hat, jumper, umbrella etc), and I love seeing their independence. Just the last two afternoons, it's been the joy of cutting one's own kiwi fruit in half to go 'halvies' with your bro and then scoop out the rest with a spoon. They love it. It's the small things!

After school True has been exhausted despite being the older of the two by 15 months...playing hard, being around roomfuls of kids all day, i totally get how tiring that is. Maybe he's an introvert too? I sure am. 

But I felt lost after they left this morning. The demands left with them, so I just sat out on our huge red comfy chairs on the deck. No more 'requests' for a drink, to scramble for the lost shoe on the way out. Just a quiet little space, and I'm left thinking about what they are up to at school...is it reading time yet? Free play? 

I love that they joined forces yesterday with True's friends, and Brave just joined in. Love brothers that play all day every day together at home and then go back for more in the school yard. 

Makes my heart warm and glad that they are two peas in a pod.

love letter

I've woken up thinking of you Huz. It's one of those evenings where I can hear crickets outside the kitchen window as I sit and type, and the quiet ebb of the gentle breeze and soft light in the house is comforting and predictable. I love this house you built me.

You keep 'awow-sing' me (!) each day we have been made to walk this slimy path that winds, and just won't be made secure no matter how much I want it to be. 

Your steadiness, your perfect questions in my appointments, your hand holding...you bathe me in love and I was able to get the injection today because you were there. Elma is not'ing to me if I have my Huz with me. No numbing cream needed. You believe I can conquer it and deal with it, and so I believe I can too.

I love that you knew I just had to ignore the sweet, but chatty admin girl as I buckled down to go to 'my happy place' while the needle went in. I love that you loaded me up with cheese and biscuits down the arm of the chair. Love that you hated walking into that infusion room as much as I did; or was it because I did?...I love that you think the cancer center's slogan is as pretentious, insulting and full of marketing madness as i do ('for us, cancer is personal'). I love that you said that if I like Miss J the crazy nurse in the infusion center then you would like her too. She does totally crack me up. I need a little spark of crazy in that place.

I don't know if Dr K would pick up on the small ways you and I communicate in his appointments. We are the masters at loving 'undercover' you and I. It might be just a quick glance, you put your arm around me, stop to clarify a question, ask the awkward question (it's a brave man who asks the Dr about his wife's ovaries!) Just you standing by me, sitting in that horrible office that has delivered us blow after blow after blow of devastating news...but there you were with me again today-my incredible lover, my soul mate and my best friend. 

You're my best thing. Definitely.

xx

she's coming to visit

This morning began with a deep sadness, and has held far more joy than I ever gave it the possibility. If it were up to me it would have been a morning alone at home, waiting on my appointment, with a knotted stomach reminding me that the Brain MRI might not be clear. 

The day that started with nausea from a concoction of drugs, the day that Brave's little arms wrapped me up tight while i tried to sleep on. The day my mind kept running ahead to what the end of my days may feel like to live in. The day that I didn't hold out much hope for being anything fun or sunny or...well, much like living in technicolor.

But then the day surprised me in all the best ways, and in all the brightest ways, and the peace is bigger than the sadness.

I'm trying to put skin on what it looks like to live this 'cancer is back' thing. I'm wrestling with it. Not even trying to be gentle with this giant that has scared me since way back in 2011. Nothing tender in my confrontation of this beast. I will look at it from all sides, I will wade in and set my spirit and sights on Jesus the author and perfecter of my faith, and in Him I will come up trumps. I will.

But the trying to put skin on it is exhausting me, and I just want to 'get my nanna on' and pull that knee rug up and drink my tea and contemplate/nap it out.

Huz wants to whisk me away. Book a flight and just go. Maybe the big C wouldn't follow. But then that just seems a little too perfect and easy and I just love the sound of it. Pity I would just be carrying it with me. That sums up the hate I have of a disease that I can't even see, mostly don't even physically know I have, and for which the treatment is going to just about make me crazy.

But the best part of the whole day was when my sunshiney sister called from Turkey. She's been doing a lot of that lately. A lot of calls, a lot of Skype and FaceTime, and a lot of love poured out in prayers and tears and whys and the bond of sisterhood is strong and intense in my pain and diagnosis. She's coming to visit. She's not supposed to be here, was not at alll schedulled to come, and has to leave my three sweet nieces with my amazing brother in law for a week to do it, but she's coming.

And now I know it, now i've stopped telling her to quit being ridiculous and just not worry - we can keep Skyping, it's fine she's so far away, she's where she's meant to be doing what God has for her, fulfilling the dream of many years ago which was so potent they left it all for Turkey last year. And now I've stopped telling her not to come, I'm desperate to see her. Totally given in to the excitement of a huge hug, of some tears together, of her strength and beautiful heart to be here next to me. I can't wait. And it's only a week away! I don't even think I can wait that long to see her I really don't. 

So bring it on. Bring on another day of whatever it may be. Not only is my brain free of cancer, but my sister is coming. Today was awesome.

cancer is back

I'm asking Jesus to help me know how to write this. He is a very present help in times of trouble. 

My trouble this past week has given me a run for my money. My faith under fire as so much of what I have feared and hoped would not come to me is now here in deafening proportions. 

my cancer is back.

The facts are pretty straightforward: Monday morning I gave my onc Dr K a call as I had some blurred vision in my right eye and thought that a referral to an opthamologist (eye doctor) might be a good idea. Within the hour he had me booked into a brain scan and told me outright on the phone that it could be my cancer had spread to my brain.

The stink of death sat in the pit of my stomach.

I rang Huz and despite me saying to him not to worry he met me there at Tennyson. I sent a quick message to some girlfriends to pray for me, and I'm so glad I did. Straight after the appointment we met with Dr K who could see some tumors on my skull. 

'What the hecka' (as Brave would say) 

what the freakin' hecka! 

That was so entirely out of the blue, such a punch in the gut, such an arrow launched at my heart.

That same morning I was folding washing, cuddling Soul and tucking him into bed, and now I am told that I have terminal cancer. 

And we almost ran out to the car, and Huz held me while I sobbed and groaned, and begged it all away.

Then came 4 or 5 more tests; bone scans, CT scans, MRI's. My arm is pin pricked and my heart is too.

All I can say is that I'm heartbroken.

My Huz, my boys...it's all I can breathe, think or know. I'm not ready to say goodbye. They feel like home and I don't want to leave.

There's more to say, but my heart is aching too much.

May your grace be enough Jesus.

unlife

The following post was written almost a year ago, but here it is a little late, but better late than never!




to my boys:


i've been thinking about the power of my words. more to the point, the power of others words over my life. especially when i'm in a vulnerable place. especially when those words linger and stay: days, months or years.

sometimes it's been a collection of words - spoken by a few people - sending a message to my heart - demanding i listen and take heed.

but not all words spoken over my life, spoken into my particular circumstance are edifying, or even true. i've got a growing collection in my conscious memory of various doctors offices where i have had words of 'unlife' spoken over me; words that do nothing to build my spirit up, and instead do their darndest to tear my fragile-tissue-paper spirit.

words of 'unlife' can mascarade as knowledge. they can hide in good reason and under the blanket of statistics. words sending a message to my spirit that it's all for naught anyway, that evil has won, that my deep potent longing for peace and truth has run dry, evaporated with ill-health, or bad luck.

an example is the often said phrase, 'if you havn't got your health, you havn't got anything'.
these words has of late produced a gnawing ache in my spirit. until 15 months ago i was in perfect health my entire life, and in ways i am only beginning to recognise, that was a 'bubble' of protection i felt i was in. well now the bubble has popped...so now what?

words of unlife have often sounded so true when they are spoken over me. a couple of times i havn't recognised them, and so have spoken the same words from my own lips. nope. still unlife in em. guess unlife is unlife no matter who speaks it. My 'health' never was everything. i might have wanted it to be, but God never says if i loose my good health it's a deal breaker. instead he says that nothing can separate me from the sweet love of Jesus. nothing. and that includes cancer.

i've found though, that living 'with cancer' is quite the opposite to what I would have imagined. I have all that I need in sickness or in health. I possess the Spirit of God living in me to strengthen me to be able to do whatever is needed. often his strength in me has released me to put aside my own state of affairs and serve others. my eyes see life in a way i never could before. His spirit in me allows me to just breathe at those times my heart feels it will break. His spirit is the cool breeze that blows over me when all i am is angry and want to have a temper tantrum. His spirit washes me with a peace so steady in my heart that it doesnt make sense when you see what is going on around me. 

 instead of believing that 'i havn't got anything' i'm believing that actually i have all i need.

this is my answer when friends and family wonder aloud how we are coping with all that has happened in the last few years. this is my answer: in myself i'm not strong enough, i don't have enough reserves. in Christ i have all that i need, and his power is made perfect in my weakness.

Jesus, i love that you know just what i need, and today i needed to get this out of my head, and onto paper.

brave

Yesterday morning we dropped True off at school, Soul at my mum's, and then Brave and I headed in to Tennyson to see Dr K and get my next injection. it's just hormone therapy - puts me into menopause to stop the chance of recurrence - none of the boys have come with me to ANY of my medical appointments, so it was to say the least a really big deal to bring Brave into this world of mine...a cancer treatment center can be confronting, but somehow it felt right to take him with me.

Traditionally i am petrified of needles since more often than not my veins have to be dug out of my arm before any blood can be drawn. This particular needle is an implant in my tummy, so it's a big needle with a serious sting. i actually put a local numbing patch on an hour or so first. it's the only way i can handle this needle. even so, every single time (this is my third monthly one...i'm counting down...only twenty one to go) i freak out that the patch won't work and i have to 'get in the zone' or i'd run out of that room!

Brave patiently waited about 10 minutes in the waiting room munching on almonds and dried fruit while i looked at my bible on my phone. 

Be strong and courageous. Do not be afraid. Do not be dismayed. For the Lord your God is with you wherever you go.

When i lay down on the bed, i notice a little head next to mine. He wants to hold my hand. 

something in me breaks a little. maybe its the cynicism that's been building since i've been sick, but somehow this little hand in mine...it's a bridge between me and...seeing the glass half full maybe? A bridge back to expecting good, seeing that i'm not alone dealing with this cancer. 

my strong and amazing Brave.