hooray for steroids

It's 12.18am.

I don't have a wink of sleep in me. I even lay down next to Huz for what I was imagining was a sleepy talk before drifting off, but then somehow he was almost asleep beside me and I was all, well, awake.

I knew at chemo today that I would feel kind of super-charged when I got home (thanks steroids. you make my face puffy, but gee I like the energy you lend me) as that's kind of been the pattern, but somehow I let myself forget, and now, here I am in a deliciously quiet house with an awake mind, which is a rare combination let me assure you. 

I've always loved the sound of our house in the peaceful quiet of littles and one big boy asleep. The hum of our fridge, soothing tick of the clock and faraway thrum of Shepherd's Hill Rd noise. It's nice. It's soothing. It's so familiar.

And tonight i'm glad chemo today is over. And I'm not going to lie that it was a calm afternoon as such since one moment in time involved Brave and I crying on the floor, 
(separate rooms, same moment in time, completely different reason).

And when I think back to it now it's terribly dramatic to cry sitting in the middle of the kitchen floor, and I really think if I had thought of it at the time ( I didn't, which is a pity because I love a sincerely dramatic moment) I would have had a teensy tiny smidge of smug delight. oh cancer cancer where art thou?

Ahh. A good 'sit on the kitchen floor and sob' moment. nice.

Because sometimes you don't know why, but a good cry is what fixes whatever is a little broken.

So. Like the good girl I am I decided to get things done. Like a boss. And indeed I have.

This week I have begun to record myself reading aloud 'The Chronicles of Narnia' starting of course (though I know it's out of sequence) 'The Lion The Witch And The Wardrobe'.
I'm having so much fun recording it, half imagining that at any moment I will be interrupted while I attempt some character voices to bring it to light. Really, it needs only to be read in a monotone voice, as even doing this C.S.Lewis is genius and the story really is undeniably magical.

And of course for me I get caught up in the magic of it all. The magic/truth that it slowly uncovers as Aslan is so beautifully, terribly good,and the White Witch so undone with evil.

Will the boys listen to it down the track? I really don't know.

I probably hope too much that these three of mine want me to soothe them to sleep when my voice-and my self-has been missing. Maybe that this story will speak, maybe my mummy voice lull them off on nights they miss me.

It's ok however they need to roll. The words are here for them, my prayers will saturate them, my stories will wait till they want them.

So perhaps the 'long goodbye' that I'm saying is lots about me and my heart and how to let go of all this life and love just as much as it is for my boys to help them keep on living well their lives and loves.

One of my daily joys is reading 'Narnia' to True and Brave in the evenings before bed, and am beyond stoked that they are soaking it up. I truly thought it might be a little too old for them, but, thank goodness they have been absolutely indulging me with looking forward to it and we are almost at the end.

Love these small moments together with the hearts I love the best. 

And it's funny, because if you peeped into our house about 7pm you would find us piled all together pouring over the huge volume with the lion etched on front and it might not look like much. But to me this is the essence of it all, the way I choose to spend some of this final chapter of my very own life, in that warm place with my little loves beating out this love story of Jesus as we read together.

More. than. blessed.

 

prognosis. oh dear.

There is a really big difference between knowing that you will die one day, and being told by an oncologist that you will die soon, and probably in 2015.

oh my.

At times people have offered to comfort me by saying that they suppose we are all in the same boat really, as all of us know that one day we will die, it's just none of us know when.

i've been told when. 

And it's truly such a shocking, rubbish, unbelievable, horrid piece of knowledge to be handed. I've not asked to hand it back, (or re-gift it. can you do that?) but I really should. It has changed almost every thought, every plan, every purchase, and every hope for the future with my littles.

It hasn't changed that God is good or that Jesus is the Man. It hasn't changed that I'm excited to imagine being in heaven, in that place of no more pain, with my forever family.

It has changed practically everything else though.

Yesterday I was writing in my diary and flicked over to February to write down a coffee date with a friend, and maybe, just maybe a little naughty word slipped out as I realised: one month down, eleven to go.

oh crap. (not the actual word that slipped out, but you get it).

And Huz went quiet. The kind of quiet I now know he goes when what is happening is awful, and maybe he's working to find the words to speak into it. 

I have no idea what the literature advises that you say when your wife is counting down the months as if she has been handed a death sentence that is all neat and nice and she seems to think it'll hit exactly 12 months, and now she's running, running, running, marking in those diary dates, all those nice moments, all those birthdays, celebrations, events, and the mundane too, but all it adds up to is just 12 months, and now one of them is already gone.

Already gone? No. That can't be right.

And it does my OCD self some good that this conversation with Dr K occurred on the last day of 2014, on New Year's Eve, so that in my very black and white, concrete, desperate to hold on to some sense of order personality - well, maybe it was like I was suddenly on a starter block and the starter's gun went off, and now here we are - late January, heading into February.

But it is in no way the same thing as knowing vaguely, generically, in the distant (hopefully) future that we are all going to die someday.

No. This is a little bit more specific.

How can I ever say goodbye to this little Soul smile? Melts me. And if there's ever a poke or prod to get my inner 'lioness arising' then here it is.

I love you little guys.
xx

little sister visit and brave's words

I love it when my little sister comes to visit.

It's been a while. The school holidays have put a halt to most routines, and it's been fun to live out the days surrounded with small boys and loud voices, but now I'm counting down the days till school goes back. Only a few weeks to go. Phew!

And True and Brave were almost giddy waiting for her to come. She's so loved around here. And she's always been amazing with kids, she has the heart for them, and I reckon my boys smell the love that's on offer and just want to dive into it. 

They're lucky to be bathed in Aunty love this morning.

And I love the way True declared that since she was arriving first thing he would be able to wait. Thank goodness she's coming at 8.30 said he on his eighth check of my iPhone.

Half an hour can drag when you can't wait for the fun to begin.

And so I was given the gift of extra sleep while my boys skidded around outside showing off their skills to my sister. And when I woke up there was evidence of sketching and car races down ramps and home grown and hand picked plums eaten by very happy boys.

Such a gift to this tired mamma.

And I've spent the rest of the day with this guy. My middle little. The one who needs people people all day long. 

And I know we've all heard it before, but it has to be said again: old man cardigans for president!

Apparently it is also important when one goes on holiday to button it right up and comb it all over.

Huz and I took the boys to 'the rocks' where he proposed. Took them up there for a bush walk and breakfast overlooking the city.

Brave's 'on-camera' smile as we wildly embellish the story of Huz's proposal. Brave says he might propose up here one day too. That would be rad. Just put this lame smile in your pocket if you do dearest.

Brave and I just finished lunch out on the deck in the sunshine.  He says the most unexpected things. Today it was the following. And I quote:

"I know how God is everywhere. He curls himself up like a blanket to the world.

Or maybe he’s standing and he reaches heaven. With his long arms".

My favourite is the blanket. The sun is streaming in and today I can imagine it.
God wrapped around us like a blanket.

From the mouths of babes...

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no time off

I know what it is now. This surging, circling, wondering feeling in my gut when I think about Huz today.

I can't comprehend how he is processing everything that is happening with his wife, his love, the mother of his children, his best friend. I am all of these to him, and he is all of them to me -barr the mother part (!)

He has promised me that he will always be here for me. Always. With no time off.

That takes my breath away. That I have this offered to me every single day. This kind of deep, connected, intimate offer. Because 'being there' for me is absolutely a physical demand to care for me, take me to appointments, dish out pills etc, but it's also highly emotional. And that's a huge ask. Huge. It asks Huz to risk a lot, give a lot of his own heart.

And, because it's me he's married to, it also means he gets to listen. A lot. To the same content. Again and again. 

It's how I process. How I think. How i off load and make sense of it all. It always has been, but now the top topic of conversation is cancer.

Phew. That's full on.

And I just realised this. The 'no time off' part I mean.

What? no time off? chemo is SO time consuming...

Sure, he goes to work, mows the lawn (religiously, and I love it darling), he does our food shopping, gets to go on boys nights (sometimes, not often enough though), and sometimes he even gets to go the church and singlehandedly handle our mess of boys (I've decided that a group of boys should be called a 'mess' rather like a 'herd' of animals or a 'school' of fish).

He never gets time off.

I can see it in him as he leaves for work this morning. He has a tender due, has been working (unpaid) on it over the weekend, juggling looking after the boys, household duties, caring for me etc.

He never gets time off.

The past few weeks he has been trying to work out why my new medications are making me groggy and exhausted and have been making my skin crawl. He sits up late to put all my pills into my medicine box. 

He never gets time off.

Most nights he stays up later than me and watches TV. Tries to decompress a little from the day, escape maybe for 40 minutes and think about Jack Bowyer or some fictional worldwide disaster while he enjoys an apple icy.

But he never gets time off.

I know this because our hearts are so entwined that what is happening to me is happening to him, only it's so much harder because he has to watch it happen from the outside, wonder if I'm in more pain than I'm saying I am, heat me up endless water bottles for my bone pain, dish out endless Endone so I can keep keeping on, listen to my weary words and my desperate need to be heard and connected with.

But he never gets time off the gnawing reality that one day 'we' will stop being 'we' and it will just be him. I'll not be here anymore. And he never gets time off from that.

I don't think I can even be me without him. I don't even know who that girl would be, because the thousands upon thousands of strands connecting us overwhelms me, and how would we break those bonds...I can't even comprehend us as separate. And so maybe we never really will be separated. Perhaps our hearts will stay together after all.

Or I just desperately hope so. 

And each trip to church without me reminds him that one day it will be like that every time. And each time I have to stay home from an event, miss out on a family activity he is reminded.

I want so badly to give him 'time off'. Real time off from our reality. From my being sick, from him carrying both of our loads. Care free, endless, relaxed time off without a care in the world.

But he loves me so big, so wholeheartedly that even if he wanted time off I know he couldn't. Because as long as I'm suffering then so is he.

And that's love.

So now I'm thanking Jesus that because He first loved Huz and I, now we know how to love each other. 

And I guess that means no time off. For me or for my Huz.

happy birthday aunty s

Today was a celebration of one of my beautiful sister-in-laws birthday. A very significant birthday actually. 

Hurrah!

But. I was so sad to miss out today because we've been re-adjusting my pain medications and so I was stuck in bed rather than getting to join in all the fun at Lobethal. 

A really fun part about the amazing family I've married into is how they like to celebrate birthdays - and today was all about the girls. Dressing up pretty, beautiful flowers, candles, macaroons, desserts and coffee and an afternoon together. Doesn't that sound amazing? (And Aunty Betty you really are the queen of pulling off a perfect event. You could run your own event co-ordination business without a doubt).

And isn't it always lovely to heartily celebrate those birthdays among our closest especially if we remain a few years off the birthday girls age still? I dunno, it always feel rather satisfying. Like vicariously living through them whilst at the same time remaining my youthful, 'not-even-quite-40' self.

And today's birthday girl is one of those extraordinary people who never, ever ever blows her own trumpet (or is that a horn? I always get that expression wrong....) she is the epitome of the word humble, and that just makes me more in awe of her actually.

Aunty S you are without doubt one of my favourite people to spend time with. I remember when my babies were little, and before that when your babies were little there just never seemed to be time to finish a conversation, much less be in the same room at the same time for any length of time to get to hang out. Life was hectic, and the 'little baby stage' fun, but I think I could count on one hand how many times we got to have a coffee together.

So for a long time you were on my list of people I just wanted to get to know so much better.

There really are some crazy good things that have come from the awful hard of the last few years, and one of my favourite things is the way you came to rescue your little brothers family while I was in the middle of treatments and newborn fatigue, and you just got busy showering love on my boys while I cocooned myself away to rest. Having you around our home was such an amazing gift, and somehow we even had a chance to have some coffee's together without all the littles interrupting. 

And that's when I knew just how blessed I was to have you as my sister-in-law. 

I guess that's when I stopped thinking of the 'in-law' part, and just think of you as my sister!

You are one of the best listeners I know. I never feel rushed when we spend time together, you are really good at being in the moment and hearing my heart.

You are one of the best cooks. Oh my goodness your lasagne and shepherds pie is talked about around here!

You have often lent me a gentle perspective on something I've been going on about that shows me wisdom far beyond my own thinking. I need this in my life.

I love the intentional way you and Uncle D live. I feel like I could ask you about so very many aspects of how you guys choose to love Jesus and live out your faith and there would be depth there every time. 

I see the beautiful connection and joy you have in each of your kids, and it's so so lovely.

You are loyal, kind, and always give others the benefit of the doubt. I often hear you building other people up and I love that.

And do you even know how beautiful you are? No I don't think you do - I would give anything for such gorgeous cheek bones and perfectly styled hair. You are so unbelievably photogenic!

I'm so glad you're my husbands sister and so I get to have you as mine too. Being the oldest sister growing up I always wondered what it would be like to have an older sister - and now I know - it's really amazing having someone like you on my side.

Happy Birthday!

love Cath xx

good cop bad cop

I have a favourite doctor.

She's young, intelligent, dresses beautifully, and is drop dead smart.

She talks to me like I have a say in my treatment, and she looks me in the eye and asks me detailed questions about my medications even though she knows that Huz is the one who keeps track of all that and I actually know very little about what I swallow morning and night.

But she lends me dignity by asking me, knowing I'll default to Huz, and its gotten to be our joke now that this is how it'll play out.

She is totally 'can-do' about making holidays happen for us. Actually it was because of her 'go for it' attitude that we got to Bali in December 2014, and she reminded us today that we have mentioned a jaunt to Europe at some point, and she gave us some insight into when might be best to plan a trip like that.

The constant blood transfusions, IV meds etc all have to be worked around, but she gets that it's worth it to me.

Today she noticed that I looked tired. I was. I felt really tired, and you know how sometimes when you're told you look tired it makes you feel worse, tho with her noticing it just felt like she really saw me. Not just the me that is a little puffy faced from steroids with the punk chick spiked hair, but she actually saw me.

I have another doctor too.

He is very experienced, off the charts intelligent, has literally 'written the book' on cancer (or a few books to be exact) and I have a sneaking suspicion he doesn't really have to write down the details of my case as he keeps it all in that amazing mind of his.

He is witty and sarcastic which I like. But somehow we leave appointments with him feeling a little extra deflated. A bit heavier. Like we have been reminded afresh that yeah, I am dying, this is a horrible aggressive cancer, and gee whizz what 'the hecka' are we gonna do. We kinda know this already, so the weekly reality check is a little overkill.

Driving home today I wondered aloud to Huz about that. It's all in the delivery me thinks. All in the 'how to' of the news given, the importance of side effects, the living out of this disease which can liberate or deflate.

A 'Blue Moon' rose to balance the one my fav doctor gave me. She's a gardener too. 

So i'm lucky. I have two brilliant doctors, and they have both been humble enough to collaborate on looking after me. Being Stage IV it's not a cure that either is after, but instead this intricate balance between the actual treatment of my cancer and all the side effects of the drugs used to keep it all in check.

The living out of this Stage IV extravaganza has shifted a little in the last few weeks. It's been a messy week with lots of hip pain and some pretty yuck mornings. Pain is often an indicator of undercover menacing goings ons...don't want to think too much about that, but there it is. In my thinking anyway.

And so the ground I'm walking on may be shifting yet again even now. Just as I have adjusted to the tad bit more energy, the tad bit more independence, gardening, pottering, cleaning, arranging and beautifying my 'Robinvale'. 

Soul helping me organise our new pantry cupboard. Cheeky bottom!

And I knew the shift would come and I would one day meet again more limitations, more edges to living this out, but I don't welcome it today. 

In fact if I could just stay well for another two weeks until the end of Christmas holidays that would really help me enjoy my boys being home and then I can crash as they head back to school. Yes. That sounds like a reasonable plan cancer. Pity I can't bargain with you like I wish I could. You're so jolly bossy.