All the photos in this post are by Kelsey Grace Photography. The most talented, delightful and sweet photographer I have ever encountered. Love you Kelsey! Thanks so much for these beautiful moments captured.
We managed to squeeze in a session at Mt Lofty Gardens around April before I got even sicker. After all, who wants to look at photos of Hospice instead of this? The boys had a ball. Absolutely loved posing and choosing what outfits they would wear!
Fun.
A turn of events has occurred, and his name is Hospice. All instigated by pain at home that my drugs couldn't touch.
My littles, you will remember this time as the one where Daddy slept over lots at my hospital instead of being at home. This is the third week, so I'm feeling more able to be here on my own at night - and so I've sponsored you having Daddy back at home again.
You're welcome.
Hospice is horrid and pretty amazing simultaneously. The staff are beautiful, and the doctors are focussed on making me absolutely comfortable with as much pain relief as this girl needs. Looking back on how much daily pain I was in being at home compared with Daw House it's insane. I was putting up with heaps of pain, but not anymore baby!
The horrible part of Hospice is really just that it is Hospice. I badly want to be home, badly want my life to carry on, carry on as it seemed to be doing quite nicely before horrid bossy cancer butted in.
So, here I am in Hospice. Another downside being that I am 50 years younger than every other resident currently here. It just feels a bit yucky to be that super special as it were...
A big upside of Hospice is the ice chips. oh yeah. Without a doubt. They are amazing. So refreshing and crunchy. Is there ever a time I don't feel like a bowl of ice chips? Nope. They are brilliant for little me who has lost her appetite and hasn't eaten properly the whole time I've been there, and who dreads the yellow sheet that arrives with breakfast each morning listing the options for the day. Choosing anything from that list is a seemingly gigantuan task when even ice cream or chocolate custard are daunting much less Spaghetti Bolognase or Ham Steak. Yikes.
My new/old doctor (Dr M) is very likeable, very knowledgeable, and very kind. I'm glad he's so amazing because I'm missing my doctors from Tennyson. I've been treated at Tennyson for around 3 years and most of the time it was weekly, so I've been feeling a little lost perhaps in the transition. I miss the nurses at Tennyson. A lot. I love you Tennyson nurses. You know why.
I am glad for the flexibility at Daw House for me to come home. They are really keen for me to come home lots and I guess that fits into the whole 'quality of life' thing.
My 'background pain' is being managed by a morphine pump attached to my tummy. That means that at all times I have a blue 'pencil case' to carry around. I've tried a few different ways to disguise it - in my handbag I think is the best. Huz and I had brekky at Cafe De La Paix and although he teased me that my 'catheter pump' was hardly noticeable, I think the old 'in the handabag trick' worked a treat. After all, if I get stares from strangers it's usually turban/headscarf focussed first. And one can only fit in so many 'casual glances' in my direction. So much to stare at. So little time.
As for living with a morphine pump at home, it's gotten a little more complicated. You littles step on it, sit on it, or pull it out of my tummy at least daily. A couple of nights ago I carried my pump (in my handbag) up the ladder to Brave's bed so that I could give a goodnight cuddle and a foot rub. Before I had even gotten to the top I was interrogated:
'Mum, why are you carrying your handbag up the ladder to my bed?'
'Well darling, all mummies carry their handbags up bunk beds sometimes. Didn't you know that.?' (Can't help a bit of 'tongue-in-cheek' it's way too tempting).
So a little bit of silly chucked in here and there is ok sometimes isn't it? I'm just trying to keep it normal...
And so the puzzled expressions that followed on True and Brave's faces with the little furrowed brows were totally worth the teensy tiny exaggeration on my part. Think you might remember my morphine pump (pencil case) one of these days my darlings? Ha!
So, being home is just how it sounds. Completely delightful and utterly unsettling in its own way too. Huz and I get used to me being in hospital, and then get used to our beloved routines together at home again. Can do your head in. Or should I say, it has done my head in.
And while I absolutely agree with that famous 'someone' who once said that the word 'home' is the loveliest in the english language, it does come with responsibility.
My last pump incident (shall we call it) was entirely my fault and not even a chance to blame you littles. Before we left I had a stack of birthday presents to wrap and so the other night after True, Brave and Soul were all tucked in, I decided to get stuck into wrapping them. So, with my wrapping paper, scissors and cards all set up on the table I merrily wrapped away. Only one little hiccup. On my very first gift, I got set cutting the paper to size when I felt the scissors needing to have a little more pressure than I expected. It only took a moment to realise that my tiny, transparent morphine line had been expertly snipped in half as I cut the paper. Groan...How could I be such a clutz? So, with my head between my tail Huz and I headed back to Daw House to ask the girls to fix it. Oh deary.
To their credit, the nurses only laughed with me, and told me other stories of times they had done similar things. Bless them. I had been so certain I would be in trouble!
I have the sweetest, most glorious room at Daw House, with access to the wide porch and gardens outside through my own private door with lead lighting across the windows. And it's a single room, so I'm really quite spoilt.
So it's been another one of those awful transitions, yet another one of those awful, unwanted declines, and I find myself in Hospice and being told that as a result of choosing to not have any more chemo, I am looking at days or weeks of life and not a scrap more. And I'm left with a 'frog in my throat' and a tummy that turns if you remark that the year is 'flying by' or if you comment on how 2015 has caught you by surprise and has gone 'so fast'.
The choosing to not do more chemo was easy and hard and difficult and straightforward and scary and surreal. My last chemo drug Halaven was so foul and recent for me that as I 'looked back' on it I felt again physically sick at the idea of pumping more poison through my little body.
So, although this was extremely difficult on Huz to start with, I know he is much more on board with the reasons for stopping chemo now. More on board doesn't exactly mean completely on board. He's choosing it's my chemo choice, so although that's still a difficult thing, I'm feeling the love.
It is a crazy big difference I admit. To go from fighting to supporting. Going from fighting cancer proactively to what one doctor at Daw House called 'supporting cancer'. Yeah, there's a horror no matter how you look at it really.
Despite what the doctors do or don't do to to treat my cancer in terms of chemo or radio or hormonal therapy etc etc; they have all given it like 100%. Nicely done docs, nicely done. I know with all my heart that it is God who holds each of my days in His hands.
But you know, it's starting to feel like I'm on count down my little ones. I don't like this at all. Not at all. Count down feels too final, and too soon. I'm desperate for longer. Hate the immediacy of being sick, not feeling I can even walk far, even see far or live far beyond myself. I miss the 'us' of unplanned days and slow and relaxed ones too. I'm wanting you to remember these days for me. On my behalf. I love you so big, and love that Jesus loves you even bigger.
Mum xxx
All the days ordained for me were written in your book
before one of them came to be.
Psalm 139.16
