It’s been 2 weeks since Scott went into Peter Mac for surgery to remove his rectum.  He was calm and in good spirits.  We expected a 4 – 5 hour operation and a 4 – 5 day stay in hospital.  Things haven’t really worked out that way.   The surgery took more than 8 hours, and although it went well, there were complications and he’ll probably be in hospital at least 3 or 4 more days.

When I found out he was still in theatre 7 hours after going in, my brain collapsed.  For the next few hours my imagination went into overdrive, imagining every worst case scenario there was (burst lung, inoperable cancer, actually dead already).  When I finally laid eyes on him I felt the most enormous relief.  At that point it seemed the worst had been overcome.  He had surgery, he survived it.  Win.  And apparently it went very well.  Double Win.

Scott was sitting up and eating roast beef and vegies for dinner by Sunday night.  He’d had a walk around the ward.  He’d showered.  We couldn’t wait to get him home.  And then things went downhill. On Monday it was clear his stomach wasn’t processing food, and his digestion was not functioning properly.

Since then it’s been a waiting game.  The wonderful doctors and nurses at Pater Mac have done what they can to minimise discomfort, maximise health and keep him going until his digestion gets moving again.  Of course, despite best efforts, discomfort has been high and health has been in decline. He’s been in almost constant pain, lost 5kg and suffered through nausea, explosive vomits, dizziness, dehydration and exhaustion, not to mention a whole host of other indignities that no-one should have to endure.

There’s so much more I could say about the detail but I just don’t feel like writing about it.  I could describe all the tubes and lines and drips and feeds going in and out of him, and how they provide him with all the inputs and outputs that keep him alive and pain free.  Fluids and nutrients in; waste out.  The basics of life, and none of it happening naturally.  I could share how I imagine that might feel; how raw, vulnerable, exposed and frightened he must be late at night when he is so utterly dependent on a machine and a nurse for his continued existence.  I won’t though.  He hasn’t even had a chance to explore that for himself yet.  He’s so absolutely focussed on surviving each day that he just can’t go there.  That’s his story.  Maybe I’ll ask him to share it here one day.

My story is a bit all over the place.  I’m alternately tough and fragile, present and absent, coping and collapsing. For the first time in my life I’m NOT 100% capable in a crisis.  I’ve never had a crisis like this I guess.  I’m living a bit of a groundhog day existence.  Days at the hospital; nights keeping normality going.  I took a week off work, then I realised I’d have to take another week.  Now it looks like next week is a write off too.  I suppose theoretically I could work while the kids are at school, but I just can’t see myself ‘delivering client value’ while he lies there alone.

I feel alone. I’m surrounded by friends and family who do so much to help, and there are offers of support every day.  But the reality is that no-one else can be me.  No-one else can sit with him and hold his hand.  No-one else can give Alexa the comfort a Mama can when life is all upside down. No-one else can step in and be me for a few hours, so I have to just keep going.  I guess there are plenty of people out there who have that in their everyday life.  It’s not sustainable for the soul, but this is not forever.  I’ve been feeling the suffering of others very deeply in recent days. It’s like a window has been thrown open.  I can’t imagine if there wasn’t an end in sight for us.  There is gratitude within the suffering.

There is plenty more to come on this journey, but we may be nearing the end of this stage.  Scott has a temporary bag (a stoma) to collect waste for the next 3 months while the surgery wound heals.  As soon as the stoma output thickens, and is less than 1.5 litres a day, he can go home.  It’s happening very slowly.  Some days it’s not happening at all. Yesterday he felt great, had plenty of energy, and output went down.  Today he was weak, in a lot of pain, wanted to sleep all day and output went up.  I cried a fair bit today. I thought he’d be home for Fathers Day but it doesn’t seem likely now.  I just want it to be over.

I chose today to write an update.  If I’d written yesterday, or even tomorrow, it might have been a much more uplifting story.  Who knows what tomorrow will bring, but I’m wishing on a star for a good one.