That was unexpected

It’s complicated!

What do you do when your husband is diagnosed with an incurable leukaemia, your anxiety-ridden son is desperate to return to his hometown, you decide you need to sell your house and you want to spend your 50th year in bed reading?

You do it all of course.

OLYMPUS DIGITAL CAMERA
Misbehaving cells . “Wikicommons”

Multiple myeloma, you are a bitch.  I’d use a stronger word but I’m a lady.   We were not expecting you. I thought turning 50 would mean more time to read.  In the year of my 50th birthday, I sent up a wish that I might spend it reading, drinking coffee and wine and salute the first 50 years off with a trip to Europe –  in that order.  I got my wish. Well, some of them.   I read in doctor’s offices, chemotherapy wards and isolation rooms. I drank hospital coffee and wine at home alone while my husband lay sick from a stem cell transplant.  When my 50th rolled around in July, instead of Paris,  I was sitting in a lovely room at Royal North Shore hospital reading about Paris by his bedside. He was so sick he didn’t know I was there.  At least I got the reading part right.  I really should have been more detailed when I made that wish but details have never been my thing.  That’s his job, the sick husband that is. He took the year off to be an absolute superstar patient and left the details to me.

That was a mistake.

He’s always been the one who knew when the bills were due. He even paid them. On time! I was under some illusion that the lights stayed on through willpower and a little bit of magic.  I had no idea how a direct deposit worked.  I know how to order books though. I’m fantastic at that. However, ordering books online doesn’t fill the fridge.  You see my job was to read. Yes, I keep the kids alive with love, a clean bathroom and put enough washing through so that you can see the floor of the laundry –  and I write when the inspiration hit me.  Reading is my main job. Unpaid mind you. I do it out of the goodness of my heart. My loving husband accepts this. My introverted, anti-social oddness was endearing and he handled the details of our life so that I could get on with the business of being introverted, anti-social and odd.

Until January 2017.

In what was supposed to be an uncomplicated foot issue,  dependable husband – from here on known as DH, went to the GP after his loving wife, me of course, nagged him into it.  He doesn’t do doctors.  No one in his family does doctors.  It’s a thing.  They don’t need doctors.   “My leg looks like it’s falling off?  I’m sure I’ll be fine with a cup and tea and a band-aid.”   “This lump on my head?  That’s been there for years.  Don’t worry about it.” I’m serious. They don’t do doctors.  Who in their right mind doesn’t do doctors?  So I tormented him until he went to the doctor and because he hadn’t been to a doctor since the early eighteen hundreds, the doctor did all manner of tests.

One of those tests came back with news we didn’t expect.  He has leukaemia.  Multiple Myeloma.  Multiple what,  I said.  I’ve never heard of it.  I was soon to learn all about it.  There is no cure.  It’s rather serious and he’ll need some serious treatment.

The serious treatment began soon thereafter.  A bone marrow biopsy ( why don’t they knock a person out for that – it’s so painful.)  A double femur implant to stabilise both legs where cancer had weakened the bones and left its mark ( we call him Wolverine.) Chemo. More Chemo. Stem cell harvesting. More chemo.  Stem cell replacement. Recovery.  And here we are.  Over a year later but of course life goes on while your husband’s body is making other plans.  You still have a family, children to love, coffee to drink and books to read.  The world doesn’t stop when you get the news, though it should.  Everyone should look and feel as horrified and afraid as I did but they didn’t.  Everyone should have stopped in the middle of a car park and said out loud “how  would I cope without him?”  On one should have honked for me to move.  “Don’t stand there love,  you’ll get run over.”  No one should have needed to say that because the most dependable man on the face of the earth has been diagnosed with leukaemia and that should have stopped the world.

It stopped me.   What would I do without him, I wondered?  He pays the bills, he reminds me when we need food, he puts petrol in the car even though I use it the most – to go and get books.  He gets me out of the house to have breakfast on the weekends.  He patiently listens to the plot line of the book I am reading and the one I am trying to write.  Who else would I want to do that for me?  How on earth would I survive without him?  Who would love me as much as he loves me?  I couldn’t think of a single person who knew me so well as DH.  I absolutely refused for that to change.  I still had that laundry floor to deal with and a teenager with a severe anxiety disorder whose beloved dad was sick as a dog before his eyes. That dad who had always been dependable, strong and took care of details was bloated from steroids, bald and throwing up.  That is not something your son’s psychologist orders for his anxiety disorder.  “Mrs May, go home and conjure up cancer, it’s just what the boy needs!”  No,  that wasn’t the wish list. I checked it twice.

This son,  this beautiful, bright, quirky, introverted magical boy had asked to go home to Canberra where we raised him.   The moment we landed in Sydney on the eve of his entry into high school four years ago, he was miserable.  DH and I are from Sydney.  We love it. It’s home – but it’s not his home and as the mum of every socially awkward brilliant kid knows,  change is hard.

So what do you do?

I became a nurse, therapist, cleaner, organiser, bill payer, health advocate, researcher, dietitian, pill dispenser, needle giver, declutter and minimalist who lives in two states and tries to please everyone.   Oh,  and I  put a house on the market.  Did I read?

I shall tell you.

 

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20 thoughts on “That was unexpected

  1. Oh I’m so sorry to hear this. What an awful, awful time for you all. It’s so difficult to see our loved ones go through this, and it’s challenging to be the caregiver too. I truly hope the best for you all.

    Liked by 1 person

    1. Thank you Carrie. We found out that even through really difficult moments, we still laugh. He found out he can let go of the control and trust me to mess it up and then fix it up and we still laughed.

      Liked by 1 person

  2. My heart aches for you. My dad had multiple myeloma in the 1970s when they didn’t know much to do for it. Many years later, my best friend had it. What were the odds? I pray your husband will respond well to his treatments.

    Liked by 1 person

  3. One of my very best friends was diagnosed with multiple myeloma about four years ago. She had a bone marrow transplant, chemo, more chemo, and on good days (of which there are many) she takes (local) trips, goes to movies, has massages and attends adult ed classes. Her husband has been by her side throughout it all. Your husband is lucky – he has you right next to him.

    Liked by 1 person

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