Complications and conversations.

‘Cranky-Pants Carlyle’ is a nickname given to me by a Program Director I used to work with in radio.  As News Director, I was tough, didn’t tolerate inaccuracy and encouraged, no demanded the highest of standards.  One station’s Managing Director used to introduce me as the ND who had an iron fist in a velvet glove.  I was just doing my job and expected the journalists in my newsroom to also do their best.  It was a privilege to report the news everyday, we had to get it right.

You know how amazing my medical care has been.  Tonight though, I’m a little disappointed.  Without going into too much detail, bagging anyone or getting anyone into trouble – I feel a bit let down by ‘the system’.  Certain individuals have worked very, very hard, have gone above-and-beyond to get scans done and resolve this latest complication.  For this, I am very grateful.  In the meantime though, I feel as though I’m going backwards.

I came to hospital last week for an MRI on my hips and then to have my 1 year from transplant Bone Marrow Biopsy.  I was awoken by Dr Kennedy to tell me I had Avascular Necrosis of both hips and also a fracture in my left hip.  Nasty.  I wasn’t going home anytime soon and was not allowed to put any weight on my fragile/broken joints.

Thankfully I was admitted to my old ‘home ward’ of 5C, where the familiar faces were as friendly as ever.  The nurses did everything in their power to make me comfortable.  Lying around is not something I’m keen to do after spending so long doing just that before, during and after transplant.  (It’s also a real kick in the teeth for someone just starting to regain her independence.)  All of a sudden, I wasn’t allowed to drive, couldn’t go home and was not able to see my beautiful girls!

I’ve worked so bloody hard to get back on my feet, but now I’m being forced to put them up.

While the nurses keep the medication for pain coming, I’m awaiting a consultation with the Orthopaedic team on what should be done with my hips.  I’m waiting patiently.  The Physiotherapist has been to discuss the use of a wheelchair, walker or walking stick both before and after surgery, we also talked about the prospect of doing one surgery on both hips or having them operated on separately.  An Occupational Therapist came to talk about how I would look after myself at home, living on my own, with three dogs and still needing to get to a heap of medical appointments.  They are going to send someone to do an assessment on things like access, my sleeping arrangements, the bathrooms and kitchen.

What I’m needing now is a game plan and only the ‘Orthopods’ are suitable experts, everyone else is sweating on their advice and action.

To say I’m a little frustrated is an understatement. Keeping this in-check is hard, especially when I’m in such extreme pain.  The flip-side is I have been totally overwhelmed by the people who have ‘shown up’ during this tricky time. 

A group of sensational women I went to high school with 20+ years ago have been right with me in the thick of this – bringing cheeseburgers and Doughnut Time doughnuts and a nightie for when I have the op/s.  My amazing neighbours came armed with delicate tea, lip balm and moisturisers – as well as a GP’s caring and understanding. The true blessing though is a precious friendship. And a Kindle loaded with dozens of books was hand-delivered all the way from the Gold Coast, by another special friend. This was so thoughtful and such a lovely surprise!

I’ve become such good mates with some of my medicos.  So cool.  The co-ordinator of one of the Clinical Trials I’m in collected the last lot of bloods for research – but has again offered an ear should I need someone to listen.  Many of the other nurses have kept me entertained in the middle of the night chatting about everything from some of my transplant horror stories to little Phoenix, favourite restaurants, music, weddings and babies. There’s never a dull moment, in fact there’s been a revolving door.  Good thing I love a good story!