Archive | February, 2016

..before you go!

21 Feb

As keen as I am to get home later today, I knew it would be foolish to rush.  One of the benefits of not pushing, is that final checks revealed my haemaglobin has dropped since the surgery (as was expected.)

So, I was able to have a last minute blood transfusion to ‘top me up’. Thank you again you wonderful donors out there, still a year post transplant- my health is being improved by your generosity!

The ‘To-do’ list at Discharge includes a final physiotherapy session on the ward, confirming future appointments with Orthopaedic specialist at ‘complicated fractures clinic’ and of course with my BMT Consultant.

I must say I’m looking forward to a big bowl of green Asian veg, with sesame oil and soy sauce. The hospital fare wasn’t really doing it for me and I found myself humming ‘….hospital food’s gettin me dooooo-owwnnn’ ah la David Gray.

Tell me you don’t find this ‘Moroccan style chicken’ appetising?
(I promise, in that ahhhhh, slop, there is  one piece of chicken! Look closer. It’s down there on the bottom right of the plate!)

Final step was to change the dressing on my surgical wound. Nurse Jaynne – who’s heading for a career in the ADF, did a great job getting this scar across my thigh and butt looking clean and ready to go home.

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Puppy cuddles await…

21 Feb

There’s nothing like home. Sure, you can think instantly of the creature comforts such as your own bed, a nice lounge, the ability to be able to grab something from the fridge when you like etc. but for me – the things I’ve missed most are of course my puppies; Ch’i, Lila and Phoenix Hope.
Paul is doing a great job looking after them, but we both are so grateful to our darling friend Krissy, who is again going above and beyond. This crazy, loveable lady goes to visit our girls everyday. She hangs out with them, cuddles, plays and just keeps them company. A beautiful extension of our friendship is how seriously she takes her role of ‘Godmother’ to the girls.

This is a special pic, as Krissy really doesn’t like having her photo taken.

…and not to be left out, my little brother Skype’s in to see I’m ‘following Drs’ orders’.  Crack in’ day in Adelaide – look at the colour of that sky!

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THR – done.

20 Feb

Once again, I don’t fit into the ‘typical’ profile of a patient requiring this latest treatment – a Total Hip Replacement (THR).  Nothing I can do about it, but a little more detailed planning for my various medical teams.
Clearly the Bone Marrow Transplant team, led by Dr Kennedy are my ‘go-to’ guys (& girls). This Avascular Necrosis of the hip and THR is being handled by Orthopaedics though, so there’s a whole new team and dynamic to consider. Let’s just say it’s been interesting….

The Australian Pain Management Service (APMS) is heavily involved! As is the Physiotherapy team. Include the nurses and you’ll understand I’m never lonely – hospital is a very busy place and I see a lot of people! (Usually right when the heavy drugs are kicking in and I can’t string two words together!)

Thankfully today I had a fun visit from one of my ‘besties’, from way back in high school days. She’s seen me indulge in too many champagne’s so is pretty understanding. Today though, Jen; a very capable mother-of-two, took over bathing duties for me! As she gently washed my back, I giggled so hard I was sure I was going to fall through the seatless toilet/shower chair I was perched on! Not your average hospital visit🙈

Thankfully my drain hasn’t been collecting that much blood, so it’s coming out! One less tube….

And this my friends, is my new left hip!

Incredible isn’t it?

This x-ray also shows a deterioration of the bone in my right hip, in line with the early stage Avascular Necrosis reported in the MRI a few weeks back.

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Everybody shufflin!

20 Feb

Day One and I’m proudly ON MY FEET WALKING! (Okay shufflin’ – but I’m fully weight-bearing with the slight aid of a rollator. UNREAL!


Mum had just arrived – how cool!

Dr Halliday earlier confirmed operation went well and that it would be only be a short stay in hospital.

When I asked about doing the other side he replied, “I’m not going to hack into your right hip, it really doesn’t look that bad. I don’t know why you’ve got this pain.”

Well, I thought we’d been over the fact that crumbling bone might have something to do with it, but he now seems unconvinced!

He told me that when the cartilage was peeled back, it revealed a mass of crumbling, almost powdery bone-like substance and that the deteriorated bone had basically been ‘encapsulated’ within that cartilage.  There’s no saying that’s not already happening to the other side.

That’s the report from the initial MRI, we’ll see how I recover from this THR and whether there’s been any progression of disease in the right side.

 

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Can SO do this..

19 Feb

This is hard core. I’m trying to recall some of the conversations and incidents pertaining to my care and the expected success of this surgery on my left hip (keeping in mind the right will have to be done soon).

Whilst ‘mechanically’, it’s pretty standard, the finer details in planning and taking necessary precautions have involved a lot of people with expertise in several key areas. It’s not solely an ‘Orthopaedic job’ nor is it ‘Haematology’, however big decisions to make this as safe as possible require specialists from both fields.

Apart from my Coke ‘splash’ yesterday, the team set-up a platelet transfusion for me to cover two hours of surgery time + an additional bag. (They have to be agitated, so I willingly took on the role of ‘chief agitator’😜, while I would otherwise have been just laying around watching someone else do it.)

It was a big bag too – 340mls.

  

The Anaesthetic and pain relief was a bit tricky for the team to fine-tune, given my allergies (I can rattle them off quickly now – Codeine, Tramal, Endone, Ketamine and Erythromicin!!)

In Pre-Op, my surgeon said he wasn’t worried about fixing my hip, but was concious of my ‘overall poor health’. A seemingly simple little issue could become a life-threatening emergency for me very quickly. Still, my hips are dead/dying and the left one is broken – this has to be done. Happily, my neutrophils are good and the infection risk is being handled as well as humanly possible.

Food (with GVHD considerations), fluid, oxygen are other elements being taken into account.

My drug-affected recollection is that I tried to smile the whole way through, even when sliding across onto the operating table. It was very noisy when I drifted off to sleep; metallic banging of instruments, people buzzing around and the Anaesthetist holding my hand firmly.  We had discussed doing a nerve block in both hips, so I could enjoy 8-10 hours of reduced pain. The surgeon had agreed and I said thank you before 💤💤

   

NASTY – but alive and I’m in one piece. Those were my initial thoughts on waking.

Navigating my way through the next crucial 24-48 hours is not going to be fun, but I have always found that by being observant, focused and actively involved in my health care, things can be easier.

The nurses here in Orthopaedics don’t know me as well as the guys and gals in the BMT unit. It took a bit of persuading to make them see I was ready to get up on the day of my surgery…hey, if an 80 yr-old can do it, I can do it!

WOW….. Breath-taking. I remain still, politely ignoring others in the room while I allow myself to soak-in the beauty and power. This simple sequence, which has today led to me being on my own two feet (relatively pain free), is awesome.  Life is….awesome.

   

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‘Own two feet’, just hours after complicated THR..

18 Feb

 

Morpheine with Coke chaser = surgery delay!

18 Feb

Oral morpheine, my go-to pain relief at present, tastes pretty awful.  This morning at the unsociable hour of 4am, I decided to wash it down with a mouthful of Coke.

Dumb idea.

As the lovely Nurse Zach and delightful Dr Tom prepared me for surgery, with blood tests and platelet transfusion etc. they casually asked about the last time I ate or drank. I confessed to my post-transplant sweet tooth gulp of the ‘black aspirin’ that followed the morpheine and other meds, and they just glared at each other.

Although I was safely within the 5am cutoff time for fasting, Coke wasn’t water or black coffee or cordial which were all permitted beverages. Their faces told me I was in trouble…So much trouble the Anaesthetist came and changed the surgical list. I’d been bumped from position of first cab off the rank. 

Now, I sit, I wait. I am grumpy, with a dehydration-related blinding headache.  Don’t suppose they’d give me a can of Coke? A sip?

   

  

   

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Hammer time

18 Feb

Just think for a second about using a power saw to cut out a significant chunk of your skeleton…. There’s nothing delicate about today’s total hip replacement (THR) surgery. 

Sadly, my hips are in bad shape following my bone marrow transplant and long-term steroid use. Both have a degree of Avascular Necrosis. The left one (being tackled today), is fractured across the head of the femur. 

  

I’m tired, in serious pain and feeling rather impatient to get this done. It’s hot, I’ve been fasting, I’m thirsty!

Enough of the whinging already, let’s get this done…….

Home – but not as I know it.

18 Feb

….And not for too long.

I know this is only a short stay, under two weeks to enjoy the comforts of home and my gorgeous girls Ch’i, Lila and Phoenix Hope (any excuse for more puppy pics!)

  

After assessment by Physio and Occupational Therapists, I’m out of hospital with crutches, rather than a wheelchair, rollator or walker.

Good thing hadn’t planned anything else in the time back on the Coast, as I have been unexpectedly sick.  Unwell to the point where I actually packed my bag for hospital expecting to be re-admitted.  I didn’t feel sick, but all of a sudden was violently ill, repeatedly – for no obvious reason. I had one 24-hour period that is a complete blur of tumbling out of bed to the bathroom, having a ‘few moments’, before crawling back to bed in such a state I could barely believe it. I was heaving nothing, unable to keep a tiny bit of water or electrolytes down (let alone all the medication I have to take) and shaking uncontrollably. Completely exhausted, I willed the day and night to end, so I could catch my breath!

Which brings me to breathing. Ohh such a simple, critical and beautiful life-sustaining act.  Countless times, people have asked how I keep getting back up for the next round of ‘misfortune’ I’ve been dealt. To be completely honest with you, more often than not it comes down to just breathing my way through.  My daily yoga practice (sadly somewhat altered and less-energetic of late) is my most effective coping strategy (okay – that and a slightly warped sense of humour!) How do I not get completely overwhelmed, lose my cool, or drop my bundle?  By choosing to be ‘mindful’ at every opportunity. The term ‘mindfulness’ is quite en vogue, but it’s really just a modern way of describing a behaviour that through the ages and practices such as yoga, Tai Chi and meditation, can be put simply as ‘focusing on the moment’. All sounds a bit ‘new age’ to some, but it’s historical roots can’t be denied. I’m so grateful for my Nana’s influence here.  As very young children she taught us (and thousands of others who attended her yoga classes), to breathe, focus our thoughts, be calm in the decision making process and….breathe.  My deep affinity with this learned behaviour is something that I have continued to seek out in adult life through readings, classes and courses. It is most definitely a skill, an incredibly valuable one that has helped me navigate some pretty tough challenges. Don’t get me wrong – the odd meltdown still occurs, but is usually rather mild and short-lived.

This ‘hip drama’ has pushed me almost to my limit. I can’t quite put my finger on why though. Perhaps it’s a combination of the timing around my 1st birthday (on which all I wanted to do was celebrate being alive!) and the break-up of my marriage, the physical incapacity, loss of recently regained independence, turmoil of major surgery and all that entails (twice over!)…..not to gloss over the PAIN. My goodness, the intense bone-crushing pain, the searing nerve pain, the all-over hurt my body is experiencing is unrelenting. I’m on a cocktail of pain relief medication courtesy of the Palliative Care and Pain Management experts. Keeping on top of it is so tiring and the drugs are not without their own side-effects. As Pink once sang “……morpheine is making me itch!”

Soon, I’ll have a new left hip, made from a combination of steel, ceramic and plastic.  Soon after that surgery, the team will do it all again for my right side.

Time to get back on my feet. 

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But ‘I’m’ the patient.

5 Feb

9pm tonight, almost exactly 48 hours after that horrible experience with my ‘roomie’, Boom! Another.

A voice from behind the curtain demands “nurse get me a sleeping tablet – you’re keeping me awake!”  “I’m sorry, what can I help you with?” She asks.

“You, because of you I can’t sleep, you’re in here socialising!” She spat.  The nurse replied “Ahhh, well no.  It’s part of patient care to develop relationships and yes, we have been chatting.” When challenged again, the nurse pointed out it wasn’t that late and it wasn’t unreasonable…also that the patient still had her TV on.  “Yes – and it’s LOUD!” She bit back, “to drown out you and Kate.”

What?! She knew my name and used it?!

“Excuse me”, I said “after the other night, this is intolerable.”

She exclaimed at the top of her voice, “but I’M the patient!”

I took a deep breath, but couldn’t help myself, eventually saying “I guess I could politely point out that I am too”.  As the nurse reminded us that we had to share the room, I painfully shuffled my butt to the edge of the bed to lean over and reach my new crutches. I went to leave and for the first time saw the lady behind the curtain.  I was in complete disbelief that someone could be so unwell, yet find the energy to be so aggressive. As our nurse left, the nurse in charge promptly entered to try and break it up. In a frustrated hobble to the door, I thought to myself, you lady are a seriously nasty piece of work.

Over the past few days I have learned that sadly, her condition is terminal. I am acutely aware of the range of emotions she may be experiencing, fear the one I have overheard her talking about the most. It makes me upset that she appears to be leading such a miserable existence and that her final weeks or months are scarred by this sort of outburst.

As the nurse in charge tried to calm the situation, the woman piped up at me again “You have influence in here…” What?! I said “I beg your pardon?”  She raised her voice even louder, “Ohhh don’t say what, I know what I need to say and I’ll do it in the morning….”

This was bullshit.  I was out.  Unsteady on my feet, I gently swung my broken hip forward and put one leg, then one crutch in front of the other and went to the patient lounge.

Deep in thought over the awful confrontation, and trying to reason that everyone deals with stress differently, I burst into tears when the nurse in charge came in to make sure I was okay. I was shaking.

As I apologised, saying I felt sorry for the nurse looking after us and that I should have left the room without saying anything, the nurse in charge told me she was glad I stuck up for myself. She consoled me with a tub of lime jelly and shared with me some horror stories of abuse and violence from other times in her nursing career. Truly shocking. I now know why there are signs in health care facilities all over saying things like ‘zero tolerance’.

I realised I couldn’t sleep in the lounge and was not looking forward to lying on the other side of the curtain to someone I’m so repelled by. I imagine it might be like being on school camp and having to share a tent or dorm with the class bully.

News travels fast and the rest of the nurses on duty were on it. Many asking if I was alright as my crutches and I slowly clunked our way back to the room.

As I sit here typing away, I’m not so concerned about the tap-tap-tap of my fingers on the keyboard. The smart-arse part of me is tempted to turn the TV on, and crank the volume!

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Lights out!

3 Feb

I can not believe this just happened.
My ‘neighbour’, the woman in the bed next door in this 2-bay room has picked a fight with me about having the light above my bed on.
A bit miffed, I asked her if she was actually asking me to turn it off? (It was 9.20pm).  I told her I was waiting for assistance to get to the bathroom (’cause I can’t walk!) and I would switch it off when I came back. I went to the bathroom, had a sook with the nurses and returned, pulling her curtains closed as I shuffled past on my roller/walker thing. I turned off the overhead light, but before my machines were even plugged back in, she went on the attack again.
The light she was now angry about was on the machines providing me with drugs including pain relief!!
Incredulous, I hit the call button for the nurses. As one entered, I stifled tears as this woman told me she ‘couldn’t possibly sleep with the light on, she was in pain and had such-and-such disease.’ This was obscene.  All I could say was ‘do you really want to go there?!’ I covered my head with a pillow as the nurse calmly explained it was a share room, don’t fight, we had to try and get on etc. etc.
She’d had her TV blaring all afternoon, while I had visitors…. No-one complained.  Clearly we are both sick, otherwise we wouldn’t be in here.
As I appealed for a little more respect due to that obvious fact, the nurse exited and my neighbour promptly started snoring!
Sweet dreams💤

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‘Looks okay’.

3 Feb

Test results are a big deal, especially when they can show definitively whether there is ‘active Leukaemia’ in a person who’s had a Bone Marrow Transplant to get rid of the potentially deadly cells.

The first signs I had something really wrong (following my Breast Cancers), were; bone pain, unexplained bruising and fatigue.  Below are some shots of my bruised bod over just the last few days.  You can argue the bruising is caused by low platelets, high-dose steroids or Heparin (it’s to thin the blood and reduce the chance of DVT, I’ve been having it injected into my belly since being laid-up with these troublesome hips).

My most recent Bone Marrow Aspirate/Biopsy was performed last week and it’s been a real effort to keep things under control.  It’s a pretty standard test, but it does take the lab a while to process the information gained from taking some bone marrow from the top of the hipbone.

A new Dr I hadn’t seen before had the pleasure of delivering some good news last night – telling me casually that it ‘looks okay’.  

……….I guess there’s nothing more to say really. 

    
  

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Complications and conversations.

2 Feb

‘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!