Tag Archives: RBWH

Stormy Skies

10 Apr

It’s one of those stormy and unpredictable nights on the Gold Coast, eerie almost.  Perhaps a reflection of my life at the moment as I consider that just as quickly as they roll in, storms fizzle out.  Maybe the thunder and lightning are even Mother Nature’s way of reminding me that powerful, violent fury can and does end, often leaving a beautiful, fresh glow.

I do hope that’s the case with my current situation.

I must point out that I’m not caught up in a terrible bind, I’m just playing with words.  However I do feel like I’ve been at the centre of my own ‘storm’ for a while now and quite frankly, I’d like it to pass.

In trying to bring about an end to a sort of stalemate with my marriage, I’ve decided to collect my two gorgeous girls and take up a room at my Mum’s place (okay – a room & bathroom + parts of her sewing room, kitchen, living, outside area….)  Paul will move elsewhere and we will rent out the apartment for the time being.

Those of you who know me know how ‘house proud’ I am.  More than that though, I truly adore living in this apartment. It’s in a great area, safe, quiet, in an amazing building, with brilliant design.  It’s also a tad luxurious.  This place is special for other reasons too.  I think of it as kind of like an elegant NYC Brownstone – but white!  The entry is through a glamorous lobby and we were lucky enough to secure one of the terrace apartments on the ground floor – so not only is there plenty of room for the girls, but there’s also direct street access.  I can walk across the road to acres of parkland, the riverfront and the ‘magical tree’ I’m so drawn to, or pop over to the banks of the private lake.  I also have a few neighbours I count as friends, who have become a big part of my life.  It’s stunning in design, yet understated in its feel.  The kitchen is just perfect for entertaining (which again, if you know me – you’ll know I love nothing more than having a house full of people to feed and clink glasses with), the bathrooms are fully tiled with beautiful travertine and I’ve decorated accordingly – continuing the earthiness with timber, leather and steel.  We’ve added a really nice black granite circle of life water feature and the timber arbour is playing host to a very healthy wisteria.  I am yet to see it flower in full bloom.

Elegant.  Sophisticated.  Home.

For the eight and-a-half months I was in Brisbane last year, I dreamed about this place. Every single day I willed myself stronger so I could return home.  I can ‘make home’ anywhere, really.  But this little apartment, well, it just feels good.  I love everything about it.  It’s the only home little Phoenix has known, where Lila loves to bail up the delivery guys and where my darling Ch’i took her final breath.

As much as I love this place, I’m not too naive to pin all my hopes on returning. I of course hope I will, but as we all know – a lot can happen in a short space of time.  We’ll just have to wait and see.

There’s heartache and disbelief to deal with first.  The reality has certainly been overwhelming these last few days, as I’ve moved some things to Mum’s, sold others and sent the rest to storage.

The emotions are running high.  It’s devastating to be honest – but I need to try and keep everything in check.  Seriously, the drama of three lots of cancer plus a bone marrow transplant isn’t enough? The destruction of my career, my marriage…and now this.  I’ve had a gut full to be honest.  What I could really do with is a break! This period I am certain, is meant to be THE most amazing, happy time of my life – as I should be celebrating the fact that I HAVE A LIFE! Courtesy of a lot of hard work by a great many people and of course, the generosity of my incredible donor. Instead, there’s more major upheaval as Paul leaves and blames the ‘cancer bubble’.

Well, fuck you cancer.  I don’t need to be around those who can’t deal with you.

Fuck you cancer, I am a grateful soul.

FUCK you cancer, I wake up happy.

 

..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.

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!

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.

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.

   

Work up

28 Oct

The latest results aren’t overly fantastic, in fact they’re pretty shit.  It appears my MDS is progressing quickly.  There’s every chance (and it’s my ‘gut feel’), that it has already ‘transformed’ into AML, but the only way of telling that is through another Bone Marrow Biopsy, which will be done later this week as part of the ‘work-up’ for my transplant.

My work-up includes preparation for full body radiation as well as things like getting a baseline reading for my heart and lung function, a check of my skin (and removal of anything suspicious – luckily I only had one little spot on my back which had to come out), eyes and dental health etc.  you know, before every part of my body is affected by the transplant process which includes some heavy-duty chemotherapy.

There was something like 18 appointments in three full-on days!

IMG_0024 IMG_7471 IMG_7477IMG_7486 IMG_7490 IMG_1934 IMG_7509 IMG_7510 IMG_7511