Tag Archives: BMT

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.

 

Tags: , , , , , , , , , , ,

Back in Black

5 Apr

Not in an Amy Winehouse kinda way..

But….Congratulations dear Donor, Dr’s and nurses – the numbers are good.

For the first time in over two years, my pathology report is not red line after red line.  My all important counts have recovered to the point that I’m in the ‘normal’ or ‘safe’ range for most readings.  This is a huge improvement and actually came as quite a shock because I’d been feeling so dreadful in the lead-up to today.

IMG_2660IMG_2659IMG_2662

Although I didn’t get to see Dr Kennedy today – I’m certain he would have used the words becoming ‘stable’ to describe these latest results.  Nurse Kylie and I think so anyway!

Tags: , , , , , ,

..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.

Tags: , , , , , , , , , , , , ,

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!

Tags: , , , , , , , ,

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.

Tags: , , , , , , , ,

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.

 

Tags: , , , , ,

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.

   

Tags: , , , , , ,

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. 

Tags: , , , , , , , , ,

‘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. 

    
  

Tags: , , , ,

Sharing it around.

31 Jan

Writing about my experiences is an interesting experience in itself.  The majority of people are very encouraging (many suggesting over the years that ‘there’s a book in it’).

Sharing bits and pieces on social media is one thing, but the blog is a little more detailed and the prospect of a book – much more so.  On occassion I receive some lovely feedback, which really does warm my heart and spur me on to write or share more.  Whilst marking my ‘1st Birthday’ last week, a complete stranger took the time to send the message below.  It made me stop and really think about just how many are involved in keeping people like me going.  I was pretty chuffed that by sharing on Insta, this person could feel my gratitude and saw fit to reach out.  I can’t tell you how many hundred times I’ve walked along the corridor, past the lab in which my donor stem cells were processed.  The scientists and people working there just as important to my survival as the awesome team of Doctors, Nurses and Allied Healh staff.

 
To all, another great big, heartfelt thank you for your work.  And thank you to my friends and family who helped celebrate this one year milestone in a variety of ways – including cards, delicious doughnuts, beautiful natural body care treats and the old favourite – cup of ice!  I wasn’t expecting to be back in hospital, but you guys have made it a more pleasant time. 

   

Tags: , , , , ,

5 C

30 May

I could write a book on this experience (and one day I just might), for now – I’m exhausted, but needing to try and ‘collate’ the four and-a-half months I’ve had in Ward 5C getting ready for and having my unrelated anonymous donor Bone Marrow Transplant.

The chemotherapy regime I’ve been on this time in preparation for transplant is FLAG: FLudarabine, High-dose Cytarabine (Ara-C) and Granulocyte colony-stimulating factor (G-CSF).

There’s been some horrible experiences and some hilarious.

I’ve had fluid on my lungs, pneumonia, and felt like I was drowning in my own body.  I’ve needed breathing assistance, suffered the humiliation of incontinence and worn an adult nappy.  I was moved to ‘Room 1’ which is pretty much the last stop before people check out – permanently.  Those nights the ICU Doctors came to see me.  I didn’t want to be moved to ICU, I felt safe in 5C, they were experts at looking after transplant patients.  It was certainly a challenging time.

There have been no less than five occasions where one of my treating team has stood at the side of my bed and delicately explained that I ‘might not make it through the next 24-hours’, so if I needed to say anything important, now was the time to have those conversations.  Thankfully, I’d prepared Mum and Paul for this likelihood and they were comfortably aware of my ‘final wishes’.

IMG_2041

Some of the drugs made me hallucinate. I was watching lavender grow from the ceiling and seeing faces in the bare white painted walls. I was talking to people who weren’t there. I was texting Mum saying I know she’s in the corridor outside taking about me and to just get her gown and mask on and come in.  Mum was at work – on the Gold Coast!

Who knows what I was saying to the Drs and nurses during this time.

IMG_2306

IMG_2346

IMG_2392

I did have a bit of respite a couple of times, staying in a unit nearby where I got to sleep uninterrupted (no obs or beeping machines), and eat what I wanted – which unlinke my pre-chemo diet was really unhealthy – chips, pre-prepared frozen meals etc.

Before too long though I was headed back to hospital.  A few times I woke in the early hours with spontaneous vomiting and a dangerously high fever.  Going through the Emergency Department was necessary – but so exhausting.  They had to take blood from my line, as well as two peripheral sites which means more needle sticks.  I’m trying to avoid any unecessary processes on my arms, as I’ve had lymph nodes removed from both sides as part of my breast cancer treatment and am therefore at greater risk of developing lymphodema – an irreversible, painful swelling of the arm.  So, I have my blood pressure taken on my leg and try to avoid those extra needle sticks when I can.

Not a fan of confrontation, I struggled with some of the side effects of certain medication.  Some made me quite agitated and I found myself fighting with people. Most of the time I caught myself and was able to stop, but there was one particularly awful exchange with my beautiful nurse Lettie.  We’re friends now, but when she found me crawling on the floor looking under the bed for my little dogs Ch’i and Lila things turned ugly very quickly.  I was crazy out of my mind on Ketamine (I can not believe people take this as a ‘party drug’!) and didn’t like her telling me to go back to bed, that she’d spoken to Paul and the girls were okay.  It was a little white lie that didn’t work.  I got right up in her face and told her as much.  Paul almost got a phone call at 3am!  It took the amazing Pete to resolve the impasse.  Boy was I pissed though.

Then there was the ‘incident’ with my central line.  Again, I blame the drugs.  I’m convinced I tried to get out of bed to go to the loo and tripped over the pole, accidentally getting caught up in all the tubes and dislodging the central line as I fell to the floor.  Others argue I ripped it out of my neck/chest, then as I bled, tried to stem the flow and clean myself up by using rolls of paper towel!  I honestly do not know.  What I do know is my nurse Tash yelled quite loudly as she entered the room ‘ Kate! it’s a fucking blood bath in here!!’.  It was, not only was I bleeding a lot (especially with extremely low platelets), I’d also snapped the food line, so there was stinky, sticky white glue-like fluid mixed in with the blood all over the floor.  There was so much it had spread through to the bathroom and when Tash and another nurse Ness started the clean-up we could hear their shoes squelching through the mess!  After making sure I was okay, Tash sat me on the end of the bed and told me not to move.  She tells the story much better.  This one will go down in history.  Dr Katherine came to remove part of the line still hanging from my chest.  I had surgery the following day to insert another line.

IMG_2386

Breaking down

Sweets Syndrome, Mucositis and central line yanked, then properly removed.

IMG_2388

IMG_2389

Some of the complications I’ve experienced include CMV, Sweets Syndrome, Graft Versus Host Disease (GVHD) of my skin and gut and cataract.  More detail on them some other time.  Namaste.

IMG_2393

Tags: , , , , , , , , ,

ROLLER COASTER OF THIS REALITY

12 Aug

So I’m back on the roller coaster of fortnightly monitoring through blood tests. I’m gaining a whole new education as I learn about blood cancer and the definitive factors which will impact upon my care – the importance of numbers of red blood cells, white blood cells, platelets etc.

Through how I was feeling physically, the fatigue, the shortness of breath, the extreme bruising plus this new understanding of regular blood tests – I could tell things were sliding and quickly.

My last appointment with Dr Kennedy backed this up.  I’d shown a marked decline in the last 2.5 months of records and he felt we should be aiming for transplant prior to Christmas. WHOAH…….. This was a shock for my family and I.  It appears I was a whole lot sicker than any of us realised.

He indicated if there was anything I desperately wanted to do, that it was a good idea to do it now, as it’d be a while before I was well enough. My first question was to ask if we could wait until after Christmas as my little brother David was getting married and it would be odd for the family if I wasn’t there.  The answer was ‘on this current trajectory Kate, you probably can’t hold on’.

Next – I asked if I could squeese a trip to New York in, in between my fortnightly bloods.  The answer was an emphatic yes!  So long as I went soon. Dr K said it was the best medical advice he could give and that I should experience the Empire State building at night.

Tags: , , , , , , , ,

BONE MARROW/STEM CELL TRANSPLANT UNIT

22 Jul

First visit to the Bone Marrow/Stem Cell Transplant Unit at the Royal Brisbane Women’s Hospital (about an hour from home on the Gold Coast) was a rude shock.  The sight of multiple, massive waiting rooms full of sick people smacked me in the face like an icy breeze and I wanted to run.  It’s not been so long since I was one of those people and I’d hoped my time as such was done.

I’d been referred to Associate Professor Dr Glen Kennedy.  Luckily for me, a man I could be very direct with and enjoyed an instant rapport. He understood my ‘need to know’ and that taking the softly softly approach was not necessary – a great start given we’re talking about life and death.

I was not surprised when he delivered statistics giving me a survival time frame of somewhere between 3-9 years if my MDS was left untreated.  Learning how quickly this disease could progress to Acute Myeloid Leukaemia was troubling and my gut instinct was quietly screaming ‘pay attention Kate, this may be the path you’re headed along’.  I chose to keep that to myself.

The consultation finished with some wise words and a very strong take home message from Dr K – ‘You will see a transplant in your lifetime Kate, you won’t survive without one.’

Tags: , , , , , , , , , , ,