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.
No….it’s not a new car, I am under strict orders to keep off my feet.
Not only do I have Avascular Necrosis of both hips, my left one is BROKEN! I’ve been walking (awkwardly shuffling) around on a broken hip and am lucky the other hasn’t also disintegrated.
I didn’t get to go home from hospital yesterday and will most likely be in for a while as I need hip replacement. The Orthapaedic team is due to visit today.
Please enjoy Dr Kennedy’s doodles;
I’m gladly accepting some heavy duty pain relief (well I know what’s causing the excruciating pain now!), have a few stitches in my right arm after having a spot removed by the Dermatology team during checks, have a cannula in (as I no longer have a central line) and have a very sore back/butt/hip on the right, where the Bone Marrow Biopsy was performed yesterday. Body is a bit of a wreck.
In the meantime, I’m very pleased to say I’m back in the familiar surrounds of 5C, with so many of the special nurses that looked after me during transplant. We shared chocolates yesterday as we marked my 1st birthday, or ‘cell-iversary’ together.
I think I did pretty well to get out of hospital without three things; a wheelchair, walker, or walking stick. Although weak, I was determined to shuffle along on my own two feet no matter how long it took to get to my destination.
Recently, I’ve been struggling to walk and could’ve done with the aid of any of the above! Yep, I feel like a bit of a Granny.
A crushing, searing bone pain has really been affecting my hips – particularly the left one. It’s an un-nervingly familiar pain. Not an arthritic kind of ache – a definite, stabbing pain deep into the joint. I say familiar, because along with fatigue and unexplained bruising, this bone pain was the first sign of my MDS which quickly turned into Leukaemia. Before we knew what it was I was being treated by a Rheumatologist who thought my bones were sore from my previous chemotherapy and gave me cortisone injections to try and ease the pain. No amount of steroids were going to help!
My next Bone Marrow Biopsy, which will show any worrisome activity, is a week away. Until the results are back, I’m choosing just to enjoy every single day. With no anxiety, stress or panic. As I’ve said many times before – I can not control this, but I can control how I deal with it.
Poor results from the BMB is worst case scenario. Next in line is Avascular Necrosis of the hip/s. In layman terms, the blood supply to the bone is affected and the bone dies.
I had an X-Ray yesterday showing my hips look okay. Apparently that’s entirely possible even when AVN is present. Both my GP and Haematological Oncologist suggested this might be my problem. Unfortunately, treatment includes a total hip replacement. I’m having an MRI in coming days.
I may have survived the transplant process, but sadly, the same can’t be said for my marriage.
After almost 14 years as husband and wife and 20 years together, Paul has decided it’s time to go – he can no longer be part of this ‘world of illness’. It’s been seven years and three rounds of a hellish cancer roller coaster, a ride that he never asked to take. You can’t blame him really.
Paul dropped the bombshell about three weeks ago and I’ve been trying to get over the shock since. After a morning of me throwing up violently, he finally broke and suggested that if I want to ‘run away to become a monk with the time I had left, then he wouldn’t stop me.’ I was admitted to hospital that afternoon and later that evening came the explosion and shrapnel wounds…
My central line was hooked up to a variety of supportive therapies; fluid, pain relief etc. I lay in my hospital bed while we Skyped, and not long into the conversation Paul blurted out ‘it’s all getting too hard and if we split up then we can each just do what we want………..’ No judgement here about being so brutally open and honest – the timing on the other hand was dreadful. I guess there’s no ‘good’ time to drop something like this though.
So, I freely admit to asking for some additional pain relief in an effort to try and wipe me out from the nightmare unfolding around me. The big difference between the patient and everyone else is that others can choose to opt out – those of us with the disease can’t. Don’t try to tell me you understand.
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’.
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.
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.
Sweets Syndrome, Mucositis and central line yanked, then properly removed.
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.
Although treated to a couple of days or a few hours ‘day pass’ here and there, most of the holiday season 2014-15 has been spent in hospital. Not exactly the most colourful of places, but the staff did their best to make it as festive as possible. Some of the Pharmacists even played carols on violin and sang – not what I was expecting!
I spent Christmas, New Years, my 37th birthday and our 13th wedding anniversary in these four walls of Room 34. (I’ll just have to make up for it next year.)
My gorgeous friend Catherine, who had APML 11 years ago, made me the most beautiful headpiece from healing stones – rose quartz etc…. Delivered personally on Boxing Day.
My brother married his long-term partner and mother of his three children Amber. I wasn’t well enough to fly to Adelaide for the ceremony, but technology meant I could Skype in for the ceremony..turns out it occurred as I was having a platelet transfusion. My nurses for the night Allanah and Amy ordered pizza and we dialled-in!
Wedding via Skpye, platelet transfusion and pizza party!!!! Who would’ve thought!
To say there was high emotion in my hospital room on January 29, is quite an understatement. The day I was to be given a third chance at life had finally arrived.
My body, weak from now three rounds of incredibly intense chemotherapy, designed to all but wipe out my immune system, was crying out to be saved. The time was most definitely here. I was sore, sick and fragile – but so focused on this beautiful bag of cells that had been so generously donated by someone I don’t know, on the other side of the world.
Found out one of my favourite nurses Nate would be administering the cells. I was really pleased. It was his first Bone Marrow Transplant and my ticket to survival.
The day started with a 4.30am blood collect (as has become normal) and I noticed this on the wall opposite my bed.
These nurses are just such wonderful people. Yes, it is a happy day. It could be (and maybe should be) terrifying, but it’s not. I am very ready for this. Mind is strong.
As Paul, my Mum, and cousins Marnie and Jodie gathered around, many others sent messages of support. As the drugs accompanying the stem cells took hold I went to my ‘quiet place’, I focused, thanked Dr Kennedy and his incredible team, looked Nate and Charlene in the eyes and thanked them. I said a million thank you’s to my anonymous donor.
Gratitude for eternity.
This bag of stem cells – presented on a tray, will enable me to see another day.
As I come to the realisation that my body will fail without more chemotherapy, I deal with the truly harrowing wait for news on whether a donor can be found.
I could write page-upon-page of how I’m feeling deep inside; about the disbelief, heartache, desperation I am experiencing at news my sister can not be my donor as she is pregnant and bringing another life into the world. That life – after Kristi’s commitment to me, and whether she realises it or not – compromises mine. It’s not that little baby’s fault and I am big enough to move past this. The emotions are raw at present and will change, I’m sure, as time goes on.
For now – I need all of my energy for me. I know that seems selfish. I’m not usually that way inclined, but must be right now.
There is a need to focus, remain hopeful and confident that someone in the world will be a match for me. (If not – the reality is I’m buggered…… Don’t like that prospect.)
I’m not really religious, don’t ‘pray’ as such – but have a strong belief that ‘everything happens for a reason’. My belief is that there is more to learn from this and hope is I will be here to experience that.
After enduring my second and third round of chemotherapy, the Haematologist on the ward just blurts out the most unbelievable news ever! ‘Captain Kirk’ as he’s become known visited one morning and in a very matter-of-fact way said ‘your donor’ is right to go. I immediately and very strongly contested ‘I have a donor?!’, ‘yes, you didn’t know?’, he questioned.
Ohhhhh…the utter disbelief, relief, complete and utter joy!!!!!
It was a moment to be stashed and savoured later. Dr Morris told me I’d need more chemo to keep me going in the meantime, as the stem cells were a way off. I would be administered what they called a course of ‘mini-FLAG’; three days of chemo just to try and knock the leukaemia on its head and have me ready for transplant.
Wowsers. My life truly has changed with this remarkable news.
Today November 5, 2014 started with the hardest of goodbye’s to my girls Ch’i and Liliana. I stifled cries the entire way to Brisbane.
After checking in to the Royal Brisbane and Women’s Hospital, I had surgery to insert a Hickman’s Catheter (with it’s own ‘serial number’ and identification card:-), it has three lumens to administer chemotherapy and other drugs, take blood, give blood and platelet transfusions etc. It was inserted through the jugular vein, then goes to the heart. After all those surgeries to get my chest/’breasts’ looking as good as they could, I now have a couple of ‘bullet holes’ where this central line has been inserted!
It was time for food, before my first round of chemotherapy, which was to last five days.
This was my first meal after surgery and last before chemo started – not exactly gourmet…..
No time wasting here. Later that night came the heavy stuff..
I couldn’t sit still, so went to the entrance of the Bone Marrow Transplant unit and Skyped my brother Dave as the first lot of drugs went through.
It wasn’t long before they took hold.
I needed a blood transfusion. First one I’d ever had. (I’m A+)
And I learnt how to Skype the puppies!
Sleep wasn’t easy in a shared room…..As awesome as 19 year-old Ash was, there’s no joy in sharing a room and bathroom when you’re having chemo. There was no escaping the fact that we were both sick. To be frank – it’s disgusting.
Here I am showing off my new jarmies from my friend Lyndall..
Paul and I wondered what the hell was in store next..
I willingly demolished the crappy hospital food (most of it). Must be the steroids.
I found myself laughing hysterically with my Mum – I’d made it through 5 days of heavy-duty chemotherapy!!!
I Skyped my husband and fell asleep while doing so…..
I began to learn the language of haematology…….
Also had my first platelet transfusion.
Had the dressing changed on my central line.
And had the stitches removed from my back. (You’re the best Bec!!)
Couldn’t help but do the thumbs-up with my Mum, Cousin Matt and his wife Jodie.
The past few days has been spent enjoying the company of my nearest-and-dearest and saying ‘Ciao for now’.
Knowing I’m going into isolation is one thing, but keeping in contact with everyone is another..it should be okay with today’s technology.
The hardest farewell was to my girls, Ch’i and Lila. I know there’s no seeing them for months….it’s already breaking my heart. Those last snuggles were quite distressing. I have these gorgeous creatures around me everyday…..I will miss them more than anything else, of that I’m certain.
Call me weird, but I thought having a bit of a ‘wake’ before I undertake treatment that could see me die was actually a nice way to gather my friends together and have an afternoon of bubbles and sunshine together (hey – they can do it all again when I’m gone!)
Of course I didn’t let on directly that impending death was my motivation, just that I wanted to hang out with some of those closest to me before I had to go into isolation. In a highly emotionally charged afternoon, my family and I were able to spend time with former school mates, work colleagues, medical practitioners, swimming and music buddies, neighbours….the list goes on.
We had a gorgeous time and formed memories that will surely help get us through some of the tough times ahead.
Another Bone Marrow Biopsy, this one to determine whether the MDS has ‘transformed’ to AML. My gut feel is, it has.
Under sedation, they took some bone marrow.
48 hours later, I sat with Paul in a freezing cold ‘interview room’ on Ward 5C. (It’s now known as the ‘news room’……..you feel for anyone who is sitting there waiting for someone, some news…)
The Bone Marrow Transplant co-ordinator left to go and fetch Dr Kennedy. As we waited – me wrapped in a blanket to keep me warm, I swallowed hard and breathed very, very deeply. He entered the room, sat beside me and said delicately, “it’s less of what I thought it would be and more in-line with what you were thinking……”
I nodded, knowingly.
This man has just told me I had leukaemia. (What a shit job, I thought, feeling sorry for him.)
He asked politely if I understood? Yes.
My first question is “what percentage are the blasts?”. His reply, “20%, so you’re right on the cut-off……”
Go with that gut feel Kate. Don’t EVER deny it. Just roll with it and get on with it.
He and the team had a helluva job ahead of them, as did I.
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!
I’ve just had the most amazing few days in Melbourne with two of my dearest family friends, Lina and Ian and their boys Charlie and Josh.
Although I was physically running on empty – this was my last hit out/trip away before treatment. We shared some beautiful time together talking about life and enjoying the most fabulous food and wine.
My cousin-in-law/friend/creative collaborator Jodie arrived so we could attend the Jean Paul Gaultier exhibition, which just completely satisfied every element of creative design, garment construction and was just all ’round extraordinary!
We were on cloud nine and although had paid to go to a formal ‘Q&A’ with the man himself (which was nice enough), we busted our way into a VIP event and were treated to second row seats, a more candid designer and many laughs. It topped off a truly wonderful experience.
Paul arrived and Lina and Ian’s amazing hospitality continued for us and Jodie – gourmet delicacies, spectacular wine and seriously great conversations. We talked about our journalism and news histories as well as personal/family memories – not only has Lina known me since I was born – she was one of the first people to hold me as a baby. We also touched on what’s happened health-wise since we last spent time together, almost in disbelief.
I was caught off guard at airport when tears came from nowhere – my love and gratitude for friends such as Lina and Ian was completely overwhelming. As was the realisiation that this may be the last time like this.
On the flight home, I was seated at the opposite end of the plane from Paul. I found myself next to a fascinating man – who just turned out to be an Orthopaedic Surgeon (along with fellow JPG exhibition atendee and fine furniture/interior design lover), so we had great energetic conversation about being in isolation, the power of the mind, yoga and meditation, music, keeping connected, all of that. Despite having asked to be seated next to Paul if it was possible, I really enjoyed this connection with Dr Steve and was very happy chatting with this new friend. I was in the middle seat and at some stage mentioned Pink Polar and the man sitting to my other side happened to be a vet and also knew all about Geoff and the Boobsled crossing Antarctica. We shared lots of laughs between the three of us. It was the quickest flight home courtesy of this cool seating arrangement!
Spending time just savouring the friends, family and being open to new acquaintances in my life – courtesy of this hand, is a positive I hadn’t predicted. Although not pleased about the difficult weeks and months ahead I have to face this reality. No escape is what reinforces the meaning of ‘reality’.
Life is all about ‘climbing the highest peaks and navigating the deepest valleys…’
Ringing in my ears right now is the Norah Jones song, “New York City – such a beautiful disease…….” (that it is! better than the disease I have…..)
In under a fortnight, the trip of a lifetime came together, I must say without a huge amount of stress, but truckloads of excitement!!!
We stopped in at NY Fashion week (without really intending to..), discovered those beautiful Brownstones, celebrated Chanel in the boutique to end all boutiques…
Caught up with my lawyer friend Clinton (now from Chicago), who I’ve known and loved since I was about 12……
Taught Harrison about ‘namaste’, visited Ground Zero, experienced Ben & Jerry’s, rode the subway and thoroughly enjoyed NY city life at its best, courtesy of our Air BNB hosts Jessica and Doug!!!
We marked September 11……Went to Grand Central Station, saw the Naked Cowboy in Times Square, partied on a rooftop with the Empire State Building in the background, saw a show on Broadway, went to ‘The Carlyle’, indulged our creative sides, experienced as many museums as possible, met some truly incredible people, made complete gits of ourselves, bought many pairs of shoes and had THE BEST TIME!
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.
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.’
As I picked Paul up from work he could see the familiar ‘I’m pretty sure I’m right about this’ look on my face.
We went to a little bar close to home so I could have a good gulp of wine before telling him. I had the book about MDS and the prospect of a Bone Marrow Transplant as being the only real ‘cure’. As we entered the bar – the music that came on was Imagine Dragons – ‘Radiation’, then in one of those ‘You gotta be kidding me!’ moments, I looked down at the menu to see SMOKED BONE MARROW on offer!
The test was booked for Wed 4 June, Paul’s Birthday. It was to be done at the hospital he works at. Bad timing.
I don’t remember too much and was a zombie the following day. Less than 48 hrs later I got a call confirming I had MDS.
Good thing that test happened when it did, as this disease has progressed a lot more quickly than expected.
Some of these posts contain GRAPHIC IMAGES which may be unsettling.
They are published to provide a record of the various stages of my diagnosis, treatment and life.
KC.
Picture this – a sweltering Gold Coast afternoon, 25 individuals who have been to the brink and not only recovered – but are thriving examples of what organ and tissue donation, and a health focused life can be. Last weekend, a very special event occurred and I was lucky enough to be part of it. […]
This body is so capable – but it’s been through enough. I truly believe that, which is why I’m not completely terrified of a ‘suspicious mass’ recently discovered in my mouth. It’s coming out in a few days time. The surgeon is highly experienced and during the necessary scans and tests of late has become […]
Sometimes the most difficult battles require a peaceful, gentle focus. A huge shoutout to my Mum and friends Nerida, Lina and Ian for letting me have this lately while I’ve been unwell. Sincere apologies to everyone I’ve unintentionally snubbed. Please know when I say I’m ‘average’ or ‘not the best’, I’m not just looking for […]
KATE CARLYLE is weighing-up the best way to document her experiences with BREAST CANCER, LEUKAEMIA and BONE MARROW TRANSPLANT.
After years of blogging, she’s now finding it too taxing and believes social media updates are probably enough. However, the 38-year-old is often encouraged to write a BOOK.
KATE will continue sharing her story of survival via appropriate awareness campaigns and charity events, but wonders why so many people think she should put fingertips-to-keyboard, what is it they really want to know and what they hope to get out of such a work?
Encore Performances 