Encore Performances

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.

Tags: AML, BMT, Bone Marrow Transplant, breast cancer, Cancer, hospital, kate carlyle, Leukaemia, MDS, treatment