February 16th – Round 7
As I put the ‘Morning Fresh’ in the fridge I think to myself, “gee I feel so tired, I could just turn up to chemo today in my pyjamas.” Thank goodness I don’t have to do my hair at least!
Even though I can’t really be bothered, I like to get dressed up for chemo, find something that fits my ever expanding girth, put mascara on my 3 eyelashes, and choose a happy scarf. And as I walk out the front door, and plant a, “I’m fine there’s no problems” expression on my face, I remember my friend’s saying, “fake it until you make it!”
It was a long day of chemo, which is not unusual for the first round of a new cycle, plus I had a blood transfusion. Sounds so dramatic doesn’t it, but it really isn’t. As long as I don’t look at it, it doesn’t even occur to me that I am having someone else’s blood infused into my body. I am grateful though, for the person who gave blood so that I could be well enough for my next round of chemo.
After 7 hours we headed home and it wasn’t long before I slipped into my unconscious state of the chemo twilight zone for a few days.
A day later I woke up to a different view, a bright sparkly morning with the sound of the ‘merry merry king of the bush’ making his calls from his favourite gum tree. As the smell of the freshly baked bread gently woke me up, I instantly knew we were at our little farmhouse. I vaguely remember driving there, but as usual my mind was in a state of chemical confused oblivion and I wasn’t sure if the nausea I was feeling was from the chemo or the hair pin bends of the Great Ocean Road.
As I was ‘coming to’, our mini break was over and we were making our way back home. The Brave Man and the fairy played eye spy all the way home. Sienna not quite grasping the concept that you have to see it, to play it. And things like “B T H”, (Boring, Trip, Home) is not quite the ‘Eye Spy’ idea. I happily listened to the two of them having fun, my Brave Man patiently guessing 100 possibilities for “something beginning with B T H”.
I stared out of the car window and was mesmerised by the landscape with the very dry hues of wheat colour dotted with bits of green. The hills looked like sand dunes, as the thirsty grass had dried them up over the summer. Actually it looked as dry as my mouth feels after a dose of chemo. The fields were speckled with ‘grey fluffy bottoms’ as all the sheep at once munch on the grass below. I wondered if their tendency to eat at the same time is a ‘sheep following sheep thing’ or maybe just a ‘sheep eating etiquette’ thing they’ve got going. We passed roadside stalls, bric ‘a’ brac, locally grown blueberries, potatoes & bags of horse poo for a $1. I went for the blueberries and decided against the horse poo, tempting as it was.
By Tuesday I started to feel a bit chipper and realised the blood transfusion had kicked in. It’s amazing how a couple litres of a ‘good quality red’ can pep you up.
The topic for my fairy’s ‘Show and Share’ during the week, was “My Family”. She spent a lot of time on her project and came up with;
My Dad is nice, kind and reads to me.
My Mum is funny and has no hair and stays in bed a lot.
A little pang of guilt stabbed me in the heart. But I guess when I think about it, she probably doesn’t remember me when I had my blonde hair, when I used to run, when I could give her wizzy dizzies. I hate it that she doesn’t remember the ‘well me’. I don’t want her to have just the memories of a ‘sick mum’. So please excuse me for indulging in so many photos. I spent the afternoon looking at them all. Smiling, laughing, tearing up, looking at these photos…. Makes me emotional…….., happy happy, happy sad, happy love! If you ever have a moment, you should do it, look at photos of your kids, look at photos of your friends, or your family or your wedding. It will make you happy.
So I decided to bring those times back and help her remember. The Brave Man printed out lots of photos of her and me, and the three of us, so we could decorate her bedroom with memories. It was fun and to my surprise, when she saw some of the photos she remembered when they were taken. As a ‘well meaning’ 7 year old with a kind heart she said, “Wow mum you used to be so pretty.”
Thursday February 23rd – Round 8
Just as I was feeling better, we were back at chemo again. As usual the Brave Man is by my side, never missing an appointment. Even though I love him being there but don’t expect it, he’s always there. We have our little routine of seeing my Health Stylist first, talk about any new side effects or aches and pains and then go down to day oncology to be hooked up.
Once I’m hooked, my Brave Man walks down to our favourite café and brings back breakfast and yummy coffees for us and any of the Gara Angeli* that might need one too.
My troops come and visit and the time passes really quickly.
The chemo is taking its toll on my body and as I look down at my scraggy hands, I am reminded of the times I would visit my Grandma. I would moisturise and rub her old hands with her paper thin skin and brittle nails. Her hands looked worn out and tired as old age slowly dried the life out of them. My body feels the same, just like one old piece of ‘beef jerky’.
The fatigue hits pretty quickly after chemo and I bid my farewell to the Brave Man for a few days as I retreat beneath the sheets. He’s looking weary and worn out and although he would never have it any other way, I can tell he’s reaching his limit with this inconvenient illness. And I don’t blame him at all, it’s relentless, helpless and a big pain in the Haemoglobin! But he assures me that he’s ok and all he wants is for me to get better.
Scamming the scammer
But there was no doubt the tedium of our current monotonous situation was getting to him. More so than ever the night the ‘scam artist’ rang!
It was fairly late on a week night and our fairy had just got out of bed for the 17th time, having gone through all the excuses she could think of to get out of bed. “Why do ants exist?”, was definitely testing our patience.
The phone rang and a man with broken English declared to the Brave Man that our computer was broken and he could fix it if he had access to our security passwords. The Brave Man knew straight away that this was some kind of scam. Like one of those, ‘you’ve just been nominated as a beneficiary to collect ten trillion pounds’ type thing.
But rather than just hanging up, the Brave Man saw this as a bit of sport and for amusement let the scam artist babble on about security settings, personal information and instructions on entering certain code numbers. The Brave Man eagerly replied that he would do all this to ‘fix his computer’ but the problem was that he, ‘only had one finger because the rest were blown off in an industrial accident.’
Lesson 1: Don’t try and scam someone who is really bored!
Mr Scammer was still determined and when the Brave Man suggested he could try and use his “nose” as well as his one finger, the swindler anxiously agreed.
Of course by now I was in fits of laughter (it felt so good to laugh out loud). The Fairy was out of bed for the 18th time, wondering why her Dad was saying crazy things on the phone and laughing because she could see us both laughing.
It went on for another few minutes with the Brave Man suggesting he could use other body parts to press the keyboard. Finishing with, “I have to go my parents are coming.”
Ok, so maybe not so funny when I put it in writing, but for this little ‘ground hog day family’, it was great to laugh out loud and enjoy the moment.
Thursday March 1st – Round 9
After seeing my Health Stylist this week, we discuss my blood results and the fact my ‘lollypop markers’* are coming down which hopefully reflects that the chemo is working.
My white cells are low again, but not unexpected given the amounts of chemo I’m having. So I’ll have to give myself another shot of ‘the good cell boost juice’.*
My Health Stylist says that it’s time to book in for a scan. He needs to work out how much more chemo I’ll need. We’re not sure what or whether the scan will show anything at all. You would think that, a scan would show anything unusual, and the chemo would destroy it all, but over time, I’ve learnt it’s just not how this unpredictable disease works. It can lurk in places that a scan just won’t find, But we put our faith in ourselves and the Health Stylist and hold onto hope as tight as a rodeo rider hangs onto to a bucking bull.
So this week, I have the week off, can’t say I’ll be out partying, but I will enjoy a bit of clear head space with my lovely little family. Spend some more time on my book for my fairy and get some fresh air into my lungs.
I will also think about my friend Sarah who is having a bone marrow transplant as I type this very entry. I met her through my writing at the beginning of her struggle with leukaemia last year. We have been friends since. I feel her pain and the torment of fear that she struggles with from time to time and wish this ‘woman of strength’, so much for ‘wellness’ in the coming weeks. Sarah also has a Brave Man and a little Fairy a year younger than my Sienna.To Sarah,
A strong woman isn’t afraid of anything…
But a woman of strength shows courage in the midst of fear.
A strong woman wears a look of confidence on her face…
But a woman of strength wears grace.
A strong woman has faith that she is strong enough for the journey…
But a woman of strength has faith that it is in the journey that she will become strong.
Paragraphs taken from the poem, ‘A strong woman versus a woman of strength’ by Luke Easter