Waiting

'Chronic idiopathic neutropenia has never sounded so good!'

This was my Facebook status update on week eight and I was genuinely so pleased. Once all the bone marrow results had been analysed and nothing weird was discovered, I had Joel from Haematology come have a chat with me. They had basically decided that I had probably always had a low white blood cell count, and now they just had to decide whether to give me a boaster shot to get my neutrophil count up for the flight home...or to just leave it and let me get on the plane.

My parents and I began to get excited; if I didn't need the boaster shot I could potentially be home the next week! But oh it was such a waiting game, we just didn't know what was going to happen. It was so very frustrating for me, because I felt so much better and try as I might to mentally encourage my neutrophils, it was obviously completely out of my control.

In terms of walking I began going to the bathroom without my rollator. The week before a 10m walk took 2.22 minutes and by Monday it took 38 seconds. By Tuesday I walked 160m and by Wednesday I walked for a whole six minutes. I began balancing on one leg by the end of the week, a hilariously difficult challenge and something I still struggle with four months on (but I'm bloody getting there!) I even started practising the stairs without holding on, which is something that four weeks prior I couldn't even imagine.

'Good leg to heaven, bad leg to hell' was how I was taught to use the stairs again, as my right leg was always a bit weaker from the surgery I'd had a few years before. I had a student physio by this time, and he was pretty buff! Holding onto me as I wobbled up those first few steps I was sorely tempted to fall back into his arms and do the whole 'Oh I'm just so weak, hold me!' act. But I didn't, because I'm not a pathetic little teenage girl...although like I said, tempted!

By the weekend I was told I was finally allowed out of the hospital grounds. Eight weeks of being stuck inside meant I had already become institutionalised in a small way. I was nervous.

At the beginning my doctors told me I would walk out of the hospital, something I couldn't believe. That Saturday, I stood up out of my wheelchair and walked out of the main entrance to get a taxi with my parents. I wasn't nervous any more, I was elated. We took a trip to the Palmaton, one of the top three attractions of Townsville. As you can tell, if seeing some palm trees is your best form of entertainment, then you know you're not in the most exciting place on earth.

Still, it was lovely. We saw hundreds and hundreds of Fruit Fly bats in the trees and I can still remember the acrid smell of them all. I felt like I was smelling everything for the first time, it was all so powerful because it was real life, not that disinfectant hospital smell. We also had lunch together in the tea rooms...real food! Oh it was a happy day.

And then it was week nine and we got the news. 'Tarsha, you're ready to fly home'. YES!

Please note, the picture below is the first picture I took standing up on my first outing. In the background is the Ross River...the bastard that may have caused the virus that caused the GBS!

Mount Doom

'Well, the good news is that you don't have leukaemia or anything seriously nasty, but we're still awaiting further bone marrow results before we can determine why your neutrophils are so low'. Well that was a bloody relief to hear! At the time I didn't really consider how serious the low white blood count was, because I had some much going on with the GBS that I couldn't comprehend there was something even nastier going on. I was more concerned about getting home. Now I was physically improving, I was fit to fly, but because I was neutropenic they didn't want me to risk getting infected at the airport, the land of germs, and so it was a whole waiting game.

It was seven weeks that I had been in hospital and my parents and I were desperate to get home. For my parents, the stress of staying in a crappy motel, living off ham rolls and worrying about me was understandably frustrating and they were desperate to get back to their supportive friends and the rest of our family. For me, it was a real mix of emotions.

I wanted to be home, to see my brother and sister and my family and friends and for my parents to be more comfortable in their home environment. But also I was sad about going back. Here I was in Australia, the year of my big adventure. I was supposed to be travelling for four months, and as i write this now I should be in India, not sat alone in a silent house watching Louis Theroux documentaries by the dozen and eating disgraceful amounts of cheese. Some days it's really hard to think about the things I should be doing.

But look how far I've come! I remember at week seven I did my first walk along the parallel bars without holding on, nine consecutive steps without wobbling and grabbing the bars for support. By mid week I could do 64 side steps on each leg and I did my first walk along the middle of the room. I cannot explain how terrifying it is to walk unaided when you are so physically weakened. It's like being a tight rope walker over the fires of Mount Doom and someone has given you 50 shots of tequila and said merrily 'Off you go then...'

I started foot tapping on a 6cm high wooden block and the best thing of all? I was independent going to the loo. Using my rollator I could use the toilet in my room without anyone's help which was a great feeling. I remember seeing myself stand up for the first time in the mirror and it was a shock. I'd lost two stone that year, and in hospital I wasn't exactly chowing down the culinary delights. The muscle wastage in my arms and legs gave them an elongated feel, whilst my stomach looked bloated and bruised from all the injections. My pert rump of a bottom had sagged and I remember thinking 'People want to be skinny?! Where are my boobs and my hips?!' Since I've been home and off all meds and cooking lots of food for 'Occupational Therapy', it's all coming back with a vengeance but I love it. Hazaar for red wine and pasta!

Another plus of that week was that I could finally take off my TED socks. Oh the sweet relief! To not have the feeling of holes in my socks, to let my legs and leg hair fly free! And no more tummy injections! No more bowel medication! No more pain relief!

I'd moved up to 'medium' putty in OT and could get pegs in the wooden board with much more ease. I could Skype my best friend every night without falling asleep on him mid conversation and he would listen to every achievement ('Today I turned off the light switch!') with pride and encouragement. I was getting better every day.

But I still wasn't home.

The Wince

I began to register that every time I said to anyone I was having some bone marrow taken that week, they would do that sharp inhalation of breath, their face would screw up and they'd wince. I asked my doctor for the truth; will it hurt? 'No no no' he said whilst nodding his head vigorously up and down. 'Oh L you're scaring me! Stop messing around, will it hurt?! What pain relief will I get?' 'Why, we'll give you a slug o' whiskey and a bullet to bite on'. Exasperated I laughed, knowing my doctor was trying to make light of my fears.

The day of the procedure I had L come and put the cannula in my arm before I was wheeled down to Oncology to have it done. Now, my Doctor L, and all the other doctors, were incredible at their jobs. But taking blood and putting in cannula's? Awful! L left me bruised all over when he had to take blood one day, and this cannula was a bloody nightmare to get in (more on that in a bit).

As I was wheeled in my bed, down the corridor and through doors after doors to get to where it was being done, I could see myself from other people's perspectives. Sympathy smiles as people looked at my face before quickly looking away. The only smiles I didn't get were in the Oncology ward. I can very vividly remember the face of a young woman with no hair, sitting patiently in the waiting room as I was wheeled by. We locked eyes. I suddenly felt extremely lucky that this was my situation.

I was hooked up to machines and for the second time I heard the sound of my own heart race. I began to count for the missing beat that I had, and was assured by yet another doctor that this was common. I was told to lay on my side, something that I could easily achieve by week seven and I proudly rolled over. I was told that they were going to inject me with some Midazolam which would most likely make me feel sleepy and woozy. So, they began injecting into my cannula, which normally doesn't hurt at all...but I could feel this pressure building and building and it really began to hurt. 'Oh no, it's tissued' - what now?! My lovely doctor had put the cannula into my skin, so when they began injecting me instead of the medicine going into my blood stream, it began to swell under the surface of my skin. Painfully they had to put pressure on my arm and take out the cannula and put another one in on my left arm instead.

It was a bad start, and I'd gone from being quite calm to extremely anxious. I was reassured and for the second time I was injected...ahhhhhhhh bliss. I must've slept through nearly the whole thing, apart from at the end. Basically, they make a tiny hole from your back to your pelvic bone, scape some bone off and suck it up (I'm not sure how medically accurate that it, but it sounds about right!) I think I woke up briefly in the sucking bit, sharp incredible pain making me once again aware of what was happening, but either they injected me with some more dazzle stuff or I passed out, who knows. When I came to at the end, I was very confused.

'Natasha, we're just putting a book under your back to put pressure on the wound and stop any bleeding'. I was still in twilight zone, and kept coming to and saying 'The book, the book! What about the book? Must I read a book?' I remember being aware that I was repeating myself, but I was so confused I kept thinking that this book was very important. When really, it was just a hard surface.

I was taken back to my room and given half an Endone, which I had pretty much come off by that stage. My parents came in to see me as I had the day off physio to recover, and although I ached all over it wasn't too bad really. I had built it up in my head to be much worse than it was, although to this day I can still feel a pressure if I stay in one position for too long, or lie on my right side.

The funniest thing was the day after, which was a Friday, and I remember lovely Sandra was helping me get dressed etc. And I was given a whole Endone tablet. I was high as a bloody kite! Giggling I got in my wheelchair and felt the best I'd felt in ages. How on earth had I been on those tablets at least one every four hours and still function? I was stoned off my face, and Sandra and I were cracking up as I made my way to the gym. Everyone had their concerned faces ready as they thought I'd be in a lot of pain that day...but instead I felt bloody great!