The hardest part is over. And what a journey it’s been. Isn’t it simply amazing that the many millions of stem cells were taken from my bloodstream, stashed in a bag, frozen, stored for months, defrosted, returned to their rightful home and are now back in my veins, swimming around, thriving and growing, making my body stronger again. Isn’t it simply amazing that six months ago, almost to this day, I was walking into a London emergency room complaining of some abdominal pain, about to find out that I had a giant tumour in my chest and cancer spread across my body and that my life was about to be turned upside down. Isn’t it simply amazing that I am standing here right now, an ostensibly healthy girl, my bald head and a huge scar on my chest really the only things that offer any clue of what I have been through.
I was discharged on day 11 of my transplant, after two and half long weeks in hospital. When the consultant gave me the all clear to go, I had been expecting another 24 hours in hospital, and I was over the moon – just too tired to show it. I didn’t get to go ‘home home’ just yet – I had to stay in the apartments next door to the hospital for another week at least – but it was fantastic nonetheless.
The feeling of being discharged from hospital is such an elated high that for a moment, you almost forget the pain of the previous weeks (I said almost). But discharge day really is such a high, like being released from jail. Free from IV drips and constant blood pressure, heart rate and temperature observations. No more being roused from sleep at dawn so a path nurse can stab you in the arm for more blood, no more listening to other patients’ ablutions from the bathroom, no more staring wistfully out the window from the hospital bed as the sunshine-filled world moves on without you; no more stomach-churning hospital food, delivered in its pink plastic case; no more beeping monitors, no more peeing into a pan, no more daily discussions of bowel movements. But when I left this time, I got a bit emotional. I could barely thank the nurses without blubbering like a baby, because they really are the most amazing people ever, and made my two-and-a-half week stay in hospital so, so much more bearable. Additionally, the staff tend to take you under their wing, with nursing co-ordinator Trish exclaiming, “I’m so proud of you!” when she saw me looking strong and even managing to nick out for a coffee on day 10, and the haematology consultant congratulating me as he discharged me, saying this was the earliest I could have gone home.
All in all though, the stem cell transplant journey was a lot easier than I expected. My doctor and nursing co-ordinator had presented me with the worse-case scenario as far as the transplant went, and I’m glad they did. It is very, very hard to predict one’s treatment journey, as every individual is different. I was one of the lucky ones, as I noticed many patients around me at Peter Mac were doing much longer stints in hospital and facing far worse complications.
My major glitch – which was a serious one indeed, but luckily hasn’t ended up causing me too much grief - was the massive clot in a main vein in my neck. This had been caused by my arrow, or central line, which had become infected with a skin bug. On day 7, after the presence of the infection was confirmed, the doctors made the decision to pull the line out. There was a big nasty, swollen lump on my neck that was very tender and sore, and the doctors were concerned – my neutrophils were still at zero so I had no immune system to fight it. “This could have serious implications,” they told me, explaining that the infection could get to my heart, which would be catastrophic. Thankfully this wasn’t the case, which was confirmed by an ultrasound a few days later. In the days following the line’s removal, my white blood cells began to climb (which meant they could help fight the infection) and the antibiotics were also kicking in. I now have to take oral antibiotics for six weeks (one of which turns my pee orange) and also have to get twice-daily injections of a blood thinner called Clexane in order to keep this infection under control (which I have managed to give to myself – never thought I’d have the balls to stab myself with a needle, but it’s amazing what you can drive yourself to do in the right circumstances).
Another very small glitch I encountered, also on day 7 (a very action-packed day that was!) was a reaction to platelets. That day my platelets were low and so I needed a transfusion. I’d had several bags of platelets before, so no biggie. But for some reason, this time, towards the end of the platelets going in, my body grew itchy, my left eye and the left side of my face grew swollen and my sinuses clogged up (which meant I couldn’t taste the hospital food – a blessing!). So I was this disfigured, one-eyed Notre-Dame-esque monster for half a day or so. As Jacqui so helpfully contributed, “You look like something from Futurama.” Thankfully I had more platelets following that and a couple of blood transfusions, which went in without a glitch, so it was just that batch for one reason or another. The human body is a funny thing.
But apart from a persistent dull, sore throat, a couple of tummy upsets, some understandable fatigue, some night sweats, temperatures and mouth pain (remedied with some cocaine mouthwash – hospitals really do get the good stuff!), I didn’t really have that much to complain about. I didn’t get ulcers, I kept up my appetite, I was venturing out of the hospital just about every day that I wasn’t hooked up to the drip until my white blood cells bottomed out.
|A rainbow outside my hospital window|
One thing that really helped me was food. I’ve always had a more-than-healthy appetite (my parents threatened to lock the pantry when I was younger, and on inspection of my room, would often find empty chip, Tim Tam packets strewn across the place). I am a self-confessed food lover, to me it is one of life’s simplest and most luxurious pleasures. Through my last five cycles of chemo, my ravenous appetite has been a bit of a running joke. It is common for stem cell transplant patients to lose their appetite completely and in some instances, require nutrition via a drip or feeding tube. There were times when the hospital food made my stomach churn, and there were certainly days I ate less than others, and my weight did drop 3 or 4 kilos at one point, but those incidences were short-lived. A doctor at Latrobe Hospital told me to treat food as one of my medicines, so I was always forcing food down, even if the sickly sweet protein drinks the dieticians insisted on plonking on my food tray tasted awful, or the steaming pile of ‘butter chicken’ looked more like dog meat. I do believe this helped me a lot. My mother’s phone is full of text messages from me filled with random food requests: “I want a grilled chicken burger” or “Can you get me a scone” “I feel like Twisties” etc etc – God help the gopher who has to tend to my demands if I ever get pregnant.
Maybe the amazing one-point win by Collingwood on Anzac Day might’ve helped a little bit too … My mother managed to get an Anzac Day poster signed by Daisy Thomas and Harry O’Brien which sat above my bed during my stay in hospital. It incited both strong approval and extreme distaste, depending on who was looking after me. Of course I left it blue-tacked to the wall following my discharge, and one of the cleaners (a Pies fan) actually called me in the apartments and brought it down there for me.
Of course there are a million other things that have helped me get through this – a supportive network of friends and family (not a day went by without someone at my bedside), the amazing group of doctors, nurses and staff at Peter Mac and the power of positive thinking. There is absolutely no way I would be coping this well if I had to go through this feeling alone. I guess this is one of the most touching things about being sick; the kindness it brings out in the people around you and the inner strength it brings out in yourself.
I still have quite a bit of a journey ahead; I have this infection to sort out and I also have four weeks of radiotherapy about four weeks down the track, my final hurdle. Coming out of hospital, I didn’t feel the elation you would expect, as my body was still catching up. And the enormity of what I had faced and achieved just hit me. Five and a half months of emotion piled on top of me and some days I couldn't stop crying. But it felt good, like a release. For a while there I just fell into a heap. Now I have picked myself up again, but am interested in doing little more than some meditating, painting, gardening (I just planted a vegie patch), writing and reading (yep, I’ve gone from 29 to 60 years old overnight). I just want to find my inner hippie for a little while until I work out exactly how to embark on the next chapter of my life.
Speaking of chapters, my 30th birthday is coming up. This is not really how I ever envisaged the lead-up to my dirty thirties to be, but I feel neither anxious nor happy about it. I am just happy to be here, simple as that (the post-radiotherapy/belated 30th birthday party is going to be an unmissable event though, don’t you worry about that).
|My hair grew back. Then it fell out again.|
Six months since I first went to hospital, and I am now in remission. After months of uncertainty, I finally know that I’m OK. I’m not cured yet – I won’t be able to say that for another two or more years – and for all I know, there could still be microscopic cancer cells floating somewhere in my body. That is something that all the doctors, tests and scanners can’t tell me – something we will never know. Which is why I have decided to go ahead with the radiotherapy, which will hopefully eradicate any cancer cells, if there are any left. But positive thinking and good will has got me this far, and it’s going to get me further yet. Cancer is past tense now, and hopefully it's there to stay.