Some things that have happened:
1. I am really glad the world didn’t end yesterday. I didn’t spend the whole year fighting for my life for some stupid Mayan prophecy to take away all my hard work.
2. I reached day 50! But instead of celebrating, I got admitted to hospital. I just got discharged today after three nights back inside (just to avoid my mum’s cooking and the Christmas shopping crowds. Just kidding, mum). Nothing major, but on Wednesday I woke up feeling really unwell and I had a temperature. I had no energy, I felt nauseous, fatigued, could barely stand up for short periods, short of breath, just felt positively awful. I called the oncology unit and they told me to go to emergency. Which was probably a mistake; I was in ED for a long time doing nothing but feeling horrible and no one even took my bloods or the routine things that doctors/nurses are supposed to do when a cancer patient has a temperature because no one was trained in handling a Hickman’s Line. Anyway, while examining me the doctor asked me how long I’d had the rash on my stomach for – which took me by surprise because it was the first time I’d noticed it. I also had it on my back. A rash on the skin can be a symptom of graft vs host disease, so later that day they took a skin biopsy (anaesthetic and a needle injected into upper back). I got admitted into hospital, back on the bone marrow transplant ward where I spent my three weeks in November, so a place I know well. I didn't get the penthouse suite this time though. In the end, the good news is that after three nights, tests show no evidence of GVHD or infection, the bad news is that I spent three nights in hospital for really no reason at all and I am behind on my Christmas shopping. My burnout on Wednesday was probably due to steroid withdrawal, as the doctor had stopped my Prednisolone two days earlier. I have since been put back on it, so they can slowly wean me off it instead of going cold turkey, and I feel 100 times better. It’s actually scary how good the steroids make me feel, I feel like I have been floating on an artificial high for the last 50 days and I fear crashing and burning again when the steroids stop again in about a week. But I need to come off them – a) they suppress the immune system, and while they prevent GVHD they can also reduce the graft v lymphoma effect, b) long-term steroid use can have some nasty effects c) I am pretty sure they are contributing to the fact I haven’t had a decent night’s sleep in weeks. Being back in hospital reminded me how much I don’t want to be back there ever again. The nurses were all surprised to see me there, since all they’d heard were stories about me going to Devo concerts and stacking my bike (see points 3 & 5)
3. I saw my doctor at a Devo concert. I scored last-minute free tickets to Day on the Green through a friend (and I mean on-the-day-last-minute). So I called my little sister Megan who was on her way to Melbourne to visit and asked her if she wanted to drive to Rochfield winery to see The Church, Devo and Simple Minds. The answer was in the affirmative.
However, mutiny struck when I was reminded that I had two sisters and the other one I had not invited was a Devo fan. In the end we all agreed that all three of us could go to the festival, and we’d all pitch in $30 for a third ticket, as they were still on sale. Resolution reached. When dad said we could take his XR6 the day only got better.
A great day was had. There was a bit of rain, and at 100 years old or however old they are now, Devo have definitely still got it … I’m not sure I would say the same for Simple Minds, though. I think the crowd outsang the lead singer on Don’t You Forget About Me but an enjoyable performance nonetheless. But a highlight was definitely bumping into my transplant doctor. I saw him, wearing nothing but a black T-shirt and shorts, rocking out with his lady friend. “Is that … Dr Ritchie??” I said as I walked up to him. It took him a few moments to recognise me – he was used to seeing me around the ward in daggy tracksuits, so it makes sense that this tall girl in a wig, red lipstick and short shorts would have had him stumped for a few moments. For a second I thought he was going to tell me off (I should be taking it easy, and I should be avoiding crowds) so I kept dropping into conversation that I had reserved seats and this whole trip was a last-minute thing, but he seemed fine about it; I think he was more worried that I would blow his rock pig alter-ego. Then about 20 minutes later, I bumped into a Peter Mac nurse I knew quite well, she’d looked after me at the haematology ward several times. She also took ages to recognise me. “You’re on day 31 of your allograft?!” she said in disbelief. Yep, this is my life now – bumping into doctors and nurses in the 'real world'.
|Some guy wanted to take our picture because we are awesome|
4. I recorded my song. I went into the Royal Melbourne Hospital recording studio (yes they have one of these), had a session with Emma O’Brien and recorded my song in one take. It was a great experience. Will upload song and share on here soon :)
5. I fell off my bike (well my sister’s bike; maybe it was karma for borrowing it without her permission). I had just ridden down to the Queen Vic markets with a friend Lucy who I’d just spent a lovely weekend with (very short ride) and was on my way back alone when my handbag got caught in the wheel and I went over the handlebars, right on Peel Street, in the middle of a North Melbourne bike path (yes, I was left on my own for 5 minutes and this is what happens). I’d hit my face on the ground and my tooth had gone through my lip, I could already feel where it was chipped. This lovely young couple stopped to help me, and then another lady, who was an oncology nurse, who ended up driving me to the apartment to drop off the bike and then to the hospital emergency department; executing several illegal U-turns to do so. I wish I had’ve got her name, she was so kind. The ED doctors cleaned me up, gave me a stitch in the lip and prescribed me some more antibiotics (yay! More pills). I got a tetanus injection and then I could go home. Luckily Jacqui arrived back from Meredith to be with me in ED. I felt a bit teary after my fall and I wasn’t sure why, I think I just felt vulnerable and I am very, very lucky that I didn’t do more serious damage. A broken bone or any major injury would have been a major setback. The next day my fat lip had blown out to major Lana-Del-Ray proportions, and I was going to try and convince my doctor that I’d got into a punch-up at the pub but he already knew the story because ED had called him. So for about a week it all looked a bit like a collagen injection gone wrong but the grazes are healing nicely now and I have some more scars to add to my impressive collection. My pride was hurt more than anything else.
6. I had an amazing weekend in Daylesford with some members of my dad’s massive extended family. We hired a stunning 18-bed mudbrick house in the bush and spent two days eating awesome food, swapping hilarious Kris Kringle presents, playing charades and board games and walking around the pretty town of Daylesford. It was such a great weekend, and my first trip away from Melbourne since the transplant, apart from a day trip to Torquay a few weekends ago.
|The cousins. Aaaaw, what a beautiful bunch of people|
7. This Christmas I have several things to celebrate. A) Not being in hospital. B) That I am alive. C) That I have the best immediate and extended family a girl could ask for. Last year I spent Christmas in hospital and that really, really sucked. As long as I steer clear of anything with two wheels I will be staying well away from hospitals this year.
So may your Christmas be merry, and amid the festivities of overcooked turkey, family feuds, loud drunken rants from relatives, rubbish Christmas presents, bad bon-bon jokes and cheap champagne, spare a thought for those who are stuck in a hospital bed (because I was just there and there are plenty), or attending to a person in a hospital bed, or eating Soup for One out of a can in a darkened apartment (that was almost me in the UK one year) or just having a shittier Christmas than you. Good health is the best Christmas present you could ask for and if you have that, feel blessed.