Tuesday, January 3, 2012

Christmas in ho-ho-hospital (sorry, I can't resist a bad pun)

Welcome to the chemotherapy rollercoaster. It’s going to be quite a ride. On day 1, these intense, life-saving drugs will enter your system. From this day until day 5 you will be on cruise along on an artificial high, thanks to a good strong dose of steroids. You feel mostly fine, getting on with your daily activities, catching up with friends, enjoying the sunshine and impressing everyone with how strong you are. On day 6, things still aren’t too bad but you can feel the weakness setting in. The real plummet begins on day 7, when you can barely get yourself out of bed. Then you run a temperature and bam! Day 8 you’re in hospital. You maintain a vegetative state for most of day 8, you spend most of your time feeling horribly ill and all you want to do is sleep. On day 9 your white blood cells slip even further to almost nothing. You feel like you should be living in a bubble. On day 10, things are slowly starting to pick up but you still feel weak and your appetite is low (mostly due to the hospital food). The hospital lets you go home for a few hours, like a prisoner on day release, but your mouth is so full of ulcers you can barely eat. On day 11, the doctor brings some good news – your bloods are up and he is happy for you to go home. You spend a fantastic day with your family. Day 12, 13 and 14 you are continuously on the up, and you continue your ascension until day 21, when the whole cycle begins again.

I really shouldn’t complain about my chemo. Overall, there’s really only a few days every three-week cycle that I feel really, really crap. But it just so happened that this time around, those days happened to coincide with Christmas.

Christmas time – a time that’s supposed to be spent with family and friends and your loved ones, filled with laughs, sunshine, family debates, succulent turkey, wine and gifts. This year, I spent mine in a hospital hooked up to a UV drip.

Why was I in hospital? The science is this: in order to kill off all the bad cells (the cancer) the chemo also has to kill some of the good cells. This is why chemo causes things like hair loss, mouth ulcers and nauseau (the chemo affects the lining of the hair follicles, mouth and stomach). But the bigger concern is the chemo’s devastating effect on the body’s key infection-fighters: white blood cells. If these drop too low, and you get an infection, it can be potentially life-threatening.

On December 22, I went to Latrobe Hospital’s emergency department with a temperature. I was cold and had shivers. These were all signs of infection, and a blood test revealed that my white blood cells (neutrophils at 0.7) weren’t high enough to fight it. As a result I was admitted to hospital and immediately fed every antibiotic known to man through a IV drip.

Needless to say, hospitals are not nice places. So being told on the 23rd that it was highly likely I would be in hospital for Christmas day had me understandably depressed. It was probably the lowest I had felt. I think reality was also setting in for me. In London, I looked so well that people wouldn’t even believe I had cancer. But fast-forward a couple of weeks, and there was no mistaking my cancer patient status. Skinny, pale and weak, with a shaved head, tubes sticking out of me and being wheeled around in a hospital bed – I think I could safely say I had passed the ‘cancer patient’ threshold. Watching the healthy, happy people get on with their lives, doing what young people do – I used to be one of them, but now I feel like an outsider. I’ve always been someone who hates missing out; I’ve spent most of my life trying to disprove the adage ‘You can’t do everything’. This was ‘missing out’ on a whole new level.

But it’s times like this that your friends and family rally at your bedside, and my amazing parents, brothers and sisters and cousins came to the rescue. My white blood cells might’ve been low, but my spirits weren’t, for long. On the 24th, my hospital room was crammed with Dortmanses, laughing and causing havoc. On the night of Christmas eve - a night I would’ve usually spent out on the town catching up with old school friends - my siblings marched through the door with Christmas dinner, an iPod of Christmas music, crackers, some non-alcoholic champagne (which nearly caused a code red when Sam popped the cork with a loud bang, catapulting it through the air at Jacqui’s head).

And proof that laughter really is the best medicine, was my first gift from Santa on Christmas day: neutrophils! A blood test showed they had jumped from a non-existent 0.1 to a much sturdier 0.5. They weren’t high enough for me to be discharged, but I did get ‘day release’ and was allowed to spend about six hours at home with my family, which was lovely. I was pretty tired though and couldn’t eat much because of the ulcers in my mouth, even though the food looked lovely (much better than what they served up to me at the hospital - see image below.)

Festive (or festering?) meats

On Boxing Day, I was a free woman! My neutrophils were up to 0.7, enough for the doc to send me home. I don’t think I’ve ever packed my things so quickly. Boxing Day was Christmas Day for me … I felt strong, I was surrounded by relatives I hadn’t seen for years and topped off the day with dinner at our place and a hilarious game of charades. It’s times like this that make me realize why I love being in Australia.

Spending Christmas in hospital was a very grounding experience for me. I’ve always been a bit of a Grinch, and have professed to ‘hate Christmas’ year after year, considering it a tiresome chore. After the usual family theatrics at Christmas time 2009, I told mum that the following year I wanted to be as far away from home as possible. I stood by my word, ending up in London for 2010, and I was looking forward to an orphan’s Christmas in the cold. However, I ended up seeking exactly what I was running away from, and found a surrogate family to spend the day with. A Skype call to my family in Oz had also been one of the highlights of the day. It made me reassess the things that were most important to me.

This year, missing out on those comforts we generally take for granted during the festive period also helped me to understand the value of Christmas. I’ve realized that while my Christmas day wasn’t exactly what I had hoped for and envisaged, it was a small price to pay on my journey to good health. There will be many more Christmases to come, and God knows I will be making the most of them.

I’ve also realized that while the bad times are really bad, they are short-lived. That stay in hospital seems like a lifetime ago now. I am out and about and doing the things that normal people do. I spent new year’s eve sober, also probably a first for me in many years, but I got to catch up with old friends and enjoy summertime Melbourne, a city I have fallen in love with all over again. As I write this, it is a 40-degree day (which is too hot, admittedly – can’t believe a few weeks ago I was wearing a thick winter coat, hat and gloves!) and tomorrow I leave for Wollongong, where I will relax beachside and then attend the Dortmans event of the year – my cousin’s wedding.

I know that in just over a week the rollercoaster begins again. It’s almost 100% I will go neutropenic again, because my chemo is quite aggressive. But they want to hit the lymphoma with everything they’ve got, and if that means my immune system gets knocked around a bit in the meantime, then so be it.

Our dog Audrey welcomes me home from hospital on Christmas day

I'm excited about 2012. I know some of it will be tough, but I'm confident it will also bring me good health and plenty of special memories. While 2011 will always be remembered as the year of my diagnosis, I can't say it was a bad year. I had amazing travel experiences including two trips to relatives in the Netherlands and a lovely jaunt to Ireland with my parents. I also discovered and was dazzled by Spain, Portugal and Eastern Europe, and attained friends and memories that will last a lifetime. I went to Glastonbury, was finally captured by London and I fell in love. I can't complain about that. The last two years of my life have been epic and I have a feeling 2012 won't be any different.