Friday, November 16, 2012

Freedom and fist pumps

Being able to relax on my North Melbourne balcony in the sunshine and gentle breeze, watching the world go by. Relaxing on the couch watching TV with the fam. Enjoying a home-cooked meal around the table. These are all the things I promise I will not take for granted anymore.

If the purpose of me going through this whole cancer ordeal is to appreciate those small things, then I can say that mission is accomplished. I will never take good health for granted again, and frankly, I am just happy to be alive. (Just to reiterate, I don’t really think there is a ‘purpose’ for this ordeal. I think it just happened because one of my cells happened to mutate and multiply. To me, it’s as simple and unfortunate as that.)

I was in hospital, all up, for about 19 days. I was barely allowed to leave my little glass cocoon, which was room 8 on the 5th floor (though, that said I did have the nicest view and biggest room on the ward – the ‘penthouse suite’ according to the nurses). For most of this time, I was sitting there just waiting fort my neutrophils, which had been sitting firmly at zero for days and days, to increase so I could get out of there. In the meantime I wanted to avoid any nasty bug that might come my way.  There were a couple of days that I was pacing the room so furiously that mum was going to ask the doctor to prescribe me valium. I probably did need it too. It’s quite unusual for me to get anxiety but there were a few days that I felt it heavy on my heart. There were also a couple of mornings where I found myself crying into my porridge (which would add some flavour at least) for no fixed reason. I wasn’t worried about the transplant not working, I was more worried about the days ahead, and how I was going to manage them with even a shred of sanity. I was burdened by the monumental task ahead of me.

So what did I do with my time? I read, though my concentration would fluctuate from day to day. I watched shows like 30 Rock and movies like Clueless. I wrote poetry. I kept a diary. I played on my mum’s iPad. I played SongPop on my iPhone. I tried to keep up with the news, but as with my concentration, my interest in current affairs would wane some days. I spoke to people. And this is where my star visitors come into play – as well as brightening my day they also helped to break it up, as did the letters and notes of support (as if in some kind of poetic harmony, I ran out of letters to read right before my discharge from hospital).

Sunset from my window
I was one of the lucky ones as I didn’t suffer much sickness throughout my stay. A really ugly infection broke out on my face, kinda like an infected pimple, but it didn’t cause me much grief apart from making me look monstrous. From Day +8 to discharge I had a sore throat, but I still managed to eat all the way through and thankfully I never had to be fed nutrition through a drip. I had some loss of appetite and drowsiness, but the flatness, lack of fresh air and boredom were worse. I can’t even say the first few weeks of my allograft were much worse than my autograft. It was simply that the process was longer, and different.

Other things that helped were regular walks up and down the ward (which is about 50 metres long, no kidding) and getting decent sleep every night, which surprisingly I managed. Most of the time I sleep like a baby in hospital. Despite being roused from sleep about five times a night for observations, medications and blood tests, I always fall straight back to sleep and doze until the doctors usually do their rounds at 8-8.30.

Day +12, a Saturday and Stakes Day in Melbourne, was a busy day. I’d been to Flemington racecourse in the Melbourne sunshine. I’d pashed several guys (and even girls), won money on the horses, swilled champagne, took to the DJ decks to spin a few records, hell I even busked on the street.

Was this some kind of crazed rampage day leave scenario? No. My hilarious girl friends took a cardboard cut-out of my head along with them to Stakes Day. What ensued was a sequence of hilarious photos to my phone of my head in a range of compromising situations. It made my day – and apparently a few other people’s too! Funny, because on Saturday I was craving McDonald’s (which apparently I visited at some ungodly hour) and Monday morning I threw up for the first time since I’d been in hospital, which made me think that maybe I had a sympathy hangover, or my cardboard head had been a voodoo doll.

It was a lovely gesture which put a smile on my face for days and reminded me what awesome friends I have.

Proof that I can DJ
Saturday also marked a year since my (unofficial) diagnosis. 11.11.11, a day that will be etched in my memory - the day I took myself to a London hospital, plagued by a cough, abdominal pain and sickness, only to be told several hours after a chest X-ray and CT scan that I had cancer. But I tried not to think too much about it. Right now it is so much more important for me to look forward and embrace the future, rather than dwell on the past, and how far I have or haven't come. So I shrugged it off as another day.

I also missed seeing my favourite band at Harvest Festival that day but that means little to me now.

My debaucherous Day + 12 must’ve been just what the doc ordered, because I woke up on Day +13 to a neutrophil count of 0.1. Could this be the beginning of the great white cell ascension? I wouldn’t know until tomorrow – if my neutrophils continued to rise, then they would call it ‘engraftment’ (which means Megan’s cells have taken to my body, and are now releasing those vital white blood cells). But it wasn’t common for neutrophils to drop as quickly as they rose again during an allograft. Day +14, bang. Neutrophils 0.3. Engraftment was well and truly engaged. I was so, so close to getting out.
Scientific diagram explaining engraftment
My nurse let it slip that they might let me out on overnight leave the next day if my neutrophils kept rising, so I got rather excited about that. I woke to a happy nurse coming into my room, “You’re going home!” Neutrophils 0.5 – I was no longer neutropenic. A fist pump and emphatic “YES!” came as reply. Then the doctors came round and said I could get ‘day leave’ but had to stay overnight in the hospital, and my discharge was likely to be Saturday, so my excitement fizzled. Luckily I had the right people on side, and the nurse in charge did some sweet-talking so I was allowed out on overnight leave instead. I managed to ‘check out’ some time that afternoon, and by then I was too tired to jump up and down with joy, but when I took those first few steps outside and gulps of fresh air, that’s what was happening inside.

I had to go back to the hospital this morning, but they are happy with my progress and have officially discharged me. The nurses and doctors are like beaming proud parents, and telling me “Make sure you come back and visit.” Surprisingly I didn’t cry, even though the Royal Melbourne Hospital nurses have been absolutely amazing. Maybe the lack of tears was because I know that I still have to come back to the hospital’s day centre for tri-weekly check-ups, so it’s not necessarily an emotional goodbye for me just yet. 

My only obstacle at the moment is some niggling morning sickness (nooo, not ‘that’ kind of morning sickness). I’m not sure why it’s popped up so far along in my treatment (as it cannot be chemo-related), but theatrically, I have to run for a toilet or sick bag (now carried in my handbag, it’s the cancer patient’s lipstick) some time before or after breakfast. Not the best start to the day, hence I hope it sorts itself out in the next few days or so.

They also discharged me with enough pills to sink a small ship. Anti-sickness meds, three types of antibiotics, magnesium supplements, pills for my stomach, pills for my liver, steroids (to prevent graft vs host disease) and the very important anti-rejection drugs, which smell bad and are the biggest pills I’ve ever seen. I can now say that to deal with this daily onslaught of meds I am now the proud owner of one of those pill boxes they give out at nursing homes, with four containers for each day marked ‘Morning’, ‘Noon’, ‘Evening’ and ‘Bedtime’. This is what my life has become! I have always said though, this experience has set me up very well for old age, and the pill box reinforces that. (Next thing is the granny trolley).
Pill popper
My kinda granny trolley
It’s been a testing time, and the true test hasn't really happened yet. I still have 85 days to go till I'm in the clear, till I can have some peace of mind, and I know my next PET scan is going to bring its usual dose of anxiety. Some days in hospital were so long, gloomy and boring I thought the end would never come. I feel after all this, I will have the patience of a saint. I still have a long road ahead of me; I will be visiting RMH’s day centre three times a week and I still face the dangers of infections and graft vs host disease, both of which can be life-threatening if left to run rampant. I know those tri-weekly appointments are going to get old and that there are still a few bumps looming on the remaining stretch of road. But I’m out of hospital and that’s the first positive step.

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