Who Needs Clothes When You've Got Ridiculous-looking Pyjamas?

I really must start updating this more often so that it doesn't just become a running commentary on what's wrong with me week by week and I can do some rambling about actual topics and stuff. Like prayer. I have so many people praying for me constantly, and not just my family and the people at my church but people I never met before. It makes me feel so grateful, because I don't see prayer as a last resort kind of thing, I really do have faith that God listens to and answers prayers. I've had lots of little answers to my prayers during this whole ordeal. I figure with enough prayers and faith I can get the miracle I need to get better. With the amount of prayers being said for me, I imagine the situation to be kind of like that episode of The Simpsons - all of us down here are Bart and Lisa asking "Will you take us to Mt Splashmore? Will you take us to Mt Splashmore? Will you take us to Mt Splashmore?" and God is Homer who will eventually give in and take us. Hmmm, that kind of puts me in the mood to go on a waterslide. I'll put it on my list of things to do when I get better.

So, now that I've had my little kooky religious moment, here's what's wrong with me this week:
I was admitted to Gosford Hospital last Monday and due to start my chemo on Tuesday. Unfortunately since leaving hospital the last time my abdomen had swollen up to several times its normal size. I'm talking eight months pregnant size (that's no exaggeration, Mum had to buy me new clothes that fit and some of them came from the maternity section). As it turns out, the cancer cells have spread down to my belly now and are making it all fluidy like my lungs. My friend who works as an oncology nurse (very conveniently) suggested that I ask to have the fluid drained from my stomach before starting chemo because they wouldn't do it for a week once I'd had the chemo. The doctors agreed, so I spent all of Tuesday waiting to go down for an ultrasound and drain, only to be abruptly informed by the radiologist that the fluid was separated into too many separate "pockets" and therefore couldn't be drained. I was pretty upset by that, because it's really uncomfortable, it makes it even harder to do things for myself and I'm stuck with it for at least the next two months until the chemo possibly starts working. Thankfully to compensate for this new bit of crapness in my life, something finally went right: the chemo went pretty smoothly and the side effects weren't too awful, just a bit of fatigue. I shouldn't get too cocky though, because they did give me a lower dose just to be on the safe side, so I'm still going to be prepared for it to be worse next round. But anyway, it was nice to have something go the way it was supposed to for once. And I guess there's even an upside to the giant swollen belly - I'm too big to fit any of my old pyjamas, so I got Mum to buy me a whole bunch of those giant T-shirt nighties from Kmart. You know the ones that have the hilariously daggy slogans printed on them? My favourite is the one pictured above. It makes me feel like I'm wearing a lolcat.

So that's what's wrong with me this week. What's right with me? My little sister came home from college yesterday, so she'll be doing a lot of my caring for the next couple of weeks. So now we can play Scrabble online while sitting in the same room and watch Better Homes and Gardens together on Friday nights. Sisters are awesome. Oh and she got home in time to celebrate my little brother, Liam's birthday. It was a fairly entertaining evening that went kind of like this:
Mum and Courtney, Liam's girfriend, light all of the candles in the kitchen. Courtney picks up the cake and begins to carry it over to me, on the couch. I start flailing my arms and yelling "No, no I can't be near that, my oxygen will explode!". The rest of the family gather in the kitchen with the cake and begin singing Happy Birthday. Before they can finish the song, Mum and Dad dash to the pantry to stop what looks like something burning but turns out to be the kettle. Both try to restart the song with no success before Dad asks "Who's birthday is it anyway? Liam? Oh, happy birthday Liam. I thought it was Courtney's. I wondered why you were singing to yourself." Everyone has a good laugh and Dad goes to bed early out of embarrassment. Fun times.

Gosford Hospital, It's the Place to Be

Wow, it's been a while. I do have some decent excuses. First I was too depressed to type, then I was too sick, then I was trapped in hospital and deprived of internets. That covers about 83% of the time and the rest of the time can be explained by my general laziness and preference for playing Bejewelled Blitz to doing anything remotely productive.

So, when I last posted I was still in Westmead waiting for my head to shrink back to its normal size and for the doctors to decide what was going to happen. Thankfully I didn't have to wait too long for the head shrinkage to happen. I did have to wait until the end of the month before a plethora of debating doctors finally decided what to do with me: start a round of chemo while I was still in hospital and send me home a few days later with blood thinners to break up the clot. I have pledged to marry (or at least dedicate a day out of every year to the worship of) the haemotologist who decided that my port-a-cath was safe to use, because it will make it so much easier to keep going with the chemo (well that was the plan anyway. As usual, it's not the way things have turned out) because otherwise I would have had to rely on my one remaining "accessible" vein, and getting a needle in there is like, well trying to get something to fit where it won't - you can choose your own metaphor: camel through the eye of a needle, square peg round hole, my grotesquely swollen lymphodematic legs into their compression stockings.

When I came home, my parents had converted their own bedroom into a fully fitted out sickroom. They put an elevator under the mattress so that I can sleep sitting up, a shower chair in the bathroom and a wheelchair for getting around outside the house. I feel bad about stealing my parents' room, but the truth is I'm grateful not to have to walk so far to the bathroom because it is kind of an effort. Showering and dressing for me has about the same effect as a hardcore one-hour workout. When mum first suggested moving into her room, my first instinct was to say no, but I think I've finally realised that at this point in my life I need to give up the idea of independence and accept the fact that I need to be looked after. I'd hoped not to reach this point until I was in my 80s, but here I am.

After a few days of being at home and my breathing getting bad enough to stop me sleeping more than a couple of hours a night, I headed down to Westmead for my second lot of chemo. The doctor gave me some liquid morphine to try and help with the breathing and therefore the sleeping, but things kept getting worse. The thing with me is though, I feel so crappy most of the time that it's hard for me to notice when my condition deteriorates from general cancer crappy to hospitalisation-level crappy. Thankfully after watching me nurse a bleeding nose and struggle to breathe or move for a few hours, my mum's friend who'd been looking after me during the day recognised that I needed to be around medical-type people. As soon as she said it, I realised that I didn't have the strength to walk. When I got to hospital it was kind of cool to find that my ER doctor was a girl I went to high school with. Or at least it would have been cool if we didn't have to meet each other again while my nose was being packed with gauze and I was being pumped full of blood and platelets. Apparently what happened was that the chemotherapy, as well as killing the cancer, also tried to kill my blood. I spent two and a half weeks in Gosford Hospital while the doctors got all my blood levels back to normal. While I was in Gosford I got to know the oncologist a bit and he seems good, so I've transferred my care from Westmead to here, just to save on travel and make things easier on me and the people who have to drive me places. Plus it's a lot easier for me to be at Gosford if I need to be in hospital, being closer to home and also the fact that they let me have a carer stay with me overnight, which I was pretty grateful for, because even though my mum drives me crazy by asking pointless questions and taking forever to get ready for bed, it really was comforting to have her there, especially the first few nights when I felt like death.

So now I'm back home, with an oxygen machine which makes life a little more comfortable (I have yet to name my new gaseous friend - open to suggestions). I'm heading back into hospital tomorrow to start a new chemotherapy program. The doctors weren't happy with the way the last one was going, so they're hoping this one will work better. They're going to poison me as an in-patient this time so that they can keep an eye on me and make sure that I don't wind up with severely broken blood again. While I'm not thrilled at the prospect of another week of paying $5 a day for bad daytime TV and eating powdered mashed potato, it's probably for the best. Since the oncology ward is the land that internet forgot, I won't be updating again for a while. There's so much more I want to write, so hopefully this new drug won't knock me around too badly so I'll have enough mind grapes left to post again when I get out. And I'll try and refrain from playing Bejewelled.