Saturday, December 22, 2012

Oohh, we're halfway there (sang to Bon Jovi's Livin' on a Prayer)

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

Simple Minds
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.

Thursday, December 13, 2012

Looking forward, looking back

As the year is nearing to its end, and I've now reached my one-year anniversary of arriving back to Australia after my diagnosis, I'm going to get reflective. I mentioned in a previous post that it's far more important for me to look forward than back, but now as a really difficult year draws to an end and I can look at it with a bit more perspective. Additionally, one thing I have never actually got around to documenting on my blog in detail was my last week in London and my journey home (and besides, the world's going to end soon, and I still have many more blog posts to publish). 

In the beginning ...
I started my first round of chemotherapy in London on Friday, November 25, 2011. The whole process was very rushed - exactly two weeks after I had walked into an emergency room with some abdominal pain I found myself hooked up to a drip getting toxic drugs pumped into my veins. I don't think anything could've prepared me for what lay ahead. I remember a group of cancer patients in their headscarves and beanies sitting near me in the clinic casually discussing their stem cells and when they'd be "getting them back" and all felt a little surreal. Little did I know at that time what a big role stem cells were going to play in my own journey. This was when I entered the parallel universe of cancer treatment, but I had no idea how hard it was actually going to be. 

That first round of chemo was really difficult, probably one of the worst ones I went through, physically and emotionally. The oncology nurses sent me home with a list of symptoms to look out for - if I got a fever, diarrhoea, vomiting I had to call the clinic immediately, no matter what the hour. I spent the first few days after chemo feeling relatively OK but I was a bit on edge about everything; I just didn't know what to expect.

A few days into chemo I got my first intrathecal, a chemotherapy injection into my spine. The chemo travels through the spinal fluid and to my brain, to protect it from the cancer.  I had to curl up in a ball while the doctor stuck needles into my spine. The worst part is the stinging of the anaesthetic they inject first that numbs the area before they inject the chemo. Intrathecals are also annoying because you have to lie flat in bed for at least an hour after it's done to prevent headaches. The recommended time is actually four hours but there's no way anyone was going to keep me in bed that long. I have now had six intrathecals all up and hated them all, they were just time-consuming and annoying. One of them, I think it was during my fourth round of chemo, gave me a lot of problems - ringing in my ears, heavy limbs and neck pain, it was just terrible. 

On the following Monday, I said goodbye to mum who had to take a very difficult flight home, alone, to attend my brother Sam's graduation in Australia. The next day after his graduation, Sam was going to take a flight to London, spend a week with me, then fly with me home. It meant I was going to have about three or four days in London on my own, and all I can say is thank God for Matt who had taken several days off work because it was around then that things turned pretty grim.  

Wednesday and Thursday I hit rock bottom. Thursday I couldn't keep breakfast down and ended up retching it up in the shower. I was pale and weak and kept having to go lie down. "It's like a really bad hangover," I said, "without the fun part." On top of this I was emotional wreck, which was probably a combination of the sickness making me feel so frustrated and helpless and my hormones wreaking havoc because of the fertility treatment I was on. Also, having to say goodbye to Matt was weighing really heavily on me. There were lots of tears at this point, lots of emotion. 

Friday I felt a bit better, and that night Matt and I went for a walk down Green Lanes with the housemates' dog. I realised this had been the first time I'd been outside since Tuesday. It was nice to get some ‘fresh’ air though not sure there’s much fresh about the air in Harringay, except for the fact it’s cold.

Saturday was horrible, I was back to feeling awful again. Weak, nauseous, emotional. Matt went home because he hadn't even changed his clothes in three days. I’d really enjoyed the time we’d got to spend together, even if I was in a bad state for a lot of it. We still managed to share some laughs, and tears, and I was impressed by his cooking skills. He went home after we shared lots of hugs and tears.

Sam arrived from Heathrow that afternoon, and my housemate picked him up in his car from Manor House station. I was happy to see him, but too fatigued and sick to really show it. It was a pretty mellow weekend, I couldn't do much but lay around.

On Monday, I had to head into the UCLH clinic for my routine blood tests. I woke up feeling terrible once again. I was pale, I looked and felt horrible. I spent the car ride to the clinic with my window down, wanting to throw up. The tests showed that my neutrophils were just sitting under 0.5, which meant I was neutropenic and at risk of infection. The lymphoma nurse sent me home with three days' worth of GSCF injections to boost my white cells. We got a cab back to Harringay, and I when I stepped out of the cab I threw up, right there on the street. I had to shut myself in my (tiny) room and avoid my housemates as one of them definitely had a cold of some description. 

A couple of days later I was feeling much better. My white blood cells had soared. A chest X-ray showed the tumour in my chest had shrunk significantly. This was the first time my lymphoma had been exposed to chemotherapy and it had really knocked it around. The doctor was happy for me to fly home. It felt awesome, but so scary at the same time. It was really happening, I was leaving London. Amazingly I managed to pack my whole life back into my backpack and a couple of extra bags - I had really accrued very little in my 18-month stay in the UK.

The care I got in the UK via the UCLH was exceptional. My lymphoma nurse Barbara was an absolute gem and really went above and beyond to ensure I was OK. She gave me a lot of her time and to this day we are still in contact. 

It was a cold, cold day I left London. It was Saturday, December 10, 2011. Saying goodbye was difficult. On the Friday night I'd had a wonderful farewell with friends in Stoke Newington until 3am. Still a rather subdued affair compared to what it would have been had I left in different circumstances. But I was happy to just relax and share some laughs with good friends. The perfect way to say goodbye.

Saying goodbye to Matt was really, really hard. We were on our way back from dinner in Islington and he got off the 341 bus at Church Street and walked away, down the dark street and I didn't know when I was going to see him again. I was already crying at Newington Green, and I cried all the way home. Sam and I were running a bit late to get our cab to Heathrow, and this was not helped by the fact that there was a car, engulfed in flames, on Green Lanes, which had stopped all the traffic. We got off the bus and walked home, as a crowd of people just stared at this burning car. A rather odd sight and end to my life in London. We grabbed all our luggage and piled into a cab. As I took my last bag, left my keys on the shelf and went to close the door, I hesitated for a moment, took one last look at what had been my crazy, but warm home for the past year. I was certainly going to miss it, and the people that lived there.

Bye London, I shall miss you
The roads to Heathrow were jam-packed with traffic and the cab was barely moving. I was having some major anxiety that we were going to miss our flight. After all these delays, re-booking of flights, all this drama, we were going to miss that plane home because of traffic? The cabbie ended up veering off the main motorway and taking a "short cut" to the airport along all these backroads. I have to say, I had my doubts but I have to hand it to him for managing to get us there on time. 

On arrival to Heathrow, we were greeted by a Qantas staff member who told us we had access to the British Airways Galleries Lounge and that we had been upgraded to business class. This was a big surprise to us; we hadn’t expected this kind of treatment. I know that one friend emailed the Qantas executives explaining my situation and my brother had also called them to see if maybe we could avoid having to wait in crowded areas or maybe get more comfortable seats on the plane. But being upgraded to business class was pretty awesome. We had our own little cubicles and seats that went all the way down to horizontal, which even had a massage option (which was actually rather uncomfortable). We had ample leg and storage room, decent food, private TVs with top-quality headphones, bubbly on lift-off - we even got complimentary pyjamas and an amenities kit. The staff were falling over themselves to make us as comfortable as possible. It was pretty amazing and I'm pretty sure that's the first and only time I will ever fly business class because I have looked up the prices and it does not come cheap. I managed to sleep a lot of the way home and it just made our flight so much more bearable. Really have to hand it to Qantas; they made a difficult flight a lot easier.

Me and Hippo Jo in transit
I can't even describe the feeling of coming home ... it was like a dream. Seeing my family at the airport, being welcomed by Melbourne's wide streets and breezy sunshine; it all felt so strange but familiar. Another amazing surprise when I got home to my parents' place was my old bedroom. In the weeks leading up to my arrival, my siblings, and uncle and cousins had worked tirelessly to repaint, recarpet, refurnish and decorate my old bedroom which looked absolutely fantastic. Everyone had also printed out a collection of photos which they'd arranged on the wall. A lot of time and effort went into it and I was really touched. What a homecoming.

Me, having just arrived home, and my photo wall

And the rest is history. 

In the past year and a bit:
  • I have had bucketloads of chemo. Three rounds of R-CHOP, 3 rounds of Hyper-CVAD, 6 intrathecals (chemo injected into my spine), 2.5 rounds of Gem-Vin, one round of high-dose chemotherapy (cytarabine, etoposide, carmustine, cyclophosphamide) one round of low-dose chemotherapy (rydarabine and melphalan). This also doesn't include the countless number of oral meds I have had to take daily all year.
  • I have had an autologous stem cell transplant (April) in which my own stem cells were collected and returned to my bone marrow after high-dose chemo.
  • I have had an allogeneic stem cell transplant (December) in which my sister's stem cells were collected and delivered to my bone marrow after low-dose chemotherapy. 
  • Had five infections during chemotherapy, all of which I was hospitalised for. 
  • If you added up all the days I spent in hospital, including those as an outpatient, I reckon they'd take up half the year. Easily. Maybe more.
  • My hair has fallen out four times. 
  • I have seen some wonderful places with some wonderful people. I have travelled to Perth/Margaret River, Brisbane, Sydney three times, Wollongong, the Hunter Valley, the Grampians, Meredith (Golden Plains), Falls Creek, Daylesford/Hepburn Springs, the Great Ocean Road, Wilson's Promontory and the NSW Far South Coast (Merimbula/Eden). 
  • I climbed a really big tree, went snowboarding, attended a couple of festivals and wrote and recorded a song.
And throughout everything my family, especially my mum, have been right by my side, have been my rock in times of darkness. In this respect I have been very lucky. Actually, I'm pretty damn lucky to even be here today, when it comes down to it, and I'm thankful for each day.