So, on a more positive note ...

I started writing an update about my current situation, and then when I read it back, it just came across as really boring. Because really, not that much has been happening in the past few weeks. I have been undergoing treatment, but I have no idea how successful that has been until I get my scan next week. At the moment it is just another waiting game. So I thought, to make this post a little more exciting, I would share something that I have been a little bit shy about putting on here, but a lot of people have been asking me about it so I think it's time.

During my allogeneic stem cell transplant in November I had the pleasure of meeting Royal Melbourne Hospital's music therapist Emma O'Brien. In a welcome disruption to my days of isolation on the ward, Emma would burst into my room brandishing her Cole Clarke guitar and an iPad packed full of song chords, and we would happily whittle away thirty to forty minutes singing classics from some of my favourite artists like Fleetwood Mac and The Cure.

The idea came about to combine our skills and write a song, so during my admission I put pen to paper and scribbled down some poetry that captured some of the loneliness and underlying hope that filled my days on the ward. I didn't see Emma again until following my discharge, but when I turned up to her studio (yes, after much campaigning and fundraising, Emma has her very own recording studio at RMH) I had a handful of notes ready to be put to music. After playing a few chords, shuffling around the verses, adding a line here and there, Emma and I had a song.

You can read the lyrics here:

Time in the sun

Like every drip of saline, the days slowly trickle by
Outside my misty window, the city gently sighs
I'm climbing the four walls of this glass cocoon
Somebody please tell me I'll be out of here soon

The city skyline is spattered with rain
I can't wait to feel the sun again
On my face again

We could turn this glass oasis into a holiday for two
Where there's sun and laughter, and plenty of things to do
I've got to get my head from now to then
I will have my time in the sun again
In the sun again

Every day, as I'm bound to this pole
A bit of sunshine drips into my soul
Drips into my soul

Panadol for pina colada
Skyscrapers for the sea
IV for a sun umbrella
This is where I long to be

Panadol for pina colada
Skyscrapers for the sea
Ocean through a stethoscope
This gives hope to me

So, I'll cap this off with a condensed update:

Radiotherapy is over. There are not many 30-year-old Melburnians who can claim to have a "radiation tan" but I certainly have one. (Forget the solarium, try a radiation machine! And it actually gets rid of cancer, instead of causing it!) And it's in a kind of heart shape, on both my chest and back. Apart from an icky armpit rash, a few flat days and a dull sore throat on some mornings, radiotherapy was ultimately a walk in the park compared to everything else I've been through. But after five weeks of appointments five days a week, you can imagine how relieved I am to tick that treatment off the list. 

But as is typical with my journey, one chapter closes, and another begins. As radiotherapy drew to a close, I began my injections of the drug Interferon. Interferon is a pretty commonly used drug that can be used to treat things like Hep C and MS. For me, the aim is to activate my immune system (or Megan's, should I say) so that it can fight the lymphoma. The plan is to keep upping the dose until I get graft vs host disease (GVHD). The Interferon comes in the form of a pen, similar to the Epi-pen used for allergic reactions. I have to inject myself, to the stomach, three times a week. This hasn't really been a problem - just last year I had to give myself twice-daily injections of Clexane for three months, and the needles for that were far bigger. 

With my next PET scan looming (No. 13, dun dun dun) I would be lying if I said I am not starting to feel some pre-scan anxiety creeping in. Last night in bed, I had a sudden case of the sweats: What if the PET scan isn't clear? What if I run out of options? What if? But I have been here a million times before and I am pretty skilled at pushing these thoughts in the darkest depths of my mind. As they say, "Ignorance is bliss". I don't want to spend my days wracked with stress and anxiety, so I am just focusing on the best thing I can focus on: that right now, I feel good. 

I have hair! Though admittedly not as much as my two-year-old cousin Hakeem

I am hoping more than anything that next week's scan comes back clear. But my ultimate goal goes a step further than that: I'm aiming for TWO clear PET scans in a row, something that has never happened for me. Once I reach that goal of two in a row I will be booking a trip to the US. What better place to celebrate being healthy again than New York City?

If my PET is all good, I will be leaving my North Melbourne apartment, which makes me a little sad because I absolutely love this city and this area, but I am also looking forward to moving onto the next phase. I will have to head back to Gippsland to regroup and work out the next step but I am pretty sure I will end up back in Melbourne. As per usual I am not planning too far ahead. I've been here before; thinking I was on the home stretch and about to get on with my life, only for things to come crashing down. Instead of returning to the comforts of “normal life” I faced more treatments, more anguish, more uncertainty. Now, I feel reasonably optimistic but it’s so hard to let myself even dare to dream that I might be anywhere near the finish line. But that’s what I do, it doesn’t matter how many times life kicks me in the guts, I still look forward with blind, naive optimism. And even though life has been pretty nasty to me lately, I still really do love it. I have to. 

100 days ... but who's counting?

One-hundred days ago, I was sitting in isolation in the Bone Marrow Transplant ward of the Royal Melbourne Hospital, anxious but full of anticipation about the journey ahead. My white cell blood count was written clearly on the whiteboard: zero; meaning that my bone marrow was primed for the its new stem cells to arrive. The infusion was quick and simple and uneventful, but the procedure was potentially life-saving. Sitting there on day zero, I felt the weight of the monumental task ahead. At that stage, Day +100 felt like an elusive dream.

Well I've made it. I'm officially at Day +100, that magic day. But it's not the happy milestone I expected: it's just another day. 

Day +100 has been mentioned a lot in this blog, and some of you might wonder what is so special about it. Day +100 is what every bone marrow transplant patient is striving for, because, ideally, on this day, they are set free from the hospital regimen of weekly blood tests, check-ups and scans. It means they have got through the 'danger period' and on their way to recovery and independence. It is the day they walk out of the hospital and get on with their lives.

Today I didn't get to do that. While essentially, I was able to walk free of one hospital, I am walking right into another, and my treatment is ongoing. 

I don't really care to dwell on it; Day +100 as a milestone is uneventfully over, but this just means I get to create another. I know better than any other person that things often don't go to plan. I have often likened my journey to sitting on a raft being pushed down a river, and I simply have to go where the river takes me. If I hit rapids, there is no sense in fighting, I simply have to ride it out and have faith that I am going to get out the other side. This visual metaphor has been a very calming influence for me.

So in the past three weeks or so in which I haven't wrote, many things have happened. 

1. Slight changes to the game plan, again

Last time I wrote, the plan was to get 25 sessions of radiotherapy to shrink the tumour in my chest to a manageable size, so that the graft (my new immune system) can carry on and do its work fighting the lymphoma. This plan still stands, however, some extra ammunition has been added to the mix in a bid to hit the lymphoma with everything we've got. 

Firstly, I'll be getting a drug called Rituximab, a drug I know very well. It has featured in every single cycle of chemotherapy I have had in the last 15 months (which adds up to more than 10 cycles now). Rituximab, which was introduced in the '90s, destroys B cells, so it is very effective in treating my cancer (diffuse large B-cell lymphoma). Alongside radiotherapy, it is hoped this drug will have a dramatic effect. The side effects of Rituximab are minimal compared to other chemo drugs, so I don't need to worry about the usual symptoms like low blood counts, loss of hair, sickness, etc.

The other drug on the table is Interferon. This will be used to boost my new immune system, to kick it into action and get it fighting the lymphoma. At this stage, the plan is that I will receive both of these drugs in two weeks, following the completion of my radiotherapy. 

2. Tell me why I don't like Tuesdays

I have been admitted to hospital twice in the last two weeks or so. The first time was Tuesday, January 22, when I came into Peter Mac for my Rituximab. I was feeling pretty average that morning, but this is not entirely unusual (I'm not a morning person at the best of times). When they did my observations, it was discovered I had a low-grade fever (37.5), an elevated heart rate (140bpm) and low blood pressure. Blood tests also showed my white blood cells were at rock bottom (0.1). Bang - hospital admission. I stayed for two nights, no evidence of an infection was found, and I was discharged just in time for the weekend.

3. Aussie Day shenaningans

I had friends visiting, so after my "release" we made a weekend of it. This involved dinner in a restaurant over the twinkling lights of Melbourne, singing our lungs out to karaoke till all hours, nibbles and games at the park and some Hottest 100 tunes (the worst countdown in the history of Hottest 100 countdowns), energetic Just Dance-athons and a cheeky road trip to Mornington on a perfect blue-sky day. With the beauty of hindsight, I now acknowledge that it was probably overload but I would do it all again in a second. 

If you haven't sang karaoke for five hours straight to an empty bar you haven't lived.

Bogan? Me? Nah.

4. Tuesdayitis strikes again ... 

The Monday followed Australia Day I was suffering burnout. I felt ill and could barely peel myself off the couch. Once again this wasn't altogether unusual. For the past couple of weeks since I had been taken off steroids, I had been suffering extreme fatigue, nausea, loss of appetite and an itchy rash, things I assumed were related to steroid withdrawal. I had dropped kilograms from my frame, weight I couldn't really afford to lose.

But the shortness of breath I experienced on Tuesday morning was something else. I had walked from the apartment, into the lift, out of the lift and into the car, and I felt like I could barely breathe. I felt tight in my chest, it felt exactly how I would expect an asthma attack to feel. And I panicked. How can a walk of roughly 10 metres leave me feeling like I was bordering on cardiac arrest? Something wasn't right.

My breathing had steadied by the time I got to Peter Mac for radiotherapy, but when I was called from the waiting room I had a dizzy spell. As I walked to the machine stars filled my vision and I had to steady myself as the radiotherapy assistant asked if I was OK. The nurse was called and after I registered a temperature of 38.1 and an elevated heart rate, I was again admitted to hospital. Unlike my previous stay, this time, I genuinely felt unwell enough to be in hospital so I accepted it.

Four nights later, the verdict was that I was suffering some lung inflammation. Scans and X-rays showed that there was no permanent damage or signs of infection in the lungs, so it was assumed that the inflammation was in its early stages and needed to be treated before it got serious. The doctors believe the cause of the inflammation was GVHD, and the radiation possibly exacerbated it. 

The good news was my chest scans showed that the tumour in my chest had shrunk, by a third of a centimetre, and considering its overall size is just more than two centimetres, this is significant shrinkage considering I'd only had two weeks of treatment. HELL YEAH.

5. Back on the 'roids again

I was discharged on a hefty dose of Predisonolone (steroids), the remedy for lung inflammation. Since then it's like somebody has flicked a switch. Instead of picking at my food with disinterest, I want to eat everything in sight. I have energy, I can walk reasonable distances, my cough has disappeared and I feel like a new woman. This is great, but it always concerns me what a dramatic effect the steroids have on me, and hence the complete burnout I experience when they are taken away. But the important thing is that they are taking care of the lung inflammation and right now I feel better than I have in weeks. As a result I am getting out and about, remaining active and eating as much as possible to make the most of this steroid high. And it's kind of fun!

While I am in a good place right now, the past few weeks haven't been easy. It's been a tumultuous few weeks and sometimes when I'm asked "how I'm holding up" I have to hold back the tears. It's sometimes difficult to accept that after everything I've been through, I still feel like I'm going backwards. I'm tired physically and mentally and so frustrated. I hate that my life is dictated by radiotherapy and clinic appointments. I hate having awesome weekends with friends and family only to return to the crippling reality of hospitals and waiting rooms. I hate seeing all the other patients around me at Peter Mac having such a hard time (though their strength and joy amid the despair is inspiring). I hate that I am a rake, the lightest I've been in about 12 years or more. I hate that I feel I am getting physically weaker, not stronger. I hate cancer so much! 

6. Upwards and onwards

So what's next? I will continue on with the radiotherapy for the next couple of weeks. I have had 14 sessions thus far, so I am just over halfway there. I will rejoice the day I don't have to lie down on that cold bench, get poked and strapped and drawn on, locked into a suffocating mask and get lasered with radiation beams. Although I find myself falling asleep during a lot of sessions, so it's clearly not stressing me out too much. The science of radiotherapy really astounds me, I just can't believe that these radioactive beams are entering my body from all directions and sizzling a tumour embedded deep inside my body. I am always so inspired by how fast cancer treatments are moving - I think in the future radiation will be able to destroy a tumour in no time at all without affecting other delicate organs, chemotherapy will destroy cancer cells without making people sick, and doctors will be able to wire patients' own immune systems to fight the cancer themselves. This is the direction everything is heading.

Around the same time I finish the radiotherapy in two weeks, I will be taken off the steroids again and I will begin on the Rituximab and Interferon which, it is hoped, will help my new immune system to mop up the rest of the lymphoma cells and finish the job. Once again I can only hope and keep all my fingers crossed that this will happen.

At the moment, I have two very promising signs: firstly, that my immune system is interested in fighting the cancer (evidenced by the apparent GVHD and other symptoms) and that radiotherapy or Rituximab or both, are shrinking the tumour. Stuff is working, and I can only be happy about that. 

Oh did I also mention I went to a wedding? Naomi and John, I am so happy I was well enough to share your special day with you - such a perfect day!

·     

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Hope: still present; Patience: wearing thin.

I've never been a fan of the new year's period. The pressure to do something amazing on what is really just another night, indecisive friends, resolutions that are rarely fulfilled, inflated prices, crowds, drunk people ... blah, who cares. Let's just start the new year already. And then when things finally tick over to the next year and it's supposed to be a new beginning, etc, everything just feels the same, except you're nursing a mammoth hangover. 

2013 so far hasn't been anything to rave about. But I still have hope it will get better.

Despite this, I really enjoyed my new year celebrations at the Grampians at my cousin Laura’s house. It was chilled, low-key and enjoyed with quality company among the beautiful mountainous surrounds of western Victoria. It was everything I wanted from a NYE. After a super tough year of treatment which had me essentially tied to Melbourne, I really just wanted to get out of the city, and I’m so glad I did.

Hollow Mountain, you got nothing on me.

While I was on top of Hollow Mountain, my phone rang. It was a call from the PET centre to confirm my appointment on January 2. Just another reminder that you can never 'fully escape' from being a cancer patient

Watching the sunset on new year's eve

Because January 2 was a plunge straight back into the cold, harsh waters of reality. Back to Peter Mac, my old home, which was depressingly empty due to the holidays, and back through the PET scanner. (I’d lost count at this point how many scans I was up to but mum informed me it was my 11^th.)

I emailed my doctor to let him know the scan was done, and he was going to call me with the results. When I hadn’t received a call from him by the following afternoon, I was fearing the worst. I have been through enough PET scans to know that if it’s good news, they usually try to tell me about it as soon as possible. I felt that on the morning of January 3 I already knew what was coming.

So when I met up with my transplant doctor at about 2.30 that afternoon, he was forthcoming with the scan results. “Some lymphoma has shown up on your scan,” he said straight off the bat. “Let’s get that out of the way first.” Deep breath. It was what I expected, but still not what I wanted to hear.

However, this does not mean the transplant has failed. Since the transplant, I have been on all sorts of medications to suppress my immune system, to prevent the onset of graft vs host disease (namely two - Prednisolone, a steroid, and cyclosporin, an anti-rejection drug). This also means that my new immune system has not been given a chance to fully kick in, to fight the lymphoma as we hope it will. They are hoping that as they wean me off these medications, my immune system will jump in and attack. “It’s time to unleash the tigers,” the doctor said. Of course there are no guarantees this will happen, but everything is set up for that to happen. So once again, like everything, it is another waiting game to see if my immune system has what it takes.

The good news is that the lymphoma’s growth is not anywhere near as significant as it has been before, with a few spots across my chest, a spot on my arm and a faint, possible one in my pelvis. Considering that I have not had chemotherapy since late October (and low-dose chemotherapy at that), this would suggest that maybe the transplant has had some effect, and slowed the lymphoma. It's hard to know at this point. 

As a result, I have stopped taking the steroids and my cyclosporin dose will be gradually reduced over three weeks. Both these medications suppress my immune system and prevent GVHD, so I will have to be watching closely for GVHD symptoms in coming weeks. But I find myself wanting GVHD because if the graft is attacking my body’s good cells, that generally means it is fighting the cancer too. But GVHD, in the serious stages, can be dangerous and even life-threatening, which is why it's important to keep an eye on it. You often hear the line from doctors that you want a "little bit" of GVHD but not a lot, because it shows the graft is doing what it's supposed to. 
  

I’m pretty used to this kind of news, but I’m tired. I just wish this lymphoma would get the picture and realize I don't want it around anymore. 

In other related news, I’ve also been made aware that I have a CMV infection. CMV (cytomegalovirus) is a virus that 50% of people have. In healthy people, it remains “latent” – that is it stays in your body, but your immune system keeps it dormant. When someone is immuno-suppressed (like I am), CMV can be reactivated and there is a danger it can cause serious infection. My latest blood tests show that my CMV levels are increasing, so to get it under wraps quickly, I need IV antibiotics for at least the next two weeks.

Thankfully I do not need to be admitted to hospital for this; I receive these infusions in my apartment via Hospital in the Home. Nurses visit me once a day to oversee my morning infusion, and then program my nightly dose into a pump I have attached to me at all times. Which is the downside. I have to carry this thing around with me and the HITH rules stipulate that I can’t leave the apartment. Of course this happens right when I have important social events to attend, like a hen’s night and a wedding. It's actually been too hot to spend too much time outside anyway, and I pray that it will only take two weeks but it could take longer. Hopefully though as I am weaned off the immunosuppression my immune system will be once again able to keep the CMV under control.

My new friend "Happy" (named after one of the seven dwarves) who never leaves my side
 and gives me antibiotics twice a day

So yeah a bit of a crummy start to the year all up, but as my doctor has reminded me, allogeneic stem cell transplants are “a process” and I will cross the bridges I have to cross when I get to them. I guess it just annoys me because once again, everything is clouded in uncertainty. Cancer has become so entrenched in my psyche that being lymphoma-free just feels like an elusive dream at the moment. 

The positives are that I am feeling OK, the cancer is nowhere near as widespread or menacing as it was and the doctors are still quite positive, so then so am I. One of the doctors from the transplant team told me while the presence of the cancer wasn’t ideal it was “acceptable”, and the head of the team said he wasn’t happy the cancer was there, but he wasn’t surprised either. He said they had really only completed 10% of what the transplant set out to do. So hope certainly is not lost. 

Really there is nothing else to do but carry on like I have been, and that's what I'm going to do.

I can see clearly now ...

Good evening, Day #31. Weeks ago the days were slowly trickling by, and Day 100 felt so far, far away. Now I am already a third of the way, and “kicking goals” to quote my doctor. If I wasn’t swallowing 20 pills a day, wearing wigs and scarves to cover my bald head and spending enough time in Royal Melbourne Hospital to know many people by name now, it would just feel like a regular summer. Health-wise I’m as strong as I can be – my organs are all functioning normally, I have no debilitating symptoms and even my energy levels are pretty good – I am far from housebound and enjoying the many things that North Melbourne and surrounding areas have to offer.

I am still required to visit the Royal Melbourne day centre three times a week for check-ups. Among the familiar faces are a diverse range of haematology cancer patients; some young but most of them old; many of them are post-transplant patients like me; some smiling, some sad; some with chemotherapy feeding into their veins, some with fluids, some falling asleep in their chairs; most with companions like partners or mothers. I am well-acquainted with day centres, having frequented them at London, Latrobe Valley, Peter Mac and now RMH for my various treatments. Sometimes they would be depressing places – you are often surrounded by some very sick people - and I would get this mild anxiety about having to sit in “the chair (morbidly, in my head I would associate it with an electric chair). Even though it is a place of healing, you are also having poisons injected into your body.

I have to say the RMH day centre is different though; it’s not such a bad place to be. I go there enough that everyone is familiar, and the staff are so upbeat; smiles and jokes abound. Quite often it’s a fleeting visit: the nurse performs the general observations, runs off a copy of my blood counts, then I have a brief chat with the doctor about anything that might be bothering me and I go on my merry way. Sometimes I have stay a couple of hours for an intravenous top-up of magnesium (the anti-rejection drug cyclosporin chews up my magnesium levels) or fluids. Soon though, these visits will be cut to twice a week which is a good sign. Next week I also get to lower my daily steroid dose which I am looking forward to because it’s hard to get a good night’s sleep on 35mg of Prednisolone a day. The steroids keep graft versus host disease in check (which I have had no symptoms of as yet) so it will be interesting to see what happens there.

It will still be some time until I find out whether the whole point of the transplant has been achieved and whether my new immune system, “the graft” has attacked the lymphoma cells. Building a new immune system is no small task and at the moment it’s barely clicked into first gear. It won’t be firing on all cylinders until another six months, and until then I still have to be careful in terms of infections (I can actually get measles, mumps and all that nasty stuff that most people are immunised against). I have a "baby immune system" as one nurse described it. My next PET scan will be around Day #60, some time after Christmas. Again this is too early to tell whether the graft vs lymphoma effect has taken place, it will simply be a surveillance exercise. All I can do for now is celebrate that I am feeling well and enjoy the glorious Melbourne summer and festive season that is unravelling around me.

Queen Victoria Night Markets ... I love Melbourne in summer

And I can’t believe how at peace I feel. 2012 has by no means been an easy year which has taken to me some of the darkest places of my life. But right now I feel I have come so far and grown into the person that I want to be. I just have to wait for my body to catch up and heal to complete the picture. It's been a year since I returned from London and I still find myself in limbo; unable to get back to work, get back on my feet and regain my independence and that has been very frustrating. Reconnecting with friends after 18 months abroad and with an illness has been a challenge as well. But at the same time I have had plenty of time to reflect, think about the things that are important to me and what this thing called life is all about, and I feel like I’m in a good place right now, moreso than a lot of physically healthy people.

I feel there are so many positive things happening lately too. While in North Melbourne I have been able to visit fellow Traralgonites Chrissie and Wes and their three-year-old son Aston who has undergone a bone marrow transplant at the Royal Children’s Hospital. It has been a long, tough nine-month journey for Aston who amazingly recovered from stage 4 GVHD and a stint in intensive care, and now he finally gets to go home to Traralgon for good. Seeing Aston doing so well and the way his parents rally around him has been a major boost for me. Around the same time, dear friends of mine in Merimbula have reached a milestone: their two-year-old daughter Pearl is now four years on from her leukaemia diagnosis, has had two years chemo-free and is strong and well. Jimmy Stynes said in his book, “Those looking for perspective will find it in bucketloads when spending time with kids with cancer.” Their resilience in the face of everything they’ve been through is just inspiring and life-affirming. It also shows that even when things seem bleak and neverending, there is always hope.

Today was also a great day because I did something I’ve never done before: I wrote a song. At RMH there is a wonderful music therapist called Emma O’Brien who visited me while I was on the ward for some guitar playing and singing. While I was “inside” I put some poetry together, and today I visited her at the recording studio (yes RMH has a recording studio!), we added some chords to it and we’re planning on doing an initial recording next week. It’s a great song and I’m excited about it. Rock stardom here I come!

Emma O'Brien featured in the November 30 edition of The Age's Melbourne Magazine

Now a funny story to cap things off. Last weekend I went out for dinner in Port Melbourne with my brother and some friends. While I was sitting staring out the window at the beach views, I noticed that my vision was crystal clear. I’m mildly short-sighted and need the help of contacts or glasses to see for long distances. But wait, what was this? I could see ships clear as day on the hazy horizon, and I could read the specials board from the other side of the room. Had my vision magically corrected itself? Had Megan’s stem cell superpowers given me perfect vision? I was baffled by this until I got home and upon inspection of both my eyes, I realized that I was still wearing my daily contact lenses that I had forgotten to take out the night before, when I had flopped into bed exhausted. These lenses had withstood a night’s sleep and a shower, and once they were finally removed, alas, I was blind as before. Classic blonde moment (no I can’t blame it on “chemo brain”, I was always like this). Ah well, I still hang on to the hope that Megan’s stem cells will pass on some kind of superpower, her mad guitar skillz maybe? Her unbeatable Just Dance moves?

So that’s November. A month in which I reached a year since my diagnosis, a month in which I recovered from my second stem cell transplant in a year, a month in which I wrote my musical opus, a month in which the sun shone on Melbourne and reminded me why it is still one of my favourite cities on earth. It’s all good folks, it’s all good. 

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 5^th 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.

Letter from the inside: day +10

So it’s day +10 and like every drip of saline, the days are slowly trickling by. My neutrophil count has been zero for about eight days now, and unable to leave the ward, I can certainly feel cabin fever coming on. This treatment is testing my patience to every inch of my being. I am hoping that white blood cells, born from Megan’s stem cells, will pop up in my bloodstream soon. But for now it is just another excruciating waiting game. I should just thank my lucky stars that I am feeling pretty good at this stage, but as the nurses say "you are either sick or bored". I'm bored.

For now, I am working towards three goals:

1.     Get out of hospital (hopefully within the next week)

2.     Get a clear PET scan (in about a month and a half)

3.     Get to day +100 with few problems (90 days from now)

So, from a strictly medical point of view, I’m doing pretty well. I started to feel really under the weather at about day +8, when my throat pain increased and I felt weary and drowsy. That night, of the day Obama won his second term of the American presidency, I spiked a temperature. About 90% of patients undergoing my treatment end up with a temperature, so this was no surprise. Additionally a skin infection has flared up on my right cheek, so at the moment I look rather monstrous. I have been on IV antibiotics for this for several days, and it looks like it is being kept under control.

This is much harder than my autograft, simply because things take longer. I was discharged on day +11 of my autograft, and I will no doubt still be here with a zero neutrophil count on day +11 of my allograft. I haven’t even breathed fresh air for coming on two weeks now. There is every chance I could make it to day +20 without my counts increasing, so I have to be patient.

For now I am feeling OK. My throat pain has waned a little bit and they haven’t had to put me on any IV feeding aids, so I’m kicking goals in that department. I can still manage walks around the ward, and still have quite a bit of energy for someone who’s been through the wringer. Got to be positive signs.

As some of you may have noticed, I have resorted to drawing motivational drawings on the whiteboard to keep me going. The box of letters, a gift from my friends from high school, has also helped me remain positive amid the day-to-day gloom. I’ve committed to reading one a day and the photos and cards have put a smile on my face, as well as brightening up an otherwise drab hospital room. Most of all they have helped me maintain a positive outlook – even the notes and cards from people I’ve had little to do with over the past 13 years (showing my age now) – it means a lot that they wanted to drop in a note to wish me well. I still have a few to go – but thanks everybody who contributed, it was such a thoughtful gift.

Another thing that’s given me a bit of a lift is the completion of Jim Stynes’ book, My Journey. Such an amazing and inspirational story; what a man, to face such adversity with such positivity and courage. There is so much I want to quote from this book, but I’ll save that for another time. I recommend this book to anyone, but especially to those who have had experiences with cancer – there will be so much to relate to, and I think it’s a wonderful thing to know you’re not alone. That’s what Jimmy wanted to achieve by going so public with his journey, and I am thankful.

What else? I won $150 by picking a winner (Green Moon) on the Melbourne Cup, which I watched from the comfort of my hospital room. That and Obama’s win, have given me a boost. These are good omens, they just have to be. 

Admission accomplished!

So much to report this week that I think I will have to split this into two posts. But above all, two main, potentially life-saving things have happened:

1. The "Flying Dorts" cycling team completed their 200km Ride to Conquer Cancer with flying colours over the weekend, contributing a whopping $18,000+ towards vital cancer research at Peter Mac (pictured below - this photo is now blu-tacked above my daily cell count whiteboard for inspiration)

2. The stem cells are in! About 8 million stem cells were taken from Megan via apheresis yesterday morning and brought to me in the ward in the afternoon, and administered by drip. Not much really happens for a few days until these stem cells grow and develop new white blood cells and hopefully the "takeover" begins. 

I'll focus on the first point for this post, but to prevent me (and you) from getting lost, I will cover events in chronological order. 

On October 21, I checked into the BMDI (Bone Marrow Donor Institute) apartment that will be my home for the next few months (apart from the 3-4 weeks I spend in hospital). These apartments are run by a charity called the Fight Cancer Foundation, of which Hugh Jackman is actually a patron (there is a wing named after the Jackmans in BMDI house). It's a great apartment and only a short stroll from the Royal Melbourne Hospital, so we've been lucky to secure such a facility.  

My first five days of chemo were administered in this apartment by Hospital in The Home (HITH), which was great because it shortened the time I had to spend in hospital significantly. It was kind of like having your own Mary Poppins who popped in every day with her collapsable pole (to hang the chemo from) and bag of goodies, though there was no 'Spoonful of sugar' song with it, thankfully.  The chemo, Rydarabine, was given as a 30-minute infusion every day and was pretty gentle stuff. I didn't really get any symptoms and remained very active over these 5 days, getting out and about.

Then arrived Saturday, which was a big day. As well as being my hospital admission day, it was the day my cousin Kate, brother Sam, sister Jacqui and dad Keith set off on their massive 200-kilometre challenge, The Peter Mac Ride to Conquer Cancer. The ride began in Albert Park and ended in Healesville on the Saturday, then it was all the way back to Albert Park on the Sunday. Amazing feat and so proud to see all four manage the whole ride without giving up – they should all be proud, as I am. What a team!

The "Flying Dorts" crossing the finish line

That Saturday morning I decided since my family was tackling a brave 200km in two days, then the least thing I could do is drag myself out of bed at 5am to see them off at Albert Park. Typically, it was a freezing Melbourne morning, drizzling and grey with an icy wind blowing. But it was inspiring to see all the cyclists in their yellow vests, and of course as I hugged the four members of my team and wished them luck, it was impossible to hold the tears back. A moving moment, an amazing event that raised $6.2 million for Peter Mac, making it the biggest single fundraising event in Australia. We raised more than $18,000 (and still counting, I think) of that total and that was thanks to the generosity of our friends, family and supporters. Having been through the list of donors on the website, we have been so touched; some of you have been beyond generous. At loss to thank everyone individually at this moment, please do know that every donation has meant so much, and that includes everyone who attended the range of fundraisers we've held over the past weeks. 

Megan and I at her High Tea fundraiser

I’ve also started digging into my wonderful box of letters presented to me by Suze and Mars at the High Tea (which was great, thanks everyone who attended and to Megan and Mum for putting in the hard yards to organise and cook). I have decided I will read one letter a day while in hospital and have been very touched by what I have read so far. In the last few weeks, fundraising for this ride has taken me to a trivia night, a Grease movie night (so much fun singing along, forgot what an awesome classic the film is), Megan’s High Tea in Traralgon and unfortunately I missed my brother’s gig in Bendigo but heard it was a huge success! I’m sure the ‘Moxie band’ will be getting more bookings, my 31^st next year maybe? In the meantime, my story has also appeared in the Latrobe Valley Express, Bendigo Advertiser and The Melbourne Times. Am happy to admit I am a bit of a media tart, just send any enquiries via my agent :)

My wonderful box of letters

News travelled as far as Bendigo ....

It's been an action-packed time. After my last pre-transplant test about 2-3 weeks ago, my PICC line was removed from my arm. It had been my companion for three months. I remember getting it put in back in July was so painful, not physically, but mentally because it signified the start of a very difficult period of further treatment. The time of relapse was a very dark period for me, it floored me, probably even more than the original diagnosis did, and put a big dent in my spirit. Three months later (now) I feel that psychologically I am in a much better place. When I start worrying about the transplant outcome, I tell myself not to worry about something that hasn’t happened yet, but that is easier said than done. I think about it every day, how can I not - it's my life? When my mind wanders to a life in remission – growing my hair back, going back to work, getting my independence back, getting my strength back, I stop myself, as it hurts too much to think that maybe that won’t happen. I have thought about the alternative, death, too, and I know I definitely fear that a lot less than I used to. It's not a nice thing to think about, but it really is something I do have to think about. 

But one positive thing about all this, is that I have tolerated the chemo very well so far which has allowed me to do a lot of things that other cancer patients simply cannot do. Like go to Queensland, for instance. Two nights in Brisbane, two nights in the Sunshine Coast (thanks to my cousin Dan and his lovely girlfriend Stace). 28 degrees, catch-ups with some wonderful friends, swims in the ocean, pool and Jacuzzi (which wasn’t possible with my PICC line nor with the Hickman’s Line I got inserted last Monday – I made the most of this week of line-less freedom!) Amid the drudgery of hospitals and appointments, my life has glimpses of awesomeness, and I am grateful for that.

Gotta love Brisbane ....

So Saturday afternoon I was admitted to the Royal Melbourne Hospital. My room in the Bone Marrow Transplant unit has a view of the city skyline, ensuite, plenty of space for visitors and iPod dock. Penthouse ensuite apparently, a nurse told me. Breakfast included, room service, the culinary delights of Lygon Street only streets away … I have already busied myself making the room more 'homely' with a few decorations and things, since I'll be here for a while. 

Since my admission I've been feeling pretty good; I think I am just glad now that I am here and getting on with it. In the past weeks, out there in the real world, I wasn’t really thinking about it at all, I was just enjoying my freedom, and I’m pretty sure in about a week, the back-in-hospital blues will set in, but for now, it is just on with business. 

On Sunday night, I got a special visit from four members of the "Flying Dorts" cycling and crew team who informed me they have signed me up for next year's ride! 2013, here I come. Apparently there were a few sore bums and tired muscles but they all fared pretty well, and as I've said before, I'm immensely proud. $6.2 million will go a long way, and I am so confident that in the years to come we will be able to eliminate cancer once and for all.