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.

Operation stem cells complete

The hardest part is over. And what a journey it’s been. Isn’t it simply amazing that the many millions of stem cells were taken from my bloodstream, stashed in a bag, frozen, stored for months, defrosted, returned to their rightful home and are now back in my veins, swimming around, thriving and growing, making my body stronger again. Isn’t it simply amazing that six months ago, almost to this day, I was walking into a London emergency room complaining of some abdominal pain, about to find out that I had a giant tumour in my chest and cancer spread across my body and that my life was about to be turned upside down. Isn’t it simply amazing that I am standing here right now, an ostensibly healthy girl, my bald head and a huge scar on my chest really the only things that offer any clue of what I have been through.

Pictured above is my chest X-ray, taken on November 11, 2011 at North Middlesex Hospital in London, which is what began my whole journey. Below is what a normal chest X-ray looks like (the lump to the bottom right is the heart). As you can see, the large 'mediastinal mass' above and around my heart in the above X-ray shouldn't be there. My chest now, thankfully, looks more like the image below.

I was discharged on day 11 of my transplant, after two and half long weeks in hospital. When the consultant gave me the all clear to go, I had been expecting another 24 hours in hospital, and I was over the moon – just too tired to show it. I didn’t get to go ‘home home’ just yet – I had to stay in the apartments next door to the hospital for another week at least – but it was fantastic nonetheless.

The feeling of being discharged from hospital is such an elated high that for a moment, you almost forget the pain of the previous weeks (I said almost). But discharge day really is such a high, like being released from jail. Free from IV drips and constant blood pressure, heart rate and temperature observations. No more being roused from sleep at dawn so a path nurse can stab you in the arm for more blood, no more listening to other patients’ ablutions from the bathroom, no more staring wistfully out the window from the hospital bed as the sunshine-filled world moves on without you; no more stomach-churning hospital food, delivered in its pink plastic case; no more beeping monitors, no more peeing into a pan, no more daily discussions of bowel movements. But when I left this time, I got a bit emotional. I could barely thank the nurses without blubbering like a baby, because they really are the most amazing people ever, and made my two-and-a-half week stay in hospital so, so much more bearable. Additionally, the staff tend to take you under their wing, with nursing co-ordinator Trish exclaiming, “I’m so proud of you!” when she saw me looking strong and even managing to nick out for a coffee on day 10, and the haematology consultant congratulating me as he discharged me, saying this was the earliest I could have gone home.

All in all though, the stem cell transplant journey was a lot easier than I expected. My doctor and nursing co-ordinator had presented me with the worse-case scenario as far as the transplant went, and I’m glad they did. It is very, very hard to predict one’s treatment journey, as every individual is different. I was one of the lucky ones, as I noticed many patients around me at Peter Mac were doing much longer stints in hospital and facing far worse complications.

My major glitch – which was a serious one indeed, but luckily hasn’t ended up causing me too much grief - was the massive clot in a main vein in my neck. This had been caused by my arrow, or central line, which had become infected with a skin bug. On day 7, after the presence of the infection was confirmed, the doctors made the decision to pull the line out. There was a big nasty, swollen lump on my neck that was very tender and sore, and the doctors were concerned – my neutrophils were still at zero so I had no immune system to fight it. “This could have serious implications,” they told me, explaining that the infection could get to my heart, which would be catastrophic. Thankfully this wasn’t the case, which was confirmed by an ultrasound a few days later. In the days following the line’s removal, my white blood cells began to climb (which meant they could help fight the infection) and the antibiotics were also kicking in. I now have to take oral antibiotics for six weeks (one of which turns my pee orange) and also have to get twice-daily injections of a blood thinner called Clexane in order to keep this infection under control (which I have managed to give to myself – never thought I’d have the balls to stab myself with a needle, but it’s amazing what you can drive yourself to do in the right circumstances).

Another very small glitch I encountered, also on day 7 (a very action-packed day that was!) was a reaction to platelets. That day my platelets were low and so I needed a transfusion. I’d had several bags of platelets before, so no biggie. But for some reason, this time, towards the end of the platelets going in, my body grew itchy, my left eye and the left side of my face grew swollen and my sinuses clogged up (which meant I couldn’t taste the hospital food – a blessing!). So I was this disfigured, one-eyed Notre-Dame-esque monster for half a day or so. As Jacqui so helpfully contributed, “You look like something from Futurama.” Thankfully I had more platelets following that and a couple of blood transfusions, which went in without a glitch, so it was just that batch for one reason or another. The human body is a funny thing.

But apart from a persistent dull, sore throat, a couple of tummy upsets, some understandable fatigue, some night sweats, temperatures and mouth pain (remedied with some cocaine mouthwash – hospitals really do get the good stuff!), I didn’t really have that much to complain about. I didn’t get ulcers, I kept up my appetite, I was venturing out of the hospital just about every day that I wasn’t hooked up to the drip until my white blood cells bottomed out.

A rainbow outside my hospital window

One thing that really helped me was food. I’ve always had a more-than-healthy appetite (my parents threatened to lock the pantry when I was younger, and on inspection of my room, would often find empty chip, Tim Tam packets strewn across the place). I am a self-confessed food lover, to me it is one of life’s simplest and most luxurious pleasures. Through my last five cycles of chemo, my ravenous appetite has been a bit of a running joke. It is common for stem cell transplant patients to lose their appetite completely and in some instances, require nutrition via a drip or feeding tube. There were times when the hospital food made my stomach churn, and there were certainly days I ate less than others, and my weight did drop 3 or 4 kilos at one point, but those incidences were short-lived. A doctor at Latrobe Hospital told me to treat food as one of my medicines, so I was always forcing food down, even if the sickly sweet protein drinks the dieticians insisted on plonking on my food tray tasted awful, or the steaming pile of ‘butter chicken’ looked more like dog meat. I do believe this helped me a lot. My mother’s phone is full of text messages from me filled with random food requests: “I want a grilled chicken burger” or “Can you get me a scone” “I feel like Twisties” etc etc – God help the gopher who has to tend to my demands if I ever get pregnant.

Maybe the amazing one-point win by Collingwood on Anzac Day might’ve helped a little bit too … My mother managed to get an Anzac Day poster signed by Daisy Thomas and Harry O’Brien which sat above my bed during my stay in hospital. It incited both strong approval and extreme distaste, depending on who was looking after me. Of course I left it blue-tacked to the wall following my discharge, and one of the cleaners (a Pies fan) actually called me in the apartments and brought it down there for me.

Of course there are a million other things that have helped me get through this – a supportive network of friends and family (not a day went by without someone at my bedside), the amazing group of doctors, nurses and staff at Peter Mac and the power of positive thinking. There is absolutely no way I would be coping this well if I had to go through this feeling alone. I guess this is one of the most touching things about being sick; the kindness it brings out in the people around you and the inner strength it brings out in yourself.

I still have quite a bit of a journey ahead; I have this infection to sort out and I also have four weeks of radiotherapy about four weeks down the track, my final hurdle. Coming out of hospital, I didn’t feel the elation you would expect, as my body was still catching up. And the enormity of what I had faced and achieved just hit me. Five and a half months of emotion piled on top of me and some days I couldn't stop crying. But it felt good, like a release. For a while there I just fell into a heap. Now I have picked myself up again, but am interested in doing little more than some meditating, painting, gardening (I just planted a vegie patch), writing and reading (yep, I’ve gone from 29 to 60 years old overnight). I just want to find my inner hippie for a little while until I work out exactly how to embark on the next chapter of my life.

Speaking of chapters, my 30^th birthday is coming up. This is not really how I ever envisaged the lead-up to my dirty thirties to be, but I feel neither anxious nor happy about it. I am just happy to be here, simple as that (the post-radiotherapy/belated 30^th birthday party is going to be an unmissable event though, don’t you worry about that).

My hair grew back. Then it fell out again. 

Six months since I first went to hospital, and I am now in remission. After months of uncertainty, I finally know that I’m OK. I’m not cured yet – I won’t be able to say that for another two or more years – and for all I know, there could still be microscopic cancer cells floating somewhere in my body. That is something that all the doctors, tests and scanners can’t tell me – something we will never know. Which is why I have decided to go ahead with the radiotherapy, which will hopefully eradicate any cancer cells, if there are any left. But positive thinking and good will has got me this far, and it’s going to get me further yet. Cancer is past tense now, and hopefully it's there to stay.

Welcome home, stem cells!

Day 4 of the stem cell transplant and nothing much to report apart from some severe boredom. My neutrophils have only just hit rock bottom, but so far, so good.

I've been in hospital about 11 days now so you could say I've made myself at home. In typical Beth style, I didn’t realize that I was going into hospital until the actual day. Here I was, thinking I had an extra night free in the real world, when the plan had been to admit me Tuesday night and get things rolling early the next morning. Smart move really, because the nurses probably knew there was no hope in hell I would be getting up early (after four weeks of delicious sleep-ins) and beating peak hour for my 8.30am appointment.

The appointment was to get an ‘arrow’, or central line, inserted in my neck/chest area, which would give them a port through which they could administer the chemo. VAScath, PICC line and now an arrow – as far as lines go, I’ve had them all. And the same young female surgeon, who patients tend to mistake for a nurse, has done them all. We met again, like old friends, this time for the last time. She was very impressed by the results of my last PET scan; she had been quite taken aback by the size of the tumour of my very first scan in London. These kinds of reactions from medical practitioners are all just small reminders along the way that I am basically a walking medical miracle.

So chemotherapy drug no. 1 was a little something called Carmustine. I don’t know if they started with the worst first on purpose, but this drug really hurt. Luckily I slept through half of it because the half I was conscious during was so horrible I wanted to rip the drip out and be done with it. Basically the drug has a high alcohol content, so while it is going in it feels like you are on some kind of horrible bender (without the fun, going out part). For me, my eyes went bloodshot, my mouth and throat burned and I felt nauseated and extremely uncomfortable, to the point that when they offered me morphine, I didn’t say no. After about an hour following, the pain and discomfort subsided. Apparently heavy drinkers usually experience few side effects from the drug, so I guess those several months off the booze have softened me up a bit. :)

The following day was a rest day (though I did not plan on doing much resting!) and I was allowed out all day. 25 degrees, blue skies, a wonderful day in Melbourne. I spent it being a tourist in my own city, enjoying panaromic views of the city from Eureka Tower, going out on ‘The Edge’ – the glass-walled box that pops out and gives you a perspective of the city from all angles, even through the floor. It was a bit underwhelming to be honest, but my cousin’s daughter Jolon loved it so it was worth it.

We survived The Edge!

The day was finished with a light dinner in Federation Square, Swanston Street lit up magically for the comedy fest; the night perfectly balmy and still. A gorgeous night to be out in Melbourne. Pretty hard to go back to hospital after a day/night like that but it had to be done.

The next morning I got to go out for another walk across Collingwood in the glorious sunshine, before being hooked up for my second dose of chemo, the etoposide. This was pretty uneventful really – a couple of large bags, nowhere near as painful as the first day.

The next day was another rest day which I would be spending with a couple of my oldest friends, Fleur and Nicole. I met up with the girls at Southern Cross station before heading across to Edinburgh Gardens for what I had planned to be a small picnic (as it was yet another stunning day in Melbourne). When I arrived at the gardens, I noticed my cousin in-law with his young daughter at the playground. “No way, how uncanny!” I thought as I went over to say hello. Paul said he was at the gardens with my cousin (his wife) Sonya and pointed me towards her group of friends. I looked at the group. “That girl looks just like Jacqui!” I said, recognising the head of white hair among the group. As I got closer, I realised it was Jacqui, and that the people surrounding her were also several family members and friends! My family had organised a surprise picnic for me. Needless to say, this was yet another great day.

Sunday was my last day of chemo (hopefully forever!). I was given cyclophosphamide, a drug I have had before with my original R-CHOP regime, but this time I was getting 15 times the amount. The cyclo can be harmful to the bladder if it is retained in the system, so I had to be given a stack of fluids with the drug. They had to make sure I was peeing it out, so I was given ‘wee juice’ (lasix) several times which kept me going to the toilet. It’s funny how well-acquainted you (and the nurses) become with your bodily functions when you’re sick.

Monday everything was catching up with me. I could feel the drugs washing over my body. I felt dull and flat, and I was starting to realize how long and boring this was going to be.

Tuesday was a momentous day though: the day I got my stem cells back. That morning I was allowed out for a big, healthy breakfast and wandered around East Melbourne, enjoying the beautiful autumn morning; the orange leaves against the brilliant blue sky. When we got back, the little ‘spa bath’ for the stem cells was set up. 23 million of my stem cells, in three bags, were drawn out of a frozen capsule. They resembled frozen salmon. The bags were then dipped into the pool, thawed and hooked up to me via a drip. It’s amazing how simple the whole procedure is, considering it is life-saving technology.

The only side effects I experienced were a funny taste in my mouth from the preservative, which could be remedied by sucking on boiled sweets, and a tickling in the back of the throat. The stem cells have to be administered quite quickly, so before we knew it, the three bags were done. Stem cells, returning to their home, where they would grow and develop new babies – new blood cells.

So four days have passed since then, and now I’m just waiting. For the inevitable … the symptoms to set in – the sickness, discomfort, fatigue, fevers (90% of people on this therapy get an infection). It’s hard to know what to expect because I feel pretty good right now. My main problem right now is boredom and a lack of interest in the hospital food. But it’s early days yet. The lady I am sharing a room with is on day 9 of her transplant, and she is not in very good shape right now. I woke up to her crying this morning; and her day since then has been full of doctors and tests. But every person's journey is different and I'm not going to try to compare my situation to anyone else's. 

On a much more positive note, my amazing sisters and other members of my extended family have decided to participate in The Ride To Conquer Cancer in support of Peter Mac. I can't speak highly enough of the level of care I have received at this hospital - we are so, so lucky to have something like this in Australia. I'm not sure if I'll be up for riding, but I will definitely be taking part in some capacity. You can offer your support here.

Stem cells, phantom bugs and flowers

Life really is a fickle thing. One minute you're a seemingly normal, healthy person, with normal, healthy (and not-so-healthy) habits and duties. Decisions like 'Will I be able to make rent this week?' 'What should I wear to this party?' 'Where should I go for my next holiday?' dominate your reasonably carefree existence. How quickly a cancer diagnosis can change all that. Suddenly, your life is taken over by a big, heavy, threatening task that constantly looms ahead, and the hospital is not just a place you drive past every now and then, or hear about on the news. It's your second home. And every move you make, every change in your body is watched, monitored, discussed and documented. Every phone call or catch-up is to ask about your progress. And suddenly things like money, parties and clothes just don't seem to matter anymore.

I am very used to hospitals now. I've done the hospital circuit; I've been admitted to/received treatment at three in the UK and two in Australia. All of this has now brought me to the Peter MacCallum Cancer Centre in Melbourne. I’ve only been a patient with Peter Mac for a couple of weeks now, but already I know most of the nurses by name and familiarised myself with their individual quirks and nuances. I also keep bumping into some familiar faces among the patients, which is nice, though I am yet to meet a patient younger than me.

During my first admission to Peter Mac, I spent four days hooked up to a drip to receive my chemo. After that I got to go home for a few days. Those few days 'reprieve' at home were not particularly pleasant. I had some horrible symptoms that landed me in the emergency room on one occasion, and for the most part I felt helpless, weak, sore and completely flat and unmotivated. The days of painting, writing, editing, sorting through old belongings during my previous chemo were long gone. For someone who considers herself quite driven, this was difficult to deal with. I had no desire to answer my phone on some days. Depression suddenly made a lot more sense to me. 

Thankfully I was able to read though, and I voraciously consumed The Help (thanks Kate!) in a couple of weeks, which was really my own achievement over this time apart from the viewing of a few bad movies on Pay TV. 

On Sunday, about day 9/10 of my chemo, mum and I checked into our apartments next door to Peter Mac. The aim was that I would be close to the hospital so they could monitor me during my neutropenic phase and also carry out daily tests in order to collect my stem cells, which we had been boosting with daily injections of a hormone called GSCF. I was pretty much at my lowest point at this stage; I couldn't do much without feeling light-headed or short of breath. I didn’t even have enough energy to pack. After a restless sleep at the apartments, we were up early for my 8am blood test in Apheresis (the department in which stem cell collection takes place). I was feeling very rough. Just walking to the lift, out the building’s doors, then a few metres down to Peter Mac and back down the lift again, was really hard going. “Do you feel like you’ve been hit by a horse?” one of the Apheresis nurses asked me as I stood, or stooped, at the counter. They managed to find a vein (an arduous task for my arms at the moment), take the blood, then we went back to the apartment, where we would wait for a phone call regarding whether my stem cells would be collected that day or not. I crawled straight back into bed and slept soundly until 11am when Apheresis called me and told me not to bother getting up, because my bloods were too low, which explained my lethargic state.

That afternoon the dreaded happened. I checked my temperature (something I have to do four times a day now) and it was above 38 degrees; which generally means two things 1) an infection and 2) a hospital admission. I had also noticed something that looked like a spider bite or sting on my right knee, was becoming very, very swollen and red, and felt hot to touch. Every part of me wanted to be anywhere but in that hospital, but this was how it had to be. I was admitted at 8.30 that night, by which time, the lump on my knee was about the size of a golf ball.

So I settled in. The man in the bed beside me snored loudly. There's always a snorer - then the snorer gets discharged, and you feel relief, until the man across from you decides it's too quiet and works as a very effective replacement. It’s amazing though, I always manage to sleep reasonably well in hospitals. I don't know if the rhythmic hum of the drip machine and the medical staff and equipment moving around me that lulls me into a sense of sleepy security, but after three nights in hospital I didn't even know my night nurse’s name because I would always snooze right through her shift. 

Tuesday my bloods were still too low for the stem collection to happen, but they still wanted another blood test that day so they could monitor the trend. Getting blood out of me had been like getting blood out of a stone, literally. My veins had pretty much disappeared and most blood tests would require three or four jabs up my arm. Until I was able to be booked in for a port or PICC line, I had to endure the torture of nurses tying the rubber band around my arm until it felt like it was going to fall off, fingers pushing and pushing into my arm to feel for a vein, tentatively sticking in of a needle, sometimes failing to strike, sometimes succeeding. Blood sports!

The results showed my platelets (the blood cells that promote clotting) were low at 17 (normal counts are 150-400), which meant I required a platelet transfusion. A bag of yellow stuff resembling murky runny custard was hooked up to my drip, and viola! I had platelets, thanks to a range of generous donors. I was also given two blood transfusions as my red blood cells were also low (my blood type is B Positive! How fitting). My first blood transfusion, one that made me want to go out and donate blood, though unfortunately, my blood is no good to anyone now.

Wednesday morning heralded another dreaded blood test, but this one yielded good results. My blood counts were finally up, and my CD34 counts (the protein found in stem cells) were through the roof! It was about 350, ‘one of the highest they’d seen’ in Apheresis. “Lucky they were sitting down when I told them,” the nurse said. They were even gobsmacked enough to ask her “Are you sure it’s her blood?”

So Operation Stem Cell Harvest was on. First I had to go down to radiology and get a Vas Cath – a long tube that is surgically inserted into a large vein in my neck. It was a rather uncomfortable procedure carried out with some local anaesthetic, but they did the job, and then I was off to Apheresis, who couldn't wait to dip into my stem cell goldmine.

My Vas Cath. Frankenstein-esque

In Apheresis, I was hooked up to a giant machine via the tubes sticking out of my neck, and my blood was circulated through the machine which extracted the stem cells, then returned the remaining cells to my body. There was only one cup of blood outside my body at one time as I sat there for 2-3 hours as my blood wooshed through the machine and through my body. The machine made a curious sound as it worked away, similar to tap-dancing; what I liked to call the 'Stem Cell Song'. 

While that one collection would've given them the stem cells they needed, they brought me in again Friday morning for another go on the machine just to err on the side of caution. This time around we met a nice man called Aaron, who seemed to know a hell of a lot about stem cells. Aaron took some blood from me and predicted it would show a drop in my stem cell count, but again I caused quite a stir when my CD34 counts came back as 750. Now, that was the highest they'd seen! I don’t know what these high counts mean – I suppose it just indicates that my despite what my body has been through, my bone marrow is very healthy (or that I’m a superhero, as a friend suggested. Personally I like the latter theory better). I took a peek at the bag of stem cells before I returned to the ward, which resembled a Tequila Sunrise, the way they went from red at the bottom to a murky yellow at the top (where the white blood cells and plasma were). Mmm … Stem Cell Sunrise! When the official stem cell counts came back, it turned out they had harvested 67 million – which they figured must be close to a record! (They only need a minimum of 2 millon to go ahead with the transplant). I am a stem cell making machine!

My precious stem cells ... straight to the freezer you go!

Then the good news just kept coming. The doctor gave me the green flag to be discharged on Thursday afternoon. My white blood cells had leaped from 6.7 to 40 overnight; there was some kind of out-of-hand malaky going on in my bone marrow (maybe it was celebrating - hey, the stem cells are out! Let's throw a party!). That night I couldn’t wait to get out into the open air, free of all drips and hospital beds and blood tests and doctor visits, so my mum, sister and I treated ourselves to a delicious Thai feast on Smith Street.

It's amazing how quickly I bounce back, once I'm on the up again. For the next few days I was out and about in Melbourne, feeling very mobile and strong. My mother was stunned at my transformation; I was 100 times better than the Beth that had arrived in Melbourne several days ago. 

Saturday, we drove home and I spent a really nice weekend catching up with my little sister and old friends. Being in a small town, I found myself in the same restaurant two nights in a row; both times served by the same young chatty waiter. However, thanks to some crafty wig-wearing, the first night I'd been a brunette, and the second a blonde. The jury's still out on whether he actually worked out whether I was the same person or not.

By the time Valentine's Day came around, a day I for the most part refuse to acknowledge let alone mark in any way, I was pleasantly surprised by the arrival of a bouquet of white lilies delivered to my front door. As soon as I opened the card and read Matt's name I wanted to cry. Flowers, all the way from the UK. It's amazing how special gestures like this can make you feel. Maybe Valentine's Day isn't so bad after all ... 

On Wednesday, like a yo-yo, I was Melbourne-bound again.  Mum and I had to be up at the crack of dawn if we were to make it to Peter Mac at 8.20am to get my bloods done. Inevitably, we got stuck in traffic and got to the hospital at a time more like 9, and then we had to wait in an excruciatingly long queue before my number was called. Peak hour on all counts.

Then I was off to get my PICC line - a long central catheter inserted into my upper arm, then advanced through to a bigger vein above my heart. The line meant that the nurses would be able to draw blood from it and attach my drip to it without the laborious trials of needle jabbing and lamenting over my woeful veins. It was going to make my life and theirs a lot easier (the charge nurse actually said she would throw herself off the 9^th floor if I didn’t get one – my rebellious veins had become notorious about the ward). Unfortunately, due to several delays, my 9.30am PICC line appointment became a 1.30pm appointment. 

The delays on the PICC line meant I did not have time to get the first instalment of my chemo, the drug Rituximab, because there simply wasn't time. This was very disappointing because it would extend my stay in hospital by a day. But as this whole journey has taught me, things often don't run to plan, and when they veer off course you can't fall apart because in the scheme of things, it's trivial. I've had to miss out on a lot of things recently (giving away tickets to a band I really, really wanted to see a couple of weeks ago because I was feeling so ill broke my heart). But really, what is a missed social event when you’re fighting for your life?

Thursday I was admitted to Peter Mac for my second round of Hyper CVAD (fifth cycle altogether). I was pleasantly surprised to receive a bed with a view. Long windows gaped out to the gorgeous St Patrick’s Cathedral, its dark steeples piercing a brilliant blue sky. But view or no view, these hospital stays were starting to wear a bit thin. Visitors helped, as did my laptop and Nintendo DS, and the odd meander to Fitzroy Gardens (complete with drip machine in tow, attracting all kinds of stares), but the routine was getting old. I know I have to adjust, because hospital time is going to be a part of my life for some time yet, but it doesn't make it any easier. I still hate the dreariness, the long days, the warm sun mocking me from the window, being stuck to a drip and the horrible hospital food that I don’t want to touch. 

The view could be a lot worse ...

This time around was also difficult because on my third day in hospital the nurse came around and told me I had tested positive for a bug called VRE - an antibiotic-resistant bug that lives in your digestive tract and generally doesn’t cause any problems, but if you test positive for it in a hospital, you may as well have the plague. From then on, nurses, doctors, visitors and even the food staff had to wear a gown and gloves every time they came near me. They also moved to my own room, in isolation so I wouldn’t infect anyone. I felt alienated. The only benefit was that I got my own room and some semi-decent sleep. But otherwise, I felt like a leper.

On Sunday morning, based on the results from my blood tests I could be discharged, but because I had to get the Rituximab as an outpatient on Monday morning, I had to stick around. I was disconnected from the drip and was able to go out for the day, but would return that night to sleep at the hospital, then get discharged the next morning. I was keen to get as far away from the place as possible, though I wasn't feeling great ... I was off my food and feeling weak. 

My mum, sister, cousin and I did a trip to Essendon but after sitting outside at a cafe in the heat, I realized I didn’t feel too well, and had to run myself to the toilet to throw up. It wasn't one of my best days. I got back to my dark hospital room that night, feeling really ill and lying on the bed in discomfort, thinking I’d never sleep. The one good bit of news I got on my return was that I didn’t have VRE at all – there had been a mix-up at the lab. Leper stigma lifted! The staff were apologetic for the mistake, but I got two nights in my own room out of it so ... swings and roundabouts.

Strange dreams and mental images dominated my sleep that night; something else I seem to get around day 4/5 of my chemotherapy. When I woke up in that cold, dark room early Monday morning, I couldn't shower and get out of there quick enough. Then it was up to the chemo day unit to get my belated Rituximab, and then finally, home. At times, living at my mum and dad’s property in the bush has felt isolating, especially having come from the hustle and bustle of London, but this time, it was a safe, leafy haven that I was so happy to see. I have also developed an unhealthy attachment to my bed - I don't think I have ever held such affection for a piece of furniture before - too many years of sleeping on rickety hand-me-down beds in share houses. Just to be out of hospital had instantly lifted my spirits ... being admitted to hospital is almost worth it for the pure elation you feel when you're let out. Almost.

Amazingly, the last few days I have been in great shape. I have been going for walks, eating and drinking plenty and apart from some mild fatigue and shortness of breath – a symptom of my slightly low red blood cells - I feel pretty good, which is in stark contrast to my previous cycle. I've now realised that some of the horrible symptoms I experienced then were most likely a result of my intrathecal – a procedure in which chemotherapy is injected into my spine, which is then carried through my spinal fluid to protect my brain. I have a feeling it had been a bad dose during my last cycle, because I'd never had these symptoms before.

Pancakes on Pancake Tuesday make everything all right.

But nothing's ever simple. While I am so happy to be feeling good right now, it's underpinned by a niggling anxiety that maybe the mild symptoms mean the chemo isn't working ... however, it's not worth thinking about until I get my third PET scan in a couple of weeks.

Things are moving along, and the steps are being taken. It feels so good to tick stem cell collection and  my fourth round of chemo off the list. Every round of chemo means one less to go, that's what I keep telling myself. And while my eyes are always on the bigger picture, I also have to be careful not to look too far ahead either - worrying about a scan that is weeks away is in no way healthy. One day at a time.