Insert every expletive you can think of here

I should be used to curveballs by now. God knows I’ve had my share. That adage: ‘you never know what’s around the corner’ – well that couldn’t ring more true for me right now. But what really took me by surprise was the fact that this time a big Mack truck was screaming around my corner. It has knocked the wind out of me but it hasn’t defeated me, yet.

So, backtrack to about a week ago. Things were going pretty well for me, all things considered. I was several weeks out of my stem cell transplant and I was feeling pretty good – getting stronger by the day and able to keep up with most people. I would tire quickly and clearly my strength wasn’t what it used to be, but life was about to get back on track. I wouldn’t be running any marathons but I was doing alright. I had achieved ‘complete remission’ judging on my last PET scan and I was almost celebrating. The doctors had congratulated me and it was hoped that we would never see my lymphoma ever again. I knew I wasn’t out of the woods yet, but I was as close as I had ever been.

The ‘only’ hurdle I had left was radiotherapy – which would involve four weeks of coming into Peter Mac every day, to be passed through a machine for 20 minutes. The premise was that it would eliminate any cancer cells that were left, if there were any left. I wasn’t too worried about this, as the doctors and nurses had assured me that it wasn’t going to be anywhere near as bad as anything I had already been through. It came with its own long-term risks, such as increased chance of heart disease and breast cancer, but I was willing to take those if it decreased the chances of the lymphoma coming back. Radiotherapy was going to be an inconvenience, more than anything.

Before I got radiotherapy, as per procedure, I had to undergo a range of tests, such as a lung function test, ECHO (heart scan) and a PET scan – all things I underwent before my stem cell transplant. These tests were considered a formality more than anything, and they didn’t harbour much thought from me. Compared to the anxiety and fear that plagued me before my previous PET scans, I was substantially more relaxed going into no.4.

So when the radiotherapy oncologist took me into his office and told me that a small spot had showed up on my PET scan, I was dumbfounded. It was not at all what I could have expected. When I looked at the scan on his computer screen, there it was, clear as day, a 13mm spot in my chest, right where the original tumour had been. The experts had deliberated over this spot for about a week and were pretty much certain it was cancer. The chances of it being anything else were incredibly slim. As a result I won’t be getting a biopsy to find out for sure – the procedure itself is simply too dangerous and will probably only confirm what the doctors really already, in their hearts, know. I trust these men who have 20-plus years in the medical industry working with cancers when they say it’s a relapse. I wish I didn’t have to believe it, because the news is the hardest I’ve ever had to bear, but I have to.

It has been a bitter pill to swallow. I am only about 7 weeks out of my stem cell transplant and the cancer has come back. I have been through every myriad of feelings – anger, disbelief, sadness, despair, but most of all I just feel defeated. I have done everything I can, I have put my body through things it should never have had to go through, and I am back at square one again – in fact, a much scarier and dangerous square one. It feels like a kick in the guts. I spent days crying about this, but at the end of the day, like this whole journey, I can’t control what happens. So what can I do? All I can do is live each day like it’s my last. Literally.

To see how distraught my nursing co-ordinator and my oncologist were about this scan really brought home what a serious situation I am in. This has shocked and disappointed even them, and they’ve have seen everything. But basically, my oncologist sat me down and gave me three options.

Option 1 – Do nothing. Say goodbye to Peter Mac, doctors, needles, tests, hospitals – walk out the door and go and enjoy my freedom and live life. I’d have a pretty normal quality of life for a good six months until my lymphoma would be large enough to show any symptoms. Eventually, it would take my life, maybe after another six months, it’s hard to say.

Option 2- Get radiotherapy, to the chest area and upper abdomen, as originally planned, but a higher dose to the area where the lymphoma had grown back. However, the chances of this therapy being curative were 10%.

Option 3 – An allograft – a second stem cell transplant, this time using my sister’s stem cells (who tested as a match for me several months ago), instead of my own. This procedure comes with its own risks. There’s about a 20-40% chance I could die from complications from the procedure. But there’s a 1 in 3 chance that this procedure could cure the cancer. Unlike my first stem cell transplant (called an autograft), where the chemo was expected to do all the work, in this procedure, the hope for a cure rests on the stem cells themselves, which are hoped to fight the lymphoma. The downside is that the stem cells also fight a lot of my good cells, which leaves me at danger of graft vs host disease, which can be deadly.

As I said to my doctor on the day, all three options are “pretty crappy”. But option 3 is really all I’ve got left. I’ve seriously had enough of hospitals, and I’ve had enough of feeling sick, but I can’t give up yet. Maybe if I was 80 years old and had lived my life, I would consider option 1, but while there is still a chance, no matter how slim, that we can cure this, I have to take it. The odds are stacked against me more than they have ever been, but in a way I am lucky I still have any options left.

 There has been some discussion about me getting radiotherapy before the allograft. The danger of this would be that the radiation could do damage to my organs such as my heart and lung, and if it did, I might not be able to go through with an allograft if the cancer returns. However, if I go through the allograft first, I can still get radiotherapy if some cancer remains. It’s a tough call - do I take the reasonably painless, less effective procedure over the much, much riskier, more effective procedure at risk of losing my one window for the biggest chance of a cure I’ve got? The doctors have told me they’d be surprised if the radiotherapy was curative, but it would shrink the cancer and buy me time before the allograft.

Nothing is really going to happen for the next few weeks. I will get another PET scan in four weeks to determine what the spots are doing, and if the doctors need to act fast, or if they can buy more time while my body gets stronger. The longer my body has to get strong, the less risky the allograft will be. However, the more cancer there is, the less effective the allograft becomes. So it is just another excruciating waiting game. For now, all I can do is set about doing all those things I want to do with my time, like fly to WA, for example. I’ve never been there before, and I have a wonderful cousin to visit over there, so the time could never be more right. Last weekend I flew to NSW, and enjoyed a weekend in the Hunter Valley with some of my oldest friends - it was the best thing I could have done.  I don’t want to waste time worrying about things that are out of my control - although I wouldn’t be human if it didn’t affect me somewhat. My favourite saying at the moment is “I could be dead tomorrow” - which is really true for all of us. I’m going to laugh, love, share, travel, spend and just enjoy those simple pleasures that we always take for granted.  Spending quality time with quality people is what it’s all about right now. 

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.

So it's back to business ...

So I’m back at Peter Mac, and in some ways, it’s like I never left. The scent of the antiseptic hand soap smacks of familiarity, the food is just as dismally unappetising as ever and as if things have gone full circle, I have ended up in the bed (good old 10C, my old friend) in which I began my Peter Mac journey. But while some things don’t seem to change around here, things are still definitely different this time around.

This time I’ve come fresh off a month-long breather. And what have I done with my four weeks off? Oh, not much really … just three awesome road trips (one interstate), a music festival, a wedding, several reunions with old, amazing friends, making new friends, some bad TV - Geordie Shore (don’t judge me), a three-night hotel stay in my own city and a lot of laughing, dancing and much more.

The holiday was slowly savoured from start to finish, like a big meal after a period of fasting. The first bite was a Golden Plains for the ages (see last post) and last but not least, the treat at the end was the equally epic event of Tim and Ange’s wedding (I could say wedding of the year, but that would be unfair on the other two I have attended this year). Packed between these two cataclysmic events, were three road trips: Bendigo, Merimbula and Mornington Peninsula; some visits to some old Melbourne haunts, reunions with many old friends (uni and high school), and a three-night stay in a hotel stay at Albert Park, which was filled with more tuba players than you could poke a conductor’s wand at (every brass player in Australia seemed to be at that hotel – band convention?).

The highlights: Bendigo to visit Sam, which was lots of fun; even the part where Jacqui and I got hit with a tirade of verbal abuse from a carful of ‘bush pigs’ who alluded in less than subtle terms to our presumed preference for the same sex (not true, by the way, boys). We drove loops around Bendigo, raiding the town’s gold mine of vintage and op shops, enjoyed ambient beer gardens at historic hotels, made people watching an Olympic sport at the only bar we could get let into and just enjoying the old-style change of scenery and good company.

Bendigo beer gardens

After Bendigo, I had to go to Peter Mac to get some tests done (pre-transplant  checks including kidney function, dental health, bloods) and get briefed in some more detail by my nursing co-ordinator Trish on what the stem cell transplant would entail. One of the tests required a 24-hour urine collection, which unfortunately meant on my final day in Bendigo, I had to collect all my pee into  the one bottle. This bottle had to come with me to Melbourne, and as I was carrying it as stealthily as I could to the car, Jacqui eyed off my plastic bag and asked, “Is that juice?” Her query was met with disbelief as I had just warned her the day before that my bodily fluids would be accompanying us on the trip home. Luckily the bottle stayed firmly between my feet and there were no embarrassing mishaps. But it was rather funny really.

Coming back to Merimbula was like reuniting with a former lover, minus the awkwardness. And so luckily for us, this reunion was full of sunshine and good times. My sister, her friend Ash and I hit the road, stopping at Lakes Entrance on the way for some fish and chips and unexpected seal spotting. We spent the weekend at the leafy retreat of my aunt and uncle’s Nethercote property, enjoying nibblies on their veranda, guitar sing-alongs, fresh air, games, wonderful home-cooked meals (Caz and Brian can cook!) and jokes. We shopped at Candelo market, buying all sorts of nick nacks and treasures including some ‘so bad that they’re good’ records (including Mrs Mills Non-Stop Honky-Tonk Party –straight to the pool room).

$1.50 - bargain

In Merimbula town, I spent two nights with some of my favourite people, Jasmine and Kelvin and their four gorgeous children who filled my days with laughter. Their children were so full of energy but in such a great way. I am going to sound clucky as hell by saying this, but children are such special people and we can learn so much from them. It was also wonderful to see their little girl Pearl doing so unbelievably well after her own battle with leukemia. Life after cancer isn’t easy either; outsiders tend to overlook the monthly ritual of check-ups, the niggling anxiety that the cancer will return, the inability to use the word ‘cured’, because being cured and being in remission are two different things. But Pearl and her family are doing so well; I hope they all realise how inspiring they all are to me, and how much I enjoyed spending time with them again.

I also got to visit some of my favourite beaches (I may be biased, but to me they are some of the most beautiful beaches in Australia, and the world, particularly because of their ‘untouched’ nature) and even had a couple of swims. The gods were smiling.

I also went to visit my former boss, Liz, who I found out had been trying to contact me by phone since she had heard the news. I surprised her at the office, and when she saw me, her face was filled with enough joy to bring tears to the eyes. She stood up, gave me a hug, and held my hands for a long time. Liz was like a mother to me during my years living in Merimbula, and I knew it meant a lot to her to see me, and to see me doing so well.

Stopover at Lakes on the way home

Another special thing about this time off and well, the time since I have arrived back in Australia, is the reunions I have had with old friends – from university and high school. Highlights include sitting on the veranda with Suzanne and her daughter Lavinia, sipping vegetable soup while watching the rain fall over her Yinnar property (once again opening my eyes to the beauty of my own local area), J-Plo, Fleur and I reverting to our former uni selves terrorising Melbourne, sharing endless laughs with old high school friend Andrew, lunch with Nicole which stretched on for hours because we did more talking than ordering, and all the others I have bumped into along the way – people I have had little to do with over the last 8-10 years, but have wished me all the best. The kindness of all these people I know, after all these years, is truly touching. I hope that I can do the same for others one day, because I now know how special these seemingly small tokens of kindness can be.

On Easter Saturday a group of us did a day trip to Tyabb, where we indulged in some more vintage and op-shopping, a stroll along the beach (where a friend almost got caught in quicksand - quite dramatic), a half-arsed bush walk, oysters and wine at Arthurs Seat overlooking the twinkling lights Peninsula. A drive back through Mornington, then pizza at the hotel in Melbourne. Another fantastic day.

Luckily just before going back into hospital I got to attend Tim and Ange’s wedding, which was so much fun I think I was piling into a cab at 4am. I think the best thing is that Ange and Tim are such wonderful people who are nuts about each other. So glad I got to spend this special day with them. I still have sparkles in my wig from the reception … part of me doesn’t want to brush them out. :)

Another awesome wedding ...

Finally I got that little taste, that wonderful window of what my life used to be. I had strength, freedom, no responsibility and an amazing country to explore and amazing people to visit.

For a while there I was enjoying myself so much that I didn’t want my break to end. With my strength returning in full force, and along with it my hair, eyelashes and eyebrows, it was hard to even believe that another hospital stay loomed ominously in the not too distant future, and “the big one” – the stem cell transplant. I didn’t want to think about it, and I didn’t. I totally lived in the now and loved every minute of it. But as admission day grew closer, I began to grow anxious in a different way: anxious to get it over and done with. I’m as physically and psychologically ready for this as I will ever be. Bring it on; let me hit the final and most excruciating lap of my journey, to collapse at the end, giddy and woozy with victory.

I think the last four weeks will be etched in my memory. When you have cancer, every emotion is amplified; time seems to go slowly; the highs are memorably high. You don’t take anything for granted anymore. Even a simple pleasure such as sitting out in the sunshine and enjoying a meal with some friends is seen as a privilege, not a given, because there were so many times you were too sick to do so. You learn to value things so much more, and I think this quality will be with me for life. I heard footballer Jimmy Stynes (R.I.P) in his documentary talk about how having cancer made you realise what the important things in life were, which to him, was his family. As a result, Jimmy grew closer than he could have imagined to his wife and children, and he was able to showed them exactly how much he loved them. I am a strong believer that everything happens for a reason, and even though I am deeply saddened that we lost someone like Jimmy, I have no doubt he was able to fill those two-and-a-half years from his diagnosis to his death with so much love, a quantity that many would not realise in a much longer life.

Having been in hospital a week now, I am starting to feel the weight of what I am about to face. But I have to put my head down, get this done, and get to my final goal: a cure. Bring on the victory lap.

PET scan #3: third time lucky!

When I was given the news my PET scan came back completely clear, the heavens didn’t open to the chorus of ‘Hallelujah’, there were no tears, there was no jumping up and kissing/hugging the doctor ... it was nowhere near as dramatic as that. The news was merely met with a feeling of absolute joy and relief, but at the same time underpinned by an understanding that the journey is far from over.

The days leading up to the scan were filled with nervous tension. I hadn’t been sleeping very well.  All sorts of thoughts were running through my head. My second round of Hyper-CVAD had almost been a walk in the park compared to my first, and the lack of symptoms made me suspicious … was the chemo working? There was no way of knowing. And with the memory of my last two PET scans - which did not wield uplifting results - etched in my mind, as much as I tried to remain positive, that little black slug called doubt would occasionally creep in. Hyper-CVAD works for 4 out of 5 people, but every now and then I couldn’t help but wonder – would I be part of that doomed 10%? It was a possibility and one I had to be prepared for.

Finally the day of the PET scan arrived. While I come from a religious background, I don’t consider myself a particularly spiritual person nowadays. But when I pulled on my hospital gown, lay down on the white bed and was passed through the PET scanner for the third time, I prayed. Boy, did I pray. I prayed more than I’ve prayed in my whole life, to whoever was listening. It’s hard to explain what was going through my head at that time. As hard as I was wishing for positive results, there was also a peaceful feeling; an acceptance of my own fate.

However, the results of the PET scan wouldn’t be up for discussion until Friday, two days later, so I was just going to have to distract myself until then. So of course, I indulged in some good old-fashioned retail therapy in Brunswick Street. While I was shopping my phone rang, and it was Trish, the nursing co-ordinator from Peter Mac. “I just wanted to let you know that your PET scan was fantastic,” she said. “We’ll discuss it more on Friday, but it looks great. Everything is falling into place.” I was really grateful she called to tell me, as it really did take a load off my mind for the next day or so, even though I didn’t know the full details.

By the time Friday morning came around, my whole family was in Melbourne. My brother had travelled down from Bendigo, Dad and my little sister Megan (who had taken Friday off) had travelled up from Gippsland and my mum and my older sister Jacqui had already been in Melbourne. My appointment with the oncologist was bright and early at 8.45, and when I was called into the doctor’s office, I was accompanied by an entourage (Dad, Mum and Sam).

Being told my PET scan had come up completely clear was exhilarating. It was exactly what I needed to hear. But it’s important to put the result into perspective. Having a clear PET scan result does not necessarily mean I am free of cancer. The tracer used in the scan only detects cancer that exceeds 5mm. Therefore it was more likely, in my case in which the cancer had been very aggressive, that there was still cancer present, it was just simply too small for the scan to pick up. In any case, the cancer had been reduced enough that it was safe to go ahead with the stem cell transplant. It also meant that I would not need a third round of Hyper-CVAD, which meant I would not be admitted to hospital again any time soon. This was an immense relief to me; things were finally falling into place.

My very first PET scan, taken in November 2011. The big black splotch in my chest is a tumour. The black dots in my midriff area are secondary tumours. These are all gone now.

The first massive hurdle has been cleared, but there’s more to come. In four weeks I will begin what will probably be the hardest part of the whole process – the high-dose chemotherapy followed by the stem cell transplant. This will be carried out over three weeks. For the first week, I will be administered with a monster hit of chemo (we’re talking 15 times the amount I’ve had before), made up of three different drugs. These drugs are so potent that they will destroy my bone marrow, which will lose its ability to make stem cells, which produce the body's blood. About 48 hours after the round of chemo finishes, my stem cells (of which I have “gazoodles”, to use the technical term coined by the oncologist) will be thawed and given back to me via a drip. Over the following two weeks I will remain in hospital as I endure the side effects of the chemo. I will need blood transfusions, I will most likely need a feeding tube, I will have restricted visitors (immediate family only) and when I am finally eating and drinking properly again, I will be discharged. From here, the recovery – the process of building my strength and regaining blood cell production – will be long, and is likely to take months.

But even after all that, there is a 50% chance my lymphoma will come back, and if it comes back, it is incurable. So the oncologist has recommended that six weeks following the transplant, as long as it is safe to do so, I should undergo radiation to the chest area, which will help reduce the chance of a relapse by another 20-30%. Radiation also comes with a raft of risks and inconveniences, but these are pretty small in the scheme of things.

It was a lot to take in, but the main thing to come out of last week’s appointment and the one I haven’t stopped thinking about is the fact that my scan was clear. And when you look at what we were dealing with (the tumour in my chest was 14.5 by 9.5 centimetres), it is nothing short of a miracle that all that cancer is as good as gone.

The next decision was a big one: now that my long weekend was gloriously free, do I or don’t I hunt down a ticket to my favourite music festival, Golden Plains? Before I got sick, it had always been my plan to return home in March to attend this festival, so I could catch up with friends, enjoy some great music and get a little bit of the Australian summer before launching into the dreaded double winter.

The decision was made at 10am Saturday: we’d tracked down a ticket, I’d handed over the money, and I was going, in spite of how tired I was feeling. And after two days of beautiful sunshine, amazing music and excellent company, it was a decision I did not end up regretting. It’s nice to know that even after five rounds of intense chemotherapy, I am still able to dance myself into a stupour until 4am. It’s also nice to know that doing a festival sober isn’t too bad (although I did indulge in more than one Pink Flamingo, it has to be said, in keeping with tradition, of course). The tiredness, hoarse voice and achey feet were all merely symptoms of a good weekend and totally worth it. For the first time in ages I got to feel like my old self again, relishing my independence and feeling carefree, without doctors and nurses fussing over me.

OhAunty Meredith, how I have missed you ...

I got a single night’s sleep in my own bed before I was off to Melbourne again, to undergo surgery at the Royal Women’s Hospital to get some of my ovarian tissue removed for freezing (as the chemotherapy I will receive in four weeks is very likely to do permanent damage to my ovaries). After all the chemotherapy is over, the ovarian tissue can be implanted and alongside hormone treatments, will hopefully kick the ovary back into production. However, the procedure is very experimental and very few births have resulted from this process, so there are no guarantees, but there rarely is in this game. It was laparoscopic surgery (done via an incision in the belly button) with no complications; pretty tame compared to everything else I've been through, really.

After surgery I got my PICC line removed. It wasn’t going to be needed and as it can be a common site for infection, the doctor decided it could come out. I was relieved to see it go. Its removal to me was symbolic of the first chapter of my treatment being over. 

So right now I get a four-week breather ­– free of hospital visits, medications, check-ups and tests. It is four weeks in which I am expected to look after myself, build up my strength, remain active and get myself in the best possible shape for the transplant. I’m going to enjoy this time. The first hurdle has been well and truly cleared and I see the next four weeks as a little window of opportunity: to visit all those people I haven’t had a chance to. I'm going to travel a bit and just relax and have fun. I feel like I can look to the future with a lot of optimism now and it feels great. I might not be free of treatment just yet, but I'm free of uncertainty, and that's the best thing that's happened to me to date. 

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.

A change of tack

In spite of the crappy circumstances, there have been some blessings about coming home. I felt I left London too early, but so many moments since my homecoming have left me thinking ‘God I’m glad to be home’.

And the number one reason is family. These are people that you can’t replace, no matter how far across the world you travel. Coming home meant I got to spend a week in Wollongong in a (peach-coloured) houseful of crazy Dortmanses in the lead-up to my cousin Jamie’s wedding. I honestly felt that week and the wedding was something I will remember for a lifetime.

So this wonderful week of reverting to adolescence, waking up to the beach every morning, playing boisterously loud board/card games, rolling around in laughter during charades, having a girls’ day out in Sydney, watching the crazy Dortmans crew leap out of a plane during an impromptu skydiving mission, regular and inappropriate use of the term ‘Code Brown!’ and ridiculous sunburn culminated in the event of the century, Jamie and Ana’s wedding. I teared up a few times, as did the groom ‘I had something in my eye’ Jamie and many others.

Back home, it was straight back to reality as I was again thrown into the well-trodden routine of doctor’s appointments, blood tests and X-rays, closely followed by my third cycle of chemotherapy. The following weekend, I had the honour of attending another wedding, this time to celebrate the marriage of my friend Brooke to her beau Jason. Great day, one that left me feeling similarly warm-hearted and loved up.

At this wedding I happened to meet an inspirational lady named Jan. She came and sat beside me and told me that we had something in common. Neither of us had realized it at the time, but during the chapel ceremony, I had sat right beside her, the only other person in the whole room with a wig on. Jan had breast cancer and was currently undergoing chemotherapy, however, she had been told there was nothing more that the doctors could do, and the cancer would eventually get her. My heart went out to her, but she was handling it like a trooper, living in the moment, saying and doing what she wanted. She grabbed my hand and told me I would live a long and healthy life, she could feel it. “My children say I have a sixth sense about these things,” she said. Jan knew she was closing in on the final chapter of her life but she was full of zest and positive energy.

Don't you love weddings?

My third cycle, compared to the previous two, was a walk in the park. It was almost too easy. I spent a week in Melbourne, seeing it through a whole new set of eyes, feeling like a tourist all over again. Catching a tram was an exciting adventure; catching a glimpse of the MCG on my way in filled me with nostalgia, wheeling my bag through a now-complete Southern Cross Station, visiting pubs and seeing faces I hadn’t seen for two years, spending a sun-filled day at the Aussie Open followed by dumplings at Chinatown and a lemonade in a leafy beer garden, feeling like I had stepped back in time at Labour in Vain on Brunswick Street, attending a backyard barbecue and visiting Edinburgh Gardens for Aussie Day ... but this was the calm before the storm.

Until that day: Wednesday, the day of my PET scan, which would establish exactly how much cancer still remained in my body. I think I was a bit nervous about this; I hadn’t slept properly for the two nights prior but I think this was more to do with the extreme heat of the Melbourne nights and the many sugary, caffeine-laced drinks I had consumed ­– though there could’ve been more going on subconsciously than I thought. Mum, my right-hand woman, drove up from Gippsland to take me to Peter Mac in East Melbourne, where the scan would be taking place.

The last PET scan I had received had been in London, before my diagnosis. I remember that day vividly; it was a real reality check for me, and it was the first day I actually felt the full burden of what I had to achieve. I had seen a scan of my body, and I had seen cancer splashed all over it. Well PET scan No. 2, now taken at the ‘halfway’ mark, after three cycles of chemotherapy, was a similar deal. My optimistic and somewhat complacent view was dashed a little that day, as again I was confronted with the formidable task I was facing.

The process of the PET scan was pretty much the same; I lay on the bed, they injected me with radioactive ‘tracer’, left me for an hour, then I lay down on the bed and was passed through the giant whirring donut. After that I really only had time for a coffee before heading off to the clinic to see the oncologist, a professor who had been following my case closely even before I left London. He had also been advising my oncologist in Gippsland. I was looking forward to meeting him.

The doctor was a gentle, tall and thin man who we soon discovered had a magical way of explaining things clearly and patiently. Mum and I instantly liked him. He sat us down and after getting the mundane details out of the way like my medical history, diagnosis, chemo symptoms and the like, he pulled up a seat in front of us and addressed us very clearly. I could tell almost before he opened his mouth that this was not going to be the best news.

He explained that at this stage of treatment, if my current chemotherapy (R-CHOP) was to achieve a cure, then the PET scan would be clear of all cancer cells. If the PET scan was clear, there was an 80% chance of reaching a cure after the full treatment. If there was still lymphoma showing up on the scan, the chances of a cure decreased to 20%. I fell into the latter category. By comparing both scans on screen, we could see that what had once been a giant, blazing red lump stretching across my chest (the red on the PET scan showing the ‘most active’ cancer cells) was now a much smaller green (green = less active) blob. (Basically, it had gone from the size of a bowling ball to a cricket ball). The chemotherapy had made a significant reduction, but it wasn’t enough.

The oncologist explained to me that if I continued on the current R-CHOP regime, it was very likely that the cancer would grow, and eventually lead to my death, possibly as soon as 12 months. A doctor had never been this direct with me before and I felt like I was stuck in a slow-motion nightmare. After saying this, he paused. I tried to remember to breathe.

 “Are there any other options?” I squeaked.

“Yes there are,” he replied with confidence. He warned me however, that they weren’t going to be easy, but they were going to give me the highest chance of a cure.

The next plan of attack was to move onto a much more intensive chemotherapy called the ‘B cycle’ (Hyper CVAD). Under this regime, all of the symptoms of my current chemo would be increased by 30%, and would also make my white blood cells decrease for longer periods, leaving me at higher risk of infection. After two B Cycles, which go for roughly three weeks each time, I would get another PET scan, and there was a 90% chance that would come up clear. However, the chemotherapy would devastate my body to the point that it would destroy my body’s ability to produce stem cells, which produce the body’s blood. Therefore at the end of treatment, I would get a stem cell transplant.

The stem cell transplant is going to be difficult; it’s a reasonably new, high-risk procedure and the recovery is long (up to a year). They will use my own stem cells, which they will be collecting this week (via a machine that takes my blood, extracts the stem cells, then returns the rest of the blood to my body). These stem cells will then be stored until the end of my chemotherapy treatment, when they will put them back into my body again. For three weeks following the transplant, I will be in hospital, mostly in isolation, while the stem cells grow and develop. It will take 3-6 months until I can lead any kind of semi-normal existence again, and up to a year until I feel 95-100% (though I may never feel 100% again).  

You can imagine how hard this news hit us. I guess for me, it was another massive reality check: this thing is big. When they found it, it was all over my body, around my heart, lungs, stomach, liver, everywhere. And right now we are embroiled in a race: it’s the chemotherapy drugs vs the lymphoma, and the cancer has made it clear that it’s not going to budge easily. This lymphoma might be stubborn, but so am I.

Eyedrops given to me while in hospital - couldn't be more aptly named!

Two days after my scan, I was admitted to Peter Mac (who will be overseeing my treatment from now on), for my first dose of Hyper CVAD. As many of the drugs need to administered over 24 hours, or at strict times, it is not logistically possible for me to receive the chemo as an outpatient, so I am required to spend the first 4 days of chemo in hospital. This is never fun, but it was made slightly more bearable by the fantastic medical and support team there; I feel like I am in safe hands at Peter Mac. Furthermore, it has also driven home the fact that I’m not alone, as I was surrounded by patients going through similar things.

My drip monitor, affectionately known as 'Big Bertha' which I was hooked up to for four days ... was glad to let her go

I’m now a week into chemo and tomorrow I head back to Peter Mac where they will carry out my stem cell collection. This chemo has already proven a lot harder than anything I have previously encountered. A couple of days ago I had constant ringing in my ears, neck and back pain, burning throat, chills, sweats, heavy arms; I couldn’t even get myself out of bed or eat anything. I felt like the drugs were completely consuming my body; that I was fading away underneath them. I feel frustrated that I have no energy and sometimes even simple tasks seem beyond me. But it’s something I have to deal with and I always have to keep the ‘bigger picture’ in my sights. While recent events have brought me back to earth with a resounding thud, the prognosis remains clear: we are working towards a cure. The outlook is as positive as it was, it just means it's going to be a harder road to get there.