When the world tells you to give up ... hope whispers, 'Try one more time'

If there were ever an argument against planning, this would be it.  A couple of weeks ago, I figured because I had a bit of time off scheduled before my allograft, that I would book a trip for Matt (visiting from London) and I to Cairns. We would swap the dreary Melbourne chill for tropical weather, sandy white beaches, resorts with swim-up bars, a glass-walled treehouse amongst the Daintree Rainforest and a jaunt to the Great Barrier Reef. It was going to be amazing, and I was looking forward to it more than anything in the world.

Until my PET scan results came back.

When I walked into the haematologist’s office five days ago, roughly two hours after my PET had been completed, he told me straight up: “Your PET: it’s not good.” My heart sunk. He went on to explain that there had been “substantial growth” of the cancer spot that had showed up six weeks ago on my scan - substantial enough to warrant a major change in plans. In six weeks, the lymphoma cells had decided to go crazy and go on a free-for-all spree across my body and as a result I have a growth in my chest, several deposits in my abdomen and another in my arm. This was not what I, or the doctors expected, and all I could do is stare at that scan, breaking out in a cold sweat, wondering, why, just why won’t this thing go away and let me get on with my life?

For an allograft to be effective, there has to be minimal cancer present. If there is too much lymphoma, it simply won’t work. Unfortunately my lymphoma had reached the limit of “too much”. So the doctor told me we would be switching to Plan B … or is it Plan C, D, E or Z? I’ve lost track now.

Which is why I now find myself back in Ward 2 at Peter Mac, hooked up to a drip, while I get more chemotherapy in a bid to shrink my cancer down to a manageable size so we can still go ahead with the allograft. Instead of diving into the deep blue seas of North Queensland, I leapt straight back into that murky teal green colour of a hospital bed.

The chemotherapy is called Hyper-CVAD. I had two rounds of this chemo before my auto stem cell transplant – it was pretty nasty stuff that made my eyelashes and eyebrows fall out but it also put me into remission. It’s really the only thing that’s shown any considerable clout in the fight against my lymphoma, so I’m hoping it’s still at its fighting best this time around. I need it to be.

In early August, I will get another PET. If the cancer is small enough, we will go ahead as planned with the allograft on August 27. If the cancer isn’t, I will undergo another round of Hyper-CVAD, then go into the transplant.

Neither situation is ideal, as it places me at high risk of toxicity. The toxicity levels in my body could lead to deadly implications during the allograft. Having the aurograft and allograft in such close proximity was always a danger, but throwing the extra chemotherapy into the mix has shaken things up a notch. In a word, I am terrified.

The doctors have made it very clear they are still working towards a cure, and I am still as hopeful as ever. I have dreams of reaching the end of this nightmare, my body, broken and battered, shaky on its feet, but filled with pure elation because I went to hell and back and made it. But I also have to be realistic. There is a very real chance that I could lose this race. And if it wasn’t my life in the balance then let’s face it, I would have given up ages ago.

So needless to say, I had to cancel that trip to Cairns. Kindly, the accommodation providers I booked with in Cairns gave me a full refund with no charge when they heard my story, but I guess it must’ve been hard for Colin from Beach Hideaway Cabins (complete with friendly ocker Queensland accent) to take the $170 from me after I’d just blubbered into the phone that I wouldn’t be making it because I had chemotherapy. Unfortunately the people at Tiger Airways haven’t managed to show me the same compassion yet though, it’s a sad world we live in sometimes.

Anyway, if anything, this experience has given me a chance to be reunited with some old friends. The PICC line is back in my arm, I’ve been peeing in a pan for days, Big Bertha (my IV drip monitor) is by my side again, a big bag of chemotherapy is slung high on the drip, inside its ominous-looking sun-protecting black bag and of course, there's the wonderful nurses here at Peter Mac who all know me by name (either looking at me as if my puppy just died or wisecracking, “I thought I told you we didn’t want to see you here again.”) I’ve also welcomed an unrelenting river of loud, wonderful, colourful visitors (some of them drunk, admittedly) to Peter Mac and the gloves, gown and orange ‘duckbill’ mask guests must don before they come into my ward (due to a flu outbreak) have provided many laughs and magical photo moments (see below).

The 'speck-duckular' respiratory masks at Peter Mac as modelled by the lovely Jacqui. 

I’m sorry that people have to read this; I really wish I had some good news to bring for once, I really do. But you hear of people defying the odds all the time, and maybe I’ll make it to the successful list - it’s not over yet. A man in ward 2 the other day told me “You’ll beat it,” with such certainty I almost whole-heartedly believed him. I’m 30 years old, I have (supposedly) one of the most treatable cancers that exist and my body is not going to go down without a fight. And as much as it hurts me to see my situation tear up those people that I love, I am also constantly reminded of how lucky I am to have them here in the first place. There is still fun to be had, my friends, and there is still hope. 

C'est la vie

So life continues on, as it has to. On Monday, June 9, I will get another PET scan, my fifth all together (so far the third one is the only one that has brought any good news). The results of this PET will play a big part in what the next step will be, but as it stands, I will be undergoing my allograft on July 27. That is, I will be receiving my sister’s stem cells that day, a day which they refer to as “day zero”, as it marks the beginning of my stem cell journey and enables my progress to be mapped from there (sigh, back to zero again). The procedure will take place at the Royal Melbourne Hospital, not Peter Mac, which in a way I am grateful for, because even though it’s still a hospital, at least it’s a change of scenery (although I haven’t sampled the food yet).

There’s a number of possible outcomes from the PET. That the cancer has barely grown or grown a little bit, that it has grown significantly, or that it has shrunk. The last two outcomes are very unlikely, so the doctors are assuming that it will only have grown a bit, if at all. If this is the case, then the transplant will go ahead as planned in late July. I’m now approaching three months since my autograft, which is the minimum amount of time my body needs (to recover from the first transplant) before it can go into the allograft.

It is the plan that my allograft will be followed by some radiotherapy. The possibility of having radiotherapy before the transplant has been ruled out. This is because the radiotherapy dose would have to be reduced in order to protect my organs going into the transplant, and if it is reduced, it will make little impact. So pointless, really.

I’m dealing with my situation a lot better than when I first found out about the relapse, although I do find myself tearing up unexpectedly on odd occasions. When I first found out I was so shocked and saddened I didn’t know how I was going to cope. But as I said before, life has to go on, and it has, and I’ve been enjoying it. If I was watching someone else go through what I am going through, I would probably wonder how they have not collapsed in a heap. But it's totally different when it happens to you. If anything, it makes living more important.

And of course, there are other things going on in my life that are completely non-cancer-related that are also worth reporting. I’ve had several weeks away from the hospital now, and I took the break as a good opportunity to do what I love best: travel. So I went and visited the one state in Australia I had never been to: Western Australia. It was an epic, week-long tour of South-Western Australia, and I can now say I am in love and would happily move there for a year or two. I have never felt so relaxed in a capital city as I did in Perth, and I do like the idea of being isolated for a little while. Melbourne has always been my favourite, but having all my treatment here has taken away the rose-coloured glasses, for now.

Road tripping in WA

Cairns is the next on the list: I have booked a trip there for me and the amazing Matt who is flying all the way from the UK. I am beyond excited about this trip and the weeks ahead; it is so nice to have something to look forward to, rather than dread. At the moment I feel pretty good; my energy levels aren’t what they used to be and any form of exercise more strenuous than walking will have my legs dragging and limbs aching for days, but seven days relaxing by the beach or pool, snorkelling, and staying overnight amongst the Daintree Rainforest treetops doesn’t sound too strenuous to me.

So while I'm doing things I've never done before (or never really planned to do, let's be honest), I can also tick 'Climbing a 75-metre Death Tree' off my bucket list (though quietly, I think it was taller than that. Maybe it's grown since they wrote that sign). While I was in WA, I climbed the Bicentennial Tree near Pemberton in the south-west. The ladder I climbed was made up of thick steel rods, spiraling up the tree to a platform at the very top (yes, with absolutely no safety net or harness whatsoever), which places you at the top of the forest, with the bushy canopy below you stretching for miles. It was raining when I did this, meaning the rods were slippery and it was very precarious. I also realized how deconditioned I was, as I started to grow very tired and was well out of breath by the time I reached the top. But getting to the top was less than half the battle; getting down proved much more terrifying. Every step down I was confronted with the dizzying heights I had reached and that a simple slip could be costly. But even though my hands were ice blocks and my legs were like jelly, that feeling of my feet hitting the ground was superb. I felt invincible.

"The Death Tree"

So now I have another slippery and dangerous climb ahead of me - the allograft. There’s the risk that I could die from climbing it, but the risk of not climbing it is far greater. Anything could happen along the way, but just like The Death Tree, I just have to focus on one rung at a time. My aim is to climb to the top, and make it to the bottom, and once again feel that invincible feeling, but on a whole new level. It’s a bit of a cheesy metaphor really, but there is no better feeling than confronting and conquering a fear. 
So next week I’m going to spend some time in the sunshine of Northern Queensland. I am also going to celebrate my 30^th birthday on my return, which actually happened two months ago but I wasn’t in the best shape back then. It will be an opportunity to spend time with friends and family who I have found it so hard to find time for amid the chaos of appointments and tests and travels. I certainly have had some pretty rotten luck recently, but it’s nice to know that not everything is doom and gloom. I’m just hoping and praying that Lady Luck comes to my aid right when I need her the most.

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.