Words escape me.

It's been a tough week. As some of you would know, I had a PET scan last Thursday. I didn't get a call from my doctor about the results until 6.30pm the following Friday. In the meantime, I was tied up in knots; I felt an anxiety even greater than I had ever experienced for any of my previous PET scans (all 12 of them). With good reason, it turns out. 

I knew on Friday that my results weren't good. But I didn't get to discuss this in more detail with my doctor until the following Monday. This consultation was difficult. It was the first time, in my whole 17-month journey, that I was told the doctors did not believe that any treatment options for me were going to be curative. 

At the moment my only hope (and I’m talking the smallest sliver of hope here) is a clinical trial possibly followed up by some radiotherapy. But my doctor doesn’t even sound confident about that, and he said he doesn’t want to instil me with any false hope about what I am facing here. And that’s not at danger of happening, I think that tank is running pretty low now.

In a nutshell: the good news (yes, there is some good news, hidden among this steaming, shitty pile of bad news) is that the radiotherapy worked. I have no lymphoma in my chest. No lymphoma in my arm. And the doctor says it probably won’t come back.

The bad news (and this is MAJORLY bad news) is that while I was busy getting radiotherapy in my chest, the cancer was growing elsewhere, and it wasn't holding back. As a result I have about five or six tumours across my abdomen, and a couple of them are very big, and very active, and pressing against some very important organs. One is spread below my breastbone, just outside the radiation field in my chest. One is pressing against my bowel. Then there are others dotted across my lower body. The lymphoma is still alive and kicking, unfortunately. The sub-editor in me wants to name this "Lympossible", because as my doctor has said, this cancer is proving impossible to eradicate. 

So the options are running thin. Radiotherapy at the moment is not an option. The tumours are too big, and the areas too sensitive for them to use “eradicative” radiotherapy (radiotherapy strong enough to completely get rid of the tumours). Boosting my new immune system with Interferon is also not going to work. Once again the tumours are too big, and they’re not confident my immune system wants to do anything anyway, it just isn’t showing any signs of fighting. Standard chemotherapy isn’t a good option either – the doc says this could make me very unwell, land me into hospital for an extended period of time and it might not do any good. He doesn’t deem that a good use of my time, when I am basically feeling well right now. 

So my doctor has recommended that I go on a clinical trial. There is a trial I am eligible for, but my platelets must be at an appropriate level before I can proceed. Last week my platelets were low but increasing, and on Monday I will get another test to confirm whether they have reached a suitable level. I will probably also need a biopsy (a simple day procedure) and perhaps a few other logistical things will need to be sorted out. At the moment I know very little about what the trial will involve. I have no idea how intensive it will be. I don't know if it will work and I am certainly not relying on it, because this is no tame lymphoma we are dealing with, this is a monster. To absolutely wipe out every single tiny little cancer cell is going to prove a monumental task and I don't know if it's going to happen. 

So, psychologically, where am I at? I’m upset, obviously. It is not easy being told at 30 years old that I have a cancer that is basically impossible to treat. That I am basically at the end of the line here. But you've got to remember that I have been facing this for a long time now. Last year I was in a very similar situation, where my doctors did not believe I would even make it to my second stem cell transplant. I made it, against the odds, but now a bit less than a year later, I find myself back in the same situation, facing the full brunt of my mortality once again. I don't know how many get-out-of-jail cards I have, but I do keep in mind that anything is possible. I have thought about death, I have thought about this crazy cycle of life, the ways of the universe and what little control we have over this ... once upon a time the thought of being told by an oncologist that there is "nothing more we can do" was incomprehensible, but now I am in that situation and sometimes it feels surreal. But at the end of the day I'm not that surprised, just sad.

I have remained optimistic all the way throughout my journey, but I am also a realist. I've seen the scans, I've talked to doctors, I've been reached the darkest depths and most resounding highs throughout my journey and I have no delusions about what I am facing here. The journey ahead of me now feels comparable to crawling into a boxing ring to face Mike Tyson or Anthony Mundine, fists raised, with absolutely no boxing experience behind me whatsoever. If something works out for me from now on, then lucky me. But I also think it is important for me to accept that there is a strong probability that things won't work out.

However, please do not think I’m going to turn into some depressed, sad, shell of a person over this. Over the past week I have felt I have had some "grieving" time to deal with the fact that my life could be over at 30. But I will be throwing everything into taking my mind off dying, and into living. I still have many things I want to achieve this year and I will be doing them. This morning I had a meeting at The Cancer Council to discuss working there as a volunteer media assistant two to three days a week. At the moment I feel like I need a distraction and a routine; something to occupy to mind as I go through this difficult period and it's something I really want to do. Last week I went into Royal Melbourne and spent some more time in the recording studio, to work some more on my song that might be featuring in a CD compilation. I have dreams of going to America this year and whatever happens, I will make it there. I have also been looking into other therapies, here and overseas, which I will be discussing with my doctors when I get a chance. I remain open-minded, within reason of course.

Me and the sound engineer in Royal Melbourne's recording studio

And let's not forget the wonderful things that have happened over the last few weeks – an amazing family reunion to celebrate 60 years in Australia (you’ve probably heard it here before, I have the most amazing family in the world) last weekend, a trip to a friend's leafy retreat in the Dandenongs where I enjoyed awesome company and some dancing in my underwear, a free gig to go see Peter Murray (who I also got to meet backstage), provided by the wonderful RMH music therapist Emma O’Brien and early next week I am going to feature in the Q&A audience which will be filmed out at Werribee - yes I am a complete political nerd and this excites me immensely (look out for me on ABC1, Monday night, 9.30pm). 

Me and my cousins (just a small sample)

Oh hai Pete Murray

So for now I am killing time until I get approval to go ahead with the trial. They have put me back on a hefty dose of steroids in a bid to keep the tumours in check. So I am once again just trucking on in the only way I know how. Fortunately for me the cancer is not causing any real symptoms at the moment and I am feeling as well as I have been. I guess that's what also makes it hard to swallow: I feel and look well, better than I have in a long time, how can it be true that I am facing the real possibility of a death sentence? All I can keep focusing on is that I do feel well and will continue to make the most of that fact.

So, on a more positive note ...

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

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

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

You can read the lyrics here:

Time in the sun

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope: still present; Patience: wearing thin.

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

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

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

Hollow Mountain, you got nothing on me.

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

Watching the sunset on new year's eve

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

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

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

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

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

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

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

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

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

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

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

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

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

Allo, stem cell transplant #2 … I’m ready!

From diagnosis to now: what a journey, huh?

So, 10 days until my allogeneic stem cell transplant, and I am as ready as I’ll ever be.

Last week I had an appointment with my oncologist. He was beaming when he called me into his office, ecstatic about my PET results. "For a while there I wasn't sure if I would make it to the transplant," I said, and he replied, "That was a very real concern." The appointment was to discuss these PET results and the next step forward, which was the allogeneic stem cell transplant. This part of my journey would be handled by a team at the Royal Melbourne Hospital, so this would be my last appointment with my oncologist at Peter Mac, hopefully for a very long time, or forever, if the transplant goes well. Part of me was sad about this; as much as I have resented the trips to and fro from Melbourne, the lengthy hospital stays, the constant blood tests, follow-ups, phone calls, Peter Mac has become like a second home and the people in it like an extension of my family. It actually makes me tear up when I think about how, as horrible as my journey has been, there have still been many joyful moments amongst it all, thanks to the support of the staff and the people around me. Having spent time in many other hospitals, overseas and in Australia, I have to say that Peter Mac is really the only place where I haven’t felt like a number. With many of the staff I felt like I was their only patient, to the point that I felt surprise, and a touch of jealousy, when I saw them with other patients. The staff there just have this magical way of making you feel like that. 

I have spent most of this week at what will be my new second home, the Royal Melbourne Hospital. I was quite overwhelmed by how much bigger the place is compared to Peter Mac, to the point that you can feel a little bit small. But the staff are all lovely and I'm sure in no time I will develop a similar fondness for the staff at this hospital. I am still trying to navigate my way around its convoluted maze of corridors, but the place that I will be tied to for the next four months is the fifth floor, which houses the Bone Marrow Transplant and Haematology units. 

My week has been filled with a barrage of pre-transplant tests, to check that my organs are all in working order in the lead-up to the transplant. Over two days, I had a bone density scan, bone marrow biopsy, dental scan and exam, a million blood tests, respiratory tests and also met with a number of people such as social workers, dieticians etc. On the Friday (yesterday), I had a PET scan. Everything came back satisfactory as far as the transplant is concerned, so it will be going ahead on October 22 as planned.

So to give you some idea of exactly what I am in for from this date, here is the rundown:

I will be admitted to hospital on October 22. However, for the first five or six days of treatment, I will not be in the hospital, I will be receiving chemotherapy via 'Hospital in the Home' ('home' being a charity-run apartment 5 minutes from the hospital). On about Day 6 I will receive a more toxic chemotherapy and from then on the Bone Marrow Transplant Unit will be my home for the next three weeks, give or take. 

At the same time this is happening, my sister Megan will be getting daily injections of a drug called GCSF, which will stimulate blood cell production. As a result of this drug, Megan's body will produce an abundance of stem cells, which will spill into her bloodstream. On October 30, they will collect the stem cells from her bloodstream by hooking her up to a giant machine, much like the one I was introduced to at Peter Mac way back when I underwent my autologous stem cell transplant in April. It's pretty cool that Megan is doing this for me, but really, she gets the easy part. And I challenge her to match my 63 million stem cell count I managed earlier this year (though Royal Melbourne’s Bone Marrow Transplant co-ordinator did tell me about someone who managed a collection of 140 million stem cells, which made me feel less special).  

By giving me Megan's stem cells, they are effectively giving me a new immune system. My immune system was unable to get rid of the the cancer, so they are hoping that Megan's just might be able to do the trick and eliminate those tiny little cancer cells that are left. These stem cells are given to me via a drip, much like a blood transfusion. They will be given to me "fresh", that is they will be taken from Megan and given directly to me, they won't be frozen, stored or any of that jazz. 

When they give me Megan's stem cells, my immune system will be suppressed. Otherwise my immune system will start fighting hers, and won’t allow it to take over. Which is where the chemotherapy comes in - this will keep my immune system quiet so that Megan’s immune system comes in fighting, and effectively take over from mine.

After I am given the stem cells, I will spend three weeks in hospital, and that period probably won't be that much different to to the two and a half weeks I spent at Peter Mac for my autograft. The risks of something happening down the track, however, are much more pertinent. For three months I will have to visit the Royal Melbourne three times a week so they can closely monitor me and look out for two main things: graft vs host disease, and infections. 

Graft vs host disease occurs when Megan's immune system (the graft) recognizes the cells in my body (the host) as "foreign" and attacks them. This is exactly what we want to happen with the lymphoma; but GVHD can affect the skin, liver and gastrointestinal tract, causing things like a bad rash, diarrhea, vomiting, etc. Results in the past have shown that having a little bit of GVHD is favourable as usually this also means that the graft is attacking the cancer too, but GVHD can be very severe, to the point that it can cause life-threatening complications. If the GVHD is getting out of hand, I will be treated with steroids (Prednisolone, a drug I know well) which will suppress my immune system and stop it from attacking Megan's. The downside of this, however, is that it leaves me vulnerable to infections and it may also reduce the graft-versus-tumour effect. So you can see how a lot can go wrong here, and there is a fine balance that requires close monitoring and medical expertise. 

The next milestone that I will be working hard to get to is 100 days post-transplant. If I can get there with a) no cancer and b) no major complications from the BMT, my contact with the hospital can be reduced to three-monthly scans. It will be a monumental day, and I will get there. 

So am I scared? I am. But I am more scared of the transplant failing to cure me than of what it is going to do to me. I don't expect it to be a walk in the park, but I am ready for it. I am tired, both physically and psychologically, but I know I can take anything this cancer throws at me now. It's been a long year. I have had 8.5 rounds of chemotherapy, one round of high-dose chemotherapy, an autologous stem cell transplant and now I am heading into an allogeneic stem cell transplant, all within 12 months.

But right now I am so, so thankful that I have a date for my transplant and that is happening quickly. Yesterday I got a call from one of my doctors about my PET results. Now remember that the last PET scan I had was two weeks prior and it had come back clear. Well already, yesterday’s scan showed that the cancer is growing again in the chest area and possibly in the pelvis as well. They are small spots, but they are there. After two weeks. Sometimes I am just blown away by how aggressive this cancer is, and how powerless I am to stop it. But I feel so blessed that there was a cancellation in late October, that allowed me to get a transplant this soon. I just hope and pray that it doesn’t leave any cancer cell unturned, so to speak.

I would be lying if I said I still don't worry about the cancer coming back. Relapsing after the allograft is still a pretty big risk, but without the allograft, the risk of relapse is 100% (well, as shown on the scan, I have effectively already relapsed). As long as there is still even the slimmest chance of a cure, I have to keep fighting.

Love this quote - thanks Glenn

The timing of the allograft means I won’t be able to be involved with the Peter Mac bike ride, which I had signed up for as a crew member. It also means that Megan, as my donor, also won’t be able to partake as a rider. This is really disappointing - I just think it would have been so moving to see all those riders, including members of my family, putting themselves out there to raise money for a cause so close to my heart. But then I think of the cancer cells already dividing and multiplying inside of me … and that’s irony, right? That the one reason my family is taking part in this ride is also the reason I can’t take part.

Anyway, to conclude: today I was sitting on the tram and as it tends to do on long public transport jaunts, my mind got thinking: to how wonderful the last few months has been. I have enjoyed trips away, weekends with friends, laughs, catch-ups with old friends that are just so wonderful in such a unique, warm way because it’s like no time has passed. I want to thank everybody that I have spent time with over the last six to eight months, everyone who has sent me messages, taken the time to meet up with me, put a smile on my face and served as a wonderful distraction and a reminder of how lucky I am to be surrounded by such awesome people. You all know you are. And an extra special thank you to those who have organised and supported recent fundraisers for Peter Mac, it means so much. Despite all the difficulties I have had this year, there have also been plenty of uplifting and genuinely funny moments, and they are the things that keep me sane. 

Road trips and road blocks

Q: What did the skin say to the syringe?  

A: Don’t be such a prick.

These are things I have to resort to to entertain myself in hospital; making up lame jokes like the one written above. They can also help lighten the mood when things get – much like the weather at the moment – bleak.

Because there hasn’t been that much to laugh about lately, really. On Tuesday, I had PET scan no.6. Since I am an old hat at PET scans, the whole procedure is pretty much routine for me now: arrive to hospital starving hungry, tired and grumpy (after 6-12 hours of fasting), fill out a form, get called into a room, change into hideous hospital-provided pants (because the metal zipper of my jeans will interfere with the scan), get injected with radioactive liquid, lie in a dark room for an hour, lie on the PET scanner bed and get passed through the whirring donut. I have grown to hate PET scans and they are usually preceded by two days of major pre-scan anxiety, which means I don't sleep well the night before and am generally a grumpy, cantankerous person for a day or two and horrible company. 

This time around I had pre-scan anxiety like no other. I literally had two hours sleep the night before the PET. It’s really no wonder, since only one of six scans have given me anything to celebrate. PET = pain, in my book. But additionally, I had a very bad feeling because of the signs my body had been giving me. I didn’t get many side effects from the chemo, and in my third week, when my blood counts were coming up and I should’ve felt better, I felt very, very tired, my appetite was next to nothing and I had the occasional night sweat – at times I felt worse than I had in the previous two weeks of my chemo. Which just gave me an inkling that the cancer was still hanging around; I felt a lot of these 'old' symptoms were coming back.

And it really shows how in tune with my body I actually am, that my hunch was right. My results weren’t great. Basically, the cancer has barely changed. It hasn’t really grown, but it hasn’t shrunk either. "If you're a half-glass-full kind of person" as my haematologist would say, it has halted the lymphoma’s progression, which is something, as pre-chemo, it was growing mega-fast.

But what it means is that I can’t have the stem cell transplant on September 3 as planned, because there is still too much cancer for it be to curative. Before the SCT can go ahead I need more chemo (just to add to the bucketloads I have already had) and this time we are heading into unknown territory. They’re going to have to try a chemo that hasn’t seen my lymphoma before - which could be a good or bad thing. Good because my body hasn’t built a resistance like it clearly has to the Hyper-CVAD, bad because it might not work. But the most annoying thing in all this is that they will have to push back the stem cell transplant even further – to something like November.

Just another obstacle, another change of plans, and my chance for a cure just pushed even further away. I really, really needed some good news this week – all of my last consultations with doctors have been bad news, and not just bad – worst-case scenario a lot of the time. Oh crap - your cancer’s come back after 6 cycles of chemo and a stem cell transplant, oh shit, now your cancer is growing at an unprecedented rate and you need more chemo, oh !@#%, the chemo didn’t really do the job, now we have to switch to a different poison that might not work. The fact that I want to scream right now would not come as a surprise.

And … depression. Oh boy, do I understand depression so much more than I ever did. I feel for anyone who has to go through it, it is a dark, dark place to be. I was so optimistic when I began this journey, and I honestly believed I would beat this disease. Death didn’t even register as an option. Now things are different, and dark clouds of doubt hover over me every day, because as hopeful as I would like to be, I also need to be prepared for the fact that things won’t work out. The result is me trying to hold myself in some kind of emotional ‘limbo’ where I don’t get my hopes up but I don’t slip into the depths of despair either. It is very, very difficult. 

The last round of chemo was a busy cycle, and mostly due to Matt being here, though he’s gone home now. Poor Matt– having been here when I got my bad PET scan results, he was dragged onto my horrible rollercoaster of hospital visits, family dramas, last-minute plan changes, antibiotics and all the things that have become a normality to me. Though, even I have had a three-month break so it’s been pretty hard for me too. The timing couldn’t have been more wrong, but it wasn’t like I could tell my lymphoma to take a week off. It was a difficult time but we also managed to make the best of a shit situation, and if Matt had no grasp of what I’ve been through in the last six months, he certainly does now!

But … all these things aside, Matt and I got to do some pretty cool stuff, like a day trip to Wilson’s Promontory (where we saw kangaroos! And emus! And a wombat) and Tarra Bulga National Park which is totally cool and virtually in my backyard, and a lot of other things, like some absolutely breathtaking sunsets … I’ve seen a lot of sunsets all over the world and have decided that Australia has the most dramatic, especially in winter. (And we got to travel in an XR6, because one positive thing about having cancer is that your parents let you take their sportscar out, when they would never do that otherwise. Win. ) I drove four hours on day 7 of my chemo - clearly I couldn’t do any of the arduous walks - but it’s nice to know that cancer doesn’t completely control my life, and sometimes I do get time to smell the roses.

Wilson's Prom: one of my favourite places

It was so nice to get out of town, to breathe in the sea air, feel the sand between my toes, delve deep into the wet mossy rainforest … we really do live in such a beautiful, fantastic country.

Wednesday it was back to Peter Mac and by Thursday I was neutropenic. At this time I noticed a little red spot on my hand, and I was instantly wary, as I’d had this type of skin infection show up during chemotherapy before. What do you know, by Saturday the redness around it had spread and there was clearly an infection going on. The doctor gave me oral antibiotics so I did what anyone with neutropenia would do – went to the footy!

That night I was supposed to have my wig party which I cancelled because I was neutropenic (sorry everyone. Will reschedule, I promise). Instead I went out with a small group of my closest friends and relatives, and you know when you have one of those awesomely fun nights, which is fun for no other reason than your ridiculously awesome company? This was one of those nights. The next day my sides still hurt from laughing, especially at the sight of Sam in my blonde wig. It was just a really lovely night and I feel so lucky that I have so many people in my life who can put a smile on my face, at a time when I don’t have that much to smile about.

Oh dear. Who are these people? Please note we were rejected from
Section 8 which apparently has a 'no-wig policy'

The next day my hand was swelling up to the point it almost had its own postcode, so back to the hospital I went. This is when they told me I had to be admitted to hospital. I cried. Seriously, enough is enough, why do I have to have this swollen, sore hand on top of everything? I went into hospital on Sunday, and Matt was leaving Wednesday. The doctors said I would need IV antibiotics for a few days and I couldn’t bear the thought of still being in hospital when he left. One of the nurses knew how badly I wanted to get out and convinced them to discharge me, with “pumps” of antibiotics that I could hook up to my PICC line myself and carry around (I tied mine to my belt hooks). This meant I was out of hospital, and I was so happy. So now, I can give myself injections, I can give myself IV antibiotics and if you asked me to dress a PICC line I could give you specific step-by-step instructions and even show you how, and I bet I’d do it perfectly. Surely I should have some medical qualification by now (I told mum that I should have a nurse qualification soon, which was met with a ‘whatever’). 

My antibiotics on the Great Ocean Road

So Matt and I took this window of opportunity. At about 1pm we picked up a hire car from Melbourne, were ‘lunching’ in Lorne by 4.30, indulged in some unexpected whale spotting, got a speeding fine, nearly hit a roo, stayed in a gorgeous cottage with Jacuzzi in Port Campbell, woke before sunrise to see Loch Ard Gorge and 12 Apostles in the golden morning light, then made it to the airport around midday to get Matt on his plane to London. It was a lightning trip, but man it was worth it. However, at the end, we faced another difficult goodbye as I left Matt at “the door” of International Departures. You know, that door at Melbourne Airport that people who are flying overseas disappear behind, and sometimes you don’t know when you’re going to see that person again. This was the case for Matt and I, but I am so thankful I got to spend this time with him, I just wish circumstances had been better.

The moral of the story is that when things are doom and gloom, there are still so many blessings in life. Things are definitely starting to take their toll, it has been 10 months since I was diagnosed, and I feel that this has been the most testing time of my whole journey, by far. But if I can get through this, I will feel like I can achieve anything. And even though, let's face it, my life is pretty shit, I am still able to laugh, share and enjoy this world that I live in. Because when I am unable to do that, the cancer has won already. While I am still breathing I just have to enjoy each moment I've got. 

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. 

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. 

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. 

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.