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. 

Every second counts ...

This was supposed to be a positive post. I had lots of good news to give. I had my final radiotherapy session last Thursday. The sun has been constantly shining (a rarity in Melbourne). I have hair - and I am absolutely loving this short pixie do that I would never have had the guts to try out otherwise. I am putting on much-needed weight. I am down to a low dose of steroids (10mg a day) and haven’t crashed yet. I feel strong, I have energy, and I am very rarely at a loss of something to do. In recent weeks, all I have been focusing on is how good I have been feeling, and stopping my mind from drifting too far ahead (PET scan on March 14, gulp).

But I write this entry with a heavy heart. Last week a friend of mine was killed in an accident. We went to the same high school (we were in the same class from year 7-9), went to the same university and was someone I respected greatly and would always make time for. Absolute top guy, who has left a massive gaping hole in so many lives. It saddens me that I will never see him again, hear him tell his hilarious stories, reminisce about school days and just have a chat and a laugh. What makes it even more tragic is that another one of my classmates, who was from the same friendship group, passed away suddenly only weeks before. Both these people have left behind partners, parents, siblings, close friends and colleagues, and I can’t even begin to fathom the shock and sadness they must be experiencing. In the last five years, my year level, Class of 1999, has said goodbye to four classmates. I’ve only just hit 30, and I really don’t want to attend any more funerals. It just isn’t right.

There is really no way to make sense of it, I’m not even going to try. All I can take away from this is the fact that life is fragile, and you really can’t waste a single moment. I tend to talk a lot about doing things, but laziness or whatever else will make me put it off or fail to get around with it. I’ve decided that has to change. I hope most people I know live long and happy lives, but you just don’t know what is around the corner. Make sure you are living the life you want to live now. Not tomorrow.

Another thing I have learned is that my year level is full of inspiring and wonderful people. The classmates we have lost were wonderful, dynamic people who lived full lives and brought a lot of joy to a lot of people. But also, to see the way my fellow school friends rally around each other at grief-stricken times like this, is truly moving. I know from my own experience that my classmates are thinking of me and wishing me the best on my own journey, and I have reconnected with a lot of awesome people. It doesn’t matter how many years have passed or how often you have seen that person in recent years, these people still manage to reach out and put a smile on your face. I don’t think I ever stopped to think about that before. I feel really proud to be have graduated with Catholic Regional College, Traralgon's Class of 1999. A top bunch!

Despite these recent tragedies, I am making sure I remain as positive as I can about my own situation. If anything, it has given me more resolve to beat this thing - I don’t want to put my year level through any more heartbreak.

Sad, but pressing on. Next post will be more positive, I promise. Live for today, plan for tomorrow, love to the fullest.

100 days ... but who's counting?

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

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

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

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

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

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

1. Slight changes to the game plan, again

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

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

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

2. Tell me why I don't like Tuesdays

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

3. Aussie Day shenaningans

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

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

Bogan? Me? Nah.

4. Tuesdayitis strikes again ... 

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

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

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

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

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

5. Back on the 'roids again

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

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

6. Upwards and onwards

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

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

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

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

·     

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Time to turn up the radio

This post is going to be part bad news, part good news, part philosophical babble, part warts-and-all account of radiotherapy planning and some gig reviewing. Or something.

So let’s just get the bad news right out of the way, shall we?

So last week I found out I still had spots of lymphoma across my body. That was the initial blow. But the doctors were hoping that by weaning me off immunosuppressants, the graft would kick in and do its job.

But once again, this has been followed by another blow, and it’s a game-changer.

About four days ago I got a call from my Peter Mac/Royal Melbourne Hospital specialist nurse asking if I could call in and see her and one of the haematologists. I didn’t have an appointment booked that day and had only just been in the day centre the day before so this was unusual. She said she wanted to discuss a few things, like my cyclosporin dosage. I had a steady stream of visitors to the apartment that morning so I scheduled a meeting for the afternoon.

The day before at the day centre, I’d told the doctor about a sporadic dry cough I’d had for several days, and he'd sent me in for a chest X-ray. “They’re just being careful, I’m sure everything will be fine,” was my attitude. Wrong.

Turns out the cough, and the fact that I can’t do the two-minute walk from my apartment to Royal Melbourne Hospital without feeling short of breath, are symptomatic of something  bigger. The X-ray showed that the lump in my chest is getting bigger. I’m not sure about the medical ins and outs, but apparently it is wrapped around a nerve that is pulling on my diaphragm (which would explain the cough and shortness of breath).

But the unfortunate part of it all is that the tumour is increasing to a size that is too big for the graft to contend with. The graft v lymphoma effect is very efficient when there is very little cancer. But when it starts to become a mass, it becomes increasingly unlikely that the graft will work. Basically, they need to shrink the tumour in my chest, and they need to do it quickly.

So how will they do this? With one of the few untested weapons they have left: radiotherapy. When will it start? As soon as next week. Yep, as I mentioned: game-changer.

At the same time, they have taken me off the anti-rejection drug, cyclosporin, immediately. This will heighten the chances of me getting severe GVHD, but “that is a risk we have to take”, said the doctor. I am already showing some pretty minor, ambiguous sympGVHDtoms of GVHD (a rash, nausea, etc) right now, but it's hard to tell at this stage. (It’s a small consolation in the scheme of things, but I am actually really happy about shafting the cyclosporin because it has icky side effects, one of which being a package deal: a moustache and a pair of sideburns. If only lymphoma was as easy to remove as a moustache. Remind me never to complain about a lip wax again … sigh.)

So yeah, this is more shit news, but surprisingly I have just taken it in my stride. I didn’t cry when the doctors told me, I just sat there, stoic. It’s like I have built an armour around me and bad news barely even affects me anymore. And after all I have been through, I am simply not surprised. This is some kind of super-stubborn, bull-headed, cantankerous cancer (as some would say, a lot like its carrier, haha). I know it is a horrible thing to say, but it is like I am just waiting for that day the doctors take me into their office and tell me I’ve run out of options. Because I am, gradually, ticking each one off the list. It just feels like that is naturally where this is all progressing. I know ‘hope’ has been an important mantra for me but when you have been knocked down as many times as I have, it is very hard to keep doubt at bay. It sounds flippant, but I honestly believe I am prepared for all outcomes. I have been staring death in the face all year, and I don’t think it’s something you ever come to terms with, but you can quell some of the fear associated with it when you remind yourself that it happens to every single one of us.

If a genie in a bottle presented itself to me, there is only one thing, first and foremost that I would want for – that all cancer in the world be eliminated. Now I’m not sure how much power genies have, and if there are boundaries imposed on wishes, but if the rules allow, I would also add a ‘forever’ to the end of that wish.

Then I would wish for a packet of Tim Tams that never runs out. (Just kidding.)

So after that morbid ramble, I’ll but a positive spin on the situation like I always do to make things seem less shitty. What it comes down to is that I am actually lucky that I still do have options. The lymphoma has never been exposed to radiotherapy before, and this is a real positive as it has not had a chance to build a resistance, like it seems to have done with chemotherapy. And even though radiotherapy is going to be a pain in the arse, I am really glad that’s the treatment I’m getting and not further chemo. The radiotherapy, best-case scenario, might get rid of it, and if there is anything left over, hopefully the graft will complete the job. Yes, it would be nice if the transplant could’ve just finished the job and I didn’t have to go through this, but with radiotherapy added to the weapons catalogue, I also feel a sense of comfort, that not one, but two treatments will be used together to combat this persistent disease.

So, needless to say, after this briefing at RMH I was feeling a bit bummed. So what did I do? Hunted down a ticket to see one of my favourite bands, Beach House, who were playing a sold-out show at the Forum that night. Thanks to the power of the internetz, I tracked one down through Twitter and arranged to pick it up at the venue. Ironically, the girl that sold it to me had received mole biopsy results that day which confirmed she did not have a melanoma (I know this because it was on her Twitter feed). I'm not sure if that's ironic twist, or just an indicator that cancer and cancer awareness is so prevalent now that we all have a story. 

I went to Beach House alone, and I was happy to do it that way. I just knew I had to do something nice for myself, escape to my former life for a little while. This was my first gig since Golden Plains (in March last year! This is a long dry spell for a self-confessed band/festival junkie like myself), and it felt sooo good to pile into the Forum with all those Beach House fans after missing out on so much in the past year. I blended right in, except for the elephant in the room, the IV antibiotic pump I was connected to (for my CMV infection). It was hidden in my bag which of course got searched at entry, and when I opened the pack to show him the plastic IV bag of antibiotics, the bouncer was very compassionate, and showed me to some special corded-off seats at the centre of the venue so I could avoid the crowds. I thought this was a lovely gesture. 

But me being me, could only sit through the support act, then I just had to wade through the hipster cesspool just to get a closer listen and look at Victoria Legrand. I stayed up the front for the whole gig, and even though my legs hurt at the end, it was worth it. I even found myself weeping when they started playing, and fair enough, I’d had a full-on day but the people around me must’ve thought I was a melodramatic fool. But Beach House’s dreamy melodies move me for several reasons. The release of last year’s album Bloom, easily my favourite album of last year, coincided with my cancer relapse in May. I also received a vinyl copy of this album in the mail as a birthday present from a dear, dear friend, and I spent a lot of time listening to it and crying (I still have trouble holding back tears when I listen to it now). It was a melancholy comfort during a very dark period. Additionally, Beach House’s previous album Teen Dream was the soundtrack to my first, amazing summer in London. So it kind of didn’t surprise me that tears would spring to my eyes at moments during their set. I think you have to love music as much as I do to understand this. 

Beach House T-shirt for meeee

My lady crush Victoria Legrand, Beach House's lead singer

 Now, from music therapy to radiotherapy (how's that for a segue?).

I will be getting all my radiation treatment at Peter Mac. Back in May, I had been scheduled to receive radiation to my chest area following my autologous stem cell transplant, when it was assumed I was in remission, until a routine PET showed a hot spot in my chest. Radiotherapy was shelved in favour of a much more intensive and effective option – the allogeneic stem cell transplant, which, as we all know, is done and dusted now.

So today I found myself back in the radiotherapy planning room, talking to the same radiotherapy oncologist I saw last May, sitting right next to the mould of my upper body they’d also made back in May (which, thankfully, is still a perfect fit). I have the three dots on my body, tattooed in May, that allow them to align my body as it goes through the machine, and thankfully, no new dots are needed. Once again, as I did in May, I lay down, snuggled my body into the mould, while they fixed a very, very tight mask onto my face (it was all very horror-movie-esque, like Jason from Friday the 13^th or Hannibal Lecter from Silence of the Lambs). It was so tight I could barely blink, and I could only (just) talk thanks to a small hole for my lips. Apparently, the tighter the better - if it isn't cutting off circulation, then it's good. Then I lay there, half naked while they poked and prodded, drew on me, taped me, took photos of me and got everything in the right place (this was a bit uncomfortable, but when you walk into a hospital, you leave your dignity at the door). Radiotherapy is just really weird, and I haven't even been introduced to the big monster machine yet.

The most striking photo of a radiation mask I could find on the internet.
If you want to know the story behind it, go here 

So the plan is that I will start radiotherapy next Wednesday (they weren't kidding about acting quick). I will have to go in for sessions five days a week. Overall, including preparation the sessions will take about 20 minutes, the actual radiation only several minutes. The side effects (sore throat, mild rash, tiredness) are minor compared to everything else I have been through. Radiotherapy will be more an inconvenience than anything. I will be juggling radiotherapy, check-ups at RMH, and the possible symptoms of GVHD in coming weeks and I don’t expect it to be a great time. Radiotherapy will not conclude until late February, about two weeks past the magical day 100, the day I thought I might be able to go home (although I'm not really sure where 'home' is anymore).

Another thing that I think about sometimes is the long-term effects all this treatment will have on my life. Stem cell transplant patients have a 2-3-fold chance of developing a secondary cancer - well I have had two of those, a bucketload of chemotherapy and now radiotherapy so I'm pretty sure my chances are now astronomical. But right now the focus is merely surviving. I'll worry about the other stuff later. 

Oh yeah, so now that I’ve depressed you all beyond belief, you want to hear the good news right? It’ll be a little anti-climactic now I’ve left it till last but it’s made an immediate improvement to my quality of life so it should certainly not be overlooked! I am now longer on IV antibiotics and I am now no longer surgically attached to my ‘style-cramper’ which was that little electronic pump I had to carry everywhere (and I mean everywhere. When I had a shower the pump would lie outside the glass door while I, still attached, would carry on with my personal hygiene routine). I’m so glad it’s gone, it gives me a lot more freedom and makes me feel just a little more normal. They switched me to oral antibiotics and I am very much enjoying this new lease on life, although the fact I get breathless after the smallest activity can be debilitating.

So for now I just have to put my head down and get through the next five weeks. Do I dare to dream that in five weeks the cancer will be gone? Do I dare to dream that, soon, maybe soon I'll start putting pieces of my life back together? Whenever I ask myself these questions, I take myself back to last year, when my doctors pretty much weren't expecting me to make it to the allo-transplant because I had a chemo-resistant tumour growing out of control, and I was pretty sure that was the beginning of the end. Well I'm still here, and many didn't expect me to be. The doctors said without a hint of doubt that a cure is still the goal, and that a cure is still possible. As long as there is a cure in sight, there is hope. 

Anyway in between all the crappy obligations that will be taking up my time, I would like to schedule in as much fun as humanly possible, so if you want to come over and play board games, watch movies, sit in the park, draw, laugh, learn a hobby, whatever ... you know where to find me :)

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.

Oohh, we're halfway there (sang to Bon Jovi's Livin' on a Prayer)

Some things that have happened:

1. I am really glad the world didn’t end yesterday. I didn’t spend the whole year fighting for my life for some stupid Mayan prophecy to take away all my hard work.

2. I reached day 50! But instead of celebrating, I got admitted to hospital. I just got discharged today after three nights back inside (just to avoid my mum’s cooking and the Christmas shopping crowds. Just kidding, mum). Nothing major, but on Wednesday I woke up feeling really unwell and I had a temperature. I had no energy, I felt nauseous, fatigued, could barely stand up for short periods, short of breath, just felt positively awful. I called the oncology unit and they told me to go to emergency. Which was probably a mistake; I was in ED for a long time doing nothing but feeling horrible and no one even took my bloods or the routine things that doctors/nurses are supposed to do when a cancer patient has a temperature because no one was trained in handling a Hickman’s Line. Anyway, while examining me the doctor asked me how long I’d had the rash on my stomach for – which took me by surprise because it was the first time I’d noticed it. I also had it on my back. A rash on the skin can be a symptom of graft vs host disease, so later that day they took a skin biopsy (anaesthetic and a needle injected into upper back). I got admitted into hospital, back on the bone marrow transplant ward where I spent my three weeks in November, so a place I know well. I didn't get the penthouse suite this time though. In the end, the good news is that after three nights, tests show no evidence of GVHD or infection, the bad news is that I spent three nights in hospital for really no reason at all and I am behind on my Christmas shopping. My burnout on Wednesday was probably due to steroid withdrawal, as the doctor had stopped my Prednisolone two days earlier. I have since been put back on it, so they can slowly wean me off it instead of going cold turkey, and I feel 100 times better. It’s actually scary how good the steroids make me feel, I feel like I have been floating on an artificial high for the last 50 days and I fear crashing and burning again when the steroids stop again in about a week. But I need to come off them – a) they suppress the immune system, and while they prevent GVHD they can also reduce the graft v lymphoma effect, b) long-term steroid use can have some nasty effects c) I am pretty sure they are contributing to the fact I haven’t had a decent night’s sleep in weeks. Being back in hospital reminded me how much I don’t want to be back there ever again. The nurses were all surprised to see me there, since all they’d heard were stories about me going to Devo concerts and stacking my bike (see points 3 & 5)

3. I saw my doctor at a Devo concert. I scored last-minute free tickets to Day on the Green through a friend (and I mean on-the-day-last-minute). So I called my little sister Megan who was on her way to Melbourne to visit and asked her if she wanted to drive to Rochfield winery to see The Church, Devo and Simple Minds. The answer was in the affirmative.

However, mutiny struck when I was reminded that I had two sisters and the other one I had not invited was a Devo fan. In the end we all agreed that all three of us could go to the festival, and we’d all pitch in $30 for a third ticket, as they were still on sale. Resolution reached. When dad said we could take his XR6 the day only got better.

A great day was had. There was a bit of rain, and at 100 years old or however old they are now, Devo have definitely still got it … I’m not sure I would say the same for Simple Minds, though. I think the crowd outsang the lead singer on Don’t You Forget About Me but an enjoyable performance nonetheless. But a highlight was definitely bumping into my transplant doctor. I saw him, wearing nothing but a black T-shirt and shorts, rocking out with his lady friend. “Is that … Dr Ritchie??” I said as I walked up to him. It took him a few moments to recognise me – he was used to seeing me around the ward in daggy tracksuits, so it makes sense that this tall girl in a wig, red lipstick and short shorts would have had him stumped for a few moments. For a second I thought he was going to tell me off (I should be taking it easy, and I should be avoiding crowds) so I kept dropping into conversation that I had reserved seats and this whole trip was a last-minute thing, but he seemed fine about it; I think he was more worried that I would blow his rock pig alter-ego. Then about 20 minutes later, I bumped into a Peter Mac nurse I knew quite well, she’d looked after me at the haematology ward several times. She also took ages to recognise me. “You’re on day 31 of your allograft?!” she said in disbelief. Yep, this is my life now – bumping into doctors and nurses in the 'real world'.

Some guy wanted to take our picture because we are awesome

DEVO

Simple Minds

4. I recorded my song. I went into the Royal Melbourne Hospital recording studio (yes they have one of these), had a session with Emma O’Brien and recorded my song in one take. It was a great experience. Will upload song and share on here soon :)

5. I fell off my bike (well my sister’s bike; maybe it was karma for borrowing it without her permission). I had just ridden down to the Queen Vic markets with a friend Lucy who I’d just spent a lovely weekend with (very short ride) and was on my way back alone when my handbag got caught in the wheel and I went over the handlebars, right on Peel Street, in the middle of a North Melbourne bike path (yes, I was left on my own for 5 minutes and this is what happens). I’d hit my face on the ground and my tooth had gone through my lip, I could already feel where it was chipped. This lovely young couple stopped to help me, and then another lady, who was an oncology nurse, who ended up driving me to the apartment to drop off the bike and then to the hospital emergency department; executing several illegal U-turns to do so. I wish I had’ve got her name, she was so kind. The ED doctors cleaned me up, gave me a stitch in the lip and prescribed me some more antibiotics (yay! More pills). I got a tetanus injection and then I could go home. Luckily Jacqui arrived back from Meredith to be with me in ED. I felt a bit teary after my fall and I wasn’t sure why, I think I just felt vulnerable and I am very, very lucky that I didn’t do more serious damage. A broken bone or any major injury would have been a major setback. The next day my fat lip had blown out to major Lana-Del-Ray proportions, and I was going to try and convince my doctor that I’d got into a punch-up at the pub but he already knew the story because ED had called him. So for about a week it all looked a bit like a collagen injection gone wrong but the grazes are healing nicely now and I have some more scars to add to my impressive collection. My pride was hurt more than anything else.

APOCALIPS

6. I had an amazing weekend in Daylesford with some members of my dad’s massive extended family. We hired a stunning 18-bed mudbrick house in the bush and spent two days eating awesome food, swapping hilarious Kris Kringle presents, playing charades and board games and walking around the pretty town of Daylesford. It was such a great weekend, and my first trip away from Melbourne since the transplant, apart from a day trip to Torquay a few weekends ago.

The cousins. Aaaaw, what a beautiful bunch of people

7. This Christmas I have several things to celebrate. A) Not being in hospital. B) That I am alive. C) That I have the best immediate and extended family a girl could ask for. Last year I spent Christmas in hospital and that really, really sucked. As long as I steer clear of anything with two wheels I will be staying well away from hospitals this year.

So may your Christmas be merry, and amid the festivities of overcooked turkey, family feuds, loud drunken rants from relatives, rubbish Christmas presents, bad bon-bon jokes and cheap champagne, spare a thought for those who are stuck in a hospital bed (because I was just there and there are plenty), or attending to a person in a hospital bed, or eating Soup for One out of a can in a darkened apartment (that was almost me in the UK one year) or just having a shittier Christmas than you. Good health is the best Christmas present you could ask for and if you have that, feel blessed.