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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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. 

Pedalling a good cause

Last time I wrote, I had good news. I’d had one round of chemotherapy, and the CT scan that followed had shown that despite the slim odds of this chemotherapy succeeding, the lymphoma had shrunk. I never saw the scans, so I really didn’t know just how significant the response had been. But the doctors were happy, so I was happy too. And this was the first good thing that had happened to me for a while, so I revelled in it.

So I went into round 2 of the chemo and once again handled it pretty well – I battled some fatigue and low blood counts, but overall I held up OK. After round 2, I got another PET scan, my seventh so far (I have had so much radioactive tracer injected into me I am surprised I am not glowing right now). I think it is pretty obvious to anyone who has been following my blog how much I hate PET scans, not just because I usually have to get up early and fast for them, which makes me hungry and grumpy, but also because they often bring anxiety, and sometimes heartbreak, too.

I had my PET on a Wednesday. On Friday, I still didn’t know the result. On this day, I was sitting in pathology at Peter Mac, waiting to get a blood test as part of my weekly routine, and I bumped into the lymphoma nurse. “Did you get your PET scan results?” she asked me. “No, I haven’t heard anything, yet,” I replied. “Well, aren’t I glad I bumped into you then,” she said. “You had a complete response.”

It took me a minute to process this. In medical terms, a “complete response” when talking about a PET means there is no cancer showing on the scan. I wasn’t expecting this at all. I was hoping it would have shrunk, but I wasn’t expecting the scan to come back completely clear.

Now, of course this does not mean I have no cancer in my body. As I later discussed with the head of the transplant team the following week, there is “no doubt” (his words) that there are still microscopic cancer cells floating around my body. They are just not big enough for the scanner to pick up. But this is the best result I could’ve hoped for. And to be honest with you, a few months ago, I had serious doubts about whether I would ever have a clear PET scan again. I think my doctors had serious doubts too, if the truth be known. After discussing the result, one of the doctors from the transplant team came to me and shook my hand and said, “I am very, very happy to see you again.”

After my negative PET scan, I managed to fit in a long weekend to the Grampians, where I spent time at my cousin’s amazing house at Hall’s Gap. A wonderful weekend with wonderful people - and the steep walks were all worth it!

So now, it is hoped that the allo-stem cell transplant will eliminate those microscopic cells, those cells that the chemotherapy just can’t seem to eradicate. I have finally reached the final frontier, my only and last chance at a cure. For a while the allograft just kept slipping so far away that it started becoming some kind of elusive dream, I felt like I was never going to get there. But I am there now, and suddenly I am a bit nervous. I’ve been through a stem cell transplant before, but this one is far riskier and far scarier, and I really don’t want to go through it all again. But I have to.

There are still no guarantees that the allograft will work. In fact, according to medical research, the chances of it not working are greater than the chances of it working. But right now I refuse to even think about that possible outcome, I just can’t. I know how dangerous it is to get ahead of yourself in this game. I have to always bring myself back to now – I will cross bridges once I get to them. Right now, hope is keeping me going, and even if it ends in disappointment, it is better than having no hope.

Today I got a phone call from the transplant team. A bed has become available for me in the third week of October, the exact date to be confirmed. It is important for me to go quickly into this phase of treatment in case the lymphoma decides to go crazy again, like it did back in June/July. So I have three weeks 'till I face this big, hopefully final, fight.

Of course it shouldn’t matter in the scheme of things, but of course it still really does bother me that this means I won’t be going to Harvest Festival to see my favourite band, that I will miss the Coldplay concert I intended to attend with my sister (yes, I know it is totally uncool to like Coldplay but I don’t care what you think), that I will miss Spring Racing Carnival and a whole bunch of other stuff. But once again I have to look at the bigger picture. On November 11, it will be a year since my diagnosis and I will most likely be in hospital – how fitting that things should come full circle like that. But a year ago I was just beginning my journey, and hopefully this time around I will be finishing it. It’s so hard to believe that this cancer fight has taken up almost a whole year of my life. I can’t even remember what ‘normality’ was, and going back to it seems a long, long way away.

But as well as my stem cell transplant, there will be another big, massive event in October which will no doubt also be a challenge for those involved: the Peter Mac Ride to Conquer Cancer.

This is obviously an event close to my heart – Peter Mac is like my second home. The doctors, nurses, support staff, everybody in that place has been so amazing and made my journey that little bit easier. I feel so lucky to live in a country where these facilities are available. Peter Mac also carries out important research – just recently they had a world-first breakthrough in the fight against leukaemia and lymphoma. What I also like about supporting Peter Mac is that the money goes towards all cancers – not just one specific kind. It breaks my heart that people diagnosed with rarer diseases such as brain cancer and pancreatic cancer face a 5% chance of survival due to lack of funds and research. Once the funding is allocated, it can make such a difference: for example, 15 years ago, leukaemia killed 90% of patients, now that figure has turned on its head with a survival rate of 90%.

My sisters, brother, dad, cousins and my uncle have bravely taken on this monumental task of riding 200 kilometres in two days to raise money for this cause. If they don’t raise their fundraising targets this month, they won’t ride.

Here is the link to my family’s team – called the ‘Flying Dorts’. Listed in the members you will see my sisters Jacqui and Megan, my brother Sam, my uncle Mick and my cousin Kate. You can donate online, and it doesn’t matter how much, every bit counts.

http://ml12.conquercancer.org.au/site/TR/Events/Melbourne2012?pg=team&fr_id=1060&team_id=8005

There are also several events to attend: my cousin has organised a Grease movie night fundraising event in St Kilda, all proceeds going to Peter Mac:

https://www.facebook.com/events/153856321422391

For Gippslanders, my sis has also organized a high tea fundraiser in Traralgon:

https://www.facebook.com/events/463420987031721/

My brother is also playing a fundraising gig at the Basement Bar in Bendigo on October 16. 

So October brings its share of tough challenges, and like those cyclists who will take to the roads of the Yarra Valley and ride a ridiculous distance, I can’t wait to get to the other side and say, ‘I made it.'

Your heart is a weapon the size of a fist. Keep fighting. Keep loving

Sorry I've neglected you lately, blog, but I thought I'd hold out until I got some good news. I don't much like writing about bad news. I don't like receiving it, and I definitely don't like passing it on. Just recently, it seems the universe decided that I deserved a break, and God knows I needed it. 

About three or four weeks ago, I was sitting in my oncologist's office, and I was crying. I had just received news that the last round of chemo I had undergone, Hyper-CVAD, had not shrunk the lymphoma, and my treatment plan had hit a massive speed bump. As I reached for the tissues, the oncologist said, "I think we'll all be reaching for those by the end of this session." I guess I am so caught up in my own journey that I forget what an emotional toll these things also take on the medical practitioners involved ... oncologists have to face the fact that many of their patients will die, and to have to look them in the eye and make them aware of that fact must be up there with one of the hardest jobs in the world. 

My oncologist told me that the mission was the same: we were still seeking a cure, but our chances of getting there had taken a big hit. 

The reality is: I have a relapsed lymphoma which is growing at an alarming rate, and we are running out of weapons to stop it. And when you're fighting a war, you use your strongest weapons upfront. So we've tried the R-CHOP, the high-dose chemotherapy, the stem cell transplant, all those things that have proven to have high success rates, but none of them could even put a dent in my lymphoma. 

But there were options left. One option was a chemotherapy regime I'd never had before (I can never remember its name, but I think it's called "Gem-Vin"). Gem-Vin had a 30% of shrinking my cancer (to put it into perspective, R-CHOP, my first line of treatment, had a 90% success rate). But as I said to my oncologist, statistics mean nothing to me anymore, and they honestly don't. Things are either going to work, or they're not. All along the way, I have fallen into the small percentages: the 10 per cents, 5 per cents, 15 per cents ... so you know what - 30 per cent actually sounds like my kind of odds, bring it on!

The other option presented to me was a clinical trial. This was a completely unknown quantity: drugs that had only been tested on a very small sample of people. It was too early to tell how effective they were; for instance, the drug worked for one person but not another; does that eventually turn into 50% or 1 in 100? It is a complete medical leap of faith.

So I decided 30% was better than nothing, and the Gem-Vin would be my next line of attack. We'd pulled out the tanks, bazookas and machine guns but they hadn't done the job, and now we were stuck with the clapped out rusty old hunting rifle from the back shed, and bullets are in short supply. 

But sometimes that's all you need. 

Gem-Vin was pretty easy to tolerate. There were very few side effects and I got through my low period with few problems. So I did what any cancer patient would do: I went snowboarding! My sister booked us an amazing apartment at Falls Creek and a group of us piled into our cars and spent two nights on the slopes. I managed to surprise even myself, going out every day and spending the whole day boarding ... it's nice to know I can still do these things after eight chemo treatments and a stem cell transplant. I would collapse in a heap at the end of the day, but I did all right. Once again I felt it was something I needed to do, revisit my 'normal' life, enjoy a taste of my former freedom. It was three days during which the only medical-related thing I had to worry about was how to keep my PICC line out of the jacuzzi. It was three days of pure escapism and it was great.  

Some of the 'Falls Crew 2012'

Sunset from our balcony

When I got back to Melbourne, it was a snap back to reality. I was booked in for a CT scan to see how things were progressing with the chemo. Pre-scan anxiety wasn't such an issue this time around, in many ways I think I have become numb to it. It is a very difficult thing to stop yourself from having expectations and hope in a bid to avoid heartbreak; I think it is human nature to feel these things. But for me, I saw it as simply going through the motions, but I would be lying if I said I didn't hope so hard it hurt as I passed through that whirring donut once again.

The next morning I was booked in for chemo. I went to the fifth floor, and sat in the chair in front of the window overlooking Albert Street as they fed me the chemotherapy through the drip. I hadn't received news on the CT scan yet but I had missed two calls that morning ... I recalled that one of my friends, in a spooky sixth-sense way, had told me she "had a good feeling about this chemo" several weeks before. I hoped to God she was right.

And she was! A young haematology registrar was the first to break the news - the lymphoma had responded to the chemotherapy, and there had been shrinkage across all sites in my body, which was a really positive sign. My oncologist was very happy with the response. It was hoped that after one more round of Gem-Vin, I could finally get a shot at my only chance of a cure: the allograft. 

So right now I am on day 7 of my second round of Gem-Vin. I have a PET scan in a week or so which will determine whether the allograft can go ahead. Things are falling into place, but as I know too well, nothing is certain, and I still have a long way to go. All I know is that it feels so good to finally, finally have some good news after a litany of worst-case scenarios. The result also gives me hope ... if this chemotherapy had a 30% chance of working, and it worked, surely the allograft can work too. As long as I keep falling into those small percentiles, I know I can do it. 

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. 

Operation stem cells complete

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

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

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

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

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

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

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

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

A rainbow outside my hospital window

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

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

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

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

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

My hair grew back. Then it fell out again. 

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

Welcome home, stem cells!

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

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

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

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

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

We survived The Edge!

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

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

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

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

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

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

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

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

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

So it's back to business ...

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

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

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

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

Bendigo beer gardens

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

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

$1.50 - bargain

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

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

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

Stopover at Lakes on the way home

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

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

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

Another awesome wedding ...

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

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

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

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