PET scan #3: third time lucky!

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

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

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

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

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

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

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

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

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

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

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

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

OhAunty Meredith, how I have missed you ...

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

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

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

Stem cells, phantom bugs and flowers

Life really is a fickle thing. One minute you're a seemingly normal, healthy person, with normal, healthy (and not-so-healthy) habits and duties. Decisions like 'Will I be able to make rent this week?' 'What should I wear to this party?' 'Where should I go for my next holiday?' dominate your reasonably carefree existence. How quickly a cancer diagnosis can change all that. Suddenly, your life is taken over by a big, heavy, threatening task that constantly looms ahead, and the hospital is not just a place you drive past every now and then, or hear about on the news. It's your second home. And every move you make, every change in your body is watched, monitored, discussed and documented. Every phone call or catch-up is to ask about your progress. And suddenly things like money, parties and clothes just don't seem to matter anymore.

I am very used to hospitals now. I've done the hospital circuit; I've been admitted to/received treatment at three in the UK and two in Australia. All of this has now brought me to the Peter MacCallum Cancer Centre in Melbourne. I’ve only been a patient with Peter Mac for a couple of weeks now, but already I know most of the nurses by name and familiarised myself with their individual quirks and nuances. I also keep bumping into some familiar faces among the patients, which is nice, though I am yet to meet a patient younger than me.

During my first admission to Peter Mac, I spent four days hooked up to a drip to receive my chemo. After that I got to go home for a few days. Those few days 'reprieve' at home were not particularly pleasant. I had some horrible symptoms that landed me in the emergency room on one occasion, and for the most part I felt helpless, weak, sore and completely flat and unmotivated. The days of painting, writing, editing, sorting through old belongings during my previous chemo were long gone. For someone who considers herself quite driven, this was difficult to deal with. I had no desire to answer my phone on some days. Depression suddenly made a lot more sense to me. 

Thankfully I was able to read though, and I voraciously consumed The Help (thanks Kate!) in a couple of weeks, which was really my own achievement over this time apart from the viewing of a few bad movies on Pay TV. 

On Sunday, about day 9/10 of my chemo, mum and I checked into our apartments next door to Peter Mac. The aim was that I would be close to the hospital so they could monitor me during my neutropenic phase and also carry out daily tests in order to collect my stem cells, which we had been boosting with daily injections of a hormone called GSCF. I was pretty much at my lowest point at this stage; I couldn't do much without feeling light-headed or short of breath. I didn’t even have enough energy to pack. After a restless sleep at the apartments, we were up early for my 8am blood test in Apheresis (the department in which stem cell collection takes place). I was feeling very rough. Just walking to the lift, out the building’s doors, then a few metres down to Peter Mac and back down the lift again, was really hard going. “Do you feel like you’ve been hit by a horse?” one of the Apheresis nurses asked me as I stood, or stooped, at the counter. They managed to find a vein (an arduous task for my arms at the moment), take the blood, then we went back to the apartment, where we would wait for a phone call regarding whether my stem cells would be collected that day or not. I crawled straight back into bed and slept soundly until 11am when Apheresis called me and told me not to bother getting up, because my bloods were too low, which explained my lethargic state.

That afternoon the dreaded happened. I checked my temperature (something I have to do four times a day now) and it was above 38 degrees; which generally means two things 1) an infection and 2) a hospital admission. I had also noticed something that looked like a spider bite or sting on my right knee, was becoming very, very swollen and red, and felt hot to touch. Every part of me wanted to be anywhere but in that hospital, but this was how it had to be. I was admitted at 8.30 that night, by which time, the lump on my knee was about the size of a golf ball.

So I settled in. The man in the bed beside me snored loudly. There's always a snorer - then the snorer gets discharged, and you feel relief, until the man across from you decides it's too quiet and works as a very effective replacement. It’s amazing though, I always manage to sleep reasonably well in hospitals. I don't know if the rhythmic hum of the drip machine and the medical staff and equipment moving around me that lulls me into a sense of sleepy security, but after three nights in hospital I didn't even know my night nurse’s name because I would always snooze right through her shift. 

Tuesday my bloods were still too low for the stem collection to happen, but they still wanted another blood test that day so they could monitor the trend. Getting blood out of me had been like getting blood out of a stone, literally. My veins had pretty much disappeared and most blood tests would require three or four jabs up my arm. Until I was able to be booked in for a port or PICC line, I had to endure the torture of nurses tying the rubber band around my arm until it felt like it was going to fall off, fingers pushing and pushing into my arm to feel for a vein, tentatively sticking in of a needle, sometimes failing to strike, sometimes succeeding. Blood sports!

The results showed my platelets (the blood cells that promote clotting) were low at 17 (normal counts are 150-400), which meant I required a platelet transfusion. A bag of yellow stuff resembling murky runny custard was hooked up to my drip, and viola! I had platelets, thanks to a range of generous donors. I was also given two blood transfusions as my red blood cells were also low (my blood type is B Positive! How fitting). My first blood transfusion, one that made me want to go out and donate blood, though unfortunately, my blood is no good to anyone now.

Wednesday morning heralded another dreaded blood test, but this one yielded good results. My blood counts were finally up, and my CD34 counts (the protein found in stem cells) were through the roof! It was about 350, ‘one of the highest they’d seen’ in Apheresis. “Lucky they were sitting down when I told them,” the nurse said. They were even gobsmacked enough to ask her “Are you sure it’s her blood?”

So Operation Stem Cell Harvest was on. First I had to go down to radiology and get a Vas Cath – a long tube that is surgically inserted into a large vein in my neck. It was a rather uncomfortable procedure carried out with some local anaesthetic, but they did the job, and then I was off to Apheresis, who couldn't wait to dip into my stem cell goldmine.

My Vas Cath. Frankenstein-esque

In Apheresis, I was hooked up to a giant machine via the tubes sticking out of my neck, and my blood was circulated through the machine which extracted the stem cells, then returned the remaining cells to my body. There was only one cup of blood outside my body at one time as I sat there for 2-3 hours as my blood wooshed through the machine and through my body. The machine made a curious sound as it worked away, similar to tap-dancing; what I liked to call the 'Stem Cell Song'. 

While that one collection would've given them the stem cells they needed, they brought me in again Friday morning for another go on the machine just to err on the side of caution. This time around we met a nice man called Aaron, who seemed to know a hell of a lot about stem cells. Aaron took some blood from me and predicted it would show a drop in my stem cell count, but again I caused quite a stir when my CD34 counts came back as 750. Now, that was the highest they'd seen! I don’t know what these high counts mean – I suppose it just indicates that my despite what my body has been through, my bone marrow is very healthy (or that I’m a superhero, as a friend suggested. Personally I like the latter theory better). I took a peek at the bag of stem cells before I returned to the ward, which resembled a Tequila Sunrise, the way they went from red at the bottom to a murky yellow at the top (where the white blood cells and plasma were). Mmm … Stem Cell Sunrise! When the official stem cell counts came back, it turned out they had harvested 67 million – which they figured must be close to a record! (They only need a minimum of 2 millon to go ahead with the transplant). I am a stem cell making machine!

My precious stem cells ... straight to the freezer you go!

Then the good news just kept coming. The doctor gave me the green flag to be discharged on Thursday afternoon. My white blood cells had leaped from 6.7 to 40 overnight; there was some kind of out-of-hand malaky going on in my bone marrow (maybe it was celebrating - hey, the stem cells are out! Let's throw a party!). That night I couldn’t wait to get out into the open air, free of all drips and hospital beds and blood tests and doctor visits, so my mum, sister and I treated ourselves to a delicious Thai feast on Smith Street.

It's amazing how quickly I bounce back, once I'm on the up again. For the next few days I was out and about in Melbourne, feeling very mobile and strong. My mother was stunned at my transformation; I was 100 times better than the Beth that had arrived in Melbourne several days ago. 

Saturday, we drove home and I spent a really nice weekend catching up with my little sister and old friends. Being in a small town, I found myself in the same restaurant two nights in a row; both times served by the same young chatty waiter. However, thanks to some crafty wig-wearing, the first night I'd been a brunette, and the second a blonde. The jury's still out on whether he actually worked out whether I was the same person or not.

By the time Valentine's Day came around, a day I for the most part refuse to acknowledge let alone mark in any way, I was pleasantly surprised by the arrival of a bouquet of white lilies delivered to my front door. As soon as I opened the card and read Matt's name I wanted to cry. Flowers, all the way from the UK. It's amazing how special gestures like this can make you feel. Maybe Valentine's Day isn't so bad after all ... 

On Wednesday, like a yo-yo, I was Melbourne-bound again.  Mum and I had to be up at the crack of dawn if we were to make it to Peter Mac at 8.20am to get my bloods done. Inevitably, we got stuck in traffic and got to the hospital at a time more like 9, and then we had to wait in an excruciatingly long queue before my number was called. Peak hour on all counts.

Then I was off to get my PICC line - a long central catheter inserted into my upper arm, then advanced through to a bigger vein above my heart. The line meant that the nurses would be able to draw blood from it and attach my drip to it without the laborious trials of needle jabbing and lamenting over my woeful veins. It was going to make my life and theirs a lot easier (the charge nurse actually said she would throw herself off the 9^th floor if I didn’t get one – my rebellious veins had become notorious about the ward). Unfortunately, due to several delays, my 9.30am PICC line appointment became a 1.30pm appointment. 

The delays on the PICC line meant I did not have time to get the first instalment of my chemo, the drug Rituximab, because there simply wasn't time. This was very disappointing because it would extend my stay in hospital by a day. But as this whole journey has taught me, things often don't run to plan, and when they veer off course you can't fall apart because in the scheme of things, it's trivial. I've had to miss out on a lot of things recently (giving away tickets to a band I really, really wanted to see a couple of weeks ago because I was feeling so ill broke my heart). But really, what is a missed social event when you’re fighting for your life?

Thursday I was admitted to Peter Mac for my second round of Hyper CVAD (fifth cycle altogether). I was pleasantly surprised to receive a bed with a view. Long windows gaped out to the gorgeous St Patrick’s Cathedral, its dark steeples piercing a brilliant blue sky. But view or no view, these hospital stays were starting to wear a bit thin. Visitors helped, as did my laptop and Nintendo DS, and the odd meander to Fitzroy Gardens (complete with drip machine in tow, attracting all kinds of stares), but the routine was getting old. I know I have to adjust, because hospital time is going to be a part of my life for some time yet, but it doesn't make it any easier. I still hate the dreariness, the long days, the warm sun mocking me from the window, being stuck to a drip and the horrible hospital food that I don’t want to touch. 

The view could be a lot worse ...

This time around was also difficult because on my third day in hospital the nurse came around and told me I had tested positive for a bug called VRE - an antibiotic-resistant bug that lives in your digestive tract and generally doesn’t cause any problems, but if you test positive for it in a hospital, you may as well have the plague. From then on, nurses, doctors, visitors and even the food staff had to wear a gown and gloves every time they came near me. They also moved to my own room, in isolation so I wouldn’t infect anyone. I felt alienated. The only benefit was that I got my own room and some semi-decent sleep. But otherwise, I felt like a leper.

On Sunday morning, based on the results from my blood tests I could be discharged, but because I had to get the Rituximab as an outpatient on Monday morning, I had to stick around. I was disconnected from the drip and was able to go out for the day, but would return that night to sleep at the hospital, then get discharged the next morning. I was keen to get as far away from the place as possible, though I wasn't feeling great ... I was off my food and feeling weak. 

My mum, sister, cousin and I did a trip to Essendon but after sitting outside at a cafe in the heat, I realized I didn’t feel too well, and had to run myself to the toilet to throw up. It wasn't one of my best days. I got back to my dark hospital room that night, feeling really ill and lying on the bed in discomfort, thinking I’d never sleep. The one good bit of news I got on my return was that I didn’t have VRE at all – there had been a mix-up at the lab. Leper stigma lifted! The staff were apologetic for the mistake, but I got two nights in my own room out of it so ... swings and roundabouts.

Strange dreams and mental images dominated my sleep that night; something else I seem to get around day 4/5 of my chemotherapy. When I woke up in that cold, dark room early Monday morning, I couldn't shower and get out of there quick enough. Then it was up to the chemo day unit to get my belated Rituximab, and then finally, home. At times, living at my mum and dad’s property in the bush has felt isolating, especially having come from the hustle and bustle of London, but this time, it was a safe, leafy haven that I was so happy to see. I have also developed an unhealthy attachment to my bed - I don't think I have ever held such affection for a piece of furniture before - too many years of sleeping on rickety hand-me-down beds in share houses. Just to be out of hospital had instantly lifted my spirits ... being admitted to hospital is almost worth it for the pure elation you feel when you're let out. Almost.

Amazingly, the last few days I have been in great shape. I have been going for walks, eating and drinking plenty and apart from some mild fatigue and shortness of breath – a symptom of my slightly low red blood cells - I feel pretty good, which is in stark contrast to my previous cycle. I've now realised that some of the horrible symptoms I experienced then were most likely a result of my intrathecal – a procedure in which chemotherapy is injected into my spine, which is then carried through my spinal fluid to protect my brain. I have a feeling it had been a bad dose during my last cycle, because I'd never had these symptoms before.

Pancakes on Pancake Tuesday make everything all right.

But nothing's ever simple. While I am so happy to be feeling good right now, it's underpinned by a niggling anxiety that maybe the mild symptoms mean the chemo isn't working ... however, it's not worth thinking about until I get my third PET scan in a couple of weeks.

Things are moving along, and the steps are being taken. It feels so good to tick stem cell collection and  my fourth round of chemo off the list. Every round of chemo means one less to go, that's what I keep telling myself. And while my eyes are always on the bigger picture, I also have to be careful not to look too far ahead either - worrying about a scan that is weeks away is in no way healthy. One day at a time.

A change of tack

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

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

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

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

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

Don't you love weddings?

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

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

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

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

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

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

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

 “Are there any other options?” I squeaked.

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

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

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

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

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

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

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

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

Part three (post-diagnosis): a plan finally in place

The Story of Hippo Jo

Hippo Jo started out as a gift to my brother, handmade by a 92-year-old patient named Patsy who makes these knitted animals for sick kids. I never met Patsy but I am told she has purple hair, purple glasses and purple underwear (apparently the nurses told Sam about the last one)! On Sam's last day of his rotation at Berwick, she gave him a card and wished him well in his career and personal life. Hippo Jo was in the process of being made, and she took Sam's address and promised to post it to him. Five weeks later, when Sam thought she had forgotten all about him, the fluffy Hippo appeared in the post. When Hippo Jo arrived to London, he was in the arms of my mother and I had just come out of surgery. Jo was accompanied with a letter from Sam, which read: "After all, he was intended for sick kids, and you are a bit of a sick kid." Jo has been with me through thick and thin, and attracted much attention from the doctors and nurses who were in and out of my room. As part of the journey, we took Jo around London and snapped him with all sorts of London landmarks, and he accompanied us on the flight home.

I got discharged from hospital on Thursday, and until I got my bone marrow biopsy and then my PET scan the following Wednesday and Thursday respectively, there wasn’t much for me to do but try and fill my days with as much normality as possible. The steroids I was taking were keeping me strong and active, so I made the most of it.

It also meant Matt and I got to spend some time together outside the hospital, doing things like going out for dinner and visiting the cinema, things I hadn’t really been able to do even before my stay in hospital because I was feeling so ill. Every day I went out I would soak up my surrounds, taking in my last memories of London. I forgot how beautiful London could be in December; on Saturday evening, even Green Lanes looked beautiful in the misty sundown, the neon Christmas trees glowing softly from the lamp-posts. I couldn’t believe I would be saying goodbye to a place I had called 'home' for 18 months within weeks. It amplified everything I felt times 100.

There was still some uncertainty over when I would be going home. Mum had booked my flight home with her on Friday, but it was now looking very unlikely that I would be hopping on that plane. Mum had put her medical industry connections to great use, making contact with the doctors in Australia and getting the ball rolling down there. An oncologist in Traralgon had agreed to take me (a feat in itself, usually there is a long waiting list). Mum had received a message from him recommending I stay in London for at least one or two cycles of treatment. With both Australian and UK doctors now agreeing that I should stay, it was pretty much confirmed that I would be rebooking my flight to a later date, which left mum in a difficult predicament: should she stay with me for the two weeks or return home?

On Wednesday, I got my bone marrow biopsy done, which really wasn’t that bad (I kept getting warnings that it would be painful). The worst part was the injection of the anaesthetic, which stung sharply as it went in, but after the initial pain and a few deep breaths, even that was quite bearable. The doctor spent a lot of time grinding into my bone, which more than tickled ("You have very strong bones," she told me, which probably explains why I, Miss Accident Prone, have never broken a bone).

I got an X-ray that day which showed my tumour hadn’t really shrunk since the week before. The steroids had really only been stunting its growth, rather than shrinking it. This showed that the tumour would still be affecting my breathing, which made the decision absolutely final: I would not be flying home that Friday. When I spoke to the lymphoma nurse, Barbara, she told me the earliest I could start chemo was the following Friday.

After the biopsy, Mum and I roamed the streets to find an internet café and interestingly ended up on Goodge Street, the place I first moved to when I arrived in London. I showed mum the pub where I worked my first London job (for a measly £6.50 an hour), and the window where my room, which I shared with four other travellers, stood, above an Italian restaurant. Then, amazingly, I bumped into Giovanna, the Italian woman that ran the house I stayed in and rented out the beds. I couldn’t believe it. She gave me a hug and insisted I take her number; she was still living in the same place, doing the same thing she’d been doing for years. It was a weird meeting and I felt like things had come full circle; how different I was to that wide-eyed Australian girl who had slummed it in that tiny room only just more than a year ago.

Overall, I felt it was positive day, and I went home feeling fine. It wasn’t until Thursday that everything came crashing down on me like a tonne of bricks. It was really the first time I thought, “Why is this happening to me?”

The morning began with the PET scan, which was going to establish the stage of my disease (how far the cancer had spread across my body). There was about a 45-minute delay on the scan and as I’d had to fast, I was hungry and impatient. The whole process of the PET scan did excite my inner geek though. I was injected with radioactive liquid and instructed to lie down on a bed for an hour while the potion moved around my body. I stuck my iPod in and daydreamed away. Finally I went in, lay down on the space-age style bed and was moved through the giant whirring donut.

A big lunch was in order after the scan which we indulged in on Tottenham Court Road. There wasn't really much time to rest though – I was going to see the fertility specialist and Barbara had called and wanted us to drop by the oncology clinic. She had arranged for us to see the oncologist, a doctor whose name we had read on letters and forms but never met. “There is going to be a few surprises about our plans for you,” she said as we went into his office. Mum and I took a seat and the doctor started to explain what would be happening. The results of the PET scan, a 3D image of my body, flashed up on his computer screen. I guess I wasn’t really expecting what I was confronted with right then, because all I could see was MY body, splashed with bright yellow glowing tumours: not only in my chest, but scattered across the lower part of my body. “So the scan pretty much matches the CT scan,” the doctor was saying. “You have deposits in the pancreas, kidney, lung and liver.”

Whoa, hold up. Up until now, not a single doctor had told me a single word about anything but the tumour in my chest. The CT scan, performed almost two weeks ago now, must have showed the cancer’s activity in my other organs but no one had reported back to me. I had been expecting stage 2, or worst scenario stage 3. But I was at stage 4. 'I'm riddled with it' was all I could think as I stared at that scan. This was a massive shock to me.

Mum and I were clearly quite shocked and upset, but the doctor explained to us that the prognosis was still good, and that many patients with advanced-stage lymphoma are cured. If it was any other cancer, deposits in the liver would mean a death sentence, but because lymphoma is a blood cancer, and the tumours are liquid, it remains treatable.

Then they told me that chemotherapy would start tomorrow, instead of the following Friday as initially planned. They had obviously assessed the urgency of my situation and by some small miracle managed to slot me in for treatment the following day. It was all a bit much and I broke down and cried, just overwhelmed by it all. But this was good news, it meant the healing was about to begin – exactly two weeks after I took myself to hospital! It also meant that it was very likely that I could go home two weeks from now.

By this stage, my type of lymphoma had been confirmed as a diffuse large B-cell lymphoma, and my chemotherapy was called R-CHOP, which is made up of five different drugs. I signed the consent forms for my chemo, then I had to head over to the main hospital for my depo injection, which, administered monthly, would hopefully help protect my fertility. When I was waiting at the pharmacy for my medication, my phone rang. It was Glenn and as soon as he heard my voice, he said, “How can I help?” and I burst into tears. Everyone was staring at me. Mum took the phone from me and I got myself together and took my prescription to the collection window. A lady nearby gave me a hug and told me everything would be alright. Oh, the kindness of strangers!

So it was a bit of a miserable trip home for mum and I. Ragged, tired, emotional, travelling home in the cold darkness. But we went out for dinner and pulled ourselves together. We had now also devised a clear plan: mum would move her flight to the Monday, so she could be with me for the first few days of chemo, then she would fly home alone on Monday. We had decided it would be better for her to return because she really wanted to attend my brother Sam’s graduation from medical school, and it was also very important for her to be around the family. She had been sleeping in the living room of my crowded London flat which wasn’t ideal. Mum would fly home, attend Sam’s graduation, and then less than 24 hours after his graduation, Sam would board a flight to London, spend a week with me, then accompany me home. Go Dortmans tag team! It was a good plan – it was going to hit the hip pocket a bit but it would be worth it.

Part 2 (the diagnosis): straight to the heart of the matter

(Continued from this post)

My trip to the Heart Hospital was like no other journey through London I’d ever had before. I was simply being transported from one hospital in North London to another in Central London – there was no urgency – but the ambulance driver put the siren on the whole way. It’s a weird feeling, being fully conscious, in a screaming ambulance, running every red light, speeding along as all the cars in front of you veer to the side, like Moses parting the Red Sea. “That’s the fastest trip to Central London I’ve ever had,” I told the ambulance driver as we took the elevator up to my ward at the Heart Hospital. “I just want to knock off and be home with my family,” the ambulance driver, who had been on call that night, replied with a laugh. Fair enough!
Going from North Middlesex Hospital in the northern suburbs to the Heart Hospital in Marylebone was like being upgraded from a seedy motel to the Hilton. I was delighted to see I had my own room, with my own ensuite, plenty of storage space, a much nicer outlook than my other hospital ward, and, from the looks of my dinner which was served on arrival – much better food.
I was feeling very ill and weak that day. I don’t know if it was the overexertion of my walk outside and ambulance transfer, or the North Middlesex hospital food, but I really wasn’t feeling well. I fell into a deep sleep, woken intermittedly for numerous tests, medications, surgery briefings, consultations etc.
The next morning, at 11am, they came to take me to theatre, much earlier than I expected. I wasn’t ready at all. “I need to put these on,” I said, holding up the horrendous-looking thrombosis tights to the porter, who tried to call a nurse, only to discover he was on his break. He was in quite a rush so we got set on trying to put the tights on ourselves, a tricky exercise. We were both giggling at the whole comedy of it all, both of us fumbling with the tights, in a mad rush to get me into surgery. “You’re too young to be having surgery,” the porter said as he wheeled me to the lift, and to the theatre.
As I entered the theatre, with its white walls, and blue-clothed people, reality suddenly hit me. They were about to cut me open. Nerves set in. I tried to put on a brave face. The nurses smiled warmly at me as they began to strap things to me. A man said he needed to put a needle into me, and I said, “Don’t worry, I’ve got enough holes in me. I’ll start leaking soon.”
Then the surgeon came to speak to me. “So, that’s a huge lump you’ve got there in your chest,” he said to me. “How did you find out it was there?” I was taken aback by his upfront nature but I instantly liked him – he was a larrikin and a character. The surgeon and I chatted briefly, then the anaesthetic was administered and I drifted off.
When I came to, my throat was dry and sore, I was coughing heavily and there was a deep pain in my left shoulder. The nurses all peered at me, and machines beeped at me. I suddenly felt really uncomfortable and scared, and I started to cry, in between coughing. “I don’t even know why I’m upset,” I said.
“Well, you just had surgery,” said one of the nurses. “You’re well within your right to feel upset. The anaesthetic can do funny things to you as well.”
Back in the ward, it was an excruciating wait for my mum to arrive. The hours ticked by, and I lay in bed, feeling much better, but not able to sleep because of the discomfort and anticipation. At about 3.30 she walked in, clutching Hippo Jo (a present from Sam, knitted by one of his 90-year-old patients. More about him later) and broke down into tears when she saw me. She came straight over and gave me a big hug, and even though it hurt slightly I didn’t care. Poor mum had been awake for 36 hours and probably wasn’t feeling much better than I was! We talked for a few hours. I was so happy to see her, her timing couldn’t have been more perfect. When I came out of that theatre all I had wanted is someone by my side.
Not long after, the surgeon came into see us. He said he was pretty sure it was a lymphoma and it was so big that it was squashing one of the air passages into my left lung. “You’re effectively operating on one lung at the moment,” he told me.
“It doesn’t feel like it,” I said, stunned.
“That’s because your body compensates,” he explained.
Then came the big question: if/when I could go back to Australia.
“Can you go back to Australia? The answer is no,” said the surgeon, and my heart fell. But he explained, because of the tumour’s placement around my lungs, I would find it very difficult to breathe on a 24-hour flight at that altitude. He said they were currently reducing the size of the tumour with steroids, but he wouldn’t feel comfortable about me getting on that plane until I’d at least had my first dose of treatment, which could keep me in London several weeks. The surgeon had said I should remain in hospital until I receive a diagnosis (which could take anything from five to 14 days).

Hippo Jo keeping me company in the Heart Hospital, post-biopsy

After that, it was an excruciating waiting game. I had put on such a brave face for so long but the long stay in hospital and the noticeable effect my illness was having on the people around me, especially my mum, was really getting me down. I missed normality and I longed to be back out there in the real world. Not living behind the walls and glass windows of the hospital, watching the world pass me by. I also learned that researching your likely condition on the internet was not a smart thing to do, either. All it did was frighten me and place a heavier burden on my mind. I cried myself to sleep a few times during those days. “Don’t be afraid of the bad days,” Matt told me and I knew he was right. I had to just let the bad days happen.
The next day, I was settling in for a long stay in hospital when the unexpected happened. The surgeon came marching in to my ward that afternoon, waving about a piece of paper. “We have it!” He said. “We have a diagnosis.” He sat down on the bed. “It’s non-Hodgkin’s lymphoma,” he said. This surprised me, as from day one all the doctors had assumed I had Hodgkin’s lymphoma, which was much more common in young people than NHL. He told us that he was going to arrange an appointment with an oncologist the following day and I could be discharged from the hospital tomorrow. So much to take on! I couldn’t believe it. He answered all the questions we fired at him and gave my mum a pat on the way out. “In a few months, she’ll be cured,” he said with confidence. And then he was gone. The surgeon was such a support to us, I can’t believe he worked so hard to get that diagnosis to us so quickly – he’d cut quite a few corners to get us the news quickly.
I couldn’t believe how stoic I was after hearing the diagnosis. I’d been as prepared as I could be. But it played on my mind that night. I didn’t sleep much.
The oncologist appointment the next day was the true reality check. I took my seat in the waiting room at the UCLH oncology clinic. Around me all I could see were sick people. People with cancer. It really hit me how much cancer there is in the world, and how it affects so many people. Sitting in that waiting room was depressing, but also eye-opening and in its strange way, comforting, though I still didn’t really feel like I belonged her yet. We sat there for almost an hour.
The oncologist who saw us was a registrar working under Professor Andrew Lynch, one of the world leaders in lymphoma. He looked young, possibly even younger than me. He was a rational man, but he appeared tired and seemed unsure of how to deal with my mum who was understandably quite emotional at this point. We found out later 70 patients had gone through that clinic that day.
At this stage they hadn’t confirmed what type of NHL I had – but it was between two different types. However, regardless of the outcome, I would be undergoing six months chemotherapy. I would be getting a bone marrow test and a PET scan which would establish the stage (how far it has spread across my body) of my disease. After consulting briefly with Prof Lynch, the registrar strongly recommended that I should stay in the UK for at least one cycle of treatment before I flew home.
There was a lot to take in that day. And the major setback was that I didn’t know when I would be going home, and it looked like I would be going home without mum. Mum was pretty upset about this. But at the time I was willing to follow doctor’s orders, if that was the best thing for me. Obviously I wanted to be home as soon as possible, but not at risk to my health. The lymphoma nurse, a gentle and kind lady, gave me a bunch of paperwork and her phone number which she told me we could call any time during business hours.
We caught a cab home. I was feeling overwhelmed and a little depressed. All I wanted to do was relax in a café and forget about everything for a little while. But we Skyped Sam when we got home, and suddenly the pressure of getting home and everything else heaped onto me. I was starting to realize what a hard, tough road I was facing.
That day was difficult; there were lots of tears. After talking to my mum, suddenly I could see the ultimate heartbreak a mother feels when she sees her child go through such unimaginable turmoil. Of course, a parent doesn't expect things to happen this way around. All mum wanted to do was fix me; and of course she knew she couldn’t do that, so the next best thing was to bring me safely home and care for me.
Friday was a new day. I spent the morning Skyping my friends in Australia, then I headed down the street for a haircut. I told the hairdresser to lop it all off, without letting her in on the fact that it would ultimately be a three or four-week haircut because my hair would all fall out in a few weeks. I wanted my £28 worth! I think she was quite taken aback by my nonchalance, as my hair was very long at this point.

Locks lopped! Liberating.

That evening my mum and I had the pleasure of meeting up with one of my sister’s friends, Glenn. Glenn and Jacqui had become friends in Brisbane several years ago and since then he had moved to London and built a life there. Around the time of my diagnosis Glenn had called me, to offer a listening ear and invited us both over to his house, which turned out to be virtually around the corner from mine! (Quite a coincidence, considering London is not a small place). Glenn was a lymphoma survivor, having undergone 10 months of chemotherapy for Hodgkin’s lymphoma more than 10 years ago.
Glenn came and picked us up with his adorable daughter Polly, and we headed to his place to meet his wife Justine. The last time I’d met them had been about 10 years ago in Brisbane. They put on an amazing dinner for us. It was great to talk to Glenn; he gave me some excellent tips and advice. It was also inspirational to see how the cancer experience had changed his life, and now he had ticked off all the things on his bucket list and was now living happily with his wife and daughter in London. It was a lovely night filled with stories, laughs, music and a wonderful dance performance from Polly. Mum and I went home all flushed by the loveliness of the evening and the unbelievable generosity of a family that were virtually strangers to us.

Christmas in ho-ho-hospital (sorry, I can't resist a bad pun)

Welcome to the chemotherapy rollercoaster. It’s going to be quite a ride. On day 1, these intense, life-saving drugs will enter your system. From this day until day 5 you will be on cruise along on an artificial high, thanks to a good strong dose of steroids. You feel mostly fine, getting on with your daily activities, catching up with friends, enjoying the sunshine and impressing everyone with how strong you are. On day 6, things still aren’t too bad but you can feel the weakness setting in. The real plummet begins on day 7, when you can barely get yourself out of bed. Then you run a temperature and bam! Day 8 you’re in hospital. You maintain a vegetative state for most of day 8, you spend most of your time feeling horribly ill and all you want to do is sleep. On day 9 your white blood cells slip even further to almost nothing. You feel like you should be living in a bubble. On day 10, things are slowly starting to pick up but you still feel weak and your appetite is low (mostly due to the hospital food). The hospital lets you go home for a few hours, like a prisoner on day release, but your mouth is so full of ulcers you can barely eat. On day 11, the doctor brings some good news – your bloods are up and he is happy for you to go home. You spend a fantastic day with your family. Day 12, 13 and 14 you are continuously on the up, and you continue your ascension until day 21, when the whole cycle begins again.

I really shouldn’t complain about my chemo. Overall, there’s really only a few days every three-week cycle that I feel really, really crap. But it just so happened that this time around, those days happened to coincide with Christmas.

Christmas time – a time that’s supposed to be spent with family and friends and your loved ones, filled with laughs, sunshine, family debates, succulent turkey, wine and gifts. This year, I spent mine in a hospital hooked up to a UV drip.

Why was I in hospital? The science is this: in order to kill off all the bad cells (the cancer) the chemo also has to kill some of the good cells. This is why chemo causes things like hair loss, mouth ulcers and nauseau (the chemo affects the lining of the hair follicles, mouth and stomach). But the bigger concern is the chemo’s devastating effect on the body’s key infection-fighters: white blood cells. If these drop too low, and you get an infection, it can be potentially life-threatening.

On December 22, I went to Latrobe Hospital’s emergency department with a temperature. I was cold and had shivers. These were all signs of infection, and a blood test revealed that my white blood cells (neutrophils at 0.7) weren’t high enough to fight it. As a result I was admitted to hospital and immediately fed every antibiotic known to man through a IV drip.

Needless to say, hospitals are not nice places. So being told on the 23^rd that it was highly likely I would be in hospital for Christmas day had me understandably depressed. It was probably the lowest I had felt. I think reality was also setting in for me. In London, I looked so well that people wouldn’t even believe I had cancer. But fast-forward a couple of weeks, and there was no mistaking my cancer patient status. Skinny, pale and weak, with a shaved head, tubes sticking out of me and being wheeled around in a hospital bed – I think I could safely say I had passed the ‘cancer patient’ threshold. Watching the healthy, happy people get on with their lives, doing what young people do – I used to be one of them, but now I feel like an outsider. I’ve always been someone who hates missing out; I’ve spent most of my life trying to disprove the adage ‘You can’t do everything’. This was ‘missing out’ on a whole new level.

But it’s times like this that your friends and family rally at your bedside, and my amazing parents, brothers and sisters and cousins came to the rescue. My white blood cells might’ve been low, but my spirits weren’t, for long. On the 24^th, my hospital room was crammed with Dortmanses, laughing and causing havoc. On the night of Christmas eve - a night I would’ve usually spent out on the town catching up with old school friends - my siblings marched through the door with Christmas dinner, an iPod of Christmas music, crackers, some non-alcoholic champagne (which nearly caused a code red when Sam popped the cork with a loud bang, catapulting it through the air at Jacqui’s head).

And proof that laughter really is the best medicine, was my first gift from Santa on Christmas day: neutrophils! A blood test showed they had jumped from a non-existent 0.1 to a much sturdier 0.5. They weren’t high enough for me to be discharged, but I did get ‘day release’ and was allowed to spend about six hours at home with my family, which was lovely. I was pretty tired though and couldn’t eat much because of the ulcers in my mouth, even though the food looked lovely (much better than what they served up to me at the hospital - see image below.)

Festive (or festering?) meats

On Boxing Day, I was a free woman! My neutrophils were up to 0.7, enough for the doc to send me home. I don’t think I’ve ever packed my things so quickly. Boxing Day was Christmas Day for me … I felt strong, I was surrounded by relatives I hadn’t seen for years and topped off the day with dinner at our place and a hilarious game of charades. It’s times like this that make me realize why I love being in Australia.

Spending Christmas in hospital was a very grounding experience for me. I’ve always been a bit of a Grinch, and have professed to ‘hate Christmas’ year after year, considering it a tiresome chore. After the usual family theatrics at Christmas time 2009, I told mum that the following year I wanted to be as far away from home as possible. I stood by my word, ending up in London for 2010, and I was looking forward to an orphan’s Christmas in the cold. However, I ended up seeking exactly what I was running away from, and found a surrogate family to spend the day with. A Skype call to my family in Oz had also been one of the highlights of the day. It made me reassess the things that were most important to me.

This year, missing out on those comforts we generally take for granted during the festive period also helped me to understand the value of Christmas. I’ve realized that while my Christmas day wasn’t exactly what I had hoped for and envisaged, it was a small price to pay on my journey to good health. There will be many more Christmases to come, and God knows I will be making the most of them.

I’ve also realized that while the bad times are really bad, they are short-lived. That stay in hospital seems like a lifetime ago now. I am out and about and doing the things that normal people do. I spent new year’s eve sober, also probably a first for me in many years, but I got to catch up with old friends and enjoy summertime Melbourne, a city I have fallen in love with all over again. As I write this, it is a 40-degree day (which is too hot, admittedly – can’t believe a few weeks ago I was wearing a thick winter coat, hat and gloves!) and tomorrow I leave for Wollongong, where I will relax beachside and then attend the Dortmans event of the year – my cousin’s wedding.

I know that in just over a week the rollercoaster begins again. It’s almost 100% I will go neutropenic again, because my chemo is quite aggressive. But they want to hit the lymphoma with everything they’ve got, and if that means my immune system gets knocked around a bit in the meantime, then so be it.

Our dog Audrey welcomes me home from hospital on Christmas day

I'm excited about 2012. I know some of it will be tough, but I'm confident it will also bring me good health and plenty of special memories. While 2011 will always be remembered as the year of my diagnosis, I can't say it was a bad year. I had amazing travel experiences including two trips to relatives in the Netherlands and a lovely jaunt to Ireland with my parents. I also discovered and was dazzled by Spain, Portugal and Eastern Europe, and attained friends and memories that will last a lifetime. I went to Glastonbury, was finally captured by London and I fell in love. I can't complain about that. The last two years of my life have been epic and I have a feeling 2012 won't be any different.

Part 1 (pre-diagnosis): The weekend my life was turned upside down.

The day I took myself to hospital was 11.11.11. When I looked back on that day and date several days later, I suddenly realized that Remembrance Day had happened, and I had spent the whole day in hospital, caught up in my own dramas, not even casting a single thought to the soldiers. But I guess that day will have an additional new meaning for me from now on, because it also marked the beginning of my own personal battle with cancer.

My lymphoma began in my chest, so it was invisible – I couldn’t feel it. In fact, even when I took myself to hospital, I wasn’t presenting with chest pain or breathing problems. I had abdominal pain.

With the beauty of hindsight, I can look back and identify the warning signs, although it’s still unclear if some of them were actually warning signs or not. Bouts of sickness, unexplained fatigue, shortness of breath, night sweats and a persistent cough. Most of these had presented themselves in the five weeks before I went to hospital, but when I thought about it, some had been hanging around for months.

One of those was fatigue. I was coming home from work and not being able to do much more than cook a meal and go to bed. My housemates had noticed a drop in my energy and a change in my moods. I hadn’t been for a run or exercised for several weeks because I hadn’t felt up to it. Even my half-term break was spent feeling sick and exhausted. I thought I must just be generally stressed and exhausted from working, but I knew something was up. One Saturday, I went swimming at the Hackney Pool and could barely complete one lap. I was a bit hungover and tired, but still this didn’t stack up for someone who can swim 30 laps of a 25m pool no problem. Straight after that, the abdominal pain and nausea began, and didn’t go away.

During these two weeks, I saw my GP twice. The first time he prescribed me pills that stopped the production of gastric acid in my stomach. They didn’t really do anything. I was still in a lot of pain and discomfort. And the pain had moved, towards my kidney. It was affecting my sleep. I was still going to work though, because the bills and rent needed to get paid somehow. The second time I went back to the GP, all he did was send off for more pathology tests. “This is a poo-poo container,” he said, holding up an empty vial. (Ew. I feel for whoever had to carry out that lab test.) So basically he took stool and urine samples, and told me results would be back in two weeks. Two weeks! I was in agony. I knew I couldn’t wait that long.

I could see that my GP was pretty much useless. I mean the guy didn’t even try to come near me with a stethoscope. But what can you do?

I went home after that GP appointment and spent the whole day in bed. Usually this kind of rest would make one feel better. Well I didn’t feel any better. I knew something was up. The next day I decided I wasn’t going to sit around and feel horrible anymore. I was going to do something about it. I walked to the bus stop and took the next bus to my closest A&E.

I was dreading a long wait in the waiting room but I got called straight up. I went into my little cubicle, explained my symptoms to the female nurse. They did all the routine checks, then they sent me in for an X-ray. I wasn't sure why at the time and I thought it might be unnecessary. But when they sent me in for a CT scan after that (where you lie down on a bed, get injected with a strange liquid and are passed through a giant whirring donut), I knew something was up. I could see them poring over my X-ray, a big blotch across the screen, speaking in muted tones, stealing concerned glances in my direction.

Finally the nurses came into the cubicle and asked me some questions about my family history. They explained to me that something had come up on my chest X-ray. That there was some kind of mass, gathered around my thyroid, around my breathing apparatus. The male nurse said he was waiting on the CT report to get a better idea of what it was, and that he would be sending down doctors to speak to me about it. I was dumbfounded but I didn’t really know what it all meant. The full seriousness of it hadn’t reached me yet. He asked me a few more questions about symptoms, then I remembered the cough - a horrible sounding whooping cough - I’d had for two weeks, that only presented itself when I was lying down. They seemed concerned about this and scribbled it down on their clipboard.

More waiting. People came to take my blood. I watched as a nurse took about four or five vials, the dark scarlet liquid leaking across the plastic ominously. A young female doctor, who didn’t really have any news, but was nice company, and did a few more checks. A manky hospital sandwich for lunch. And more waiting.

I’d been in A&E for about six or more hours when the bombshell came, via a lady named Sarah from haematology. She was accompanied by several doctors and consultants. I wondered if they thought I was going to flip out. They were all looking at me with concerned faces. They asked me if I had family around. I said no, they were all in Australia. And I couldn’t even call them because it was stupid o’clock (3 or 4am) over there. All my London friends were at work. Sarah was very direct with me. She said the symptoms I was describing, and the scans and test results were all pointing to one very likely diagnosis: lymphoma. This meant nothing to me at first, until she said, ‘Hodgkin’s disease’ and suddenly Delta Goodrem, and cancer, sprung to mind. “Lymphoma is malignant, but it’s very treatable,” she assured me. She told me they wouldn't know what it is until a biopsy was done, which wouldn't be happening until at least Monday. I didn’t really know what to say but sit there quietly, crying. Not sure who to call, what to do. “It’s a lot to take in,” she said gently. I had never wanted to speak to my mother more than I had at that moment. They told me I would be staying in the hospital for the weekend and when I told her I was supposed to be working Monday, Sarah said gently, “I can assure you that won’t be happening.” (No, instead I would be in an operating theatre.)

So I called my boyfriend Matt, who I was supposed to be meeting up with that night. His reaction was shock and disbelief, his voice wracked with concern. “Can I come see you?”

I had been moved to a ward by the time Matt came. I was so happy to him walk in the door, even though his eyes were full of worry. It was a lot to take in, but it was quite difficult to talk things over while the woman in the corner kept moaning and retching violently into a bucket. At 8.15pm one of the nurses came over and told us visiting hours were over at 8pm. I didn’t want Matt to go. He hesitated for a long while. “I don’t want to leave you here on your own,” he said. “I’ll be OK,” I said. “I know,” he replied. “Tough as old boots.” (Apparently on his way out, the lady in the corner asked Matt if he could take off her socks. “I don’t care who takes them off,” she said, staring at him wildly. Matt called for a nurse and high-tailed it out of there.)

It was about this time I called my mother. It was about 9.30am over there and she was at work. I went to tell her, but I choked on the words and began to cry. Concern crept into her voice. “What’s happened?” I told her I was in hospital, and that a scan had shown something in my chest, and when I mentioned the likely lymphoma diagnosis, her voice fell. “Oh Beth.” She then, as I knew she would, insisted on flying over. I told her to wait. “Just wait until the diagnosis.” Because she was at work and still recovering from the shock of what I told her, we resolved to discuss it further tomorrow. Then the nurses told me I was changing wards, and I gathered my things, and was wheeled, like a frail person, to the upper floor.

It wasn’t exactly the most welcoming of surrounds. At first I had been grateful to get away from Lady ‘take my socks off’ Spewguts, but when I accustomed myself to my two new neighbours, old Spewguts didn’t seem so bad. On my left side was a woman who I at first thought had a case of severe flatulence, however, the culprit was actually the ventilation machine she was using for oxygen. Directly across from me was a middle-aged Romanian woman, who was rocking back and forth, moaning softly as if possessed, her chin poised ominously above a vomit container. She was deathly pale. Next to her bed, a monitor was beeping loudly, and at every break between her beeps, a beep came from the opposite corner. So between these two other patients, there was constant beeping, deafening machine-powered flatulence and moaning, as I lay there, tossing and turning, trying to get comfortable in spite of the sharp pain in my side. On top of that I’d missed dinner and was majorly hungry – the best the nurse could do for me was a couple of pieces of toast with a tiny sachet of jam. Then the doctors insisted that my bed stayed upright all night because they were concerned about my cough.

Needless to say, I only slept three hours. The next morning my phone went flat, and I started to worry, as it was my only portal to my friends and family. Luckily I'd written down a few numbers, and I asked one of the nurses, Sister, if I could use the hospital phone to call my friends, so I could arrange for them to bring my belongings, including my phone charger, to the hospital. She wasn't crazy about the idea and told me to be quick, because they needed to use the phone. The phone calls I made kept cutting out, and after several calls Sister yelled at me because I was taking too long. She really upset me, and after some tears and heated words were exchanged, thankfully a male patient from a neighbouring ward intervened and offered me his phone charger.

Thankfully my phone was charging when my family called - Mum, Dad, Sam and Megan, via Skype. It was so good to hear their voices. I gave them updates on my situation, and mum said: “You’ve made up my mind, Beth, I’m coming over.” She said she had already checked flights and there was one leaving Sunday night. Everything was happening so quickly.

Matt managed to bring my belongings to me that day, after rummaging around in my room (let this be a lesson - always keep your room tidy in case you end up in hospital) and another friend Nick came to visit as well. It was a nice time, sitting around laughing and chatting. The nurses even let Matt stay past visiting hours.

On Sunday morning, after a better sleep, I could see a small patch of blue sky through the hospital window, peeking above the bland concrete garden and wall. I asked the nurses if I could go outside for a moment to get some fresh air, and they allowed it. It was a short walk to the lift which took me downstairs, to the doors to a garden. I realized as I walked out the automatic doors to the outside world that I was very tired and short of breath. For once it actually hit me: I am ill. A brief walk shouldn't make me feel like this.

At about 3 or 4 in the afternoon the nurses announced I would be moving to the National Heart Hospital in Central London. This is where I would undergo a biopsy, where they would enter through my chest and take a sample of tissue from my tumour, which would be taken to the lab for testing. The other two patients watched me as I got my belongings together, and part of me felt sad about leaving them, they'd become my friends in their odd little way. But I was off to the Heart Hospital, onto the next phase of my journey.