Looking forward, looking back

As the year is nearing to its end, and I've now reached my one-year anniversary of arriving back to Australia after my diagnosis, I'm going to get reflective. I mentioned in a previous post that it's far more important for me to look forward than back, but now as a really difficult year draws to an end and I can look at it with a bit more perspective. Additionally, one thing I have never actually got around to documenting on my blog in detail was my last week in London and my journey home (and besides, the world's going to end soon, and I still have many more blog posts to publish). 

In the beginning ...

I started my first round of chemotherapy in London on Friday, November 25, 2011. The whole process was very rushed - exactly two weeks after I had walked into an emergency room with some abdominal pain I found myself hooked up to a drip getting toxic drugs pumped into my veins. I don't think anything could've prepared me for what lay ahead. I remember a group of cancer patients in their headscarves and beanies sitting near me in the clinic casually discussing their stem cells and when they'd be "getting them back" and all felt a little surreal. Little did I know at that time what a big role stem cells were going to play in my own journey. This was when I entered the parallel universe of cancer treatment, but I had no idea how hard it was actually going to be. 

That first round of chemo was really difficult, probably one of the worst ones I went through, physically and emotionally. The oncology nurses sent me home with a list of symptoms to look out for - if I got a fever, diarrhoea, vomiting I had to call the clinic immediately, no matter what the hour. I spent the first few days after chemo feeling relatively OK but I was a bit on edge about everything; I just didn't know what to expect.

A few days into chemo I got my first intrathecal, a chemotherapy injection into my spine. The chemo travels through the spinal fluid and to my brain, to protect it from the cancer.  I had to curl up in a ball while the doctor stuck needles into my spine. The worst part is the stinging of the anaesthetic they inject first that numbs the area before they inject the chemo. Intrathecals are also annoying because you have to lie flat in bed for at least an hour after it's done to prevent headaches. The recommended time is actually four hours but there's no way anyone was going to keep me in bed that long. I have now had six intrathecals all up and hated them all, they were just time-consuming and annoying. One of them, I think it was during my fourth round of chemo, gave me a lot of problems - ringing in my ears, heavy limbs and neck pain, it was just terrible. 

On the following Monday, I said goodbye to mum who had to take a very difficult flight home, alone, to attend my brother Sam's graduation in Australia. The next day after his graduation, Sam was going to take a flight to London, spend a week with me, then fly with me home. It meant I was going to have about three or four days in London on my own, and all I can say is thank God for Matt who had taken several days off work because it was around then that things turned pretty grim.  

Wednesday and Thursday I hit rock bottom. Thursday I couldn't keep breakfast down and ended up retching it up in the shower. I was pale and weak and kept having to go lie down. "It's like a really bad hangover," I said, "without the fun part." On top of this I was emotional wreck, which was probably a combination of the sickness making me feel so frustrated and helpless and my hormones wreaking havoc because of the fertility treatment I was on. Also, having to say goodbye to Matt was weighing really heavily on me. There were lots of tears at this point, lots of emotion. 

Friday I felt a bit better, and that night Matt and I went for a walk down Green Lanes with the housemates' dog. I realised this had been the first time I'd been outside since Tuesday. It was nice to get some ‘fresh’ air though not sure there’s much fresh about the air in Harringay, except for the fact it’s cold.

Saturday was horrible, I was back to feeling awful again. Weak, nauseous, emotional. Matt went home because he hadn't even changed his clothes in three days. I’d really enjoyed the time we’d got to spend together, even if I was in a bad state for a lot of it. We still managed to share some laughs, and tears, and I was impressed by his cooking skills. He went home after we shared lots of hugs and tears.

Sam arrived from Heathrow that afternoon, and my housemate picked him up in his car from Manor House station. I was happy to see him, but too fatigued and sick to really show it. It was a pretty mellow weekend, I couldn't do much but lay around.

On Monday, I had to head into the UCLH clinic for my routine blood tests. I woke up feeling terrible once again. I was pale, I looked and felt horrible. I spent the car ride to the clinic with my window down, wanting to throw up. The tests showed that my neutrophils were just sitting under 0.5, which meant I was neutropenic and at risk of infection. The lymphoma nurse sent me home with three days' worth of GSCF injections to boost my white cells. We got a cab back to Harringay, and I when I stepped out of the cab I threw up, right there on the street. I had to shut myself in my (tiny) room and avoid my housemates as one of them definitely had a cold of some description. 

A couple of days later I was feeling much better. My white blood cells had soared. A chest X-ray showed the tumour in my chest had shrunk significantly. This was the first time my lymphoma had been exposed to chemotherapy and it had really knocked it around. The doctor was happy for me to fly home. It felt awesome, but so scary at the same time. It was really happening, I was leaving London. Amazingly I managed to pack my whole life back into my backpack and a couple of extra bags - I had really accrued very little in my 18-month stay in the UK.

The care I got in the UK via the UCLH was exceptional. My lymphoma nurse Barbara was an absolute gem and really went above and beyond to ensure I was OK. She gave me a lot of her time and to this day we are still in contact. 

It was a cold, cold day I left London. It was Saturday, December 10, 2011. Saying goodbye was difficult. On the Friday night I'd had a wonderful farewell with friends in Stoke Newington until 3am. Still a rather subdued affair compared to what it would have been had I left in different circumstances. But I was happy to just relax and share some laughs with good friends. The perfect way to say goodbye.

Saying goodbye to Matt was really, really hard. We were on our way back from dinner in Islington and he got off the 341 bus at Church Street and walked away, down the dark street and I didn't know when I was going to see him again. I was already crying at Newington Green, and I cried all the way home. Sam and I were running a bit late to get our cab to Heathrow, and this was not helped by the fact that there was a car, engulfed in flames, on Green Lanes, which had stopped all the traffic. We got off the bus and walked home, as a crowd of people just stared at this burning car. A rather odd sight and end to my life in London. We grabbed all our luggage and piled into a cab. As I took my last bag, left my keys on the shelf and went to close the door, I hesitated for a moment, took one last look at what had been my crazy, but warm home for the past year. I was certainly going to miss it, and the people that lived there.

Bye London, I shall miss you

The roads to Heathrow were jam-packed with traffic and the cab was barely moving. I was having some major anxiety that we were going to miss our flight. After all these delays, re-booking of flights, all this drama, we were going to miss that plane home because of traffic? The cabbie ended up veering off the main motorway and taking a "short cut" to the airport along all these backroads. I have to say, I had my doubts but I have to hand it to him for managing to get us there on time. 

On arrival to Heathrow, we were greeted by a Qantas staff member who told us we had access to the British Airways Galleries Lounge and that we had been upgraded to business class. This was a big surprise to us; we hadn’t expected this kind of treatment. I know that one friend emailed the Qantas executives explaining my situation and my brother had also called them to see if maybe we could avoid having to wait in crowded areas or maybe get more comfortable seats on the plane. But being upgraded to business class was pretty awesome. We had our own little cubicles and seats that went all the way down to horizontal, which even had a massage option (which was actually rather uncomfortable). We had ample leg and storage room, decent food, private TVs with top-quality headphones, bubbly on lift-off - we even got complimentary pyjamas and an amenities kit. The staff were falling over themselves to make us as comfortable as possible. It was pretty amazing and I'm pretty sure that's the first and only time I will ever fly business class because I have looked up the prices and it does not come cheap. I managed to sleep a lot of the way home and it just made our flight so much more bearable. Really have to hand it to Qantas; they made a difficult flight a lot easier.

Me and Hippo Jo in transit

I can't even describe the feeling of coming home ... it was like a dream. Seeing my family at the airport, being welcomed by Melbourne's wide streets and breezy sunshine; it all felt so strange but familiar. Another amazing surprise when I got home to my parents' place was my old bedroom. In the weeks leading up to my arrival, my siblings, and uncle and cousins had worked tirelessly to repaint, recarpet, refurnish and decorate my old bedroom which looked absolutely fantastic. Everyone had also printed out a collection of photos which they'd arranged on the wall. A lot of time and effort went into it and I was really touched. What a homecoming.

Me, having just arrived home, and my photo wall

And the rest is history. 

In the past year and a bit:

• I have had bucketloads of chemo. Three rounds of R-CHOP, 3 rounds of Hyper-CVAD, 6 intrathecals (chemo injected into my spine), 2.5 rounds of Gem-Vin, one round of high-dose chemotherapy (cytarabine, etoposide, carmustine, cyclophosphamide) one round of low-dose chemotherapy (rydarabine and melphalan). This also doesn't include the countless number of oral meds I have had to take daily all year.
• I have had an autologous stem cell transplant (April) in which my own stem cells were collected and returned to my bone marrow after high-dose chemo.
• I have had an allogeneic stem cell transplant (December) in which my sister's stem cells were collected and delivered to my bone marrow after low-dose chemotherapy. 
• Had five infections during chemotherapy, all of which I was hospitalised for. 
• If you added up all the days I spent in hospital, including those as an outpatient, I reckon they'd take up half the year. Easily. Maybe more.
• My hair has fallen out four times. 
• I have seen some wonderful places with some wonderful people. I have travelled to Perth/Margaret River, Brisbane, Sydney three times, Wollongong, the Hunter Valley, the Grampians, Meredith (Golden Plains), Falls Creek, Daylesford/Hepburn Springs, the Great Ocean Road, Wilson's Promontory and the NSW Far South Coast (Merimbula/Eden). 
• I climbed a really big tree, went snowboarding, attended a couple of festivals and wrote and recorded a song.

And throughout everything my family, especially my mum, have been right by my side, have been my rock in times of darkness. In this respect I have been very lucky. Actually, I'm pretty damn lucky to even be here today, when it comes down to it, and I'm thankful for each day.

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.

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 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.

Home is wherever I'm with you ...

I’ll go into the details of my diagnosis later, but first I want to bring people up to speed to what is happening now. I’ve reached the end of the London leg of my journey, and maybe I will look back at that part as the hardest, but most life-affirming bit of the whole experience. It’s hard to say yet, I know I’ve got a hard road ahead of me, but at least I know now what I have to do.

So, in a nutshell, chemo sucks. It’s like a really bad hangover, but without the really fun ‘night before’ part. But I am well-acquainted with hangovers so I guess I’m the best equipped I can be to deal with it all. After a bit of a rough week, I am now on Day 14 of my chemo and things are finally on the up. The last week has been full of: impromptu nana naps, nausea and vomit (including one very public roadside spew – shamefully not the first time this has happened in my life, haha), paracetamol-defying headaches and just a general weak, crap feeling. The extreme fatigue means I haven’t been able to do much (a nice excuse to get out of housework!), but this is rather frustrating for someone who is very independent and not used to doing so little. Living in a shoebox room in a London share house in the middle of winter hasn’t exactly made it easier. During my first days of sickness I was also an emotional wreck (I spent most of Thursday sobbing into my boyfriend Matt’s shoulder, “I’m going to miss you soooo much!”) as I think I simply wasn’t emotionally prepared for feeling so helpless. Everything just hit me so hard.

Blood tests on Monday showed I was neutropenic (sounds like a name for a band or album). This meant my neutrophils, the most important kind of white blood cell, were dangerously low, leaving me susceptible to infection. To ensure my white cell count is as high as it can be for my flight on Saturday, the doctor prescribed me a hormone that would give the cells an artificial boost throughout the week. It’s administered by injection but I didn’t fancy stabbing myself in the shoulder or abdomen, so I’ve left that to the professional, namely my brother Doctor Sam (who arrived here from Australia last Saturday). The injections have been working so I guess Sam passed that test!

But every cloud has its silver lining, and I’ve finally come to my reward. Yesterday I saw my London oncologist for what will be the last time. An X-ray revealed that the lump in my chest is now a smaller lump. The doc said he was ‘very happy with the response’. My blood tests showed my white cell count had jumped from 1.3 to 4.6 (go white cells go!) in three days. The doctor said he had no problem with me getting on that plane on Saturday, and seemed reassured by the fact I would be travelling with a doctor, even if he has only been a doctor for a week.

So I am coming home! Finally! It’s probably going to be the most horrible 24-hour flight of my life but it’s going to deliver me to the people that matter to me more than anything in the world. I’m at peace with leaving London; I feel I have unfinished business here and I know I will miss the place and the people in it, but it will always be there to go back to. It’s just so much more important to be around my family right now.

It’s Friday today and I’m feeling pretty good. Tonight is my last night in London, which will be spent with the many awesome people I’ve met here along the way. It’s six degrees today and will be five tomorrow, which makes it easier to leave … Australian summer, I'm ready!