Sunday, January 22, 2012

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.

Thursday, January 12, 2012

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.

Tuesday, January 3, 2012

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 23rd 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 24th, 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.