Sunday, December 18, 2011

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.

Saturday, December 10, 2011

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!

Tuesday, December 6, 2011

Curveballs and other c-words

(Written on Friday, November 25, 2011)

One minute you’re a healthy, 29-year-old girl, with your dreams and aspirations ahead of you, living a semi-normal life of working, partying, travelling, discovering things about yourself and others and exploring this wonderful world in a foreign city, ready to face the full brunt of your 30s. The next minute you’re being told you have a terminal illness growing inside you and your whole existence suddenly is thrown onto a rollercoaster of hospital beds, scans, tests, surgeries, needles, doctors, radiologists and life-changing diagnoses, and suddenly the future isn’t so crystal clear anymore.

It’s been two weeks today since I took myself to a public London hospital because I had some abdominal pain that wouldn’t go away. After two unsuccessful trips to my local GP, I decided that I wasn’t going to sit around and feel crap anymore. I walked out my front door, I took a bus, and another bus, filled out the form at North Middlesex Hospital A&E, and relayed all my symptoms to the nurses. Perhaps one of the smartest decisions I’ve made in my life. Never in a million years could I have foreseen the events that followed: an X-ray, a CT scan, the revelation of an abnormal growth in my chest, a probable diagnosis of cancer, and an admission to a hospital bed. But when I think what might have happened if I hadn’t have made that decision, and if the nurses and doctors hadn’t been so vigilant … well it’s not worth thinking about.

The last two weeks have been a crazy rollercoaster. I have had good days and bad days. I have cried, I have laughed, I’ve been lifted up, I’ve been knocked over like a pile of bricks, I have been amazed, inspired, touched, overwhelmed. Physically, I have been poked, prodded, cut open, jabbed, scanned, tested, pricked, injected and pushed by every medical instrument known to man. I have so many holes in me I feel like I’m going to start leaking like a sieve. But I think the most amazing thing about all this is the overwhelming support I have received – not only from my amazing family and friends in Australia, but all the people close to me here in London, who have helped me get through what has probably been the hardest time of my life. It is truly amazing that under the circumstances I actually feel so lucky more than anything, because knowing that you have such amazing and supportive people around you is everything. With all this love around me, there really isn’t much room to feel despair.

On top of this, I have been so amazed and inspired by the wonders of the medical industry –particularly the people working in it. I can’t for a minute fault the care I have received here in the UK – I feel so overwhelmed with gratitude the way every single doctor and nurse I have seen has bent over backwards to make sure I’m OK and get the best possible treatment, quickly. Yeah, it’s their job, but it’s also more than that. It’s my life. It’s an amazing feeling, like having your own personal army, formed by a group of strangers, who are standing over you saying ‘You’re 29, you’ve got something inside you that could kill you, and we’re not going to let that happen – not under our watch’. From the haematology consultants who first came to me in A&E, to the nurses and amazing surgeon at the National Heart Hospital, to the oncologist and lymphoma nurse and all the staff at UCLH – simply everyone has been so helpful to my mother and I and I just can’t be any more full of gratitude. Thanks to them, the healing process has already begun and I can’t ask for more than that.

The facts are this: I have been diagnosed with non-Hodgkin’s diffuse B-cell lymphoma. Yes it is cancer, but it’s the ‘cancer you want if you ever get cancer’. It’s in my chest. It’s huge. It’s spread to other parts of my body (liver, lungs, kidneys and pancreas). But the prognosis is still good – right from the start doctors have told me it is very treatable, and have health and age on my side. I will have to undergo six months chemotherapy and maybe additional therapies if that doesn’t do the job. But I am confident, and so are the doctors. I am going to beat this.

Receiving this news and going through this in London has been difficult, especially being so far away from my immediate family. But remarkably, I have never felt alone. My amazing mother flew over right away to see me and I am so filled with gratitude – she might not realize it but I couldn’t have done this without her. To see her walk into my hospital room just hours after my biopsy, when I felt at my most alone and vulnerable, was perhaps the most overwhelming wave of love and gratitude I have ever felt (it never fails to make me cry). And my friends here have also rallied around me, and I will look at my last days in London with fondness. And while I haven’t really had much time to reply to everyone, I am so grateful for every single message of support that has come my way since this all happened – each one has given me strength.

Perhaps surprisingly to some, I’ve never really had that moment where I asked, “Why me?” I’ve been around long enough to see many people close to me fight (and not always win) their own cancer battles, and friends of friends, family of friends … I truly doubt there is a single person in this world who hasn’t been touched by cancer in some way. How could I be so selfish to think this is only happening to me? No, life just deals its cards this way and you deal with it.

As of today, the chemotherapy drugs are now working their way through my system; I can feel them surging through my veins, launching ninja kicks at the lymphoma cells in my body. If all goes to plan with the chemo, and there are no complications, I should be hopping onto a plane to Australia two weeks from now. It’s going to be a long two weeks but not a day passes without me imagining my arrival at Melbourne Airport, seeing my wonderful family at the terminal, and going outside to feel the Australian sun on my face. Getting home is my first immediate hurdle, and I know there will be many more to come. One step at a time.

I am going to blog my experience here, not because I want sympathy or sadness – but because I want people to look at the positives of this. I never expected cancer to show up in my life, especially not now, but being confronted with it makes me realize that it is a reality that many, many people deal with - and it doesn’t need to be hidden, or swept under the carpet, or avoided like a taboo subject. Yeah it sucks, but it's real, and all I can do right now is tackle it head-on.