What a difference a week makes

I wrote this on Sunday, at a point at which I was still awaiting my diagnosis. This post tells the story of my growing symptoms, entry to hospital and biopsy. As I wrote yesterday the diagnosis has since come back as primary mediastinal B-cell lymphoma. I'll write more about that in a little while.


What a difference a week makes.

As I sit here in the Patients Lounge (their decision on the apostrophe, but I digress) with my iPad perched across my knee I can't help but stare out the window at the amateur cricketers already rolling their arm over despite the early hour on a Sunday morning. A few days back I was dressed in whites as resplendent as theirs, only mine were a bit looser fitting at the back and revealed a saggy pair of underwear. Still, make me wicketkeeper, put the whole field in front of the stumps and no-one would be any the wiser. Until I leapt up for an appeal.

At least I'm out of the white gown now, and my pyjamas. I'm actually wearing a rather natty check shirt from Marks and Spencer, and a pair of high-tech hiking pants from Kathmandu (the retailer, not the Nepalese capital, but I digress). I bought these pants in January on my honeymoon for hiking the Milford Track in New Zealand. For more than 50 kilometres over four days they kept me warm, protected and dryish as Melanie and I trudged through pouring rain, blustering winds and a steady slope. But for the past four days the only trudging they've done is from my hospital room to the Patients Lounge, with the occasional detour to the toilet.

Still, it's good to be out of the room I share with three others in the cardio-thoracic ward of The Canberra Hospital. The others in the room are a nice bunch, but sharing a room with them is a bit draining. To my right is a grizzly middle aged chap who's paying the price for a life of revelry. The Cougher's lungs have the wheeze of a smoker's emphysema and his legs are the recipient of a great big skin graft following an accident of some sort. Across from me is The Gaffawer, a knockabout 30-something bloke from Queanbeyan with some dragon tattoos and a silly laugh who seems to find almost anything funny. Not sure what's wrong with him but there's a great big tube draining fluid from his belly, so something's up. Then there's The Groaner, a grand old dame of 88 whose mind is lucid but his body is slowly falling apart. Her varied ailments are all morphing into one, she can barely move and her arms are so battered with bruises from needles that the nurses can't get a new one in. "Not very good vampires, are they?" The Gaffawer joked yesterday. "Still need to study more," was The Groaner's deadpan response.

This has been my world these past few days.

Hard to believe that this time last week I was walking along the Brisbane River the night after a friend's wedding. Melanie and I had been so eager to enjoy the wedding, eating more than we should and making stupid jokes with people we were just getting to know. It was a breezy and carefree weekend, shaking off the strains of the week and toasting a new life for a happy couple on the cusp of exciting things.

But even by that stage I had an inkling something was up.

A few weeks earlier I'd felt a bit of tightness in my throat. Just occasionally I'd find myself short of breath after some rather unstrenuous reading the paper. Or swallowing bite of dinner would leave me wincing, even if my cooking wasn't terrible. Or I'd catch a sight of myself in the mirror and see a bulging jugular like I'd just picked a fight with a neighbour, even if I'd done nothing of the sort. But there was a long weekend coming up and I didn't want to miss it, so Melanie and I had a weekend away in a cabin by the coast.

When we got back the tightness was still there, so I did some online hunting then went to the GP for his view. Glandular fever, I thought, or perhaps something strange with my thyroid. The doctor had a feel and a peek, and suggested a blood test for the thyroid and an ultrasound for the throat to see what was in there. I was busy at work and didn't see any need for a rush over a niggling pain, so I put it low on my list of priorities.

I went back to the GP the next week for the results and heard the worst possible thing (well, it felt like that at the time) - "We can't find anything wrong with you - the blood tests are fine, although sodium is a tad high, and the throat ultrasound was all clear." For just a moment I thought the doctor suspected I was a hypochondriac making this up to get off work or satisfy a demand for attention. I knew I wasn't, but the tests weren't backing my case.

The GP suggested a CT scan on the neck, throat and upper chest would be in order, but suggested I wait a few days, presumably to see if this thing sorted itself out.

But the symptoms were getting worse. I'd lie in bed and feel a rush of blood to my head, a surging pulse around my brain that could only be avoided if I slept with a stack of pillows under my head. I threw a ball at baseball practice and felt light headed like the ball had thrown me. And I bent over at the fridge to grab something from the vegetable crisper and nearly fainted, a response I've never had before to wilting bok choy.

Something was up and I had to work out what. I'm from Melbourne but live in Canberra, and my parents' circle of friends is filled with medical experts, some of them actually qualified. As I recounted my symptoms to them they would pass them onto the panel of experts and the feedback was alarming. I also gave them access to the scans and radiographer report, which for good or ill is now available direct to the patient. My mother read me the Riot Act - this was serious and I had to be more assertive with my GP. If I wasn't, she'd come up and bash heads together. I was trying to deny it to myself, but she was right.

I made another appointment with the GP and explained the expanded symptoms. I pushed back and sought an x-ray on my chest. The GP acquiesced and suggested an over-the-counter heartburn medication for good measure. Fine.

But the x-ray revealed nothing but a strange shadow to the right of the trachea. Was that the source of my pain? Maybe, but the panel of medical experts in Melbourne weren't convinced, and neither was I.

So I went to the wedding in Brisbane and tried to silence my nagging fears. With enough activity and a determination to get on with life this thing would sort itself out. Mind over matter.

But by the time I got back, the symptoms had got worse again. I woke up one morning with an absurdly puffy face and neck, looking like Bert Newton after an all-night marathon at Crispy Creme. The flabbiness left me struggling to open my eyes, peering out through slits studded with dried sleepy mucus. It was hard to head to the office and maintain my dignity, but I washed my face down and gave it my best shot.

On Tuesday - five days ago - I headed back to the radiologist to get the CT scan on my neck, throat and chest. As I lay on the bed the clinician injected the iodine solution into a vein on my left arm and slid me into the hole of a giant metallic doughnut. As I stared up, the images of blue skies and birds and tree branches painted onto the ceiling gave me a sense of forced joy that made me uneasy.

I went home, drunk plenty of water to flush out the iodine from my body and went to sleep.

A few hours later I woke up and groggily reached for my phone. Time to check if the results from the scan had been posted. I logged in and saw that they had been, so I sharpened my mind and took in the detail. The radiologist's reported started gently enough.

No enlarged lymph nodes in the neck, parapharyngeal fat spaces are normal, digestive tract normal, vocal cords symmetric, no obstruction in neck vessels. What a pretty neck I must have.

Then it took a sharp turn:

Within the chest there is a superior mediastinal mass.  The mass measures 9.8cm x 8.4cm x 8.4cm.  The mass is heterogeneous in appearance with likely areas of necrosis centrally.  The mass is compressing the SVC and this is likely the cause of the patient's symptoms.  Multiple venous collaterals are noted to be opacified within the mediastinum and chest wall on the left relating to this lesion.

One need not be a medical expert to realise this was serious. Unexplained masses the size of an apple in the chest tend be rather serious. Some searching online decoded some of the medical speak. The mediastinum, it turns out, is a cavity in the upper chest that contains the heart and its vessels, the esophagus, the trachea, the thymus and assorted other vital things. The SVC, Wikipedia reveals, is the superior vena cava, a 24-millimetre diameter vein that carries deoxygenated blood from the upper half of the body to the heart. My symptoms - rush of blood to the head when lying down, dizziness when bending over, bulging neck veins and Crispy Creme puffiness - could be explained by this vein being compressed.

(The medical report then went on to breezily note that my lungs were clear, the upper abdomen was fine and there is "no suspicious focal bony lesion". "Apart from that, Mrs Lincoln, how did you enjoy the play?")

On one level, this knowledge was a relief. No, I wasn't making it up. No, it wasn't just in my head (in a manner of speaking). I had real hard medical evidence that there was something wrong with me. But that something was pretty damn serious and wouldn't go away on its own.

It was too late in the day to do anything, so I shared the news with Melanie and my parents, and planned my next move.

The next day, Wednesday, would need to be a day to Get to the Bottom of This. I went into work the next morning to tie up some loose ends. I knew I'd be away for a few days at least and didn't want to make things any more difficult than they had to be. I was self-conscious when I saw people in the office, aware that my face looked strange. I contacted the GP to make an appointment to plan to next step, but the earliest appoint was at was 2pm, so I took it.

But by 1pm the symptoms were getting worse. The vein in my neck was bulging again, swallowing was painful and the puffiness looked like another Crispy Creme binge. I went in early and spoke to the receptionist. I was determined to go to the hospital emergency ward, I explained, but wanted to see the GP first if I could. My symptoms were obvious enough that a slightly startled receptionist ushered me to a treatment room out the back.

She interrupted the GP's appointment with another patient and he came to see me. Clearly he was worried, most likely for my health but also perhaps for his medical liability insurance. The GP gave me an oxygen mask, checked my vital signs and gave me some words of reassurance. Yes, heading to emergency was a good idea, and yes I would be taken there in an ambulance. My penny-pinching plan to catch the bus was dashed. How about a taxi, I asked hopefully. Ambulance, he insisted.

Within a quarter hour two roguish paramedics were at my side. Again they checked my symptoms and took my vitals. For good or ill, they weren't far off healthy and my manner was calm, even if I did feel a bit anxious about what lay ahead. Once the paramedics were there they were determined to get me in the van. I was happy to go, and even walk myself the 30 metres to the ambulance out the front. Not possible, they insisted. Better that I lay on the rolling bed and they take me there.

So on I jumped to the bed sitting in the waiting room of the GP clinic, with startled mothers and their sniffly children huddled in the other corner looking on with curiosity. The two roguish paramedics hitched up the rolling bed with a guttural grunt and then sought to navigate the tight corner to the exit door. After a few false starts I repeated my offer to walk to the ambulance, but again it was refused. Our set of wheels, our rules, was the message.

Off we went to The Canberra Hospital (yes, with the slightly cocky definite article at the start), slightly further than the nearest hospital, but one that had the cardio-thoracic facilities I would probably need. With U2 coming through the tinny speakers, "Beautiful Day", I think it was, we headed down Northbourne Avenue. Staring upwards I saw the trees and street lights at an angle I'd never seen before.

The next few hours was a flurry of activity after I arrived at emergency. I'd stabilised a bit and so my symptoms weren't as obvious. I slid down the triage list as the doctors and nurses looked at me, and then up the list as they studied the radiologist's report my GP had helpfully printed for me. At one point I was demoted from the inner belly of the emergency ward down to the waiting room for walk-in cases. "But with a prominent seat where the nurses can see you," the warden said to soften the blow of my triage demotion.

Eventually I was admitted. Helpful young doctors came to speak to me to find out more. In truth, a mass in the mediastinum is not on its own a cause for a visit to emergency, given these things move slowly and the treatment takes place over a course of months, not days. But the pressure the mass was placing on the vein from my heart was a big deal, and an urgent one, that needed swift attention.

I was checked into the respiratory ward, more because there was a spare bed there than because it suited my ailments, and settled in for the night. Melanie and my mother had already made it to my bedside - my mother having flown in from Melbourne - and we were taking stock.

The evidence was that I had a giant lump in my upper chest, pushing against a heart vein and sitting pretty close to other vital passages. We needed to work out what it was and what to do about it. And we needed to find a way to ease the pressure in the mean time.

Behind the scenes the doctors were fighting their own battles. Who should treat me? How should I be treated? When could it all happen? And when could they go home to their families.

To ease the pressure on the heart vein I was given a steroid, which despite its Olympian reputation has the effects of reducing swelling rather than increasing it. Within hours it seemed to work, and I was breathing and filtering blood much more easily.

As for working out what was in the mass in my chest, the first plan was for a small biopsy to take a sample. Then the surgeon got bolder and decided he wanted to take a larger chunk, about the size of a 50-cent piece. This would require a general anaesthetic and invasive surgery, with two dirty great cuts to my chest - one to take the sample and another to drain away the fluids disturbed in my chest. Clearly I'd be leaving this place with scars.

But cut me open, Doc - let's see what we've got.

And so that's how things have stood since Thursday afternoon. My physical recovery from the surgery was good, helped by the availability of an injection of a painkiller direct into my arm at the push of a button - my push of the button. Soon the painkiller was removed, and the oxygen mask, and the saline drip, and eventually the tube draining the unpleasant fluids stirred up inside my chest from the procedure.

By Friday afternoon I was mobile once again, able to wander around the ward, use the bathroom on my own and create a comfortable groove on one of the old leather couches in the
Patients Lounge.

Now I'm playing the waiting game, seeking to find out just what I'm up against. What is this mass of cells? Is it benign or malignant? Has it spread? Will it kill me?

There's no good outcome from this wait - there's just bad and worse.