Wednesday, October 28, 2015

Countdown to chemo

Today I start my chemotherapy treatment, ready as I'll ever be to combat this disease and reclaim the health until recently I took for granted. This piece explains some of the steps along the way as I prepared my body and mind for what lay ahead.


The week before treatment started would be a flurry of tests as we sought to work out just what we were up against. The latest in diagnostic science would analyse every part of my body in every way to find out whether the lymphoma had spread to elsewhere. Regardless, the treatment would be similar through the chances of success less certain.

First up was the PET scan – as the internet explains, a positron emission tomography (PET) scan is a type of imaging test. It uses a radioactive substance called a tracer to look for disease in the body. Canberra has just one PET scan machine, and thankfully on Thursday morning it was at my disposal.

I happily admit to my support for all things nuclear, a source of science that has brought great positives to the world even as human have used some of its potential for ill over the decades. But the prospect of having a radioactive substance injected directly into the body gives some pause for thought. For a moment I squirmed at the notion, but then thought of the greater good to my health, for the short term at least. (The long term implications remain to me seen – the dosage of radioactivity is pretty hefty, and repeated exposures over the course of a lifetime could do lasting damage. It’s a risk I will have to take.)

Under the care of the nuclear medicine specialist I lay back in an armchair as a cannula was put in my left arm. For 20 minutes I sat back in darkness, my body nuzzled in warm towels as I drifted towards restfulness. Bliss. Then the specialist returned and a tube from the wall was hooked up to the cannula.

A soothing voice gave me a gentle warning that the tracer was now being injected, and it might feel a bit cool as it worked its way through my body. The fluid now entering my veins was a radioactive glucose, prepared at the Lucas Heights nuclear facility in southern Sydney. Regular pulses injected the glucose for about a minute as I continued to recline in the armchair, surrounded in darkness.

Slowly I felt the repulsive goo work its way through my system. The liquid felt thicker than my blood, gradually crawling up my left arm to my shoulder. It was dense and heavy, slightly cool, alerting me to each new part of the body that it reached. Then it spilled around the heart and hit the neck and throat. It felt like it was taken extra time to fill around the mass in my throat. Gradually it crawled to my temple, then to my right side and down my arm. Eventually my groin and legs were enveloped and I was entirely irradiated.

For nearly an hour I lay back as my natural circuitry spread the foreign object throughout my body, mixing with my blood so that it was even throughout. The sensation remained sickly, but I cannot tell if it was genuinely because of the nature of the fluid inside me or because of some psychological repulsion at a foreign object being so intimately incorporated into my being.

As my eyes grew heavy and I neared sleep my slumber was broken by a specialist telling me it was time to move to the next stage. I roused myself from the comfy arm chair and headed to the scanning room, where the images would be taken.

I was laid down on a platform, some support offered beneath my knees and a brace around my arms to keep them in position. The machine takes hundreds of images, some of them as tight as three millimetres from the next, so squirming around can significantly undermine effectiveness. Instead, the best thing is to be as still as possible as the images are being taken. Being in a deep dose certainly
helps.

Once I’d settled on the platform the specialists left the room and the machine was ready to do its thing. The platform slid through a vast metallic doughnut, able to capture images from all sides. Slowly the platform would slide me from one end to the other, pausing regularly for shots. Heavy mechanical sounds told me that there was plenty going on inside the machine surrounding my body.

Most of the time I kept my eyes shut, although on the odd occasion when I opened them the machine was unnervingly close. Were I prone to claustrophobia that might be a worry, but thankfully I was happy just to shut my eyes and zone out.

Twenty minutes later the kindly specialist came in to inform me it was all over. I was free to step up and take a seat in the waiting room. A cheese-and-tomato sandwich and an apple juice, the first things I’d eaten all day, were on offer. I browsed through a copy of an outdoor living magazine, the active adventurousness it advocated seeming almost pornographic given my state of mind and body. Still sleepy, I was wheeled back to my ward to await the outcome a few days later.

Other tests were not quite as dramatic. I had a CT scan on Friday at another site in an effort to gain further information on the spread of disease. Again my body received an infusion, this time of iodine, and I images were taken from all angles. But this one came acropper when it emerged that my body had not recovered from the biopsy surgery a week earlier and I had excessive amounts of oxygen circulating in my body. This oxygen, a nasty combination of a pneumothorax (gap in the lung) and subcutaneous emphysema, was messing with the test.

Clearly the results was causing concern for the routine operator conducting the test, who contacted his supervisor. As I lay flat on the CT scan bed he approached me and asked a rather unnerving line of questions. Had I been in hospital recently? Had I been in a fight lately? What was really going on?

Turns out the gap in the lung was a similar symptom to that experienced by many people who have recently copped a blow to the chest, and created a wave of suspicion that I had been involved in foul play. In my slightly addled state I informed the supervisor of my recent health travails and the biopsy surgery a week earlier. This appeared to satisfy his curiosity, and after consulting with my cancer specialist at the hospital he advised me to visit him that afternoon for a check-up. Fair enough. The MRI scan planned to follow immediately afterwards would need to be put on hold, he explained, because the images would not be much use.

I also undertook a bone marrow biopsy. It was a process I was warned would be quite painful (one person made a comparison to childbirth) but in the end was rather tame. Perhaps that was the impact of the mild sedative and the local anaesthetic. In the end I was I only gently moaning as I lay on my side while a pair of friendly medicos ground into my Iliac crest at the base of my spine to extract the requisite marrow. The mild pain was further relieved by the enthusiasm of the technicians at the quality of the sample they had extracted. We’ll know the outcome in a few days.

During the week ahead of chemo Melanie and I were forced to face the vexing issue of the risk of reduced fertility, or even sterility, given the chemicals used in the treatment process can do lasting damage. When you’re facing a personal existential challenge just getting to the other side is often objective enough but it’s nice to know that things can be done to preserve quality of life. To that end, we were encouraged to work with a fertility clinic to bank some semen should we (or indeed I) want to access it later on. The wisdom of this approach had been advised to me by others, and it was one we decided to follow.

Each step of the way through this whole process our hands were held by the incredible people at the Canberra Regional Cancer Centre. I don’t wish for this blog to be some morbid “review” of the place, ranking alongside Chinese takeaway on Yelp (“nice atmosphere, great service and I left without a single tumour! Three stars”) but I do want pay tribute to good care when I get it.

In the days ahead of chemo, the doctors and nurses have been a great source of knowledge, support and care. It is comforting to know that whatever arises they have it covered.

A chemo education session told me much of what I needed to know about what lay ahead. The mix of drugs that would be injected into my system would be tough and run a significant risk of adverse reactions. But there drugs to combat those reactions and my health would be monitored closely each step of the way. All sorts of things that had once seemed innocuous – being with a group of people, eating unpeeled fruit, flushing the toilet – now needed great extra care. And I needed to listen to the signals my body was sending far more acutely than I normally would. But regardless, I could get on with life, exercising, enjoying good food, even the occasional tipple.

When it comes to administering the drugs, the doctors decided to establish a PICC line (a peripherally-inserted central catheter). A nifty piece of medical science, this tube would enter my body on the inside of my left elbow and extend all the way up my shoulder to a vital area near my heart. It makes it easier and safer for the drugs to circulate through the body without me needing constant needle pricks and the risk of some of the smaller arm veins being overwhelmed by the drugs.

At the exit sits two tubes which can be used both for fluids going in, most often the chemo drugs, and bloods coming out as required. Once it’s in, it can stay there for months and beyond. Given the pocking and prodding I’d had over the past two weeks, a long-term solution seemed like a good one to me.

With the deft touches of people who have done it many times before, a pair of medicos lay me flat while they rubbed a gentle anaesthetic on my arm. Guided by an ultrasound they found the pathway up one of the veins of my arm and methodically passed it through. Given no nerve endings sit on that part of the body, the pain was minimal. A few days later a slight feeling of tightness remains in that arm, but that’s probably inevitable given the object now inserted in my body. I suspect in coming months that PICC will become my friend, and lifesaver.

Over the course of the week it has been tough to find moments of great mental clarity. On paper, the time before the chemo drugs are administered should be one of clear thoughts and plans for the future, but the reality for me has been a bit different. The lingering effects of the biopsy surgery a fortnight earlier has left me with some breathing difficulties, the pressure put by my tumour on the superior vena cava of the heart has required a steroid, the bone marrow biopsy has left a dull pain in my lower back, my body is battered and bruised from injections and the PICC line in my left arm has taken some getting-used-to. All up, I find myself so focused on the aches and pains of my body that readying myself for the next stage is tougher than I’d hoped.

But regardless, a PICC line inserted, my head filled with the medical science of treating lymphoma and the final test results on metastasis coming down the pipeline, I am ready to take the plunge into chemo. I do so with a mix of enthusiasm and anxiety, but comforted by the fact I am among a great number. Today I will head into the Cancer Centre, be dosed with drugs to see how my body responds, and slowly return to the health I once took for granted. Wish me luck.

The PICC line running up the inside of the arm should make treatment a whole lot easier.


Sunday, October 25, 2015

This is not a drill

Right now I'm part way through the battery of tests that inevitably follows a cancer diagnosis. It is still too soon to know if the lymphoma has spread. This post, enhanced by the pleasing effects of a mild steroid, captures the big reveal last Tuesday when I learned the result of my biospy, and some of my early reflections on the experience. At the moment I'm at home mustering my strength ahead of the start of chemo on Wednesday.


While sitting idle in my hospital bed awaiting the results of biopsy, in my head I had an image of how a patient got The Big News.

I pictured notification from a friendly nurse that I was expected at an appointment an hour or two down the track.

I pictured bringing together my wife and parents.

I pictured walking into a tastefully decorated room in the hospital, fresh flowers and a box of tissues on the table, a comfy chair awaiting me.

I pictured a collection of kindly hospital-scrubbed experts sitting around the table, there to meet every facet of my curiosity.

I pictured being gently broken the news and then slowly being supported by the experts around the table to care for me.

I pictured calm words of reassurance – “This will all be okay”.

Sure, the whole scene would be drenched in tears, but it felt right.

The reality was a bit different.

Last Tuesday morning I was laying in my hospital bed reading The Economist. Suddenly a young doctor, a junior of my main doctor, wandered to my bed side and pulled the blue curtain behind him to give us the illusion of privacy in a room shared with three other patients. “Ah, right, so we’ve got the results from the biopsy in,” he ventured with a moment of eye contact. “Looks like lymphoma,” he said, leaving the words to hang in the air.

“Holy moly,” I thought. “This is the news. This is the cancer. This is the thing I’ve been mulling over for days. And I’m here on my own reading The Economist contemplating my breakfast order.” I kept my calm and let the news wash over me. The process may have lacked ceremony, but it was information I’d been craving.

I imagine patients react in all sorts of different ways to been told news like that. Some rush to anger, others to denial and others to grief. Some, like me, head to curiosity. Perhaps it’s a defence mechanism, but to put some emotional distance between me and the problem I was confronting seemed sensible. If I could treat it like a tricky problem of logic rather than one of life and death, that might make it more bearable. So quickly I jumped in with some questions. Do we know what caused it? Do we know if it’s spread? How do we treat it? What do we do from here?

Understandably at this early stage the answers to most of those questions were beyond reach. We were looking at a non-Hodgkin lymphoma, a comparatively common occurrence. The cause would likely remain elusive, but treatment was definitely an option. Beyond that, I’d need to wait for my haematologist, who would come by later in the day to fill me in on more details. My wife returned to by bedside for the tail-end of the conversation and caught the details. Then the young doctor headed off to break other life-changing news elsewhere, and left us to mull over the realities of my new existence.

Right. So this is not a drill. We can now discount the fantasy that this is all a big mistake and that I really did have a sore throat best treated by gargling lemon tea and honey. This was lymphoma – a cancer – and if I didn’t fight back it would destroy me. I was facing a test of character as well as health, and it would take all of my inner resolve to meet that test. My wife and I shared a tender moment as the situation sunk in. The Economist didn’t hold nearly as much appeal as it did a few minutes earlier.

The next few hours was a daze as we waited for more information from the haematologist. We spread the world to the people who needed to know and sought to gather some information of our own from the internet and other experts that we knew. But knowing so few of the facts at this stage meant the search was fruitless. We would have to wait.

So instead we sought to map out what this would all mean. A change of lifestyle, a change of career plans, a test for relationships with wife and parents, an abandoned holiday plan, a hit to personal finances. All these ripples of consequence emanating from the stone (well, mediastinal mass, really) that had been chucked into the pond of my life. It was disturbing to think of all the sudden change, but then strangely comforting to know that there would be so many people around to help my with the transition.

That afternoon we met my haematologist, the blood cancer specialist who was there to cure what ails me. My charming doctor filled my mother and me in on the detail. This was a non-Hodgkin lymphoma, he confirmed – primary mediastinal B-cell lymphoma, to be precise. Yes, it was unfortunate, but it was also reasonably common and quite treatable. He presented me with a page from a recent report from The New England Journal of Medicine on that particular lymphoma, which included the eye-catching claim that a survival rate of 95 per cent over five years had been achieved with a particular course of treatment.

Chemotherapy would be the course of treatment for me – six to eight rounds of three weeks each. It would be a cocktail of chemicals administered intravenously, complemented with some oral medications to ease the side-effects. He ran through the different drug regimens on offer like a cocktail barman – there was R-CHOP and EPOCH and a few others, each with subtle differences. He had one in mind, but we weren’t sure quite which one it would be.

If I wanted it, treatment could be at the new cancer centre attached to The Canberra Hospital, adjacent to the very building in which I now sat. Here they had leading care, leading facilities and leading nurses, and an army of specialists willing to work together to help me battle the beast. Sounded pretty good to me.

It was then that I ventured my most na├»ve question. I had not altogether given up hope of following through on a long-planned trip to Hawaii to celebrate my mother’s 60th birthday. Would it be possible for me to go on the trip and then return for treatment? The doctor looked at me through disbelieving eyes and suggested that would not be wise. Treatment should start the following Wednesday, and I should get myself ready for it.

Game on.

It was such a joy for Mel and me to come home to a goodwill hamper from a great friend.

Thursday, October 22, 2015

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.

Wednesday, October 21, 2015

It's not a tumour... actually it is

In years past I've had great fun blogging. While I hope other people get a kick out of the things I write, my primary audience is myself. The process of putting idle thoughts in print (or pixels) can be remarkably therapeutic.

Right now I could do with some therapy. I've just learned I have a serious health condition - primary mediastinal B-cell lymphoma - that will keep me busy for the next six months or more. This will be six months of chemotherapy, nausea, hair loss, exhaustion, infection risk and rest, hopefully with some joyous moments along the way. (Heck, I'll take dull moments where I can.)

My plan is to capture some of the experience in my blog. It won't be an exhaustive account but it will give some insight into the process. I hope to learn a bit along the way. Other people might as well.

Enjoy the ride!