I had a rash

FeaturedI had a rash

 

It’s time to do this….. a story about my very own transplant.

I decided to call him “blog“!

Thought it sort of suited the amorphous nature of the thing. It’s not after all an easily recognised body bit. Everyone “gets” the transplanted organ. Even if you haven’t seen one, as I have many times, you can conjure kidney, liver, heart or lung. Stem cells though? They’re just not quite in our consciousness in the same way.

So, blog it is.

The need for blog stems (and yes, pun intended – no point making this a dry, boring, “doctor does his own demise” story after all) from a failure –  a failure of the body, my body, to control itself. Curiously, like all cancers, some cells have lost the plot, and decided to behave aberrantly. T-cells have migrated from their usual sites to congregate in my skin, build abnormal clones in my blood, and for good measure, deposit themselves in my lymph nodes.

To this point my internal organs have been spared the burden of unwanted visitors. My cancer therefore has been staged as “advanced” and given a name. I have a form of cutaneous T-cell lymphoma (CTCL). Like so many cancers, within the generic group of CTCLs, there are those that behave in different ways, and some are more aggressive (I’ll go “rapidly lethal” here). Sézary Syndrome, the most aggressive, is where I am at. International experience would suggest that only half of all patients are alive 4 years from the time of diagnosis when at this stage.

Sézary however is rare. Very rare. Few of my colleagues had even heard of it. I certainly hadn’t. There are less than a handful of cases diagnosed each year in Australia.

Now “rare” can be OK if it comes with “obvious”. A large lump, even internally, can be seen or felt, duly biopsied, a diagnosis ultimately arrived at, and treatment commenced.

Sézary however can be, and in my case, was, just another rash. For four years, as my skin became more significantly affected, I repeatedly sought advice from specialist colleagues – and not just one, on what to do with this thing that was making my life miserable. The thing – labelled eczema, had progressed from a small patch on my right shin, to a flaking (the f-word!), itching conflagration, covering my entire body. I walked around in a cloud of dander. I could no longer work as an anaesthetist – the required, frequent handwashing left my palms raw, and at times, bleeding. I became intolerant of cold. The operating room was Siberia. I had begun wearing thermals to work. I was photosensitive – something doubly frustrating as we had just moved to a home on the beach. Even a short walk was a call for slip, slop and slap, lest I should become burned in only minutes.

Behind the obvious signs and symptoms of a skin disorder though was something far more debilitating. I was becoming progressively more fatigued. Put down initially to the after effects of a severe flu, it meant that I was forced, incrementally, to cut back on all activities. Regardless of how much I cut back, the sense of exhaustion remained.

Now, while hardly fanatical about exercise, I had always done something to keep fit. A return to the gym seemed in order. Perhaps it was after all just a lack of deliberate, regular exercise that was contributing?

I soon learned that it wasn’t.

By way of introduction to a new gym, I was offered limited personal training sessions. So, on day one, I was being assessed. Flexibility – tick. Floor work – tick. On to the rowing machine, an old favourite. Felt good to be back. But crikey, it didn’t last long. I was pleased to stop and move on to the step machine. Pleased that is, until I realised that if I didn’t stop stepping I would come to some form of grief. There was an overwhelming sense of impending collapse.

I was soon prostrate on the floor, at my side a medical colleague who happened to be at the gym and had seen what was going on. A quick assessment and slow return to steady feet proved that there was nothing sinister happening. As did a formal medical review and cardiac work up.

I had a rash.

Death on the blog

Death on the blog

So much of 2016 astounded. Politically, socially and environmentally things occurred on a scale that caused many to take stock. One thing that seemed to capture the imagination of western society in a manner not seen before was death.

As the year progressed it became a case of simply: who’s next? Cries to keep human, but ephemeral treasures such as David Attenborough, and even the Queen, protected, cosseted, somehow rendered immortal, rang out across the globe.

Social media played a particular role in bearing timely news of the latest death – or was that passing, or maybe, moving on? How best could we otherwise avoid the D word? Of course from Shakespeare to slang there is no shortage of sometimes amusing, often euphemistic expressions to describe death.

Behind these matters however lies the serious question of how to effectively communicate end-of-life issues. Broadly, in the West, dying has been made a highly medicalised phenomenon. Distanced somehow from the everyday, death and the discussions about it that might have erstwhile taken place in the family home are turned over to medical professionals to oversee. Yet it is becoming increasingly obvious that medicine is hopelessly ill equipped for this responsibility. And while there are undoubtedly elements of medical training to blame, there also exists the issue of language – or more significantly, the absence of a definitive lexicon, widely acknowledged and commonly used. I am going to call it the death lexicon.

In doing so I do not propose an exhaustive list of synonyms, idioms, descriptors of death, but rather make a call for awareness, for simplicity, and for honesty in bringing the discussion of death to the table.

The New York Times reported in January that mortality also became a topic of humour as never before in 2016. Comedians have, the Times reported, delivered powerful performances confirming that comedy can tell a story of complexity and nuance and emotional power. We learn that, in the show “45Jokes About My Dead Dad”, comedian Laurie Kilmartin walks the audience through the treatment, recovery, raised hopes and hard realism of helping a loved one die with dignity.

Indeed, the year just gone has seen unprecedented, widespread consideration of what it might mean to die with dignity. Canada, and increasing numbers of US states, enacted legislation to facilitate physician assisted dying. The Australian, State-based discussion of similar initiatives is continuing, with Victoria clearly closest to legislative change. What would also be apparent is the inherent dilemma surrounding the language of these discussions. If there was ever a reason to establish an agreed death lexicon, it is this. Words such as killing and murder have no place outside the criminal code. Instead it is time to invoke the measured, but very clear terminology of the recent VCAT Review in the case of Syme v. Medical Board of Australia. In this judgement, rendered in favour of Dr Rodney Syme, the Tribunal set a benchmark for the language of subsequent debate regarding medical assistance at the end of life, and importantly the elements of patient choice and control.

Inevitably hyperbole and distortion of fact will continue to infiltrate the discussion of this emotive subject. An agreed lexicon that draws all players to meaningful discourse on death will ultimately serve all of us well. In this, dying, death and end of life considerations must once again be openly articulated free from euphemism and its attendant potential for confusion and even further discomfit.

Death will be what it is – inevitable for every sentient being. Perhaps we can let 2017 be the year the D-word itself is released from its shackles?

 

Recap…. and move on

Recap…. and move on

There’s a diagnosis of…. ah, not so fast!

When it’s rocking horse pooh, everybody thinks twice before committing. And rightly so. 

After I arrived at the PeterMac, Melbourne, almost eighteen months ago now, things were all reviewed…. again. Bloods, biopsies …. the whole shooting match. 

Once more we were on tenterhooks. Another clinic visit and, after a long discussion, with only a refreshingly brief reference to a computer screen, these words… “Yes, you have Sézary Syndrome”. 

To have a long questioned diagnosis confirmed, even as it was, a second time, is significant. To live with doubt is a highly stressful circumstance. It matters little how strong inward convictions might be, until the words are spoken, it simply isn’t so!

This experience was in marked contrast to that of a fellow clinician with cancer, Liz O’Riordan. Liz is a breast surgeon with breast cancer. She blogs here and has recently contributed eloquently to a Doctor Paradox podcast

Liz describes being invited to view a mammogram, her mammogram, and knowing…. knowing that she had cancer… knowing how the next years of her life were likely to unfold. This is an exquisitely arresting image. In a moment, to understand.. completely understand, that life would be changed irrevocably. 

That Liz has committed to documenting her own ‘new normal’… to expose us all to the very special insights that she can, and does offer, is simply inspiring. 

So it was, that unlike the circumstances for Liz, there was conjecture regarding a first move for me. 

There aren’t established best practice frameworks, or clinical guidelines for the management of seldom seen diseases. That is just the way it is, and, indeed, to expect it to be otherwise is completely unrealistic. 

What does exist however are international networks of clinicians willing to share their experience of the application of different treatment modalities, in realtime and in print. To my ongoing good fortune, a preeminent clinician, researcher and author in the field of cutaneous t-cell lymphoma treatment is in Australia. 

Based on what he made of the staging of my disease, Miles Prince recommended an initial attempt to achieve remission with the monoclonal antibody, Alemtuzumab. 

At the outset it was made plain that a treatment constraint was always going to be access to certain existing therapies not available in Australia. But this was tempered by an understanding that new, innovative, potentially successful treatments are constantly evolving. 

Alemtuzumab, despite its early promise, was not to be the agent to achieve a lasting remission. Some ten weeks from the end of three months of therapy, skin signs and symptoms returned. 

As a clinician I have always welcomed treatment options. As a patient it was no less the case. Suggested as “next line”, was Interferon. 

Who in medicine is not aware of the existence of this agent? A product of the search for immune system modulators, first described in 1957, it has become a frequently used treatment in multiple disease settings. 

How many of us though, are aware of the ability of Interferon to influence more than just the immune system? How many recognise that, beyond its systemic effects, it is capable of wreaking havoc with an individual’s mental state?  

Already rendered compromised by the presence of malignancy, Interferon’s effects on mood and sense of well being are as if a “test” of resilience. 

Or are they? 

For me, this circumstance was more than a challenge of my mental state. It challenged my sense of being. It truly robbed me of my place in the world. 

I resolved that I would seek out an alternative treatment. 

So, you have a diagnosis?

So, you have a diagnosis?

Things aren’t quite so straight forward when “rare” comes into play. Suddenly people are reluctant to make a call. It’s the Zebra thing all over again! Who’s going to commit to saying they’ve spotted one, not having seen the beast before?

And certainly, no pathology service, at least initially, was willing to. Biopsy specimens were shipped around the country. “Experts” locally were indisposed – one a plaintiff in a court action (but that’s another story), one overseas. 

Time for “the phonecall”. 

Three decades in medicine mean that networks of colleagues exist that can be tapped into. A GP might do this for their patients. I did so on my own behalf. A friend and former classmate, a haematologist himself, recommended a Sydney-based colleague to assist in building the case for a definitive diagnosis. 

But, you say…. wasn’t there a biopsy? Well, yes there was…. one that had anatomical pathologists scratching their heads!

There’s a certain process built in to western medical practice that most clinicians adopt when confronted with clinical problems, large or small. It’s a sort of dance…. and for me it went like this. 

Introductions and “get-to-know yous” were followed by some storytelling. Focused, guided storytelling that needed a lead who knew the steps, kept time, brought out the best! This is the bit that determines where confidence lies, where risks are assessed, where the feeling that placing oneself in someone else’s hands is acknowledged as safe, or, indeed…… otherwise. 

Next came a sequence of “changed partners” in the dance – all hand-picked by the lead. First, on to a surgeon. There were nodes to biopsy. The gasman was an old friend – that was nice. The dance here was all about reminiscences, followed by pleasant dreams! From the surgeon, on to an outpatients team for bloods to be taken and assayed, and a bone marrow biopsy. Ouch! From there to diagnostic imaging. 

Once around the dance floor – a period of weeks, it was back to the lead. This was now time for reappraisal, a check of form, decisions on next steps……. or, on a whole new dance. 

There was good news! On the strength of a waltz through the gamut of diagnostic modalities, a call could be made. I did indeed have Sézary Syndrome! Strange, but after years of carrying this enigma around, the diagnosis of an illness with a fifty percent four year survival was actually met with relief. My wife and I could now get on with this new phase of being….. our “new normal”!

But, where to from here?

All arrows pointed to the PeterMacallum Cancer Centre’s Cutaneous T-cell Lymphoma (CTCL) Clinic and internationally recognised authority in the field, Miles Prince. 

So, “where to” became Melbourne – a short 18hr drive from home on the NSW-QLD border. If you happen to be reading this in, say London, that’s a road trip to Rome! And maybe, just maybe, if that was where Europe’s centre of excellence in managing CTCL was, you’d do it – well, fly at least, as I have done regularly to Melbourne for the last eighteen months. I’m not complaining though. This is Australia, and I wouldn’t have it any other way!

Of course, we continue to be grateful for family in Melbourne. They live a twenty minute stroll away from the clinic, on the edge of a stretch of beautifully tended parklands – a perfect route for contemplative walks before and after appointments. The impact of dislocation for tertiary level care though is no small matter. As a national centre for the care of a range of cancers, the PeterMac is well versed in support for patients from far flung locations. Consideration of treatment options was, from the outset, always made with our own circumstances in mind. 

Accordingly, an initial treatment was decided upon, and it was to be delivered near home, supervised by a haematologist who was to now have me join both my father and my wife as his patients – a family-trio first for him, a “bonus” for me. He was known and respected. 

The treatment drug, a monoclonal antibody – Alemtuzumab, was delivered subcutaneously, three times a week at a nearby oncology unit. Christmas Eve 2014 was the last dose in a three month schedule. There had been significant improvement in skin signs and symptoms. I was fatigued but content that there had been an impact on the disease. 

Hopes for a remission having been achieved, were high.

Dr Patient

Dr Patient

Before moving beyond the rash – addressed in my last post, there’s the matter of negotiating illness as a doctor-patient. 

For better or for worse, my adult life has been punctuated by encounters with a few major medical complaints. A couple have proven chronic. 

I have previously written about walking with the black dog as a constant companion. This record however did not include one of the more problematic encounters I have had with treating colleagues. Well meaning as he was, at each visit to a certain psychiatrist, I found myself engaged with him in a complete role reversal. It would seem that I was just the patient he had been waiting for. Once beyond initial pleasantries, and with little prompting, there was an outpouring of emotion charged tales of life in medicine – and all from him. I would leave each session feeling as though my presence had been of purpose, but not quite that for which it was intended. Rather than causing insult, I simply sought another treating psychiatrist. 

For those who may not be aware, across Australia are panels of clinicians who volunteer to assist their colleagues in health, particularly mental health, related matters, and it was to the Doctors Health Advisory Service that I turned at this time.

Critical to the success of this Service, is the ability of each of its panel of specialists to be able to treat doctors. This is no small matter. The skill to be able to manage a colleague with requisite objectivity and compassion is not possessed by all. 

At the very heart of these clinical encounters, and the issue most likely to determine their effectiveness, is the ability of the doctor-patient to give in to their new status. No less a colleague, they must now assume the role of a knowledgeable partner in proceedings rather than a driving force. 

This relationship evolves then as a coming together of two minds, each cognisant of the particular challenges the other might be facing, each able to stay fast to the task at hand….. healing. 

Of course, beyond the face to face encounters, there exists a wealth of opportunities for things to go awry!

The temptation, as doctor-patient, to monitor and intervene, even to go as far as modifying treatment, is very real. It is here that a vigilant partner can prove invaluable. If only I had a dollar for every time I have heard…. “But darling, you’re not the doctor”! Oops!

And then there is the attempt to discern, often with abject failure, the significance of signs and symptoms that present during the course of an illness. In these circumstances, and particularly when an illness is outside one’s own discipline, it is just as easy to play down as play up a new finding. The resultant outcome can be devastating either way. 

Of course, I am admitting to nothing here!

And so to return to the rash. As doctor-patient I had diligently followed orders, all the while wondering how the profound systemic effects of this malady of the skin had been brought about. I had sought second and third opinions, only to return to the source of the first. Here I heard an initial hint of doubt creep in around a diagnosis that had stood unchallenged for over four years. How often do we say in our daily working lives as doctors that “common things occur commonly”? After all, it is only the medical student who first considers the sound of hoof beats to be zebra. But this common thing – eczema, was behaving…. uncommonly!

On the biopsy request appeared the word Sézary. 

Dr Patient went home and Googled.