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.
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