I’ve been taking time over the last few days. A few playground excursions, visits, coffees, long phone calls, even a massage. And today, a first birthday party for Alannah’s little friend Tess.
I’ve also read How Doctors Think by Jerome Groopman, a surgeon and staff writer for the New Yorker. It arrived in the post on Friday and I finished it tonight. And I’m about to take it off to bed with me for round 2. It has helped me to clarify my underlying unease over recent weeks. Even better, it has helped me to work out what I’m going to do to set my mind at ease. I hope.
You see, there has been barely a pause since we first met my oral & maxillofacial surgeon Dr P. No chance to catch our breath, to question, to debate. Dr S referred us to him on 9 June. Our post-haste consultation was on 10 June. I had the MRI and CT scan on 14 June. We met my plastic & reconstructive surgeon Dr A that same day. On 16 June, Dr P left the fateful voicemail, followed by the family teleconference that night. I was in hospital for the biopsy on 18 June.
Then we bunkered down and waited. And waited. Knowing that the time between the news, should it be bad, and the surgery may be a matter of mere days. Suddenly the wait ended. And the rush was on for medical paperwork before Dr P left on school holidays overseas with his four kids for two weeks.
This relentlessness has left me at the mercy of my surgeons. This is not right for me. I am uneasy. I am queasy to my stomach. The details of the biopsy report are glossed over in favour of the headline.
Yes, I know the surgeons have years of training and experience, but not on my case. Dr P had not seen my scans at our only consultation, that meeting that left me breathless and tearful. Dr A had not seen my scans at our only consultation and I do not know if he has seen them since. They talked to us about the theory and about their approach.
Have they considered my case? Have they ever questioned the diagnosis or treatment plan? Have they asked themselves if it could be anything else or if anything doesn’t fit?
I want to slow things down. I need to slow things down. I am glad to have four weeks from tomorrow to ready myself and make sure that nothing has been missed in the rush.
I still have questions. Especially after the latest biopsy report. Reading How Doctors Think could not have come at a better time. More tomorrow.
Marsupial Mum 
I reckon doctors like it when faced with something a bit different.
I’m sure parts of their jobs become boring and routine when they are treating similar things over and over.
So in a way – I reckon it is good you’ve got a rare one coz it makes them pay more attention.
But sometimes that can make you feel like a science experiment – like you are subject to a bit of trial and error. But again – that is kind of a good thing. Because if they don’t have your treatment set in stone, it means they can roll with the punches and keep coming up with solutions that will work.
I hate to hark back to Vince again – but he’s my point of reference.
At first, he had a shunt thing put in his brain so the chemo could breach the blood/brain barrier and get straight to the source – but it didn’t work! That was really scary. But not to be deterred the doctors decided to try what seemed to be a “lesser” treatment – chemo for normal lymphoma – and it worked!! Then for good measure they nuked that sucker then gave Vince a stem cell transplant. It’s kinda like the whole treatment thing is a constant work in progress, being tweaked and re-sized and re-fitted.
Freefalling, I don’t think I’ve hit the rareness sweet spot. The tumour is rare enough that the best expertise is in the private hospital sector, not public. But the tumour is not rare enough that my surgeons find it “interesting”. It’s a big deal for you as the patient, Dr P said, but for us it is routine. Routine. I don’t want a tumour that is more aggressive than the usual so easily dismissed. I’m going to use the extra two weeks after they get back from holidays to break with the routine and ask questions.
I’ve always liked that saying “it’s the squeaky wheel that gets the oil”.
There’s a flip side to the “routine” comment from Dr P.
When cardiologists discovered – unexpectedly – that my husband had two blocked cardiac arteries (one 95%, one 100%), they proceeded to double-by pass surgery as quickly as they could. The cardiac surgeon said to me, immediately post-op, “I know this is difficult and frightening for patients and families, but for us, it’s just plumbing.” I laughed with relief. If it’s “routine” for your surgeons, this is probably a good thing.
This should NOT discourage you from asking questions. Ask lots.