On 9/11 I was in Chicago at Print ’01, a huge exhibition in the print industry. I turned on the TV in my hotel room just in time to see the second plane hit. It was unworldly – and I was 1200 miles from home.
During my cancer I learned that although we long for certainty, sometimes it’s just not possible. We can only choose from available options, with imperfect information, and see how it plays out. I was desperately sick and wanted a sure treatment, but there wasn’t one. When I learned about interleukin I wished I could know if it would work for me, and they couldn’t say – even Beth Israel Deaconess, one of the best places in the world for this disease, couldn’t say. Today I know they acted professionally by telling the truth: no false hope, and no false despair – just the truth, which my primary physician Dr. Danny Sands might say this way: “Sometimes we just don’t know.”
As regular readers know, that was freshly reinforced when my younger brother died unexpectedly eleven days ago. (See A death in the family and A sister’s perspective.)
Now, due to another uncertain family circumstance, we’ve decided my June trip to Australia must be postponed to another time.
Of course, we all want certainty, but that’s not an option: decisions must be made now (plane tickets, final plans), there’s no way to know the situation a month from now, and having considered all aspects it’s my informed decision to not risk being unavailable to family if needed.
I feel terrible about letting down everyone who’s been preparing the trip – the companies and agencies who were sponsoring the trip, the online friends I was going to meet for the first time, but most of all, the amazing health activist blogger Kathie Melocco, who has logged endless hours organizing the trip. (See my guest post on her site in February.) But better to make an empowered choice now, as early as possible.
I trust that I will indeed visit Australia later and fulfill those connections. But for now, we must act based on the facts we have, which boil down to this: family is so important, and there’s a chance I might be needed during those weeks. That much is certain.
My apologies to all those affected, and here’s looking forward to resuming when the time is right!
p.s. In a way this illustrates what we always say: in a world where nothing’s certain, remember what’s important, think clearly, and make empowered choices. Get treatment from the best doctors (the most experienced with the best outcomes), choose your care plan based on your own priorities, etc. – and when your family needs you, be there.
Stephanie Miller says
I was so sorry to hear of the loss of your brother and I did wonder whether you would still make it down under. I totally understand your decision to postpone. Family and loved ones certainly come first as does your own health.
We were very much looking forward to your visit to Adelaide but there’s always another day. I don’t think our work of empowering patients and recalibrating our health systems is going to be finished any time soon.
Kathie has done a wonderful job and we look forward to working with her in the future.
Please take care of yourself and your family.
Health Consumers Alliance of South Australia
e-Patient Dave says
Thanks, Stephanie. Your kind words mean a lot. Hey, let’s get started on whatever we were going to do, right here. What’s up with you folks??
Kathie Melocco says
Stephanie has been in touch and we will work towards making it work with you later in the year :-)
Mary Draper says
Sorry you are not coming in June but I am sure we will be welcoming you here later on and look forward to hosting you here at Health Issues Centre. Your family should certainly come first, it’s a long trip back! and I hope all goes well.
We will be using one of your videos in some work with the Department of Health we are involved with looking at patient experience. If not in the flesh, then at least virtual.
Best wishes for you and your family.
Health Issues Centre
Victoria’s health consumer organisation