More than halfway to my next checkup in late July and I’m doing what I can to not think about it. So far I’ve been pretty successful though I do need to call the oncologist’s office tomorrow and see if I shouldn’t be getting an order soon for the preparatory 6-month PET scan. This is the sort of thing patients often have to learn to do because, as we discuss often in the support group, the patient is sometimes unfortunately his or her own best advocate. Taking that role makes sense in my case because I’m unpartnered and mostly sans family close by, as well as by and large still able to arrange and execute things on my own behalf. Still, even with treatment this far behind me, now and then I find this Best Advocate role feeling more than a bit beyond my reach. And resent having to take it.
Only when I forget how much more difficult things could be though. Two years ago this week my 6th and final chemo treatment was approaching and I was wondering what the hell came next. Radiation perhaps, but beyond that? I had this idea that once I’d gotten the rad, if the cancer seemed to be in hand – which even then most indications were it would be – I’d be cut loose from elements that had in a short time come to feel essential: my oncology care team (including the dietitian, social worker and especially the nursing staff), the CCC pharmacy, more. In that scenario I had no idea where I’d get care from instead: probably my GP’s office, which in comparison seemed woefully inadequate.
That idea, I see now, had more to do with my misapprehension of cancer’s nature than it did with the reality of caring for it. While I haven’t seen the dietitian since treatment I do talk to my social worker just about every checkup, often in between. I mostly get scripts filled at Walgreens now but still use the in-house pharmacy sometimes and enjoy how the folks there haven’t forgotten my name. During checkups and whenever I call, the nursing staff is just as helpful and attentive as before. All these folks understand something I didn’t then: cancer is a long-haul thing that plays out over years or even decades and all too often dominates the patient’s remaining lifetime. While professionals deal with this day in and day out, the rest of us only comprehend it when we or someone close becomes a patient.
I thought what I did then because I had no real concept of chronic illness. Now every time I walk down that 2nd-floor hallway to the pharmacy I pass the infusion room where I got most of my chemo treatments and, despite doing what I can not to think about it, wonder if I’ll be going through its door at some point again as a patient. It’s part of that long-haul thing. The phrase “40% chance of recurrence” is too, although I can’t say that as of yet I have any idea what it truly means to me beyond just that it’s there.
Or maybe I do, because my cancer – follicular Non-Hodgkin lymphoma, bulky variety – is fast-growing and aggressive and if that 40% decides to increase I doubt I’ll have much warning. That’s a big part of why I like to think about it so little.
At times though I must. A lot more, for instance, when we get closer to the end of July. In some senses halfway is an OK place to be.
(Photo: sometimes I sits and thinks, and sometimes I just sits.)
(Republished from my personal Facebook account)