Last week would have been a pretty bad one if it hadn’t been for my sister’s visit. Sadly she could only stay for 6 days, and we were so darn unlucky with both the weather as well as my physical condition. This weekend’s bright sunshine is like a slap in the face; I don’t think this whole winter has seen another seven days with as much rain as we had through last week! Of course we still made the best of her visit and enjoyed being together.
After my treatment on the day before her arrival, I never recovered – and it’s still as bad now, after last Friday’s chemo. That one was – supposedly – the last one of the first chemo cycle. Supposedly, because I’d been told a few weeks earlier that after this one I’d be getting a “break”. (And boy, am I ready for a break!) Well, and then the doctor who saw me Friday said that the oncologist (who apparently is away this week) would be making that decision after seeing me on the 16th February. I’m confused. And angry.
Apparently this country has a policy of keeping cancer patients as much as possible out of the loop where her/his illness is concerned. I have actually known people who were never told that they had cancer before they died – I kid you not: if your family decides that you can’t handle the truth, you’re f*cked in the information department! (Very important note: this has nothing to do with my family; they wouldn’t dream of doing that to me!)
Now, obviously I know that I have a right to information. And in the beginning of all this shit, I was able to make that very clear to anybody I had contact with. But to be honest, it is a struggle to make up your mind about what questions to ask, and that struggle gets tougher every time you receive an unsatisfactory answer – or none at all. The doctor I see before a treatment changes almost every time; a typical policlinic situation. There is one contact person that is more of a constant, but I never know beforehand whether I get to see her or someone else. Sometimes I’d ask a couple of questions, then the junior doctor wanders off to ask a ‘superior’ and return with half the answers, or tells me something I already knew. Once, after I had enquired about the two different kinds of back pains I was suffering from, I’m sure she only went to confirm whether she was allowed to tell me that I had bone metastases. On another occasion the doc went to “check” – and never returned at all.
I’m not superwoman… Why do they have to make it so hard for me to ask questions? Shouldn’t the fact that I am asking be sufficient reason to give me an answer? This has been awfully frustrating to say the least, and that frustration has started undermining my resolve big time. I wish they’d simply put a note in the front of my file saying, ‘Patient Wants To Know Everything!’ – and then act accordingly.
So now, I’m going to make a list of all questions for the oncologist, on the 16th February. And keep my fingers crossed that 1) I’ll actually get to ask them, and 2) he’ll answer them… Wish me luck, ‘cos this status quo is truly wearing me out!