Rule #1 – I work for a living.
So, I was out of the house at 7:30am this morning and got to work at 12 noon. What took so long? Traffic? Well, in this part of the world there could be an accident bad enough to cause the drive to work to take that long, but no. What else but a doctor’s appointment to interview (yes, I’m using that word consciously and deliberately) a radiation oncologist at NR Hospital.
Now, I knew this appointment was happening – I made the appointment myself, personally. When I made the appointment I deliberately asked them how long I should plan on being there. I was told an hour and a half. Because I am trying to reduce the effect this craziness has on my supportive employer unless I absolutely can’t work (like directly after having surgery), I’ve busted my ass to bank extra time this week to cover the time I would be late today, thinking I was being generous when I budgeted two hours (half an hour more than I was told today’s consulation would take) plus time for a reasonable drive to work.
This means between the other two medical events I’ve had this week and working longer days than usual to bank some time [and a family event last night I refused to miss and thereby add to the list of events this cancer is forcing me to miss this year because it may be the only time in the next few years I get to meet my beautiful new baby cousin – or you know, have a real/social life], I’ve had two 14-hour days this week (out at 7am and not home until 9pm). Keep in mind, this is a time when I need More sleep than usual and am getting Less (still recovering from two surgeries – not yet 8 and 6 weeks out from them respectively – and doing physical therapy for surgical side effects, plus follow-up visits for previous treatments, and meeting new doctors for upcoming treatments, yeah and working full time).
Oh, and because today’s appointment took almost two and a half hours instead of one and a half hours, I’m still going to end up short of work time this week. Now, I will do a lot to try to manage this intrusion into my life, but I do have a limit – and staying after my usual quitting time on a Friday is something that is not going to happen.
Then there’s the appointment itself.
I do realize and acknowledge that every one of the people I met today is caring and supportive and genuinely wants to take the best care of me (and their other patients) that they possibly can – many have chosen this specialty of healthcare after being a patient themselves or knowing a close loved one who has.
How many times during one appointment do you think I should have to mention or remind people that I work for a living – not for the fun of it, but to put food in my mouth and keep a roof over my head. I figure once is fair when I meet a new provider – I mean, they’re supposed to be listening and paying attention, right? They will blithely reply that they do too and/or that lots of their patients work.
Then they set out a plan like I heard this morning:
– I’ll have a second visit in which they’ll do a CT simulation: they’ll take pictures and measurements of me personally to formulate a plan unique to me to treat my cancer according to how my anatomy is built.
– Then I’ll have a third visit where they’ll do a dry run on the actual machine to make sure the plan is appropriate and correct, then do my tattoos, then have my first treatment.
– THEN, at the end of that visit they’ll schedule the rest of the treatments.
Um, I don’t think so. Part of my decision of where and with whom I will get my radiation therapy has to do with scheduling the treatments to allow me to work because Please Refer to Rule # 1 – I work for a living.
So, they’ve indicated in some way they’ve heard me say that and then propose a plan that has me taking time off work for two hour-plus-long appointments and getting permanent marks on my body before scheduling the balance of treatment – thereby risking that their availability will not coordinate with my work schedule because Please Refer to Rule # 1. Can anybody say “ludicrous?” I knew you could.
And then, because no matter what they say, the way they present the plan assumes that my entire day is at Their beck and call, I end up feeling like an asshole because I have to tell them “No, that’s not how you’re going to do this with me because it doesn’t work for My life, no matter what your usual procedure is.” When I’ve stood up for myself, I’ve had people repeatedly tell me they admire and/or respect me for making sure My needs are getting met and being my own advocate, and I appreciate that. At the same time, I get so frustrated because I really should not have to expend that energy to begin with – I don’t have it to spare, and I should not have to keep reminding all the various providers that the interaction they’re having with me is not about their convenience and/or usual procedures.
So I’m spending the balance of my day – at work and after – crying intermittently from the combined physical/mental/emotional exhaustion and frustration for having to waste energy I don’t have to spare and having to repeatedly remind people of things that are so obvious and still seem to vanish from this process time and time again (sorry, belated run-on sentence alert).
Well, that’s been my Friday – hope yours is better…
So sorry for what you are going through. It never occured to me what you and other’s like you have to go through and the hoops you have to jump through for the Dr’s and other medical personel to get the treatment you need. I can see your frustration.
I am glad you started this blog so ,myself and others can
follow your recovery. Tom and I are here for you anytime you need us for anything!
Miss and love you~
Thank you Susan! Most people don’t have any concept of the absolute and overwhelming chaos this kind of thing causes in one’s life – I didn’t before it happened to me – even when the prognosis is extremely good, as luckily it is with me! I miss and love you and Tom too!
Wow I am just catching up on your blog after being out of town for about 3 weeks and this is overwhelming even for me! I think you have so much strength and courage and I am thinking about you and praying for your continured strength and healing from this terrible disease.
I love reading your blog and I love that you have some way to vent and release whatever you are feeling because of this disease..
Thank you so much Susan, for traveling this journey with me by reading what I’m sharing. It means so much just to have someone check in and let me know they’re thinking of me! 🙂