Thursday, January 14, 2010

CANCER IS A PAIN IN THE BUTT

I am so sick of cancer taking up so much of my time and energy. I have lots of examples of this, but today it is:

I was woken up by a confusing/anxiety-producing phone call by the hospital, and now I'm struggling to not let it throw my whole day off. Already, I have spent over an hour calming myself down by posting the whole story in BC forums to get advice from other BC survivors. Which means I don't want to detail the whole thing here, too, because it will just eat up even more of my day, dammit.

But the gist of it is - I was woken up this morning by some random person from the hospital whom I've never spoken to, asking me, "Do you know when you're starting with Dr. so-and-so and Dr. so-and-so at [cancer center closer to my home], so we can schedule those appointments?" Um, what?? I wasn't fully awake and had to ask who those doctors are. She was referring to the radiation oncologist and the medical oncologist. No, I don't know when I'm starting radiation...why would I know? It's not up to me to just pick a date, is it?? I thought K would be telling me that at my two-week follow-up visit after surgery. And as for the medical oncologist... I stupidly had to ask what that person is FOR, and the woman on the phone told me s/he would be talking with me about whether or not chemo/hormone therapy/etc. is recommended. And that freaked me the hell out... what a way to wake up. I've been strongly anti-chemo from the start, to the point where I nearly cried when K mentioned it as a possibility. That was a month and a half ago, and she hasn't mentioned the topic since. And now I'm feeling like, NO NO NO, I don't want to make an appointment with some stranger to talk about chemo, when I haven't even had the re-excision yet... I have been trying to just focus on taking things one step at a time, and right now the next step is the re-excision, and healing from that.

I was so flustered and confused on the phone that the woman ended up saying she'll have K call me to talk about this stuff first, before we attempt to schedule the appointments. And now I'm left wondering if I'm just being a "difficult" patient. Maybe the problem is really that I'm too attached to/dependent on K?? She's the one I know and trust, the one who's been with me on the journey thus far...maybe subconsciously I've stupidly been wishing she could be my "everything" doctor, when really, she's just my surgeon. Maybe the purpose of the 2-week follow-up visit is really just so she can say "Yup, your incisions are healing well!" and send me on my way, and it really is the medical oncologist and radiation oncologist that I need to be having the "Where do I go from here?" conversations with. But dammit I don't want to. I can't see how some STRANGER would be able to convince me to consider chemo. I don't know if K herself could even convince me to consider chemo, but at least I'd listen to what she had to say. Argh, am I just being a baby?? I feel like I need K to shove me out of the nest if that's the way it's gotta be, because there's no way I can bring myself to jump.

4 comments:

  1. breathe brit! i'm sorry you had to wake up that way. it sucks that you were bombarded with questions about stuff you haven't even talked to K about yet. & i'm sure the reason you haven't talked to K about them yet is because, yes, you aren't at that step yet.

    i think its important that you take the meeting with the medical oncologist seriously though. s/he won't be there to "convince" you of anything. they will just be there to give you all of your options so YOU can make a totally educated decision about how to proceed from there. i think s/he could give you a lot of info you don't have right now about your options and answer a lot of questions for you. just remember that s/he will be a stranger, yes... but s/he will also be an expert on cancer treatment, and that is something that can be very valuable to you if you let it.

    i love you. xoxoxo

    ReplyDelete
  2. K was once a stranger too...
    but i don't think you are being a "difficult" patient at all. you're the one who has been waiting so patiently! if i were a patient, i'd probably be giving them holy hell. (not that you should be!) :)
    i let my voicemail catch calls during stressful times. sometimes, there's no way i can deal with something exactly when someone else wants to. i just need a few minutes/hours, and the more stress i am under, the longer i need. the voicemail gives me a heads up and lets me prepare.
    remember: your body is YOUR body. NO ONE else can tell you what to do, or tell you when to do it. it's up to YOU and you only. gather information, then the people who gave the info to you can just chill out at their jobs while you decide.
    i know a lot of stuff has been scheduled and it sounds like you are in a big machine of scheduling. but things can be rescheduled.
    if people are being less than sensitive/compassionate, i would say call them out on it! you are the one who needs extra consideration right now.
    love you LOTS.
    cathryn

    ReplyDelete
  3. speaking from someone who works at a hospital (albeit a small, non human one) that lady probably just got handed a list of names to call. And it's probably good that they're remembering that you need radiation and all... at least they know that much.

    But- wires get crossed... she called before you even had a chance to talk to K about it. She probably didn't even realize you needed a 2nd surgery. Etc.

    Hospitals in general are scheduling/paperwork nightmares. Sorry you had to be a victim of it!

    and no, i don't think you're that needy/difficult of a patient. I mean, i'm not THERE with you, but trust me... there are some RIDICULOUSLY crazy patients out there, you don't strike me as one :)

    ReplyDelete
  4. I don't think you are being unreasonable. When my husband was sick I was uncomfortable with all the doctors I was supposed to pour my heart out to and explain the story over and over again to when none of them I would ever see again nor could they help or advise. However, had I not been willing to talk to one of them we might not have ended up with the FANTASTIC neurologist we have now. So, I guess what I am saying is that K sounds like an AMAZING person but her specialty is surgery and she will perhaps have recommendations for you as to who she thinks will be a good oncologist but that's not her specialty so she has to share her wonderful patient with someone else!

    I don't think anyone should try to convince you of a treatment your not comfortable with and legally they can't force you or refuse to treat you with a treatment you would prefer simply because you don't agree with their recommended treatment. Just like you found a good relationship with K I am certain there is someone out there who will understand your beliefs and your passions and will support your decision regarding further treatment.

    hugs to you,
    Erin

    ReplyDelete