Dear Diary #15 - Frustrated

 As the title says - today I am frustrated. 

What they don't tell you about cancer is you are ALWAYS WAITING. 

So at my Oncologist appointment last week I was told I would start treatment Wednesday this week (Jan 20). It wasn't like I was given an option. They didn't say 'would you like Wednesday, or Friday, or any other day?' Or anything like that. I was asked if I did want to start next week, and I said yes. So I was given my standing blood work order and told to get blood work done no later than Monday morning. And that I would get a call with chemo time for Wednesday, and I would get a call from doc on Monday afternoon to go over blood work. 

This is kind of a big deal. Like I make plans around this. Plans for work. Plans for getting prescriptions filled, and stuff to have at home. Plans for which days would be the tough days (typically day 3 thru 5 after infusion). It maybe doesn't sound like a big deal, but it FEELS like a big deal. 

So here it is Monday. I get a call early this morning from a lovely lady in booking telling me that she has an appointment set up for a bone scan on Tuesday Jan 26. Oncologist ordered both a bone scan and a CT scan (CT at my request). So I think, okay, chemo Wednesday that puts bone scan on day 6, the vast majority of people feel better by day 6, so that's good! Let's do it. 

More time goes by, and my phone doesn't ring again. About 3:30 I figure I better try to appease my curiosity and go through the list of contact phone numbers I have and find one for the main appointment center. Guess what? I don't have chemo on Wednesday. 

I don't have chemo on Wednesday. Wtf?

I am apparently on a 'wait list' for a chair for Friday. Friday isn't Wednesday. Why would nobody have told me this? So will chemo start this week? Who knows. I do apparently have an appointment  booked for Friday Feb 12 (3 weeks later, as it should be IF I start this Friday). So if I don't get past the wait list do I wait 3 weeks? Your guess is as good as mine. I'm told they 'think' they will find me a chair 'somewhere' for Friday. So that's fun. 

I did ask about the bone scan appointment, that IF I do start Friday, is now on day 4, not day 6. And maybe this isn't a big deal. Maybe it doesn't matter. But it FEELS like it matters. Damn it. I'm told that I can wait and see how I am feeling Monday and if I don't feel good I can just request it be moved. WTF? How inconvenient is that for the the scheduling department. Sigh. 

I was already starting to feel anxious about this all starting. And now I don't even know if it IS starting. Mostly I just want to punch something today. 

But tomorrow will be a better day. I will MAKE it a better day. 

#fuckcancer


Comments

  1. JenJanuary 18, 2021 at 10:57 PM

    Gzus, seriously???? For the sake of your own well being, maybe go ahead and reschedule?? It's almost like they forget the human side effect of being at their mercy, not cool.

    ReplyDelete
  2. UnknownJanuary 19, 2021 at 4:59 PM

    Yup - all this stuff takes time, but you are in the system and it will roll along best it can. The people at the Tom Baker are great and really try to accommodate everyone's schedules - not easy in the time of covid - so don't take schedule changes personally. I did learn lots of patience - and you will too. Treatment and healing takes time and can't be hurried no matter how much you want to get on with things.

    ReplyDelete
  3. Umbridge ShenanigansJanuary 19, 2021 at 5:28 PM

    Well FFS. That is frustrating. Hope you get a chair on Friday. Hurry up and wait. <3

    ReplyDelete
  4. sallythewelshgirlJanuary 20, 2021 at 4:34 AM

    Yes not a good start = I think people who are dealing with this all the time do not sometimes realise what a big thing it is personally. Go outside and scream loudly!!

    ReplyDelete
  5. RoKoJanuary 20, 2021 at 11:34 AM

    🥰🥰🥰🥰🥰

    ReplyDelete

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