Which boob wrote this:

Thoughts for the newly diagnosed

Another brilliant card from Louise Lauret

In the past few months, several friends or partners of friends have been given a breast cancer diagnosis. I'm humbled that they've reached out to me as a resource. One thing they told me was that before contacting me, they'd read through the blog looking for answers.

Which made me think that maybe I should update this with a bit more context, and some of the tips that got me through. 

So here goes. 

Your mileage may vary, and there's no one right way to do this, so take all of this with a grain of salt. As always, I am not that kind of doctor, so nothing here is medical advice.

  • There is so much to say about navigating all of this, and I've only done it once. There's no right or wrong thing to do with the doctors will offer, but there will be a lot of choices ahead. 
  • There's likely going to be a lot of hurry up and wait in the next few months. I didn't realize that and thought things would move a lot faster than they did and that made it really hard to plan.
  • If you don't like your doctors (and there will be many), change them. You will be entrusting your care to these people for the next 5-10 years and you'll be seeing them regularly. This is longer than most of my romantic relationships have lasted! You need to like these people enough to be open, honest, and vulnerable with them.  I have been vocal about how much I love my surgeon and oncologist. I'd hang out with them if I met them in other circumstances. If you don't like the doctor you've been given, CHANGE DOCTORS. It won't hurt their feelings.
  • Be a shameless self advocate for whatever you need. Whether this is asking questions, vocalizing discomfort or side effects, or having the occasional meltdown. No one is going to advocate for you, so this is up to you.
  • Get a notebooks and write all your questions down. Don't doom-google. You know, searching WebMD for all the words in your path report. Ask your doctor. If they can't or won't answer so you can understand, CHANGE DOCTORS.
  • Take that notebook to the doctor's appointments. Ask your questions. Write down the answer. You won't remember it.
  • Treatments will vary a LOT depending on what the path says about the type of tumor it is, stage, and frankly how much we know which changes almost daily. A good doctor is continually reading the literature and as standard of care changes, treatments may as well. You can read all you want, but unless you are an oncologist, you will not match your doctor's knowledge...But also, this should be collaborative. If your doctor is pushing you toward things that don't work for you, push back.
  • "Standard of care" is set based on a lot of things, but at least here in the US, it's based on literature/studies and society recommendations and summations. It's not generally set at the level of the institution: that is to say that no matter where I went, I should have gotten the same care (though we know that won't be true, and that differences in insurance will mean differences in care too). 
  • The C word is one of the most terrifying things you can be told, and I don't mean to diminish that. I know it's utterly fucking terrifying. But through my journey, I realized that 1 in 12 women in the US will have breast cancer, and the survivorship is incredibly high. That doesn't mean there won't be some suckitude in the immediate future, but that the long-term  prognosis is quite good in most cases.
  • Take every offer of help. You'll be tired. Your partner, if you have one, will be tired. Even with the best-case scenarios, it is a lot to deal with.
    • Corollary: lots of people want to help, but don't know how. If you need something specific, ask for it! For me, that meant asking friends to bring food a week post-op when I still couldn't lift my arms and spousal unit had been dealing with all business things, all house things, all food things...all the things. We were beat. But if you need something else, ask!
    • Be clear about your constraints. You don't need to commit to anything with anyone! Or just disappear for a few days if that's what you need. And if people text, call, email, answer when you are up to it. Prioritize you. They'll understand.
  • Being sick means that you suddenly will need to learn to be both the sick person and the person who comforts everyone around you. You'll rapidly get really fucking tired of people asking "how ARE you?" with a slight head tilt. Trust me. 
  • You will also learn about a LOT of people who have had cancer. I think it's people trying to relate, but a lot get too far in before they realize the end of their story is not exactly a pep talk for you. 
  • You will not be the same person as you were before cancer after you finish treatment. Even the simplest treatments will change you.
  • Give yourself grace during this time. If you're like me and not good at that, cancer was a great opportunity to learn.
  • I talked a lot about reconstruction options here in previous posts. I opted not to reconstruct, but this decision is exceedingly personal. Even if you don't think you want it, or if you think you can't live without it, talk to a surgeon who can answer questions about risks, maintenance (are you young enough that your implants will need to be replaced down the road?), and added recovery reconstruction will require. I went in positive I wanted to reconstruct. I came out realizing that I didn't need that...but I only got there by asking a lot of questions.
  • This blog served as a diary of sorts...but also a way for me to update people. I started it on the advice of a friend who suggested I have a point person who can field all questions about how I am. Since I have a lot of disparate groups in my life who will never meet, that seemed daunting to pick one person, so I chose this, but do what works for you. It's absolutely wonderful that people care, but it's hard to be living this reality, and also updating every single person with all the details that you want to just stick your head in the sand for a while and forget. 
In the coming days/weeks I'll try to also post a list of pre-surgery shopping and tasks that may be helpful, some thoughts for the caregivers, and a rundown of some of the post-treatment medications.