I wanted to write these down before I forgot. I was thinking about the most helpful things to me so far (I still have plenty left to do, but I think chemo and surgery were, for me, the biggest pieces of this process).
So here's a list of my best advice to anyone going through this (either directly or as part of a support system) so far:
1. Ask every question you can think of, and write everything down. If you're not comfortable with a doctor or a process, it's ok to ask for a referral or to talk to other people. You're going to be working closely with these people for a long time, and if you don't like or trust them, it's going to cause you even more stress. Don't do this. I happen to love my medical team, I feel comfortable asking them questions or pushing back on things, etc. This level of comfort makes everything easier.
2. Remember that you are more than your cancer, and you are more than your treatment. Find things that make you happy and hold on to them even when you feel terrible or your news isn't what you hoped for. You're here, you're alive, in so many ways it might not feel like it's ever going to be ok, but try to find joy where you can.
3. Get a referral for physical and occupational therapy as early as you can. You'll probably hear about it in your first consult, and even though you're going to be overwhelmed with information, if you have it in you to do this, you will not regret it. Being in PT and OT early has, I believe, made a HUGE difference in my ability to get through chemo, to get ready for surgery, and to recover from surgery. PT and OT. DO IT EARLY, DO IT REGULARLY!
4. Talk to people who have been through what you have been through. Not necessarily in a support group setting (unless that is something that appeals to you). It's really helpful to get practical advice and recommendations for post-surgery garments and strategies and things like that (or even "here is the candy that helped me deal with how saline tastes like nail polish remover" - for me, it was ginger chews).
5. You don't have to talk about your cancer. But you can! I obviously love talking about it! It's part of my life, it's not weird or embarrassing for me, but I'm VERY weird and embarrassing so just do what you're comfortable with. NOT talking about it, to me, seemed so much more stressful. So this is what I've done.
6. If you're getting surgery and you don't want to get reconstruction, talk to your surgeon about a flat closure (also called an aesthestic closure). I have found that surgeons, even very good ones, will leave it up to you to ask questions, and if they don't know that you want a flat closure, they won't assume that you do. I asked my surgeon about a flat closure, we talked about it, he did a great job, and I'm very happy with the way my surgical sites look.
7. People are going to flail. A lot. They are going to want to help you and they aren't going to know what to do. Sometimes they're going to try to do things they THINK are helpful that are actually 1. not helpful 2. more work for you 3. super stressful. If possible, take these attempts in the spirit in which they are intended, but just be aware that people are going to basically get really dumb about certain things because they're freaked out and worried about you. It is OK to simultaneously appreciate that they're coming to this from a good place AND to be extremely annoyed about it. You can say no to offers of "help" that are not helpful. You can also tell people to leave you alone. Feel all the feelings. It's ok. This is not about them. This is about you. Do what you need to do to preserve your energy and your sanity. You are the expert on YOU. And you are ultimately the decision-maker on what you need in your life and what will be best for you. Don't let anyone make you feel bad about this.
8. If you love someone going through cancer stuff: Think about what you're asking of them when you offer to help, because sometimes the things you think would be helpful are actually more work for them. And if they don't accept your help or your advice, remember that they know their situation better than you do. So try not to take it personally, and just follow their lead.
9. Be realistic about your energy levels throughout everything. Staying active is important, but rest is important. If you're feeling bad, tell your medical team. They'll have meds and strategies to share with you.
10. The people who consistently checked in just to say hi and to see how I was doing were so incredible. This tiny normal thing meant a lot to me, and helped me feel connected even while I was tired and feeling terrible. Little things like this (texts! emails! whatever!) are actually very helpful.
I still have quite a bit of stuff ahead of me, so this is not an exhaustive list. But maybe you'll find it helpful.
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