Telling people
How did you tell your family and closest friends?
I wrote out a message that I copy and pasted to certain people that was pretty vague to start, just saying he got a serious diagnosis. Closest friends and family found out sooner when things were still uncertain. I asked my partner before telling people so he knew who was aware. Don’t feel guilty taking your time sharing with people, absolutely take your time, and you don’t have to tell anyone you don’t want to. You don’t owe anyone anything.
Emotions & mindset
How do you plan for the future when you do not know what it holds?
You can’t! Take it day by day, focus on what is immediately in front of you. Be present, it’s a good skill to learn anyway. I always buy refundable/changeable tickets after this experience, because a lot of plans had to get canceled.
Relationships & support
What kind of support meant the most?
Each item reacts on its own. Counts add up across everyone who listed it.
Who pulled away, and how did you handle it?
This type of experience changes your relationships with people. The real friends are there for you, and provide support in the ways that they can. The friends that get uncomfortable and distance from you, or pretend nothing happened can be really disappointing or not who you expect them to be. End of the day keep a note of it, and there are different friends for different things. These friends can become a more surface-level friendship if you want, or you can decide that that friendship isn’t serving you and let it fade.
Who showed up for you, and how?
At first I was just miserable and angry and didn’t know what I needed, just that I wasn’t getting it. One day I told my friend I didn’t know what would help and what I needed but I knew I shouldn’t be alone, and she had me come over and cooked for me and got me pastries from one my of favorite spots. We just watched tv and she let me rant and it showed me that I just needed that comfort from someone that I could be completely myself with.
What was it like finding others going through the same thing?
It was extremely important. It was horrible but one of my best friend’s moms got diagnosed at the same time, but we were also so grateful to be going through it together. It was nice to have someone that really got me, especially at the beginning. I highly recommend joining a support group or working with a mentor to find those people, because it’s a unique and extremely challenging experience and can feel very isolating for all parties involved.
Looking back
What's one thing you would tell yourself on the day you found out?
The uncertainty at the beginning is one of the hardest parts, patience and grace are key. Once you get through that, at least it feels like you start to regain control.
What would you tell someone who just became a caregiver?
Don’t feel guilty for having a hard time. Don’t be afraid to ask for help. People won’t always know how to help even if they want to, ask for what you need whether it’s to rant or for someone to cook you a meal.
If you could go back, what would you do differently?
I would have asked people more explicitly for what I needed, so that I didn’t get disappointed as much. People don’t know how to handle it, so they won’t necessarily act how you would hope. Asking one of my friends to text me on the days of his last few treatments felt a bit awkward at first, but when she did it made an difference and brought us closer.
What do you know now that you didn't know then?
You have to advocate for yourself with your health!! He was misdiagnosed for months as just having a flu and pumped with steroids. If something feels off/wrong, trust your body. Get second and third opinions. Doctors won’t always get it right or have your best interest in mind, do not go blindly with what they suggest ever.
My care package
The specific products and gear I leaned on. Sharing in case they save you a search. Nothing here is sponsored.
Since he couldn’t use both arms while he was getting chemo, my parents got him a Kindle and it was a life saver. So helpful and easy to bring anywhere, he used it a ton. Would recommend if trying to pick a gift to get someone in treatment.
Helped him with nausea a lot
I gave him a journal that was really helpful to keep track of symptoms, notes from the doctor or questions to ask later, and track his mood/for general journaling. Another item I would recommend gifting to someone in treatment.