Help them help you!
You friends and family love you and want to support you while you fight and battle melanoma. The challenge for them most often, is that they haven’t gone through this themselves and they don’t always know how to help. They need to be trained on how to help, and the best thing you can do with them is to be upfront and clear about what you need, what you want, and what I call the “ground rules” of helping you. Tell them the “dos” and “don’t” for what you need and how to relate to you.
Here is an example of what ground rules might look like:
- Don’t ever say the words “your melanoma” to me – it is not my melanoma. I didn’t invite this melanoma into my body, I don’t want it here, and it doesn’t have my permission to stay. It’s not my melanoma, it’s just “the melanoma” and I’m going to be kicking it out of my body.
- Don’t tell me you’re worried about me. That makes me nervous. I need to hear that you’re not worried about me. That you believe in me and my ability to win this fight.
- Don’t always focus on melanoma when you’re talking with me. While it’s true its my fight right now, and hardly a minute goes by that I don’t think about it, I am much more than this, and frankly, not talking about it helps me keep my mind off it. So its ok to ask me about how things are going, but lets spend most of the time talking about other stuff.
- Its really exhausting fighting this, and the treatments are hard on my body. I’m really happy to see you when I see you, but I don’t have much energy to talk for long periods of time. So please keep the visits and conversations short and sweet and very positive and encouraging.
Ask them for help and let them organize:
- My wife and I had friends and family rotate through the hospital, each one staying one night, when she was in treatment or recovering from surgery. It kept her spirit up, shared the burden of keeping watch on her, and also gave them something to do to be helpful.
- We also had a friend set up a rotation where different people would stop by and bring food, help clean, do laundry, etc. It was a great way for them to get to see my wife, say hello, share some love and joy, help out a bit, and yet not talk with her too long to conserve her energy.
- Sometimes the burden of the administrative things like getting copies of tests and scans and records from one doctor to another, was very time consuming, so we often let friend and family help us with it. My wife simply wrote and signed a letter allowing others authorizing to get copies of her medical records, and then they could take care of it for us.
Keep them informed
Its hard to keep everyone informed through individual conversation, but you can do this easily through email or by using some great websites like www.carepages.com. Your friends and family all want to know how you’re doing, what you’re doing, how you’re feeling, etc. But all of those questions from all of those people can be difficult to hear constantly. My wife had me send out emails to a list of 150 friends and family to keep them updated after major decisions were made, or as difficult treatments were going on. I have seen some people keep blogs as well. My wife isn’t a blogger, but some people find it to be a very effective way to keep everyone informed. Sites like carepages.com allow this kind of updating and blogging and also allow friends and family to comment and send messages of support back.
Your friends and family can be an enormous asset or a giant burden and energy drain. The best way to make sure they are helpful is to be clear with them about how they can help and what you need, and set the ground rules upfront.