Finding Your Support As a Newly Diagnosed Patient
From PEN-Powered Activity Guide VIII: Supporting Your Support System
Finding Your Support As a Newly Diagnosed Patient from Patient Empowerment Network on Vimeo.
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It’s hard to know how much to share, when to share, who to share with, when you have kids, when you have colleagues, when your friends and neighbors see that you’re maybe not doing so well, or know that you’re in the hospital, they want to know, but it really has to be a decision that is best for you and taking care of yourself during that time and your family at that time. So, one of the things that kind of that flows into another question is when friends and family hear that, people jump in and they want to try to help you get messages, phone calls, text. How can I help? What can I do? How are you feeling? For me anyway, I loved that kind of support, but it does get overwhelming, and I know for anyone who has gone maybe to have stem cells collected or staging, when you’re gone for several weeks at a time, it’s really difficult to keep up on those messages and everyone’s intentions are so good. And they really do want to help. So, we had actually set up a Caring Bridge page where I could communicate on my own time or my husband could communicate the information, so really, like you said, doing things on your own time and just disclosing as much information as you want to.
There was a patient who had asked me how to deal with a family member who as they were talking about their myeloma, as he was explaining it to her family, that person got very choked up, and so she said, I felt like I was trying to take care of them as I was dealing with my own diagnosis, so I didn’t really know exactly what to say other than just be sure to take care of yourself at that time, whatever I pray for you is going to be the best… Whatever is best for you is going to be the right thing for you, but the next question I had is when people do start asking, how can I help… Can I drive your appointment? Can I bring meals to you… Maybe you want them to help out, which is a pretty easy one, but what if you don’t want them to help out? Again, these are questions your doctors might not be able to answer, but they happen a lot with myeloma or cancer patients, how do you handle that when people are asking, either you don’t have the time to respond, or maybe you don’t want the help, have either of you have any of you had that experience with your friends and family network.
Yeah, I had a lot of people jump in and offer meals or whatnot, in the beginning, I accepted. Especially in the beginning when I was starting to…Well, when I was in the hospital too, I was doing my treatment, I was learning how to do dialysis, so the first two to three months were kind of hectic, and I had a friend who offered. She’s like, every Wednesday, I’m going to bring you a meal.
And I accepted that up until about like Thanksgiving. And I called her and I said, I’m back on my feet. But I reserve the right next year when I have to have my stem cell transplant and be in the hospital again to ask you to help out again. And she says, definitely. And same thing with other friends, I was on a renal diet, so they want to know what can we make for you, so you just tell them, but there does come a point in time where you say, I’m doing good now, but down the road, can I call you and ask you to help out again with meals, and then after my stem cell transplant, before I came home from the hospital, a group of friends were like, We want to come to clean your house, and I said, Great.
So, they did come and clean my house, and that was, I have to say that’s uncomfortable because now they’re like all over your house, and you don’t know what kind of state your house is going to be in ’cause you’ve been in the hospital for almost three weeks, so you’re a little embarrassed about the dust bunnies and how bad the bathroom might look, but it was welcome help, even though you might be a little embarrassed about how dirty your house really is, but I think that it was.
For me, it was easier to say, I don’t need to help right now, but next year or in a couple of months, if I need some help, can I call you that and ask for help, so that’s maybe one way to… If you don’t want the help right now to still not totally shut them down, but say, I’d like to have some help in the future.