First of all, you're awesome for asking that question. While "support" will change for me over time as I go through this process, these are the things that I've figured out for now. Check back here every once in a while. If anything has changed significantly, I will list it here and make it obvious (e.g., bright red text or flashing lights, or even a combination of the two!).
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So far, this is what I've figured out on this already crazy journey:
1) Treat me as normally as possible. I know that cancer is the proverbial elephant in the room, but talking about only cancer gets really, really boring, really, really quickly. That's not to say that you can't or shouldn't ask how I'm doing, but I've never believed in a one-way conversation, so I only ask that you be ready to tell me about how you're doing (yes, even if that means telling me about how exciting it is to watch paint dry). If I'm not in the right place emotionally to discuss the topic at hand, I will tell you, or I will respond when I'm able to.
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2) I'm going to need things that make me laugh and motivational messages. Email me and/or text me whenever you see something that makes you laugh or if you think I could use a little pick me up. Again, I might not respond immediately but I promise that your messages will be read, much loved and eventually responded to!
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3) This one is going to sound a little harsh, but please don't tell me about how you know someone who's beaten ________ (fill in the blank) cancer and that they've lived for X number of years after. I absolutely know that this is meant to be a motivational message, however, it gets under my skin. While IBC is not the only type of cancer out there and is certainly not the deadliest, it is exceedingly difficult to beat, especially when you're triple negative, like me. Hearing about how someone defeated a (likely) unrelated cancer doesn't motivate me and, more importantly, makes me wonder if you've had the chance to learn anything about IBC.
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4) While we're on the topic of messages that I don't find helpful, let's please skip the messages about alternative medicine options (e.g., drink two tablespoons of coconut oil first thing in the morning, preferably while lying on your side and watching the sunrise type). I am following the advice of my doctors and will be following a nutritious and practical diet that addresses my needs and ensures I'm getting the right nutrients. I will be incorporating wellness activities (my energy levels permitting) including yoga and meditation. Messages about the magical cancer eradicating properties of drinking honey lemon water at a precise temperature while rubbing my tummy for two minutes drive me crazy and will be promptly ignored.
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5) If you're a family member or friend of my parents or my sister, please don't forget about them. I'm fortunate to receive so much attention, but they're going to be doing a lot of heavy lifting too. I will use this blog to try to provide the latest information on my treatment and how things are going so you don't have to ask them questions about me. But please do check in on them and how they are doing!
Gifts
Some of you have reached out asking what gifts I'd like to receive and I want to be clear that sending me something is really not necessary. Sending me jokes, links to articles you enjoyed, names of books and tv shows and movies that you like (or your log-ins to HBO, Starz, Hulu, etc.), albums I should listen to, or just a smiley face to let me know that you're thinking of me are more than enough.
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If you're determined to send something, then I'd really rather you donate the money to research on IBC. As I've mentioned elsewhere on this site, there is quite a bit more research needed into IBC. Every penny that is donated counts. If you don't want to donate to IBC research but are passionate about another topic, please donate to that cause. There are so many worthy causes in need. If you can't donate money, please donate blood or your time (or both) to any cause you're passionate about!
For those interested in donating to IBC research, there are two links below that I'm providing:
IBC Network
The IBC Network is a non-profit that was founded by an IBC survivor. They are dedicated to spreading donations across multiple institutions that are doing research into IBC. Please click on this link if you'd like to donate: IBC Network
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MD Anderson Cancer Center
MD Anderson Cancer Center is the facility where I am being treated for my IBC. Their donation page is a little less straightforward since they accept general donations. If you would like to earmark the funds for IBC research specifically, then please follow the steps below:
- Click on this link: MD Anderson Donate
- Check the box "I’d like to choose where my donation will go."
- In the drop down menu that appears, select the option "Other"
- Type in "Inflammatory Breast Cancer" into the open text box that appears.
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Now, if you're absolutely drop-dead adamant about sending me something personally, then I've started to collect ideas on a registry to make life easier. Please note that many of these items are pricey as I'm looking for things that are all-natural and/or organic so as not to conflict with the chemo or they are things that other patients have mentioned that worked for them. I will add more reasonable things to this registry as I go, but don't know all of my needs/wants yet. Bear with me as I find additional items to add to this registry. Again, don't feel like you have to send anything besides your well wishes and suggestions on how to entertain myself!