I wrote a blog post recently that really resonated with a lot of people about how I feel about dear friends dying and how hard it really is to live with a terminal disease. Yes, despite some efforts to recast Stage IV metastatic breast Cancer as “chronic,” the rate of 116 men and women dying per day in the US of the disease clearly confirms that categorization as incorrect. Attempting to minimize the severity of the diagnosis will only backfire, in my opinion. Metastatic Breast Cancer (MBC) is a terminal diagnosis that limits the life expectancy of anyone diagnosed.
Anyway, several of the comments on my post pointed out that while I came clean (not an easy thing) and admitted that I indeed need help, I did not delineate how I would prefer that help be offered. In light of that input, I decided to sit down and create a list for those you who are interested. Feel free to disregard if you are not!
I’d like to take a moment and recognize Cheryl Kaufman, who when reading my blog post about needing help, she sent me a much appreciated box of goodies!
First of all, don’t overlook the power of simple questions like … how are you? I may not answer right away but I will eventually and the positive effect of knowing someone is thinking about me is profound. It’s not a bother to reach out. Also, there are specific times that my anxiety is increased, like when I have a new symptom or pain, or when I have a scan coming up, or when I’m starting a new medication. I try to alert people when these are coming, but it’s also not a bother to ask if someone is coming that would create additional struggles.
Secondly, advocacy and sharing information about Stage IV metastatic breast Cancer is huge. Sharing my story with others, encouraging people around you to take little known symptoms of breast cancer seriously, and suggesting that no one buy “pink” products that don’t help breast cancer patients, these are all good things everyone can do in their own communities. Sharing my blog or other posts about the actual experience of living with a terminal illness is another idea.
Third, I have a very restricted diet, so sending food could be problematic. We do order from Uber eats regularly, so a gift card would be extremely helpful. I also cannot eat sweets or carbs, but my kiddos love chocolate! Best advice in this category, probably not a great idea to send food.
Fourth, I love to read. I read every day. Mostly on my iPad or phone, but I also love to hold books in my hands. Sending me your favorite book or books would be amazing. I have a Goodreads profile with thousands of books read, so if you are thinking of getting me a book, feel free to friend me and see what I might not have read. Or ask!
Fifth, tickets to do something with the boys is a great option. I’m literally cleaning out my closets and drawers in my version of Swedish Death Cleaning, so sending me items is not usually helpful. They are extremely active and love to be outside and we have lots of options here in Florida. If in doubt, just ask!
Sixth, I get an infusion once a month and I love wearing socks because the infusion center is pretty cold. I also love wearing socks that have applicable sayings on the bottom. I’m sure one or two of you have seen some of the socks I have and you’ll know that I don’t mind sarcastic or profanity laden sayings. Socks are a great conversation starter in the infusion center! Just a note here, I don’t need any more slippers!!
Seventh, aromatherapy options. I do love candles and essential oils. Anything that is formulated for “calm” is a good idea. I do prefer doTerra as a company because of how they source and process the oils, generally. I can’t think of any specific oils or blends that I don’t like but when in doubt, ask! There are also some cool jewelry options too in order to carry such scents everywhere. This is especially key since I’m in and out of medical offices and infusion centers, etc, and it often doesn’t smell good.
Eighth, pajamas or yoga clothes. I somewhat tongue in cheek tell people that I no longer wear clothes. I’m either in pajamas all day, differentiating between nighttime and daytime pajamas, and I go to yoga three times a week. Can’t go wrong with comfy clothes! I also have tons of comfy blankets, some of which have been permanently stolen by my kiddos — so, blankets are not a need.
Ninth, I have lots of appointments and infusions. I often go to these appointments alone. While some appointments are ones that I need to attend alone, I’m usually open to someone coming along. Infusions, especially.
Tenth and finally, sometimes I need to talk about cancer. Sometimes that’s all I can think about. But I also need to be reminded often about how I still have a life to live and there are important topics outside of cancer. Parenting, for instance. Talking to people, engaging in the wider world, and focusing on something other than impeding death for me and my friends, is important.
I hope some or all of these suggestions are helpful for people who are interested in knowing how best to support me or someone else who has cancer. Remembering that we’re still here, we’re still human, and we still need community is literally the most important for anyone in a crisis like cancer. I’m not suggesting it’s easy, just as many important things worth doing aren’t.