Family and friends are spoken of often, but my interpretation of family is anyone around me that serves as my village.
These are my homies, my friends, my cousins, aunties, and brothers. They are my mentors, my realtors, my high school friends, my college friends, my work colleagues, my workout buddies, etc.
The point is that your village is whomever you identify as family. Everyone wasn’t born into the perfect format of “family”; some of us had tough times. So, when it comes to living with metastatic breast cancer (MBC), my village is my family of my choosing.
Before I give you a bit of my story, firstly understand that no matter what, being diagnosed with MBC isn’t your fault. Don’t let anyone tell you that.
My name is Shonte’ Drakeford. I’ve been living with stage 4 metastatic breast cancer since 2015 at the age of 31. I’m currently 36.
My cancer was detected via self-discovery. Metastatic breast cancer was my initial diagnosis, also called de novo. This means it had already spread beyond my breasts before it was discovered. The cancer has spread to my lungs, hip, spine, and rib.
I’m a nurse practitioner by trade; Washington, D.C., native; military spouse that has lived all over; and farmer. I’m an extrovert, super silly, optimistic realist.
Telling my village that I have not just breast cancer, but stage 4 breast cancer, was the hardest thing I had to endure — even more than getting the actual diagnosis.
Here are a few things I’ve learned.
Take your time. Tell whomever you want when you want. That’s the goal.
Saying the words “I have cancer” is hard to let anyone know, let alone yourself.
If I were to give my suggestion on who to tell first, I’d say let your partner/spouse/best confidant know first. Whomever your “person” is. I, of course, let my husband and my best friend know at the same time because they were both there.
In my experience, your “person” possesses the strength when you are not strong, the joy when you have none, and is the information obtainer when you can’t absorb it all.
You tend to worry about their response. But this person will likely be your “wingman,” so you can be fully expressive in all your emotions, whether anger, sadness, confusion, acceptance, etc.
Allow your person time to process the information, and ask all the questions they need. Make it clear that you will need to lean on them for FULL support and ensure they can handle it.
If they can’t, understand they may need breaks at times. It may help to have a backup wingman. Once you and your key person or people know what the plan is, that’s when you both decide when and how to let others know.
If you want to keep this a secret for a while, that’s your choice as well. I do encourage telling a few folks (about 2 to 3 people) because dealing with this disease alone can be daunting.
There are various ways to let others know you have metastatic breast cancer. When I told others, I took the approach of delivering the news in an optimistic format because that is my nature. I felt like this helped reduce others’ anxieties, feelings of despair, and worry.
In an effort to not keep repeating the same story, because this is very exhausting, I delegated. My husband informed the heads of each family household. We split telling our friends and mentors. We then told the lead friends/family members to let others know in their families. Then, ultimately I opened up to my social media friends maybe 9 months after diagnosis.
I was open to having people call me and ask additional questions, but if you are not, simply let them know that although calls, texts, and thoughts are appreciated, please refrain from contact at this point so it gives you time to process.
Other helpful formats to deliver the information are by sending mass emails, mass texts, creating a blog site, writing a letter and mailing it, or having others say it for you.
Although I do not have children, I do have God-kids. I understand how this can be difficult to address. From my experience, the main goal is to try not to hide your cancer diagnosis but rather make a plan on how to explain this in simple terms based on their developmental age.
Here are some other resources that may help:
So the message is out that you have breast cancer. Now it’s time to explain metastatic breast cancer to the village. My goal was to explain the facts and provide clarity.
When I told people that I had stage 4 metastatic breast cancer, there was a lot of confusion and for some people the instant thought in their minds was death, but again because I delivered the information optimistically and there were less tears and fear.
I told most of my village something like this:
I have breast cancer, and it’s stage 4, the highest stage. It has spread to my lungs, spine, hip, and rib. I know this is hard to hear, but there is a plan, and as long there is a plan there is hope, and as long there is hope, there is joy and acceptance. Because the cancer has spread, this does not always mean instant death. There is a possibility that I can live with this for a long while. How long is indeterminate, but as long as I am breathing I will enjoy each waking moment and I ask you to help me achieve this. Of course I have my fears and concerns but I won’t allow those emotions to outweigh my spirit. I do want you to understand that I will be on lifelong treatment and there is no cure at the moment. Treatment can include surgery, oral medications, IV therapies, radiation, and more. There isn’t a one-size-fits-all. Please understand that I will have good days as well as bad days, but I have days.
Your way will be your way, you can give details or not. My advice is to be open and honest. Give them the real tea, but also set boundaries, such as stating that you are in charge of your medical treatments and although advice is welcomed, please provide it only when asked.
If this is a recurrence for you, you may want to let them know that it isn’t the same as before and will be different. It can help to provide them with information to get further details such as websites, support groups, or therapy.
Some helpful sites I’ve used include:
Simply put, some folks may get angry at you for having cancer or may not accept that you have it, or just are overly emotional in your presence.
This can be overbearing for you. Understand that you do not have to deal with this. If anything, it will provide clarity of who can handle this and who will be included in your village.
My advice?
- Don’t let others project their feelings and emotions on you, but also be understanding of theirs. It is a hard thing to process.
- Be prepared to have some village members not speak to you any longer. It could possibly be due to their fears and not knowing how to be around you anymore, or for “not wanting to see you like that.”
- Help them understand. It’s not about them. Let them know, for example, not to give advice. People who are suffering don’t need advice. They need comfort and support. So they can say, “I’m sorry,” or “This must really be hard for you,” or “Can I bring you a pot roast?” They shouldn’t say, “You should hear what happened to me,” or “Here’s what I would do if I were you.” And don’t say, “This is really bringing me down.”
You will hear MANY times, “I’m so sorry this is happening to you, if you need anything please let me know.”
I do not prefer this phrase because it’s very blanket, and makes you do the work for them, but if it is mentioned, take them up on it and make them put their words into action. Call them up, don’t be shy!
This is the time to lean on help. This also helps them understand what it’s truly like living a day in your shoes. Some folks just need to see it. This isn’t pity, it’s reality.
Give your family a link to a gift registry, just in case they don’t know how to help you. You can create it on Amazon or use a site like Mend Together. Put items on there that you know will help aid in your personal quality of life.
- Consider getting a service or therapy animal
- Let them love on you because they can sense your good and bad days
- Allow them to help improve your mood and keep you active
- Get a pet sitter, because at times it’s tough to take care of them.
I have a farm with ducks, bees, chickens, and crops. This totally helps me focus on other things than cancer. I volunteer, I read, I listen to music, I travel. My friends are great at making me laugh and not isolating me or making me feel different.
Let them know you’re still you!!
- Celebrate life how you want. You may hear the “sit down,” “rest,” “you’re doing too much” comments. Tell them, “Hey, I am going to live as best as I can now until I can’t because I don’t know how long I have. Please don’t make me feel worse. Help me celebrate!”
- Try to find your new normal and realize change will happen. Include the family in this change. Continue to reach your goals. I went back to school for my master’s degree.
- While enjoying your life, be mindful of your emotions and get the help you need to adjust. Don’t ignore the anger, frustrations, mood shifts, and sadness that happen. Learn how to cope through them. When I have my trigger days, my husband notices it and he allows me to feel my feelings.
- Have cancer-free days. Tell the family you don’t want to hear anything about cancer every Sunday of the month or during the weekend or whenever. Help them understand that you are not your cancer, it’s just a part of you now.
Do what you desire to help the village that you selected be a part of your journey. Some will help, some may not, relationships may blossom, some may dwindle.
At the end of it all, this is lifelong and quality of life is essential over everything while allowing peace and support. Do not feel bad for anything. Ask for help only if it will help your joy.
Shonte’ Drakeford MSN, CRNP, AGNP-C (she/her) is a 36 year-old Washington, D.C., native who grew up in foster care. She is a board certified nurse practitioner, army wife, farmer, German Shepherd mama, and a friend to all. She was diagnosed with stage 4 metastatic breast cancer in 2015 at the age of 31, as her initial diagnosis. The cancer has metastasized to her lungs, hip, rib, spine, and lymph nodes. She also has a genetic trait for colon cancer. She is triple-positive meaning the cancer grows from estrogen/progesterone and the HER2 receptor. She started cancer detection early, at the age of 25 but unfortunately was denied and delayed early detection diagnostics for 6 years until current diagnosis. Treatment will be lifelong and this condition is terminal. She has been SURVIVING and advocating these past 5 years while living a life without fear, as positively as possible. Cancer will not stop her from her aspirations in life.