Living With Metastatic Breast Cancer: Telling Loved Ones About Your Diagnosis
Lover of: My son, husband, family and friends, food and animals
What was it like getting the news that your cancer was metastatic?
Hearing I had metastatic breast cancer after being told they believed it to be early stages was devastating, to say the least. At first I went into fighter mode – didn’t cry, just jumped right into asking questions about what needs to be done. However, as I had time to let it all sink in (which I don’t know if it has completely yet, nor will it ever), it became very difficult to wrap my head around it.
How did you tell your friends and family members? What worked and what didn’t work? How did they react, and how did you respond to their reactions?
My metastatic breast cancer is not a recurrence – so when I was first diagnosed (before I knew the stage) I had my parents come over and told them face to face that I had breast cancer – so they were involved with everything moving forward, and they knew I had further tests to determine the stage. When I found out it was metastatic, I called them, and then they came over after. For my co-workers and friends, I sent out an email. I’m sure for many, it was a shocking email to receive, but I didn’t want to go through the story over and over again, so thought a mass email was the best approach for me. Some people called me right away, but to be honest, I didn’t feel like chatting. I probably should have made some comment about giving me a bit of space before we actually spoke. My reaction to the amount of love, hope and support I received gave me even more strength to fight this. For me, this is not something I could do alone.
How do you communicate now to keep those in the loop about your status?
I now keep a blog. It is so easy to just post something once and those who are interested can read it. I call my mom and dad with anything that is new, so they are always in the loop. My husband comes to all my main appointments, so he hears it when I do.
What do you do if you don’t like what someone says to you? How do you react?
I have been lucky in that I have had only one comment that didn’t sit well with me in this whole journey. But while I didn’t appreciate the comment, I realize discussing cancer with someone who has it makes some people feel uncomfortable – they don’t know what to say and sometimes the wrong things come out. I know the people I surround myself with always mean well and I try to keep that in mind.
What are some tips or recommendations to help others communicate with people through their experience?
Everyone has the right to share what and with whom they are comfortable with. Everyone deals with this diagnosis differently – for some it is therapeutic to speak openly, while for others sharing minimal information is what works for them. Ultimately this is our battle and we must decide what we are most comfortable with.
Also, don’t share/hold back information based on what you believe others want to hear. If you are not comfortable sharing details on your diagnosis, don’t do so just because you feel others want to know everything. On the other hand, if you want to talk about your diagnosis, you can’t be concerned with if this is going to upset those who are listening – if so, make sure to have a few people as part of your team who will listen to you at your worst times, no matter how upsetting the conversation may be.
For me starting a blog allowed me to provide an update once, and anyone who wanted to could read it. I think I like being open about my diagnosis, because I want to hear positive responses from people who continue to encourage me. It also educates people on metastatic breast cancer, which I am learning not many people know anything about.
You also don’t have to communicate on your own. You can have your own communicator (partner, friend, and/or parent) who spreads the word on your behalf, especially if you want to update friends and family, but just can’t bring yourself to do it on your own.
What would you like other people to know?
Metastatic breast cancer is a very serious diagnosis; however, it doesn’t mean your life is over. I want people to know that I continue to live my life and right now, cancer is not going to come between that. That is why I communicate so openly about my diagnosis. I want people to be comfortable speaking with me about cancer and see that their encouragment gives me hope and strength everyday. Communication is best when it is a two-way dialogue, so when I post something and I hear back from people with encouraging words, it gives me a little bit more of a push to keep on fighting.