If you’ve been diagnosed with metastatic breast cancer, here’s my advice to you: Hang on tight, it’s going to be a bumpy ride! Scans, bloodwork, doctor appointments, and tests will consume your life for a little while. Which, believe it or not, is a nice distraction from focusing on the reality of the diagnosis you have been given.
While you are waiting for results, welcome to the wonderful world of “scanxiety.” This word describes how you feel while waiting for results of scans. Sleepless nights, anxiousness, full of thoughts, guessing and Googling, desperately looking for answers! Why me? What is metastatic? How long will I live? How bad will I feel on the treatment? Why is there a divide between regular breast cancer and metastatic breast cancer? I will not tell you not to go to the Internet for answers; I do it all the time, but I will caution you to try to limit your time with Dr. Google. It can be all-consuming and will take you down the rabbit hole if you are not careful.
This disease can be isolating and lonely. I am one of the luckiest people I know because I am surrounded by amazing family and friends who give their endless support and love, but I can still feel alone at times. Joining a support group or an online community is one of the best things a person with cancer can do. Where better to get advice or information than from the people who are going through it? They offer great support, can help answer questions but most of all they “get it” — a safe place where you can let it out and be honest with yourself without judgment.
You should also learn how to listen to your body and understand your “new normal.” Pain, tiredness, and all sorts of strange things will be noticed more now than ever, and becoming more aware of yourself is crucial to sorting out pangs and twinges that may need attention.
Your brain will be filled with so much information, unanswered questions, and worries so I have found it is best to have someone with you when you are meeting with your doctors. Many things can be missed and it helps to have a second or third pair of ears. Stay organized and write down questions you have, I say this as I ALWAYS forget my questions and regret not having better organization skills.
In the beginning I started exercising and doing yoga to help my body and mind. It works so well and gives you the time away from cancer you desperately need. You will have sad days, angry days, happy days, and everything-in-between days. This is normal. You will mourn the future you will be robbed of. Like me, you may cry and cry a lot! What you need to know is that it is okay to feel that way.
DO NOT let others’ advice of “just stay positive” let you feel guilty if you are not being so at this time. You’ll go through the five stages of grief, but make sure you do it on your own time! You will understand how annoying “stay positive” is. This is an inside joke for all metsters! Yes, you’ll also have new nicknames — lifer, metster, and thriver are some of them.
As new member to this club, you will somewhat hold a grudge now to “survivors” — more like jealousy, really. My story (short version) starts with my doctor ignoring me for almost 3 years and by the time I was diagnosed (not by her), it was too late and I was de novo MBC. I like to think, if given the chance, I would have kicked cancer’s ass! I have worked hard to let it all go, but I do admit I am jealous of the Pink survivors out there and wish I was one of them.
One of the most important things I can say is never give up hope and keep fighting. Find your new purpose. Let go of your past life and start living your new one. Give yourself reasons to live. This will bring you strength. My reasons are Naomi (10), Ethan (16), my husband, family, and friends! Strange but true, one of my favorite memories of finding my strength was thinking, “OMG, who will clean the toilet when I die?!” No one else does it and my husband would probably never do as good a job as me! Well, I decided then that my desire for my family to use a properly cleaned toilet pushed me to live for as long as possible! Wherever you find it, just go with it.
You will also find, after all the dust settles, an acceptance: small things that bothered you before will not bother you so much anymore. Your ability to love will expand and a simple hug will be filled with more than it ever had been before. Start your bucket list. This is not a bad thing! The gift of this cancer is time and a renewed sense of living life to its fullest. A new kind of freedom has been given to you.
You will have many scans and tests, many doctor appointments and sadly, treatment will never stop. Progression is inevitable because there is no cure, but that is not the only thing this disease is. Sometimes there will be pauses, and those are the most invigorating of times. You can’t let dark thoughts or sadness rule the time you have left. It is up to you to find the joy, find the love, find the laughter, and find the life! It is there waiting for you to live.
Krista Curley lives in Ontario, Canada with her husband Patrick, their son Ethan, 16, and their daughter Naomi, 10. Krista blogs about her experience at Metastatic Breast Cancer: Now What? You can also listen to our podcast featuring Krista’s conversation with senior editor Jamie DePolo.
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