I loved the book The Age of Miracles by Karen Thompson Walker. I had the pleasure of meeting the author a few months ago. In the book, the Earth's rotation starts to slow. The days stretch longer with obvious consequences on daily life with some not-so-obvious effects on personal lives. I found the book immensely readable, creative, and thought-provoking. (My teen daughter thoroughly enjoyed it too. It's absolutely appropriate for that age group.)
My own life has suddenly taken an opposite turn. It feels as if the world has sped up. The days are flying by. There just isn't enough time.
It's only been four days since we had an inkling from my oncologist that I had metastatic breast cancer, three days since I have known for sure. And now, in the middle of the night, it's time I long for. The Earth is spinning so fast... how can it be I've been awake for two hours? Have I spent them wisely? What else could I be doing with those days, minutes, seconds?
I've done so much already.
I wanted to share a few ideas on things I've done already, many of them pertaining to my children. In the dizzying days after a metastatic cancer diagnosis there is so much emotion that it might be hard to think about what to do. You feel helpless. In some ways you are helpless until you get more information. But in the meantime here are some tips about what you can do.
I understand that not all of my readers have children. But for those of us who do, helping children adjust to this news is vital. It not only helps the children but can help relieve some associated stress for the parent.
- Don't share your news until you know for sure what your particular diagnosis is. I don't think you need to know your exact treatment; that takes time. But even knowing a general range of what might be used is helpful. If you have had cancer before children will usually want to know if you will be doing the same thing (especially if it has to do with hair loss) or if it will be different.
- In my case I needed to have a mediastinoscopy with biopsy after my status was confirmed. It's an outpatient surgery that inserts a camera through an incision in your neck to look with a camera and grab some lymph nodes for biopsy. I decided to focus on that concrete event mostly... it's something children can wrap their heads around... Mom is going to the hospital (not uncommon in my household), having a small operation, will be back tomorrow night. I explained the cancer, the metastasis, and answered lots of questions, but I think the "one step at a time" was more easily tangible with the surgery as the immediate hurdle. If you will need an overnight stay for your particular surgery I think it's best not to spring that news on children if possible. An overnight absence is best with a few days' notice. Children, in my experience, are usually a bit clingy after bad news and that would provide the opportunity for follow-up questions and reassurance.
- Be sure you understand your diagnosis. Explain what words mean to children and to your friends. There are many misunderstandings about cancer and stage IV cancer. The word "terminal" might be scary. Stage IV cancer is not the same diagnosis in different diseases. Prognoses vary and some types of metastatic cancer can be slow-growing or respond well to treatment, allowing years of life.
- I think the phrase "it's not curable but it is treatable" is important to teach and use.
- Wait to share your news publicly until after you have told your children (except with a few close friends you can trust to keep the information to themselves. This determination may not be as easy as it sounds). This also gives you a day or two to begin adjusting to the news so that when you do discuss it with your children you might have emotions a little more in check.
- As soon as you tell your children, be sure to tell adults who work with your children on a regular basis. If your children have learned the news, by the time they go to school, lessons, and sports, their teachers need to know. Email coaches, teachers, school administration, guidance counselors, school psychologists, and music teachers. Grief in children is complicated and it's important that all of the adults know and can be on the lookout for odd behavior. Also, they need to be understanding if things don't seem to be running as smoothly at home or a child seems tired or preoccupied. Two-way communication is key. Adults need to know they have the opportunity to bring any problems they see to your attention easily. Encourage them to do so, whether what they observe is positive or negative.
- Use counselors, especially school psychologists. My first call yesterday morning before I left for surgery was to reach the high school psychologist. Because she is in a new school (high school) I didn't even know which person it would be. Even though it was only 9 in the morning when I called, she had already received my email (forwarded from the guidance department to the appropriate person) and had a plan in place to find my daughter during 2nd period study hall. She was able to introduce herself, talk to my daughter, and let her know how to get in touch with her as needed. They set up an appointment to meet to talk more in depth after their initial chat. Paige likes her, feels comfortable with her. This resource is invaluable. After my mother-in-law was killed in a car crash three years ago, the middle school guidance counselor became a refuge for Paige. When she was sad, distracted, needed a place to go have a good cry or talk, she had a safe place with an adult to help her. These individuals are part of my team. We are working together and it's so important to use them.
- I have always felt that it's important to be honest about a diagnosis; that is, open and public. I know this doesn't work for everyone. The downsides of being public about a diagnosis are outweighed by the negative pressure for children if they have to keep a secret and bury feelings about such a serious topic. Children take their lead from you. If you are up front and comfortable discussing it, your children will learn to be that way, too.
- Call your other medical professionals and tell them of your diagnosis. Not only will they want to know because they care, but there may be instances where treatments may need to be examined or medications evaluated more often (for example, my endocrinologist wants to monitor my thyroid hormone levels more often than usual). They are all part of your team. They want to know. Many of the most touching and heartfelt phone calls I got were from my doctors this week. They cried with me, gave me information, offers of help, and caring. It also means if you have a situation when you need urgent medical care their office will already be aware of the situation and will likely respond more quickly to get you in to see the doctor.
- A carefully worded email is invaluable. Accurate information is documented so people don't spread rumors. Friends can refer back to it if needed without asking you. They can forward it to other individuals easily, as can you. Choose your words carefully. The words you use will be repeated so make sure the email says what you want it to say to friends and relatives. The right explanation is much more helpful than a quick one sentence Facebook status update. People will have questions, and you can head many of them off by including that in your email (if you so desire).
I will be posting more tips about what I'm doing in the weeks and months ahead. Hopefully they will help you or someone you care about. There is so much you can't control during this time, and that's unnerving. Even taking steps like these can give you concrete tasks and a feeling of accomplishment that you are helping yourself and those you love.