Dear newly diagnosed fellow breast cancer thriver:
The beginning is overwhelming in every sense of the word. In fact, the word overwhelming does not capture the initial feelings of helplessness and fear and worry and every negative emotion you can name.
For me, we though I was stage II only to find out a few months later that the cancer had in fact spread to all of my bones. In many ways the second notification was far far worse than the first, but the same tools I’d learned with the first diagnosis applied to the next.
First of all, we all go through feeling abandoned. The sad fact of the matter is that no one really knows how to respond and there are very few people who will stick by you during a cancer diagnosis. Having a terminal diagnosis truly does make it worse. The one thing that makes me able to weather the hurt of being abandoned is to try not to take it personally. You will find out who your friends are very quickly. The relationships with those who stick by you will change. Everything changes and not holding onto the past is a good first step to rolling with the changes. Let the people who can’t be your friend go and you will be lighter for it.
Secondly, the worst reaction is the jealousy that comes with this dx. There are people out there who want the attention we as cancer patients and metsters get. It’s hard to fathom why anyone would want a diagnosis just to get attention, but it happens and it’s hard to get used to. I love the Southern phrase “Bless your heart.” I use it frequently for those people who want to share the light that I shine on breast cancer and particularly the issues we metsters face daily.
Third, you will be bombarded with a variety of “cures.” If you choose not to buy into (and the “cures” are often ridiculously expensive), the advocates of such “cures” will become angry and say hurtful things. I use the block feature on social media to get away from these people.
Fourth, in an effort to make themselves feel better, there will be those who blame you and whatever you did or didn’t do for being the cause of your cancer. No one can point to any particular cause or lack thereof. Getting cancer is not your fault and you should use your block button freely.
Fifth, volunteering and assisting others in need is a wonderful way to appreciate what you have and to take your mind off of your own situation. Sometimes helping others with cancer can be triggering, but I have also found that helping others in the breast cancer community is the most rewarding experience. We uniquely understand what another breast cancer thriver is dealing with and that togetherness is huge. Remember, a burden shared is lighter.
Sixth, give voice to your concerns, your anger, your triumphs, your struggles. Write, speak, blog, tweet. Talking about what I’m going through has been huge for me. It helps me work out my feelings and I’ve met so many others who feel the exact same way. So many people don’t know how cancer works, how cancer affects the whole person, the whole family, the whole circle. Talking about the lack of research and raising awareness will help you and the generations of women who come after us.
Seventh, be mindful of what and who is gifted with your energy. Look up the spoon theory. There are so many groups, so many causes, so many needy people. It’s hard to choose and it’s hard to say no, but I have had to learn how to set priorities and stick with them.
Eighth, find a group. I have young children and I wasn’t able to attend in person support groups easily. My energy and time have to go first to my boys. However, I have found amazing support online. Facebook has been my go to, but I’m also learning more about Twitter. It’s cliché and most often said when raising children, but the idea that a difficult endeavor takes a village is so true. There will be people who you connect with in an entirely different way and you will be better for those connections.
Ninth, I hate the term, “bucket list,” but make a list. Make a list of the things you’ve always wanted to do, but never made the time to do. It’s worth it and the more joy you feel, the more joy you have to share.
Tenth, and finally, plan for your death. Yes, I know this is morbid, but the more you plan and make arrangements, the less your family will have to worry. Start with legal documents. You need advance directives and a will and, if you have life insurance and minors, you may need a trust. I’m working on developing a program that locates pro bono attorneys for this very purpose since this can be expensive. Plan your funeral. Make the arrangements and pay for it now. The best expression of love I saw was when my grandfather planned his funeral down to the last details and all my grandmother had to do was show up. It resonated with me. All she had to do was grieve, not make any decisions. It was beautiful.
These are my top ten and I’m sure I’ll be adding to them as I learn more about this new adventure and as I work through how I feel about it. In the mean time, connect with me! I’m active and I’m opinionated and I love fiercely and completely. I’ve never been one for half measures and I’m all in.
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