Sunday, March 08, 2015

The Side Effect I Wasn't Warned About

When I learned I had cancer, there was a lot of information thrown at me. As we learned more about my cancer and decided on a treatment path, it was time to go over all the side effects, the what-to-expects.

The first hurdle was surgery. I was told possible complications, I was told about healing time, and expected hospital stay. I even asked my surgeon how long until I could knit again (she is a knitter and she completely understood my question!).

From there, it was chemo time. The chemo side effects were so serious that for the three chemo drugs I took, not only did I get a list of side effects and what to expect, I had to sign a paper saying I was told the side effects, the possible complications, etc and that I was comfortable receiving said drugs.

Next up, radiation. Again, a list of side effects. A list of what to expect. A nurse going over all of it with me. How to care for the radiated skin, things to watch for, things that were normal, things that I should call if happened.

Side effects on top of side effects on top of side effects. Some minor, some major, some barely noticeable by me, others impairing my quality of life.

Except, there was one side effect no one warned me about. No one prepped me for. I never expected it in a million years.

A side effect of having cancer is making friends with people who have cancer and having to grieve for the friends who die.

While friendship is a good side effect, and one I never expected, grief is the worst side effect I've faced so far.

As I see some pretty wonderful people die from cancer, my heart shatters all over again. And I rebuild it the best I can.

When I was first diagnosed, I was very active in breast cancer groups on-line. I tried a couple support groups. One wasn't a good fit me, but another one was. It was good. And then a friend passed away. And another passed away. And another. And another. And another. Jenny, Susan, Rachel, Jada, Barb, Dave ... all friends who died from cancer.

It was too much. It was just too much for me.

I realize this is quite selfish on my part. Sometimes I have to be selfish though.

And so I pulled away. I pulled away from chats I had participated in. I pulled away from some friends. I pulled back and tried to bury my head in the sand. To pretend that I wouldn't lose anyone else to cancer.

If only. If only it were that simple.

In the last few weeks, several more people have died. My heart has shattered a few more times. Another friend received bad news: treatment not working, time for the next one. I have cried and been angry. I have shouted. I have whined that life is not f*#king fair. I have woken up, and done what needs to be done, all the while wanting to crawl into bed and just hide away for a while.

Even when I try to build walls, to protect myself, life ticks on. It keeps going. Friendships still get made. Good moments are celebrated. And sad moments still happen.

I wasn't told about this. I wasn't warned.

I'm not sure someone can be warned though.

This is life: it is comprised of birth and death and the time in between. Some get a lot of time in between and some people are robbed of time.

And I can't try to hide my heart away. I can't try to protect it. My life is richer and better because of the friendships I have. I've learned things from them. I carry some of their words in my heart. They have helped me on bad days and celebrated with me on the good. I hope I was able to do the same for them.

It doesn't make my life better to pull away, to hide, to try to protect myself. I would much rather have wonderful friends in my life. Yes, it is hard to say good-bye to them when the time comes. Yes, my heart is heavy with loss. Yes, I will cry and be angry and sad and upset and pissed off.

But I can't hide away and pretend like nothing bad will happen. Because it does happen. And I can't let fear hold me back.

As Helen Keller said, I would rather walk with a friend in the dark, than alone in the light.

14 comments:

  1. Beautiful post, Brandie. I wasn't prepared for this side effect either. It's hard to lose those we come to care about - even those we never actually meet in person. We can cherish the memories and keep them as treasures of our hearts though. That's what I do. Thanks for the post.

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  2. Lots of love to you, friend. Your willingness to keep your heart open when the risk for pain is so high, shows how resilient you are. You inspire me. I am sorry for your losses. I hold hope for you. <3 <3 <3

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  3. I can totally relate. I was so hesitant at first to join groups because the reality is, I'll make some great friends, but I'll also lose some ... that weighs heavy on me.

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  4. This is a beautiful post. I am sending lots of love to you and can relate to you so much! I have made some amazing friends and have learned amazing things. I have had a lot of people pass away lately and it is so hard. I also feel guilty being alive sometimes and thinking what did I do differently. It is a side effect the doctors don't warn you about and I also struggle so bad with this. I am sorry for your losses Thank's for the brilliant post!xx

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  5. I'm sending love your way. I'm in the middle of radiation treatments for early stage breast cancer. No chemo. This is my second go - round with brca. I was in a couple of support groups the first time 16 years ago. One was good, the other n ot. People died in both. This time I'm hesitant to get involved. I'm 73 years old and have lost a few friends in recent years. Death feels too close to me now. The pain of loss is more than I can bear on top of having to deal with my own cancer. I wish for you a full recovery and greater strength to share with others. With love....

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  6. Ahh Brandie how true beautiful girl.

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  7. Thank you for sharing. I volunteered at the cancer center where I received my treatment, in the infusion room, helping those going through treatment, I started a few months after I finished Herceptin and did it for a little over 2 years, then, when about 10 people died of cancer within a one month period, people I helped, had gotten to know well, shared their fears, pleasures, hopes and dreams - I had to quit volunteering, I stopped reading and posting on many sites, actually dropped out of many online groups I was on, I understand what you're saying. It's been a little over a year since I "dropped out", I'm slowing starting to check into some of the sites again, but I'm not sure if I'll ever be able to go back to volunteering, if I do it will be only once a month or less, and I'll have to learn some better self protection techniques.

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  8. Beautiful post! I went back to support group after missing about 5 years and it was the best decision I have made this year so far. I love being back with my sisterhood of survivors. This is a must read...tweeted you out. Lots of love to you!

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  9. It's definitely the shittiest side effect. I'm so sorry.

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  10. Anonymous4:30 PM

    Oh, Brandie, you speak directly to my heart! Diagnosed at Stage IV eight years ago, I threw myself into online and in person support groups. I made wonderful, deep, true friendships...and then the loss began. Slowly, at first, until EVERYONE in my in person support group had passed. Not very supportive, if you ask me. And I continued with some online groups--faking bravery and being a stoic wisdom giver. But the loss continued--the pain and suffering continued until it all became far too much for me. I no longer check in to these sites/groups on a regular basis, but I do touch base once in a while. The names/faces are new to me...folks that I would/could be friends with if I gave it a chance. But the loss of all those wonderful, young friends who came before them makes me skittish...so I remain detached. Cancer SUCKS! ~Colleen Logan Hofmeister

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  11. Have been thinking similar thoughts lately myself. Sometimes, we do need to set limits for ourselves, not so much to pull away, but to choose how and how much to connect. My friend Rach, who died a few years ago, coined the phrase 'fearless friends.' It doesn't mean we never fear, but we choose to love and connect anyway, despite knowing we are bound to grieve for those we lose. We need to respect our own grief, too. Cancer steals so much from us all. Thank you for writing this.

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  12. Brandie, yes, yes!

    Thank you for writing so honestly and touchingly of the unwanted side effect of loss and grief while living with cancer and outliving our loved ones. While everyone is mortal, we cancer folks seem particularly so!

    Brandi, I’ve lived with advanced breast cancer for a very long time and social support is part of my healing medicine. So I’ve had to grapple with staying present for both We and Me – wider connection and personal focus.

    So many cancer support group members have suffered and died. This touches me deeply and these days I usually “lean into” loss, even as it tears holes in the interwoven fabrics of our support net and my heart. Even as I wonder whether I’ve become tatters or lace.

    I remember the excellent advice from Leonard Cohen:

    Ring the bells that still can ring
    Forget your perfect offering
    There is a crack in everything
    That's how the light gets in.
    Anthem – Leonard Cohen
    https://www.youtube.com/watch?v=_e39UmEnqY8

    Brandie, I send love & trust that you too see the light shining through.

    Warm regards,
    Stephanie
    https://www.mylifeline.org/StephanieSugars/updates

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  13. Yes, just YES. Beautifully said.

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  14. You've been a shining star for me tonite. Thank you and take care. Hugs back.

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Seeing your comments makes me smile! Thank you so much =)