What it’s like to be me

I follow Maria Shriver’s Sunday Paper, the I’ve Been Thinking, weekly posts. I follow Maria not because I know her, but because on a weekly basis, she seems to hit the target; she “nails it” with everything from family to community to world news. Maria tackles relevant subjects, and I find I am inspired by her thoughts. Today, Maria’s post is titled What’s It Like To Be You Right Now?

The title gave me pause, because, like Maria, I’ve been thinking.

It seems it has been a lifetime, but it was just ten weeks ago that our world crashed. My husband was diagnosed on October 10 with brain cancer, specifically glioblastoma multiforme. It cannot be cured.

When something like this happens, nothing seems real. I felt like I walked slower during those firsts horrible days, as if I was trying to move through water. I felt as if the world suddenly closed in on us, that there wasn’t sufficient air to breathe. In the wee hours, upon waking and remembering, the reality is crushing; it is that same time–every single day–the dawning that the nightmare is inescapable.

People are interesting, and I mean that in the most respectful* way. Most folks want to be helpful, some ask what it is that we or I need. I know their hearts are in the right place.

But the truth is, most people don’t fully understand. Through no fault of their own, they can’t and they don’t. Phrases like, “I totally get it,” or “I understand,” or “I know” seem inappropriate and even abrasive. Probably the very worst offering is, “If there is anything I can do, please let me know.” A very close second is total absence.  People “don’t know what to say” so they stay away completely. This is the worst hurt imaginable.

Since this needs an explanation, I’m writing right now, today.

Again, people mean well, and my intent is not to hurt. Our friends have pure hearts, otherwise they wouldn’t be our friends. However, resources and education are sorely lacking with respect to how to treat people with terminal cancer. Sadly, most of us don’t know–how can we?–unless or until it happens to us. We need guidance.

Without offending others, I hope to make a little headway with this, right here, right now. Below are a few examples of recent interactions, how they can be avoided, and how we all can truly help a hurting friend.

  1. If there is anything I can do, please let me know.” In times of crises, folks are hurting and scared-out-of-their-minds. They CANNOT articulate what they need. Period. Solution: Just do it. Don’t ask. Show up. Be there. Examples: Leave a plate of cookies on the porch. Come over and mow the lawn. Bring a few groceries–most people still need milk, eggs, and tp–just make it happen. Tell me you are our ride to the next appointment. Leave a bottle of wine on the porch. Text me with hearts and warm wishes. Brighten our day with a bouquet of flowers. I can’t begin to tell you how much your initiative matters. Remember, we are unable to reach out.
  2. When someone says, “Whatever you need, I’ll make it happen” but when asked, I hear excuses. I asked a friend to handle something but heard, “I’ve never done that before” and “I’ve got a lot going on right now.” I kept silent, but my thought was, “We’ve never done brain cancer before (and you offered, and I really need your help).” Help was declined after several assertions to me that “anything you need, I will make it happen.” Solution: Your honesty about your willingness and ability to help matters most. It goes a very long way.
  3. Please don’t ask, “How are you doing?” Of course you want to know and we know you mean well–besides, we need people we can talk with–but before you ask, please pause and consider the nature of this question. You must be able to imagine how we are doing. When someone has terminal cancer, it isn’t possible to look at the world the way you do. Our joy has been momentarily dashed, and our hope is elusive. In our household, time is of the essence. Read that again. Solution: Send well-wishes that we have a great day.
  4. Avoid sending photos of people we don’t know, i.e. your grandchildren. Avoid sending stories of their cute antics. These things do not make us smile. They do not brighten our day because, as cute as they may be to you, it simply isn’t possible for us to find joy in people we don’t know, have never met, or never see. Solution: Wish us a very good day.
  5. When you can think of nothing to say so you stay away, the hurt we feel is immeasurable. Friends whom we thought would be there, even for well wishes, are not there; folks have disappeared. I understand it is easier to stay away and watch from afar, to read news and updates through email and social media posts. As time marches and as our reality changes, however, writing email and social media posts to update people has become harder and harder. I’ve stopped making social media posts about our life (in fact, I deactivated my FB account). I’ve trimmed the email list to immediate family and a handful of close friends. Solution: Please, send well wishes anyway. It means the world for us to hear from you. Right now, we are hurting and we need normal.
  6. A long time ago, two people close to me were diagnosed with cancer. I was in this same boat. I know what it feels like to be tongue-tied, and to want to stay away. I offer insight because now, I am on the other side.

That, Maria, is what it’s like to be me. Each day I wake up and pray that my husband will have a good day, that the medicine and treatments continue to work. Sadly, he was rushed into surgery December 4 due to a hematoma that developed above the previous surgical site. He came through amazingly well. Three major surgeries this year, and he remains the most positive man I’ve ever met. His attitude buoys me.

Through this post, I hope to educate and help those affected by and those in the cancer world lovingly move forward. A painful example of the lack of awareness about brain cancer stems from the plethora of resources and funding for families affected by breast cancer (to name one); resources and help for families affected by glioblastoma and other brain cancers is far less. Sadly, the treatment for glioblastoma hasn’t changed very much in the past 20 years, yet the outcomes are about the same.

In life, we are challenged with a variety of new experiences. A very good man recently said the following.

Life is full of adventures. Some are thrust upon us and others we choose. This one wasn’t of our choosing, but I aim to make the best of it. I’m not done.” 

~my husband Bruce


hiking Montana, 2017

*There may be friends whom my words offend; that is not my intent. Instead, my hope is to offer insight, to shed some light on those affected by cancer, that we all can move forward with caring and loving behavior towards those we love, towards those who are hurting. Blessings, and thank you for reading. ❤

  21 comments for “What it’s like to be me

  1. December 21, 2018 at 8:42 pm

    It’s like someone hits you upside the head with a two by four and you are just trying to clear the stars away so you can see clearly while you bargain for more time and more information. You grieve for the life you had planned while you adjust to the one built in quicksand. Writing this blog can be sanity saving for you. We can’t understand but we can affirm what you are feeling so you have a sounding board. That’s the one thing we can do to help. Listen. I’ll do my best.

    Liked by 1 person

    • December 22, 2018 at 9:29 am

      Oh, Marlene. You do get this. Everything you said is spot on. Thank you so very much. I learned about Anticipatory Grief, a condition one often feels during a terminal illness, and the caregiver can feel it as well. What I’ve been feeling has a name. It helps to read about that, too. Even though we’ve never met in person, I detect a real friend in you. There are many kind souls in the blogging world and I am grateful. Thank you. ❤

      Liked by 1 person

      • December 23, 2018 at 7:23 pm

        I fully understand because I’ve experienced this. I’m terminal as well but not in the way your husband is. IPF is so different for each person that has it. My sister has it too as did our mother. I’m surprised to still be here and functioning somewhat. So I really do know. I will be here for you as long as you want to share. It’s why I still blog. This community has been extremely supportive for me all these years dealing with the debilitation from Bells Palsy. I haven’t talked much about the IPF yet. Hoping for more time just like you are. I’ll keep you in my prayers and wish you both the Merriest of Christmases and a wonderfilled New Year. Never give up hope.

        Liked by 1 person

        • December 29, 2018 at 2:36 pm

          Thank you so much, Marlene. You did refer to this before but not in detail; I recall reading a little about this in your posts. I do hope you have found support. The bloggers here have been fantastic and it is extremely helpful. When dealing with terminal illnesses which are in a class all their own, it really helps to talk with people who are going through the very same thing. My very best to you, and you are in my prayers as well. Hugs, Karen

          Liked by 1 person

          • December 30, 2018 at 7:32 am

            Thanks so much, Karenlee. I do have support. There is a PF support group once a month that my daughter drives me to and my sister attends also. My daughter is learning a lot as well. She could possibly inherit this as well since it’s the familial variety. There is no way to guess how each person does with the same illness. We are all so different. I’m keeping good thoughts for you both. It’s a strange place to find oneself in. Preparing yourself for the distinct possibility of death while at the same time giving your all to living as fully as possible. I just read a Chicken Soup for the Soul story entitled “Eat Dessert First” Kind of how it feels these days. 🙂

            Liked by 1 person

            • January 1, 2019 at 3:28 pm

              Happy New Year, Marlene. My very best to you. We are following your line of thinking re: tumor response to specific diets. May we all enjoy better health in 2019. ❤

              Liked by 1 person

  2. December 20, 2018 at 1:19 pm

    Thanks so much for sharing your experience, however difficult, and for educating us who want to express our love and healing wishes, but only know the socially awkward and not helpful responses. Much love to you guys.

    Liked by 1 person

    • December 21, 2018 at 11:49 am

      Thank you, Julie. No one knows what to say, including me. I’ve made mistakes and said the wrong thing from the immense hurt this condition brings. It’s just a crappy deal and no one knows what to do or say. Rather than focusing on words, I’m trying to see people’s hearts. ❤


  3. December 17, 2018 at 7:43 pm

    I’m so sorry, Karen! I can’t imagine what you are going through. And thank you so much for using your own painful experience to help educate others on what is and what isn’t helpful when our friends and loved ones are hurting. You’re right; people mean well, but all to often they just don’t know what to say or do. Your post will help a lot of people, and that is a gift!

    Liked by 1 person

    • December 18, 2018 at 7:15 am

      Thank you, Ann. I hope I do not come across as angry; I am not. Rather, I am horribly saddened by this awful condition and, in talking with others, realize I am not alone in my thinking. I hope it will be received as a guide. Thank you for stopping by and I hope you are well. 😀


      • December 18, 2018 at 8:36 pm

        You didn’t come across as angry at all, just as giving some tips for people trying to help someone who is in your situation. And that is very much appreciated!


  4. December 17, 2018 at 12:54 pm

    Of course you don’t have the capacity to tell people how they can help when they ask you. But you have done a good job putting it down in writing.I hope some of your friends read this. I care for you and your family from a distance, but the care is real. Terminal illness is beyond most people’s capacity to absorb. Having just walked along side my beloved sister to her death, I in some small way know what you are facing.

    Liked by 1 person

    • December 17, 2018 at 1:56 pm

      You are so sweet! Thank you so much. I’ve always enjoyed our interactions here; I can tell you are a good friend. I am so sorry about your sister. How lucky she was to have you by her side. Bless her and you! ❤

      Liked by 1 person

  5. Susan
    December 17, 2018 at 6:06 am

    You are loved.

    Liked by 1 person

  6. Amy
    December 16, 2018 at 3:16 pm

    I am so sorry, Karen, and I do think of you and hope that you are getting through each day as best you can. I did not mention this before, but my beloved first cousin also had glioblastoma. It’s a cruel disease.

    Liked by 1 person

    • December 16, 2018 at 3:36 pm

      Thank you, Amy, and it’s nice to hear from you. 🙂 I am sorry about your cousin. Cruel is right, and in so many ways. I was saddened to learn that the treatments for GBM have not changed appreciably through the years, and so, neither have the outcomes. It’s pretty heartbreaking and frustrating at the same time. Today’s post (vent) was long in coming. Bruce resumes treatment tomorrow after a two week “break” which wasn’t a break at all (doctor’s appointments don’t let us rest). We are hanging in there. Thanks for the note. Happy Holidays to you. ❤

      Liked by 1 person

      • Amy
        December 16, 2018 at 3:52 pm

        I hope the week goes well. And vent all you want. Writing is truly therapeutic—just the process of putting your thoughts and feelings on paper (or hard drive) somehow helps.

        Liked by 1 person

        • December 16, 2018 at 4:06 pm

          Thank you, and yes, I have been wanting to write but have not had the focus. I am hoping that will become easier, but we’ll see. Take good care. 🙂

          Liked by 1 person

Please share your thoughts:

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: