“So, they got it, right?”

A couple of weeks ago I was asked this question by a well-meaning acquaintance in the grocery store. The question came after I told him Bruce had surgery. I didn’t mention there were two, that twice they’ve cut into my husband’s skull.

He cares. People care. I understand this.

What ISN’T understood is that glioblastoma multiforme (GBM) is unlike other cancers.

  1. with cancers such as breast and prostate, several treatment options are available
  2. funding and research for many other cancers is well-established
  3. for GBM, neither 1. or 2. is true
  4. because of 1. and 2., little is known about GBM
  5. the blood brain barrier (BBB) prevents medication from crossing into the brain, severely limiting treatment
  6. the tumor(s) can be surgically removed (resected), but often some is left behind
  7. for those whose tumors involve too much healthy brain tissue, it is inoperable
  8. even with “gross resectomy,” (when they get >99%), inevitably, cells are left behind
  9. the standard of care (SOC) is surgery (if possible), chemo and radiation
  10. when tumors recur, they come back stronger, more aggressive, less resistant to treatment
  11. such tumors can double in size in weeks
  12. glioblastoma multiforme is almost always a terminal diagnosis
  13. statistics are frightening: the prognosis is 12-18 months
  14. this leaves very little hope, futures irrevocably changed, and families destroyed, meaning…
  15. …the pain is indescribable.
  16. NO ONE knows what to do or say, including us.
  17. The point of this post: To wipe out GBM, awareness and understanding need to increase.
  18. Another: Families need help, compassion, patience, and understanding unlike any we’ve known. 
  19. Another: We do not know how to articulate those needs.
  20. And one more: Profound pain does something to a person; it changes everything.

THIS cancer is unlike any other. THIS cancer destroys.


I posted a question recently in an online, GBM forum. I asked readers if, among family and friends, they notice a general lack of awareness about GBM, and a continual need to explain it and what it does. The response was a resounding yes.

My family may be the exception: we are very familiar with brain cancer. It was the cause of death for Bruce’s uncle in the 50s. Two former (female) co-workers of mine had GBM. A former co-worker of Bruce’s died from GBM several years ago, and, sadly, my best friend’s husband died six years ago from gliomatosis cerebri (a rare form of brain cancer, but the treatment and timeline were much the same). Some families have never heard of GBM until their own diagnosis.

Due to #3 above, there is a continual need explain GBM. Due to #17, while this is painful, frustrating, and exhausting to the family…

I won’t shut up, and

I won’t give up, and

I WILL keep fighting.


I’ve read countless posts in the GBM forums addressing this issue. GBM families all say the same thing: few people appear to understand, either about GBM itself or how to interact with families experiencing this devastating cancer. The question then becomes, “How can we improve understanding?” Those in the thick of it must speak out:

  • I wrote a post a while back about what it’s like to be me after my husband’s GBM diagnosis. Few people know what to do or say or how to act towards us. Twelve days after Bruce’s second surgery, and coming from a place of intense pain, I addressed what is helpful and what is not. I used examples people shared with me, some of my own, some from forums, collectively referred to as “recent interactions.” You can read THAT POST here if you’d like.
  • I discovered a blog written by a woman living with GBM. She recently wrote a post about helpful words that are not helpful, and one about the impact cancer has on a family and relationships. Her posts echo these same issues. No, they nail it. I will be sharing some of LAHLA’S quotes in upcoming posts.
  • When I saw the following article by Donna Freydkin, I had to share. She addresses–precisely and strongly–the issue of helping others understand what is helpful and what is not, and the plight of those fighting GBM.  I urge you to take a few minutes to read her valuable words.

https://www.huffpost.com/entry/i-lost-my-husband-to-the-same-cancer-john-mccain-has_b_597b72bce4b06b305561d02f


The creation of Finding Merle has been a great joy in my life. This space and place has been my only release since diagnosis in October. FM, henceforth, it is my platform. Why? For GBM, there is no cure.

Glioblastoma multiforme needs to be understood so that families are no longer shattered by senseless cancer, so that families and those they love can better deal with this, and to help find a cure. Honey, you’re so very worth it.

hoskins bruce_christmas 2007

In photos the eyes are ALWAYS closed. ❤ 

The answer to the grocery store question: No.


Blessings and thank you for reading. ❤


BTW, who uses words like henceforth?

  17 comments for ““So, they got it, right?”

  1. February 11, 2019 at 3:53 pm

    Very well said! Let’s keep in touch and get through some of these hard times together.

    Liked by 1 person

    • February 11, 2019 at 4:14 pm

      Thank you, Lahla! Please, let’s do. We need this now more than ever. I’m glad I “met” you. Have a good evening. 🙂

      Liked by 1 person

  2. February 11, 2019 at 11:32 am

    I am all too familiar with this kind of cancer. I understand terminal. I grieve with you that not only do you have the pain of the illness but also the pain of ignorance from “well meaning” but clueless people. Much love to your family.

    Liked by 1 person

    • February 11, 2019 at 12:19 pm

      As I said to Ann, everyone has been wonderful to us, but if it appears some do not understand, it isn’t their fault. There is no blame, just extreme awkwardness and a desire on our part to create change in the conversation. I was familiar with brain cancer, but ignorant about what to say to those affected. Everyone cares, but few know what to say. Hugs to you, and thanks for stopping by. 🙂

      Liked by 1 person

      • February 12, 2019 at 12:49 pm

        Thanks. I never felt you were blaming, just alone in your understanding of the true situation.

        Liked by 1 person

        • February 12, 2019 at 3:54 pm

          This is the ONE thing I dislike about writing in a public forum; we can never be sure of how we come across. I knew you didn’t think I was blaming. Those who know me know that is not my style, that I tend to do the opposite and blame myself. I appreciate all of your comments and insight and am so glad we’ve “met.” 🙂

          Liked by 1 person

  3. Amy
    February 10, 2019 at 4:55 pm

    Unfortunately, I do know more about glioblastoma than the typical person also because of my cousin. You would think that after Teddy Kennedy and John McCain both battled this terrible disease that the public would be better educated.

    Liked by 1 person

    • March 5, 2019 at 3:07 pm

      Once again, I see that a couple of your comments went to the trash file. I’m not sure why this happens. I’ll check it more often. And, YES! I don’t know why those with a voice and money don’t say more to help increase awareness. Thanks, Amy.

      Liked by 1 person

  4. February 10, 2019 at 12:28 pm

    As one of the many people who is unfamiliar with GBM, I want to thank you for sharing this. People do want to help, but you’re right, most of us have no idea how.

    Liked by 1 person

    • February 11, 2019 at 12:13 pm

      Thanks, Ann. Yes, we have never questioned other people’s sincerity; we’ve been blessed with boatloads of that. Still, conversation about this can be very difficult and is almost always awkward. We blame no one; just simply want to open conversation about a difficult subject. ❤

      Like

  5. February 9, 2019 at 7:56 pm

    The heartbreak here is palpable. The frustration unimaginable. It’s beyond comprehension.

    Like

    • February 11, 2019 at 12:10 pm

      That’s all true, Marlene, yet, we are hanging in there and each day I look for reasons to smile. I have to keep both eyes wide open, but there are reasons. Hope you have a great day! 🙂

      Liked by 1 person

  6. February 9, 2019 at 6:57 pm

    I have sporadically followed your blog over the past few years as a fellow blogger. Although I don’t know you, ai want you guys to know how sorry I am about your husbsnd’s Illness. Your writing is illuminating. Wishing you peace.
    Ellen Brosnahan

    Liked by 1 person

    • February 11, 2019 at 12:04 pm

      Thank you so much, Ellen. I appreciate your kind words. I hope you have a great day! Thanks for stopping by. 🙂

      Like

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