Breaking Bad News

Breaking Bad News

As most of you already know, Leah’s first blood test was on her fifteenth birthday – New Year’s Eve 2012. She died 16th January 2014. Her illness spanned one year and sixteen days.

In effect, this means that every month contains some kind of ‘anniversary’ – these ‘hidden anniversaries’ vary in terms of painful intensity. I try hard not to dwell constantly on the past or ‘wallow’ in negativity, but some dates and events are so traumatic that they are very deeply etched into my brain.

Sadly, today is one of those dates, one of the many days that I wish I could erase from my personal history because it continues to feel so very painful. Three years ago today I answered a ‘withheld call’ and grappled to process the very unwelcome information that the stranger at the other end spewed in my ear. While I was conversing with this doctor, Leah, quiet and dignified, sat beside me and did an internet search of ‘myelodysplasia’ and ‘bone marrow transplant’ on her smartphone.

I did an internet search today to see what kind of information Leah might have been confronted with that day as she ‘googled’ while the doctor and I talked. The first article that came up was this one that states ‘Myelodysplasia syndrome is rare in childhood, and most children have a rapidly progressive course.’ The second one states that: ‘The disease is most common in adults, especially elderly people, and the course varies, ranging from an acute, rapidly fatal illness to a chronic, indolent illness.’ and ‘Infection, rather than progression to AML, ultimately results in the demise of most patients with MDS.‘ I had to stop there as I could no longer see through my tears.

Six days later, on Thursday 25th April 2013, Leah participated enthusiastically in her annual Girl’s Brigade display, just like she had done every year since she was three years old.

Climbing wall
Saturday 27th April 2013, undeterred by her recent diagnosis, Leah had an amazing time away for the weekend with her Girl’s Brigade Company.

I’m told that hospital consultants ( and other senior staff) attend training sessions on how to break bad news to patients. To this day, it remains incomprehensible to me that anyone would think that it’s ‘acceptable practice’ to call a parent who you have never met and deliver such devastating news to a mother and child over the phone on a Friday afternoon.

Here is a portion of what I wrote in my journal later that day:

Blog post 19 April 13

I did not ‘google’ anything at that stage – I was scared and I didn’t want to know. It was Sunday night before I became aware of how much Leah already knew. I then asked her to show me what she had been reading online and we talked about it together.

I never imagined that anyone but me would ever glimpse some of my journal entries or that a day would come when I would share my thoughts and feelings as openly as I do now. However, writing is therapy. I derive enormous comfort and encouragement from following the blogs of other bereaved parents and some who have been bereaved in other ways. Not in a voyeuristic sense of course, it just helps to know that I’m not alone and that I’m not going crazy.

Me too

I follow several blogs of people with a Christian faith and I also follow some blogs that aren’t written from a faith perspective. Sometimes I have the time to read all the blogs that I follow, other times I don’t and I periodically do a ‘catch-up’.

A blog that I have recently started following and that is really blessing me is called  thelifeididntchoose (Walking in the Valley of the Shadow of Death). Melanie writes regularly and her posts are reasonably short and they are easy to understand. She writes from a faith perspective and she is authentic and real about how difficult this road is that we walk on as bereaved parents.

This morning as I sought strength to face yet another ‘hidden anniversary’ I clicked on  Melanie’s blog post from Thursday 14th April 2016. I knew immediately that it was God’s word for me in my situation. She quotes from a book by Nicholas P. Wolterstorff entitled Lament for a Son.

If sympathy for the world’s wounds is not enlarged by our anguish, if love for those around us is not expanded, if gratitude for what is good does not flame up, if insight is not deepened, if commitment to what is important is not strengthened, if aching for a new day is not intensified, if hope is weakened and faith diminished, if from the experience of death comes nothing good, then death has won. Then death, be proud.

So I shall struggle to live the reality of Christ’s rising and death’s dying. In my living, my son’s dying will not be the last word. But as I rise up, I bear the wounds of his death. My rising does not remove them. They mark me. If you want to know who I am, put your hand in.

~Nicholas Wolterstorff, Lament for a Son

I read these words and thought “Yes, that just about sums up how I feel, both the positive and the negative!”

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13 thoughts on “Breaking Bad News

  1. I’m so sorry that you received this news over telephone and not in person-I agree that was a poor choice by the doctor. What a brave girl Leah was-to go straight to find information on her diagnosis. I wish no parent or child had to walk through this awful pain of cancer. And I am thankful for people like Nicholas Wolterstorff who write honestly about the heartache of child loss. Even though we wish no one else would ever lose a child, it is comforting to know in our grief that others feel as we do. Praying for you today as you remember this “anniversary”.

    Liked by 1 person

    1. Thank you Melanie for your kind words. It was indeed a poor choice. It got our relationship with him and with the hospital where he is based, off to a very rocky start.
      He is nevertheless a very sensitive, caring doctor, who Leah and I grew to love. He took excellent care of Leah and was devastated when she died.
      Yes we do not wish this grief on anyone but yet we draw comfort from each other. We don’t want others to travel this path, but neither do we like to feel that we are traveling alone.

      Liked by 1 person

        1. A few weeks later, on one of our many visits to his hospital, four different members of staff attempted unsuccessfully to draw blood from Leah. Leah was becoming increasingly distressed. This doctor came in and told them all to leave her alone. He said that he would phone our local hospital who had done Leah’s blood counts earlier that week and those results would suffice. From that day on Leah referred to him as her hero and wouldn’t let anyone speak negatively about him in her presence!

          Liked by 1 person

  2. Yes, I just blogged yesterday about the “Go Around Again” stops in this grief journey. Seems to always be some sort of “trigger.” But as you said, we try not to focus too much on them, yet we must acknowledge them. Such a fine line. But with God’s strength and grace, we overcome. Lament For A Son is a great book. I read it early on in our grief journey. ((hugs)), dear friend!

    Liked by 1 person

  3. Reblogged this on In the Wake of Suicide….trying to understand and commented:
    The following post has touched me deeply. When words fail me then these will suffice. My heart is always broken again and again after hearing about other parents who are in deep grief over the loss of a child. I am thankful for Victoria’s poignant telling of her daughter, Leah’s, illness that ultimately took her life. But I am most sad that it ever had to be told at all. Our faith in God is our hope.

    We know that death has been defeated and our children suffer no more the pain and trials of a life cut short.

    Liked by 1 person

  4. That was so insensitive of that doctor, to relay such devastating news-/via phone.
    30 years ago, I still recall a nurse “taking care of me”, who insisted I stop my crying while I was hospitalized…a few days after I survived the wreck….that instantly killed my husband and two young children. )It was nighttime, and she didn’t want other patients to hear me.) Brother!

    Just as no two bereaved moms grieve the same…the expression of compassion and empathy from medical professionals, can vary so enormously. At least that doctor will probably never do that again…and he’s my hero, too, for keeping Leah from further blood draw pain by standing up to those vultures!

    Peace,

    Donna

    Liked by 1 person

    1. Oh Donna, I cannot imagine the depth of your loss and grief, losing your husband and children – I’m so terribly sorry. How unfortunate you were to meet such an insensitive nurse.
      Although we did encounter some incidents of insensitivity that are very hard to forget, we were nevertheless very blessed by the many professionals who consistently showed us incredible compassion and empathy throughout our difficult journey. Some of these incidents of compassion are also unforgettable.

      Like

  5. Hi Vicky I just wanted to thank you for sharing the blog with me and on your blog post here. Sorry for the late reply, too. I really appreciate your support and your words whether through email or through your writing. Your writing strikes a chord every time!

    Liked by 1 person

  6. I can’t believe you were given that news over the phone by a stranger. What a callous thing to do. You were so right to be angry and upset. How can anyone in a ‘caring profession’ feel it’s okay to deliver that news cold to someone who isn’t with them? xx

    Liked by 1 person

    1. Thanks for caring Jenny.
      It was indeed a rough start to Leah’s journey with MDS and monosomy 7. However I am aware that the consultant in question was also very upset by the outcome of our conversation. Leah’s diagnosis was very rare and most unexpected and I think his objective was to get us to his hospital ASAP and I honestly don’t think he thought it all through.
      He also wouldn’t have factored in the fact that I’m a nurse, so the minute he opened his mouth to deliver medical facts over the phone I was not bamboozled by his technical terms, I was straight in there challenging him with my questions. I think that he naively thought that he would phone me, deliver the diagnosis that would mean very little to a layperson, (flip, I’ve met hospital consultants who haven’t heard of it, but I had already done extensive research) agree an appointment and be off the phone in 5 minutes. In his haste to attend to Leah medically I think he made an ‘error of judgment’ as regards how the initial diagnosis was delivered. Hopefully no other family will receive their diagnosis in this way.

      Like

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