Can’t get used to losing you…..

30 December 2012. This was my husband’s birthday.  After all these years I still have this sense of disbelief at the way Mark died.

One cat scan, one simple, fast and easily accessible cat scan would have saved Mark’s life. And not only his life,  it would have stopped Mark’s unrelenting months and months of continuous, excruciating, inhumane suffering. That’s a hard pill to swallow.

The GP made the deliberate choice not to order a cat scan although Mark presented with 7 days of sudden, uncharacteristic, continuous, severe and debilitating headaches. Instead she made a definitive diagnosis of tension headaches, although conceding that Mark was not stressed. She explained to Mark that the term ‘tension headache’ was a misnomer and occurs without stress. This diagnosis was made despite the fact that the definition of tension headaches includes only mild to medium headaches. Mark’s severe headaches were certainly outside that scale. Mark had so-called red flag symptoms, such as the severity of his headaches and the fact that they woke him up at night from his sleep. The judge thought that the GP had made an outstanding consultation, not just an acceptable one, no, a commendable examination. He didn’t comment on the fact that tension headaches were a misdiagnosis, seeing that it fell outside the parameters of tension headaches and that in medical opinion, a diagnosis of tension headaches can only be made via excluding more sinister symptoms – namely by use of a cat scan. That is to say you cannot really diagnose tension headaches as such, as there is no test for it; you can only exclude all other possibilities through the use of diagnostic tools: such as a cat scan.

This reminds me of a German saying: Surgery a success – patient dead….

I know that the vast majority of GPs would have ordered a cat scan… But that was not what happened to Mark. He walked straight into the consulting room of the one GP who didn’t. Our movie took a completely different turn. Eight months of the most intense emotional roller coaster imaginable. Actually, the imagination does not stretch that far. You know when they say life is stranger than fiction. Yes, that’s what happened to us. If anyone tried to write a novel with that much suffering, and that many turns for the worst against the odds, then no-one would read it, it would be unbelievable. But that’s exactly what it is: unbelievable, but true.

Now I find myself in the situation that should never have happened – but did happen.

How do you deal with the knowing that one cat scan, one single cat scan, would have averted death and unfathomable suffering? Ironically Mark had many cat scans, MRI’s and not to mention countless brain surgeries. And the expert witness at the medical trial gave his expert (paid) opinion that one cat scan would have been a taxpayers’ waste of money, that it would have been unconscionable for the GP to waste tax dollars. He made that statement in the face of all that followed.  I’d imagine that his income for that expert opinion would have been higher than the cost of a cat scan. How about that. But the taxpayer didn’t have to pay for that, I did. I payed for this statement that said Australia could not afford to save my husband.

I’m digressing. The point that I’m making here is this: I found myself in this situation where I have to accept that it did happen – or slowly choke on my own bitterness at the injustice of it all. Right now I do have a choice: to accept or to resist.

I say this with the passing of eight years behind me. Engulfed as I was in the pain of having witnessed such extreme suffering, it did not feel like a choice in the beginning, the first few years. It was quite out of reach for me to accept this decision not to order a cat scan. How do you accept the unacceptable??

I do have a choice now. And I choose to accept what happened.

Perhaps you might finish off the old year with accepting what has come your way. . .

I will say that this did not come easy; it was at times a seemingly insurmountable mountain. For a long time I did not think that I would make it to the top. Because to accept feels like condoning ‘the wrong’. Condoning injustice. Yet it is not. It just feels that way.

I do personally believe that the GP should have ordered a cat scan. I also accept that this is what happened.

The movie had all sorts of incredible turns in it, such as me becoming a palliative care spokesperson and sharing my story in front of an international palliative care conference with 1300 delegates from 28 countries. I believe, no I know, that by sharing my story I have made a difference to others. Even if I helped just one other person not to suffer the way Mark did because of a lack of adequate pain management, then it has been worth it to keep wading through the depth of my pain by retelling what happened. And I went on to do a Masters, to share my story and to delve deeply into recovery from bereavement. What an amazing journey that has been. It has given me a deep level of contentment.

I’d like to finish off today by remembering Mark, his special smile, the way he threw back his head when he laughed, underlined by little snorts and sparkling green eyes, his ever present sense of humour. Our love has not died; it has survived and lives on. I am grateful for 20 wonderful years I spent with Mark. Here are The Beats for you, with memories of travelling from Melbourne to Queensland in our old HR:




Don’t leave it till later – do it now.

Katrin Den Elzen

Recovery, Renewal & Reflection

Making sense of change