I didn’t choose bravery 

I belong to two private online forums, one for people diagnosed with cancer in their 20s, 30s and 40s, Shine Cancer Support, the other for people aged under 50 who are grieving the death of their partner, WAY Widowed and Young.

I’m yet to find one online forum combining both criteria, young cancer patient and young widow; I’m sure I’m not the only one going through the same circumstances but perhaps it would be too sad to find myself in an even smaller minority. [UPDATE September 2017]  I have since discovered that at least seven other young widows are going or have undergone cancer treatment, either whilst caring for their dying husband or since windowing…an exclusive club indeed.

In these forums we share our experiences in a safe, supportive environment with other people who are going through similar circumstances in their lives, without prejudices or fear of recrimination. It is remarkable how similar some of the discussions are in both forums. One that comes up often, and which seems to leave a lot of us riling, is people in general telling us how brave we are for carrying on with our lives, for still being able to function and I guess for not “having lost the plot”.

I want to dispel a myth, I didn’t choose bravery. The circumstances of my life just happened, there was no plan, heck who would plan such a life? Anyway, there was a time when I did have a neat little plan, an expectation which did not turn out as I’d thought.

But I digress, back to bravery.

No I am not brave.

Brave are the refugees fleeing war-torn countries, risking life and limb in the hope they will carve out a better life for their families in a far away land. Brave are the doctors and nurses who risk their health to care for sick people wherever their vocation takes them. Brave are those who speak out against injustice whichever form it takes.

I am sure there are many more worthy examples of bravery that you can think of.

No, I am not brave.

I continue with life as best I can. It is not perfect, and if ever you see me and have the compulsion to say “you are doing so well!”, please know it is just a facade, an illusion, the mask that I must wear everyday to make sure I am not left behind, because life still goes on. This is the performance I have become accustomed to so that I can make it through each day. As the saying goes, fake it ’till you make it.

This does not mean I never take the mask off or that I don’t stop performing, oh I do, everyday! And when I do, those around me get to see how brave really I am not. But I have had to plough through because there is no choice, because the world does not stop, because not carrying on would be cowardice, and that’s definitely a label I am not willing to carry.

#WearSomethingYellow day

Friday 17th June is “wear something yellow day” to raise awareness of the great work hospices do in looking after patients with life limiting and terminal illnesses as well as their families.
I will be doing my bit by wearing something yellow; watch this space!

logo
Forest Holme Hospice

 

So on Friday 17th:

  1. wear something yellow
  2. take a selfie, post it on social media with the hashtag #WearSomethingYellow
  3. donate £1 to Forest Holme by visiting my Justgiving page, that’s it easy peassy, squeeze the lemon!

Aside

Monday 9 May marked the start of Dying Matters Awareness Week during which time we are encouraged to talk about death and dying, not in a morbid but in a constructive way.

The hashtag #BigConversation has been used to instigate discussions around our last wishes as we face death, specially about how we want to die and what we want to happen when we are dying. This includes, amongst other things, whether we want to die at home, in hospital or in a hospice, what kind of treatment we would allow or refuse as we approach death, and how we want to be remembered.

Whilst all of these issues might sound scary, morbid and downright sordid to some, my experience of seeing my beloved husband dying has taught me that these conversations are better had when we are not in pain or suffering, when we are able to clearly express our preferences and when we are not vulnerable. It also allows time for reasoning, explanations and acceptance, all of which are difficult to attain when we’re reaching our last days and hours of life.

After my husband died I found a folder with neat writing on it which read “FUNERAL” and I thought “great, he has left it all organised, nothing to worry about!”  Little did I know it was just a smoke screen; on opening the said folder I found:

  1. A newspaper cutting of an article decrying the extortionate costs of funerals
  2. The name of two hymns written on the back of an envelope, and
  3. An email, dated exactly one year before his death, confirming that our priest of 12 years would be happy to conduct “the funeral”

And that was it!

I knew, from his will, he wished his body to be cremated. Other than that nothing, zilch, niente, nada.

You see, my husband did not speak of his imminent death, even though we had known for more than a year that the cancer no longer responded to treatment. He he did not allow the conversation to take place. It was too much for him. I can only speculate his reasons, he never said why.

This silence meant for us a prolonged suffering, a wanting to speak up but never feeling that we were allowed to. Not having those conversations means that at times I feel rudderless specially when trying to guide our children through life. I often attempted to ask him how he would have wanted me to, for example, advise our children on relationships, money, buying their first car, etc. only for the subject to swiftly switch to football or rugby or whatever other sporting event was his latest preoccupation.

For our children the silence now means a lot of questions which will remain unanswered, this makes their and my grieving so much more difficult. I am always mindful of honouring his memory and constantly looking for opportunities to put together a legacy to give to our children to hold on to. I am only hoping that it is just what he would have wanted.

So if there’s one thing I wish for you readers, is that you make time to talk with your nearest and dearest about dying matters, if not to ensure that your wishes are carried out and respected, then to save your loved ones the anguish of second-guessing what your wishes are.

Continue reading

Dying matters

The melon baller 

Licensed by CC 2.0 Copyright Alan Levine on Flickr

I recently had to explain to a family member how this grief thing feels.

I’m a visual person, I tend to explain myself with images. So I said, this grief thing feels as if someone has found a giant melon baller in the back of the kitchen drawer and have set about making balls out my abdomen and, once they were satisfied they had taken enough flesh, I was left with a gaping hole where once there was a belly.

So now I walk around with my abdominal muscles permanently clenched hoping the gaping hole begins to heal. But some days if one looks carefully the hole is still there, containing a vortex within a black hole which sucks away all the light and energy from my being, leaving me breathless.

When these days come, which right now are nearly a daily occurrence, I pull up the draw bridge and retreat to the safety of my bedroom; messages are not replied to, telephone calls are rejected, no matter how good a friend or close family member they happen to come from. These are dark days.

Other days if I’m brave enough to peer through the hole I can see all my vulnerabilities exposed for the world to see, which makes me feel as if I’m walking around stark naked. A very uncomfortable feeling I hope you’ll agree unless of course you’re a naturist in which case I take my hat off to you for being confident and comfortable in your own skin.

However that’s not the worst part of grieving. No, no, no; the worst part is when, as I begin to get used to the hole, some insensitive person tells me how their wife’s second cousin’s neighbour’s uncle had cancer but luckily recovered and is leading a normal life. Whilst it is a positive thing to hear that for some people cancer hasn’t been a death sentence, I fail to see how that’s meant to comfort me. So I will describe how this feels, it is as if having noticed my gaping hole they decide to take the ice pick in the photograph and use it to dig a little deeper because the hole wasn’t big enough.

So the moral of the story is: next time someone you know or happen to meet tells you how they’ve lost a loved one to cancer don’t tell them my story, just listen to theirs, that’s it just listen.