Caring for Barry - Jonathan’s story

For me, like many others, caring was not a life choice. It was the result of the circumstances in which I found myself.

Apart from the usual domestic nursing, I had little experience of caring full time and its significant impact. Until my partner Barry received his initial cancer diagnosis, my engagement with the medical profession had been minimal, restricted to the occasional visit to my GP and even rarer hospital visits. So the shock of our situation, both emotional and practical, was painful.

From my perspective as a carer, I found I was expected to run the gauntlet at various times of being ignored, tolerated and patronised, until my final incarnation of near sainthood.

At the time there seemed to be a universal expectation from the medical world that the would-be carer would somehow acquire by osmosis the nursing skills they were required to use over and above those provided by qualified health services. There was no training, not even guidance around what would be expected, at least until Barry’s palliative status was confirmed. Basic nursing advice, in my experience, was never to hand.

It wasn’t until Barry’s urgent admission to our local Hospice in December 2013 that I was treated with any sense of care and consideration. This was the first time that anyone had taken me aside, sat me down, handed me a cup of tea and asked the all important question ‘and how are you?’

Our experience of cancer care was mixed. We encountered bullying and insensitivity as well as touching humanity. From the idiotic and tactless handling of informing my partner of his cancer – a photograph of the growth was shown to him by a nurse immediately following his colonoscopy - to a consultant barking at him in 2010 when the cancer returned that he should have been more responsible, to a consultant surgeon’s unexpected and unwarranted advice that suing would be an unwise option, when no such action had been discussed or event considered.

When we were told that the cancer had spread to Barry’s lungs and he had only three months to live – he thankfully survived another four years- the way in which we were ushered out of the consulting room with such urgent haste and lack of regard for our wellbeing was breathtakingly crass.

In stark contrast, his oncologist was welcoming, practical and refreshingly bold. Her reassuring approach instilled in my partner the belief, whilst accepting the nebulous nature of the disease and the inevitable outcome, that he had a life to live.

Inevitably post-caring has not been easy.

A carer’s life is lived at one hundred miles an hour, day in and day out, then suddenly you hit a brick wall and you are left completely bewildered. Any support previously in place disappears overnight. Counselling helped to a certain extent, but essentially you are left to sort yourself out, blunder about and try to seek some meaning to the past and especially a future.

In ensuring that cancer care and services are wrapped around patients, don’t forget that carers need support too, even when the loved ones they have cared for are no longer in their lives. Perhaps even more so, as they struggle to come to terms with yet another ‘new normal’.