Saturday 15 September 2018

Weekly Discussion Summary ~ Loss of a Friend or Loved One to Cancer 2

“Our grief rises with every single one of us that we lose.”

In our weekly discussion we explored our feelings about the loss of loved ones, friends or someone else we know, to breast cancer, including women in living in the public eye.

The heart-breaking news of presenter Rachael Bland’s death from triple negative secondary breast cancer last week resulted in a moving and public outpouring of grief. But did the untimely death of this vibrant and courageous woman have a greater and more intense meaning for those of us living with primary and secondary breast cancer?

We decided it did.

To grieve for the loss of someone who has died from the same disease you are suffering from, we discovered, is a challenging and complex process.

We know we are the lucky ones. We are still here. And yet, and yet…… the untimely death of someone who appeared so well reminds us of our own vulnerability; it reminds us that we may not be as safe as we imagine, it reminds us how little control we have, and we are suddenly hit by the fear of recurrence or progression of disease which we have tried so hard to block out.

This is a topic that will always be relevant because our sense of loss is renewed with the each of the all-too frequent losses we endure. Our reaction is vivid and real and hits us in different ways and with different intensities. Unlike other events or experiences where frequency and time can reduce the intensity of our reaction, our response to the loss of another woman with breast cancer remains unchanged, or can be even more intense with each new loss we experience.

Losing someone we have known personally too breast cancer - or another type of cancer - can be very powerful. Many of us shared our experiences of the loss of mothers, sisters and friends to breast cancer. But some of us had lost fathers, brothers or other relatives to cancer and sometimes partners. Although our grief can feel more validated, our experience of mourning is more complex. For us, there is not only the grief of losing someone most beloved but the uniquely devastating experience of a grief mixed with fear and guilt – fear for ourselves and guilt for our survival. Because our response isn’t entirely selfless, we feel even more guilt and perhaps even a sense of shame. Hearing about the death of someone in the public eye re-opens forces us to re-visit our anguish, re-opening the scars which we thought were healing.

We experience a myriad of emotions in response to bereavement; intense anger, followed by numbness, and perhaps a sense of helplessness; a helplessness that we could not help and that bastard is coming to get us too. Distraction can often work for a time, we throw ourselves into work, into having a “good time.” We can though then find that we are hit by intrusive thoughts about what we have been trying to avoid (or get over from) unconsciously.

All around us are people continuing life as usual and their normal routines. How can we talk about our feelings? How much of our pain belongs to someone else? We cannot find the words to describe how we feel. We remain silent. Our grief is invisible.

Many of us described a powerful survivor's guilt which takes the form of questions: why am I still here and she isn’t? Questions, questions, questions, but no answers.

It can hurt so much to realise that we can’t bring the person we loved back, we find ourselves wondering why on earth THEY had to die. It seems such a needless waste. We feel a sense of relief and guilt at our own survival. We try to make sense of it. We wonder why it was we have managed to survive - so far. We realise we cannot fathom an answer. For us too there is the difficult knowledge that part of our grief is an anticipatory loss for our future selves.

To counter our sense of helplessness, we inevitably ask ourselves whether there is anything that we can do effectively that has shown to reduce the chances. If the risks of getting injured while cycling without a helmet are reduced by wearing one, then what can we do to reduce the risks of loss when we’ve had breast cancer? Naz told us that this is a sensitive and paradoxical issue that is less given attention to in the literature, and with no straight answer. If we are not careful we can go around in circles thinking what could have we done, or what we still might be able to do.

Our discussion highlighted that whilst there are common threads of grieving amongst us, the experience is very individual, and there is no wrong or right way to grieve. Naz told us that research shows that if we don’t allow ourselves to grieve and embrace the sadness then we can be more at risk of psychological and physical distress in the long run. Allowing the body and the brain to digest our shock is incredibly important Naz told us, even though it may take a long time to regain our equilibrium, even though the process is painful.

It is said that time can heal. But some of us felt that this was problematic. We know that symptoms of post-traumatic stress sometimes don’t show immediately, but after many years and is therefore highly dependent on how we’ve processed the situation. The experience of loss of someone to breast cancer is so intense; we were not sure that ‘healing’ is the right word when our grief rises with every single one of us that we lose.

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