Grief creeps up on you it takes you unawares, for a brief second it takes away your breath.

There are moments where you realise that your grief will never leave you have that overwhelming nauseating feeling of deep loss. It’s like that, it can be evoked by a phrase, an object, music, a smell, a colour, a taste, anything and everything….

Last week I read an article about the role of the bell in cancer treatment http://bit.ly/2SgktRX. It discussed whether it was a good thing to ring the bell at end of cancer treatment as a celebration and contrasted this to people who just wanted to walk away from the treatment unheralded in a discreet silence.  People who were so relieved to have reached the to the end of treatment, people who wanted to get back to their lives, but knowing that their lives have been forever changed.

The sound of a bell can evoke many feelings and memories. I remember clearly the sound of the bell at end of the school day, a welcome sound signifying that the school day was over a sense of relief and freedom. The sound of church bells which could signify a wedding if they were ringing out in celebration or the ominous sound of a single bell “for whom the bell tolls”. There is also the thought of the fire alarm the sound of a bell that rings for danger, alarm….. so many meanings.

I could see both sides, the pros and cons of both options and in my mind I concluded that it was a matter of choice, that if the ringing of the bell gave people a goal, an aim, something to celebrate that their treatment was completed, then how could it fail to be good thing. Equally if people wanted to walk away from treatment without ringing the bell that was ok too, if they weren’t put under pressure to ring the bell, because “that’s what you do at the end of treatment”

Seth never had the opportunity to get palliative chemo, he was too ill, pancreatic cancer progressed so quickly that even the chance to extend his life by just a few weeks was denied us. Seth and I knew he wouldn’t get to ring the bell, he didn’t get to hear the bell, to experience the despair of hearing someone else’s celebration.

A few days after reading the article I was contacted by a lady called Joan who I spoke to a little while ago. Joan had been in contact to share the story of her journey through bowel cancer with her beloved husband Tony through to his death in a hospice.

Joan described how this article transported her back to sitting next to Tony in the chemotherapy department and hearing a bell ringing loudly with lots of clapping, shouting and cheering. They were both perplexed so asked what the commotion was all about, when it was explained; they felt distressed she said she felt like “it was rubbing salt in our wounds” as the day her husband got his last chemo treatment would represent being a significant step closer to the end of his life.

At the time she relayed to the nurses that she felt it was in appropriate, but she said “our normally excellent” nurses couldn’t understand what the issue was. Her feedback was ignored and feeling worthless and desperate; the journey for Tony and Joan continued.  They were however, still bemused as to “how our very empathetic cancer unit could ever have been insensitive enough to allow the bell to be installed in the first place”

Things that would normally seem small and trivial to you can loom large when you are accompanying someone on their end of life journey, because nothing is normal when the person you love with all your heart is dying….. there is no normal. I know that through Seth’s and my experience that        the lens on your life changes focus and the little things that mean a lot are really the big meaningful things. No more so then when your world shrinks away, and your mortality becomes a close bed partner.                                              

Joan is going to contact the hospital to talk to the about her experiences of the bell and the feeling of being ignored by the nurses when she raised the initial concern. I wonder if anything will change, I question if it should change, should the bell stay or go? I really don’t know I can see all sides, but I am clear there’s a third side to consider it’s not just about if you ring the bell or chose not to, it’s also about the people sitting in the chemotherapy centre who don’t have a choice about ringing the bell. The people who know their last visit to the chemotherapy department moves them one step closer to inevitability of death, that comes from an incurable diagnosis.

Joan finished her message to me with this phrase “the article has sent me back into a downward turn in my grief and so attempting to convince others that the bell ringing ceremony is inappropriate would help me face the bad memories which have now resurfaced”

As I said grief never goes away but a phrase, an object, music, a smell, a colour, a taste, anything and everything…. can bring back that visceral sense of loss that lies so shallowly just under the surface.

Joan and Tony are aliases but all facts in the story are based on the real experiences.

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