There is a bell on most cancer wards in the UK, accompanied by a poem: “ring this bell three times well its toll to clearly say, my treatment’s done this course is run, and I am on my way”. This started as a custom in the USA and was adopted in the UK. The ringing of the bell is a bit of a ceremony with staff etc gathered round and lots of clapping. The thought behind it is lovely, but it just wasn’t for us. We decided against ringing the bell for a number of reasons. We read some research that says that marking the end of treatment with a ritual like ringing the bell can create a ‘lightbulb/snapshot’ moment which creates negative memories in later life, but children who didn’t ring the bell didn’t seem to hold on to memories of their treatment. Certainly for Romy, who hates being the centre of attention when surrounded by strangers, this would be painfully embarrassing for her. I also felt like hearing the bell being rung can be very hard for parents of children much earlier on in their treatment journey, or those facing much more difficult paths. Hearing the bell being rung in the corridor when you are going through the darkest times is so difficult and, while you feel happy for the families celebrating, it really brings it home that your child may not get the chance to ring that bell. For these reasons we decided to skip it altogether.
Despite skipping the ringing of the bell ceremony, we remain very grateful to the NHS staff who helped care for Romy through a long and arduous 18 months. We met some special nurses who went above and beyond. We were also so grateful to have a consultant who always found the time to answer our many questions, despite being busy. In our experience many other areas of the hospital (other wards, the pharmacy, A&E) just do not match the professionalism or have the mutual respect for parents as partners at every decision point that our Oncology ward had.
Helen & Tom