The Bell

The first time I heard the bell was as I lay in a hospital bed with Dylan in Room 9 not long after he came through the biggest fight of his life on Christmas Eve 2016 when his first round of IV chemo started working just in time for him to live to see Christmas Day. I don’t recall the exact day but it was after those who’d been deemed “well enough” were sent home for a few days over Christmas had started to trickle back in; it had been an eerily quiet “festive season”.

Unusually, the door to our room was open & suddenly all I could hear was cheering & clapping from further down the corridor. As I went to close the door I looked around the corner & caught sight of a large gathering of people & then a child rang the bell & the cheering got louder.

That’s how I learnt about the end of treatment bell.

I closed the door, climbed back into bed next to Dylan & choked back nauseous tears.

In the 3 years & 4 months we spent in & out of hospital I’d get to hear that bell a fair bit…which is a good thing right?

In that same time I was also party to some of the most painful conversations with parents who’d been told that there was nothing more that could be done for their child (the parent’s kitchen was a sobering place on an already sobering ward, if you ask how a child is doing on an oncology ward you need to be prepared to hear the worst), in short, their child was going to die; treatment hadn’t worked for them & often those absences seemed louder than the sound of any bell.

I understand the symbolism to a degree & have absolutely no issue with those who choose to celebrate their end of treatment by ringing a bell that they are told means they are “ready to get back to normal life”…(https://www.childrenwithcancer.org.uk/end-of-treatment-bell/) & I agree that reaching the end of treatment is a “huge milestone for a child with cancer” but I became acutely aware, (not just through Dylan’s plight but also through the tragic plight of others around us) that not every child or family will be granted the chance to survive in order to ring that bell & there seems to be so much onus on it; it feels more like an opt out than an opt in situation especially given that the bell is permanently attached to the wall between daybeds & inpatients.

I just wished there had been some sort of warning or maybe that the bell was located elsewhere, or even that it was made mobile & perhaps wheeled to a location so that those who knew their fate wouldn’t have to endure the torturous emotions of feeling happy for the child that made it whilst simultaneously fearing or (worse still) knowing that their own child may or will never be part of that sort of celebration.

I’ve seen children ring the bell & then be readmitted weeks or months later because they’ve relapsed & it’s really messed with my head.

There were times when I’d have to wait to leave the ward whilst celebrations were ongoing as I couldn’t get through the crowds that thronged the corridor in celebration.

When Dylan had his last IV chemo someone asked him if he was going to ring the bell in front of everyone in the daybeds ward & I nearly lost my mind. We’d never discussed the bell with him, in my head it was meant to be a personal conversation that should happen privately & at a pace everyone is happy with.

Needless to say a couple of days later Dylan asked me if he was going to ring the bell & I knew I had to find a fair & honest answer. I never felt I’d be ready to have such a frank conversation with him but my hands were now tied.

I gently told him that of course he could ring it if he wanted to but he needed to understand that ringing the bell doesn’t necessarily mean that cancer has gone away forever. I carefully explained that some people ring the bell to mark the end of their treatment but sometimes some people’s cancer can come back (one of his beautiful classmates relapsed twice in the time that he was on active treatment). He doesn’t know that his grandmother had cancer & relapsed when he was a toddler & then again when he was midway through his treatment & that the reason that she sadly passed away was because she had cancer. He also doesn’t know that Ruari’s father passed away because he had cancer. I don’t know what he does know about cancer outside of his own experience & I’m not going to dig to find out, but I have no doubt that one day he’ll make certain associations & there is nothing I can do to stop that happening; all I can do is be ready to give him some balance.

He doesn’t know that our biggest fear is him relapsing or developing a secondary cancer for which he carries a risk due to some of the chemotherapies he was given.

He’s only 9 years old & whilst I haven’t been able to protect him from getting cancer for now all I can do is try to protect him from some of the gut wrenching brutality he naively doesn’t understand he’s experienced.

I was under no illusion that “end of treatment” would be such a mishmash of emotions, circumstance & uncertainty for everyone involved.

Perhaps because of our personal experience & much of what we’ve witnessed as an oncology family we’ve developed some kind of fear but then I know that our fear is real & not based on some sort of hypothesis. I don’t want to live in fear every day but it’s there lurking in the dark corners of my mind. I don’t want Dylan to live in fear every day either & I hope that in explaining some of the realities in an age-appropriate way he’ll grow to understand the tightrope that is cancer. Just the words “he’ll grow” are loaded for me.

After our conversation he decided he didn’t want to ring the bell; I’ve revisited the concept with him again since & the answer remains the same. Perhaps he’ll change his mind & if he does at least he has a modicum of peripheral understanding.

I learnt right at the start that arming him with honest unbiased information was always going to be hard; the parent-child relationship is ramped up to unimaginable levels when a cancer diagnosis is thrown into the mix.

It is & always will be his choice, I just wish we had the choice not to have to hear it when we live amongst those who either know or fear the worst.

We were & are still too occupied with waiting to see if he will carry on living. Post end of treatment I can’t say if or when that feeling abates…I can’t imagine it will.

I have heard adult cancer patients talk about “survivors guilt”, in the same vein there’s a lot of mixed-up feelings of guilt for parents whose children make it through treatment & survive because we know too many whose children don’t.

As I’ve said, I have absolutely no objection to those who choose to ring the end of treatment bell but I think it’s important to understand that it isn’t for everyone; it can raise deeply complex emotions for some.

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