‘my sister died from cancer in the covid-19 pandemic and we couldn’t sing at her funeral’
WHEN Carys Evans was diagnosed with cancer, Wales had already been in lockdown for months.
Her entire experience, from diagnosis to her untimely death in 2021, happened in the shadow of a pandemic.
Now, her sister has spoken about the impact this had on their family – from Carys visiting the hospital alone to her family members being unable to sing at her funeral.
Gwenno Hodson’s experiences as a bereaved sister will feature in the opening of the Welsh module of the UK-wide Covid Inquiry, which begins in Cardiff on Tuesday.
“She started feeling unwell in late May, early June of 2020,” Gwenno told the Echo.
“She just put it down to things like the kids being at home, having to homeschool and work from home. She was quite a fit person, and did a lot of running and ate healthily.”
Carys didn’t want to put more pressure on the NHS and initially didn’t book an appointment for her symptoms.
When she eventually saw her GP, she had to go alone – and after further tests, she was given a diagnosis of stage four colon cancer.
“It was devastating,” said Gwenno, “absolutely devastating. We couldn’t believe it. She was 41. She asked me if I could go and tell my mum because I live close to her; that was really, really difficult to do.
“Then we had to deal with what we had to deal with, navigate it all, which was horrendous.
“Something like [what] happened to my sister happens all the time and it’s really traumatic and stressful to deal with, without all of those restrictions that were placed upon us during the pandemic.”
Everything was “heightened” by Covid rules as the family, scattered across Wales and the rest of the UK, tried to support Carys.
Gwenno added: “It made every decision very difficult. You secondguessed yourself, you had to question everything: ‘If I do this, does this then happen? Am I going to get caught driving somewhere when I shouldn’t be?’
“You could travel for compassionate reasons but what were ‘compassionate reasons’?
“It was such a confusing time for everybody [even] without having somebody who was really quite poorly – and we didn’t know how
long she had left. It really did exacerbate everything.”
Carys’ further hospital visits would be either alone or, as time went on, with a single chaperone.
“It was isolating and incredibly difficult for us as a family,” said Gwenno.
“We had somebody who needed care, needed us, [but] we couldn’t travel or be with them to give the care and be the backbone.
“Having been through people having cancer in the family before, I knew how important it was to have that personal touch... the guilt you have for maybe not doing enough lives with you and it will live with all of us in the family forever.”
Carys died on July 7, 2021.
At her funeral, there was no singing – with the family interpreting official guidance as restricting this.
A Welsh Government document published earlier that year said: “If singing or the playing of music is to happen it should be accompanied by clear messages that those not in an organised group of musicians or singers should not join in.”
This was another blow for her relatives.
Gwenno said: “We were restricted on the numbers indoors, with what we could do in the service… for me as a Welsh speaker and us as a family, singing is a thing that we do.
“Carys was a member of various choirs all through her life and we couldn’t even sing hymns in the funeral, to pay tribute to that side of her life.”
Gwenno says it is “incredibly important” to share the stories of people impacted by Covid in different ways – not just by the disease itself but the way restrictions affected people’s lives and compounded alreadydifficult experiences like living with terminal cancer.
“I think that’s what’s not been understood, maybe, by everybody – that it’s not just about people who lost their lives or became ill due to Covid itself but what happened to every single one of us.
“Every one of us had an experience, went through trauma, had things happen to us, as part of it, not just because we did or didn’t catch Covid.”
This is why Gwenno chose to share her experiences with the UK Covid Inquiry, which she says has been cathartic and positive, despite the circumstances.
“Those people who haven’t got a voice anymore need to have their story heard and we are the ones to put it down on record,” she added.
“Carys was full of life. She was a dynamo and a typical little sister who could be annoying at times, and had very clear opinions and thoughts about stuff, but was a brilliant, brilliant sister. I miss her very much.”
Gwenno is one of many to have contributed to the inquiry, and her story will be used in a video to launch the Welsh module.
She hopes the inquiry will look at why decisions were made by those in power – but added: “For families, and for me personally, I think it’s just having that voice, having experiences down on record and having something there, tangible and real, that people went through, to give them the idea of what was going on in reality.”