Deaf woman felt ‘ignored’ after terminal cancer diagnosis

A deaf woman from our region has said communication barriers left her feeling ‘ignored’ and ‘isolated’ following a terminal cancer diagnosis.

Heidi Wells, from Huntingdon, has spoken out about the issues she faced after being diagnosed with lung cancer in 2018.

“The communication barriers were awful,” she said, “I felt ignored.”

Heidi had chemotherapy, radiotherapy and surgery to remove the tumour and a large part of her lung, followed by immunotherapy.

“I was in hospital recovering from my operation for four months and during that time there were no interpreters.”

Like many deaf people within the UK, English is a second language for Heidi, her first being British Sign Language (BSL). Sadly, her family does not live close by so they could not help with translation.

“I generally had no idea what was going on - there was no information given to me.”

“I had my ipad so I could Facetime my family and friends,” she explained, “but it was very isolating.”

Unfortunately for Heidi, the cancer spread to her adrenal gland and remaining lung, even after surgery and chemotherapy.

As a result, the 52-year-old is now receiving palliative care.

Heidi said that the only positive thing to come out of her experience was discovering the Macmillan Deaf Cancer Support Project, an initiative launched by Macmillan and Self Help UK to improve support for deaf people living with cancer.

Before discovering the two-year pilot scheme, Heidi said she “felt like the only deaf person with cancer.”

“I had to keep everything to myself,” she recalled: “I had to shut myself down as it was the only way I could get through it.”

Accessing the scheme changed that outlook considerably.

“Now, to have someone to talk to is amazing,” Heidi said.

One of the key elements of the scheme is to offer one-on-one emotional and practical support remotely in BSL through trained deaf volunteers, something Heidi desperately needed.

“It’s good to be able to offload - my volunteer is so supportive.”

“If I’m feeling down, I know I can text her and she’ll call straight away on a video call.”

“I don’t think I would be around if she hadn’t been there for me.”

In addition to the one-on-one support through her deaf volunteer, Heidi also joined one of the scheme’s virtual deaf peer support groups.

“It helps to know I’m not the only one and I’m not alone,” she said.

“Everyone in the group has experienced the same barriers and they have been so supportive.”

“We share information with each other, we tease each other and have a laugh, and when you’re not feeling so well, you know you can get support.”

Despite her prognosis, Heidi remains positive.

“Some days I struggle,” she admitted, “but I try to stay positive.”

“I still ride my bike, go horse riding and walk my dogs - I never stop!”

“My neighbours say ‘what are you doing, you’ve only got one lung!’ but you’ve got to keep going because life is short.”To find out more about the Macmillan Deaf Cancer Support Project and access support visit www.selfhelp.org.uk/deafcancersupport.