Conversations with a caregiver

With 30 years’ experience working for the NHS, Nusrat became caregiver to her cousin who, having just given birth to her fourth child, was diagnosed with Stage IV breast cancer. In the interview for Moments That Count, Nusrat notes how conversations with healthcare professional services up until the point of diagnosis had been about early breast cancer and highlights the importance of increased awareness around breast cancer patient experience on later stages.

Read Nusrat’s interview below for a first-hand account of her experiences being a caregiver to her cousin and discover the moments that count they had together.

Being diagnosed with breast cancer is always incredibly challenging – being diagnosed during a national lockdown is even harder. PatientXx, a Twitter pseudonym that Nusrat uses when telling her cousin’s story, was diagnosed right at the beginning of the COVID-19 pandemic in the UK. As a result, her experience often involved attending appointments alone, or with Nusrat by her side when allowed. “I think her first consultation that I have attended was in January, just before lockdown happened. After that she wasn’t allowed family and friends to come and visit, so that was really hard for her to have to go through something so serious alone.” – says Nusrat.

“Getting the information about cancer in your language can be really difficult”, says Nusrat, “especially for people from the British Asian community.” While most people think the community consists mostly of Indian, Pakistani and Bengali people, actually there are more than 40 countries in Asia, with India alone having 300 dialects. As a potential solution Nusrat suggests that organisations avoid putting information in PDF format due to difficulty using Google Translate, ensuring broader access to a diverse public and allowing them to make informed decisions about their healthcare. It is also important for healthcare organisations to provide resources that are specifically tailored to diverse communities and educate healthcare professionals to help them provide the most appropriate support to everyone facing breast cancer, while taking into account cultural sensitivities and differences. “I think that doctors engage with ethnic minorities in a nervous way and not very openly.” – shared Nusrat – “You can sense it in the patronising tone in which they’re speaking, and you almost want to put a big sign up and shout - I’m human, just like you! Just treat me like a normal adult! Once they realise that you’re just like them, the barriers are broken down.”

One of the first things Nusrat did, when she stepped in as a caregiver for her cousin was setting up a WhatsApp group to make sure all the family members are aware and there is no place for damaging misinformation. “Being the kind of person I am, I want to know absolutely everything about my health, when given a choice. I’m aware that not everybody is like that, but I think if you provide the information then it’s up to them whether they want to take it on board or not. I would always share exactly what happened in the call with doctor, even record it with doctor’s permission. I’d also share links to Breast Cancer Now and explain exactly what it means. Every time anything happened, I would share it within that group, and it was hard because the family sometimes would not believe me.”

There are many advocates from the South Asian community, so Nusrat highlights the importance of representation and increased knowledge among this patient population. There are still a lot of misconceptions that exist in the South Asian community around breast cancer that are shaped by cultural beliefs, lack of awareness, and stigmatisation. In her own experience as a caregiver, Nusrat had to challenge the way her family talks about breast cancer, navigating the conversations on this difficult topic.

“There were well-meaning family members who kept telling her, ‘don’t believe Nusrat. She’s got it all wrong. You’ll be fine. You’ll be cured.’ And I kept saying ‘no, look, the documentation says this. It’s incurable. It’s spread. It’s just about managing it now’. So I felt like there was an internal battle with the family as much as anyone else.” – remembers Nusrat, when raising concerns around creating false hope, developing a fatalistic mindset and emphasising spiritual practices at expense of medical treatment. 
“I have had to sit her children down and tell them that their mum wasn’t going to survive, even though her family had a very different mindset and thought kids are better off not knowing the bad news.” Nusrat insisted on having this conversation, “I could not imagine them just waking up one day and finding out that mum is gone – they would never be able to recover from that!” says Nusrat, while calling this conversation one of the most difficult things she’s ever had to do in her life. To prepare for this conversation she would use resources available at Maggie’s and Macmillan’s patient group platforms.

It's not the only time Nusrat would be the one relaying bad news, which put additional emotional strain on her as a caregiver. “I would be the one relaying bad news. I’d do it is a very robotic way, because I wanted to demonstrate to the oncologist that I was professionally relaying that information without leaving anything out. But also, it was a self-defense mechanism. It was really hard and sometimes I would find myself literally gasping for air”. - says Nusrat. She remembers complete silence during the journeys back home, where she would often burst into tears in her daughter’s arms. 

“I’d often be tough for her. I remember trying to sort through her medication regime, and she kept going through the revolving door at the Christie’s, because she wasn’t taking the medication right. At one point district nurse turned up and asked me, ‘Are YOU ok?’ And I burst into tears. Nobody’s asked me that before!” – remembers Nusrat. Even though she herself did not use suggested mental health support platforms, she believes that compassion and support are incredibly important for caregivers, who cover so many responsibilities inside and outside of the clinic.

End-of-life treatment is a topic that is stigmatised and really difficult both from an emotional and practical perspective, and caregivers often have a role to play. "At the end the NHS kept asking about the plan for when PatientXx is no longer with us. So, another tough, but necessary task we had to undertake was recording her narrating her will and expressing her dying wish. We needed to ensure that we respected her wishes and preserved all the benefits for her children." – says Nusrat. The community was very supportive, and Nusrat highlights the engagement of the local mosque that helped organise the funeral.

Today working in oncology Nusrat often struggles with “what if” questions, so common for many caregivers, whose loved ones were taken by cancer “With all new drugs coming I keep questioning myself, could she have access to that through clinical trials? Could it have helped her? I have no idea, but that upsets me.” – says Nusrat. 

To deal with the loss and get some peace of mind Nusrat spends time in her garden that her daughter is helping her build. Nusrat calls it her moment that counts. “My daughter very kindly has been helping me to build my garden and pergola to hide from the heat. You just sit in peace in the fresh air without feeling overwhelmed. That is my favourite gift of all time that my daughter has given me.”

Despite all the challenges patientXx and Nusrat were experiencing every day, they managed to have their small joyful rituals that brought them closer and became moments that count for Nusrat even after her cousin was gone. “Coming back from the consultations, I'd always take her to the shops and encourage her to treat herself and take whatever she wanted. She’d refuse at first and then she'll come out with loads of bags full of everything tasty and sweet. I think she was quite a sweet tooth, and what she’d always buy was pears. There is this kind which is very common in Pakistan that she loved and that really helped her with nausea.”- Nusrat still goes to that shop now, and when she does, she always remembers her cousin.

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UK | June 2024 | 375461