Cancer diagnosis hit Hatfield lecturer like a ‘tsunami’ after her twin brother died six months earlier of same disease
PUBLISHED: 14:08 30 October 2020 | UPDATED: 14:08 30 October 2020
A cancer diagnosis hit a lecturer at the University of Hertfordshire, out of the blue and like a “tsunami” - not least because her twin brother had died just six months previously from advanced stomach cancer.
The Hatfield academic, who was given a clean bill of health last year, is being backed by Macmillan Cancer Support to redress gaps in local cancer care and support for underserved communities.
When Dr Daksha Trivedi was diagnosed with oesophageal cancer in December 2017, she felt there were few people she could discuss it with besides her husband, Pradip, who was overwhelmed by the stress of being her sole carer.
The Meppershall villager was reluctant to burden her 87-year old mother and felt she couldn’t appeal to her extended family for support, given in what Dr Trivedi says is a view within some South Asian communities that cancer spells certain death.
But since receiving the all-clear in April 2019, the senior research fellow has been determined to ensure that people affected by cancer have a more positive experience than she did.
With funding, advice and resources from Macmillan Cancer Support, Daksha established the Mid-Bedfordshire Cancer Support Group, which has continued to provide a lifeline for isolated members during the pandemic.
She said: “My cancer was very aggressive, and I had to endure months of uncertainty and fear as I had scans and tests to determine the treatment I would need. I was given some printed information when I was diagnosed, but it’s very hard to take it all in when you’ve been given news like that.
“A support group would have been a godsend at this point, but I couldn’t find one in my local area. With the Mid-Bedfordshire group, I’ve been able to bring people together to talk about their worries and concerns with others who really understand, and that’s continued during the pandemic, albeit virtually.”
“Just knowing they have somewhere to turn if they want to discuss anything, whether it’s the side effects of treatment, the deterioration of a relationship or the difficulties of planning for the future, can really help.
“And it’s not just for people living with cancer, it’s for their carers as well. Caring for someone with a serious illness can be utterly bewildering and terrifying in its own way, but a carer’s needs are often overlooked. People like my husband, who became physically ill from the stress of caring for me, need to be looked after as well.”
Once Daksha started speaking openly about her experiences, which she has also catalogued in a new book ‘Now Living the Dream: a tale of surviving cancer’, further opportunities through Healthwatch and Macmillan forums emerged.
She said: “Acknowledging cancer doesn’t mean your life is over. If anything, it means you can start to come to terms with how life has changed and access the support you need to move forward.
“The word ‘cancer’ has a profound impact, particularly in some South Asian families where the worst is immediately assumed. The automatic response is either to assume that you’re going to die, or go into complete denial, in part because people simply don’t know that with the right support, it’s possible to live well with cancer.
“I’m currently working with an Indian association in Luton to pilot an Indian women’s cancer support group, which will empower its members to understand the care they are entitled to and recognise what their practical and emotional needs are, beyond just their physical health. Only once you understand your own situation, can you help your family to understand it too.
“By talking about the realities of living with cancer, and how fortunate I was to have my cancer detected at an early, curable stage, I also hope to increase uptake of cancer screenings within the community. Too often you hear that routine checks for cancer are avoided, which is devastating when you consider what a difference it can make when the disease is caught early.”
Rebecca Loan, Macmillan engagement lead in Bedfordshire said: “Just as geography shouldn’t be a barrier to accessing cancer support, neither should your background, or the community you come from. Macmillan is always looking to understand how it can reduce inequalities and reach seldom-heard groups including Black, Minority Ethnic and rural communities, and backing grassroots support groups is one way we can achieve this.”
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