'I want to show people in my community that it’s okay to talk about cancer'

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 diagnosis, which came out of the blue without any tell-tale signs, had hit them like a “tsunami” - not least because her twin brother had died just six months previously from advanced stomach cancer.

She was reluctant to burden her 87-year old mother, who herself suffers from fragile health, and felt she couldn’t appeal to her extended family for support, given a prevailing attitude within some South Asian communities that cancer spells certain death.

Without a support network and little idea of the additional help she’d need to cope with the practical and emotional impact of her cancer diagnosis, the ensuing months of major surgery, lifechanging side effects and gradual rehabilitation were fraught with stress and uncertainty.

But since receiving the all-clear in April 2019, Daksha, who works as a Senior Research Fellow at the University of Hertfordshire, has been determined to ensure that local 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 in Meppershall, 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 people to feel less alone.

“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 to make local cancer support more equitable, and more accessible, began to emerge.

Daksha’s mum Urmilla helps her to exercise during treatment and right, with 
canine neighbour Badger, who often brought a smile to Daksha’s face during treatment 

Macmillan introduced her to the Bedfordshire, Luton and Milton Keynes Cancer Patient Involvement Group, as well as to Healthwatch and Macmillan forums, where she wants to be a voice for cancer patients who are currently underrepresented. In this way, she hopes to break down the barriers to cancer care that currently exist for them.

She also hopes to challenge the stigma of living with cancer within her own community.

She said: “I want to show people in my community that it’s okay to talk about cancer. Acknowledging cancer doesn’t mean your life is over. If anything, it means you can start to come to terms with how your 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.”

Macmillan was recently announced as the new charity partner for the 2021 Virgin Money London Marathon and Charity of the Year for Virgin Money.

Macmillan hopes this partnership will help it reach its goal of being there for everyone facing cancer from the time they are first diagnosed, to help with every aspect of their life from treatment, through to finances, and everything in between. 

Ultimately, the charity’s aim is for no one to suffer the difficulties Daksha and Pradip endured, but at the same time it is also facing a significant drop in income, just as cancer risks becoming the forgotten ‘C’ of the coronavirus pandemic.  

Rebecca Loan, Macmillan Engagement Lead in Bedfordshire said:“For someone who is well, driving 10-15 miles to attend a regular group or activity may not seem like an arduous task. But when you’re undergoing exhausting cycles of chemotherapy, and trying to juggle the demands of everyday life with multiple trips to hospital for cancer care, it can feel like one journey too far.

“Groups like Daksha’s provide a vital support network for people who may live a long way from family or aren’t able to travel into the nearest town – complementing the free Macmillan Support Line and Online Community services, which can be accessed from anywhere in the UK. 

“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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