LIFESTYLE

Secondary1st Founder On Fulfilling His Wife's Dying Wish To Save Others With Breast Cancer

Where one tragic journey ends, another positive one begins.

23/06/2016 17:04 | Updated 28 June 2016

Almost every charity has a poignant story behind it, inspired by people who demonstrated incredible acts of strength even when struck down by illness.

Rosie Choueka is one of these people: her story is one of selflessness and perseverance.

After realising her fight with terminal cancer was lost, she was overcome with a renewed sense of strength to fight for everyone else instead. 

Elliot Choueka
Elliot and Rosie Choueka with their two children. 

In 2015, Rosie's life was tragically cut short by secondary (or terminal) breast cancer. She was just 38 years old.

Secondary breast cancer is where the breast cancer spreads to other areas of the body.

Research in this area is notoriously very poorly funded. To combat this, Breast Cancer Now has boosted funding for secondary breast cancer research to 18% of its overall spend.

"It needs to be a real research priority now, as it is ultimately the main reason that women die from breast cancer – and research in this area is absolutely critical to our 2050 vision," says a spokesperson for the charity.

Before Rosie passed away, she issued a handful of requests to her husband Elliot - one of which was to set up a charity funding secondary breast cancer research so that one day, others like her could survive.

In the wake of her death, Elliot put his heart and soul into creating a charity that would not only tell Rosie's story, but would "outlive us all". 

The charity, called Secondary1st, launches on 28 June and has a strategic partnership with Breast Cancer Now, which means the funds it raises are spent solely on secondary breast cancer research.

Lack of research in the area is the reason why Rosie Choueka isn't here today. And it's something her husband is desperate to rectify, so that other families don't have to endure the same pain and suffering.

Elliot Choueka
Rosie and Elliot after getting married in 2004. 

Rosie was 37 years old when she found a lump on her breast. After undergoing tests she was diagnosed with primary breast cancer.

"It turned out that she had triple negative breast cancer, which is very rare and one of the most aggressive forms," says Elliot.

"When we got the news, we asked lots of questions. I can’t remember if we cried there and then but I know that I cried when we got in the car to call her parents afterwards.

"The intention was that I would call her parents to tell them the news because I thought it would be too hard for Rosie. But I was the one who broke down and she had to tell her parents."

Following her diagnosis, Rosie had a lumpectomy followed by chemotherapy sessions which ran from August until November 2014. Some of the sessions would last for between eight and nine hours.

"That was a pretty horrible thing to see her go through. It’s debilitating," says Elliot. "The irony of most cancers is that it’s the treatment that makes you ill. You’re not ill from the cancer initially - obviously if you leave it then it will make you very ill - but it was the treatment that laid her so low."

Elliot Choueka
Elliott and Rosie's children, Natalie, 8, and Joseph, 5.

Elliot says telling their children that Rosie had cancer was extremely difficult. Their youngest son Joseph was born profoundly deaf and was just four years old when Rosie was diagnosed. Their older daughter Natalie was seven, but still too young to fully understand what was going on.

"We didn’t say anything to the children initially," explains Elliot. "Joseph was very little. We told Natalie that mummy wasn’t very well, that she was going to have an operation and that she was going to have a drug, chemo, that would make her feel very ill and that her hair might fall out.

"We didn’t use the word ‘cancer’."

Elliot was unsure how to help his wife, so he called Breast Cancer Care's helpline for advice on how to support her. He says that, ultimately, what helped him was that Rosie was completely accepting of her situation and that she had researched everything thoroughly. 

"There was no denial that she had this disease," he says. "It was something to deal with: she had the treatment, she carried on working, she didn’t want to bury her head in the sand but equally she wanted normality."

After finishing her primary treatment, Rosie was given the "thumbs up" from her oncologist and breast surgeon. She was finally getting better.

But five days later she found another lump and was back in hospital. She underwent a series of tests and was met with devastating results - the cancer had spread to her liver, she had secondary breast cancer.

Her next course of treatment was chemotherapy - but a more intense cycle.

"It was a pretty tough regime," says Elliot. "I think it was after about six rounds of this type of chemo that one of the nurses told Rosie that all of the other women who had been put on this regime had only managed one cycle - and she had done six.

"She was adamant that she was going to get through this."

Her chemotherapy sessions started before Christmas 2014. The treatment was working to shrink the cancer however it was having a negative impact on her blood count, which was constantly dropping. 

As a result, Rosie had blood transfusions to try and boost everything, but it wasn't enough.

"Her oncologist explained to her that she needed to come off chemo because if she didn’t, it would kill her," Elliot explains.

Elliot Choeuka
Elliot, Rosie and their two children Natalie and Joseph.

By this point, the couple had started to "lay the ground" to their children that Rosie might die.

She was accepted to have SIRT treatment, a special type of radiotherapy that targeted the cancer in her liver. But to have the treatment she had to stop having chemotherapy.

During a gap between the two treatments, the family went on holiday to Israel. It was during this time that Rosie became desperately unwell.  

"A couple of days into the holiday she said she had a stomach bug, but was adamant she didn’t need to go to the doctors," explains Elliot. 

As the holiday went on, she became more and more unwell. 

"It’s only when I look back at the photos that I realise just how ill she was," says Elliot. 

On 31 May 2015, the family returned from their holiday and on 1 June, Rosie went to hospital and her breast surgeon immediately asked to admit her. Rosie insisted she was okay to go back home, but by Tuesday morning she was on a morphine drip. 

"From that point on it was a slow decline," Elliot recalls. "She was displaying really odd symptoms. She fell when she went to the toilet and when she’d try to drink something her arms wouldn’t hold themselves up properly and would drop down.

"We all thought that the cancer had spread to her brain - which is what she was most fearful of. But they did a brain scan and it turned out that the toxins in her blood were overwhelming her body, as her liver had given up, and the liver is responsible for cleaning the blood."

On the following Friday, Rosie was transferred from hospital to the Marie Curie hospice in Hampstead.

"I remember we were in the ambulance going from the hospital to the hospice, and she was really bright and awake and we were talking," Elliot recalls. "She said how ironic it was because we were going back to the place where we met - that our life together would end where it started."

In her final moments, Rosie was on very strong medication and was sleeping a lot. It was at this point that Elliot had to explain to their children that "mummy was going to die".

He recalls: "The last time they saw Rosie was on the Thursday before she died, I didn’t have the heart to tell them that this would be the last time they’d see her. 

"That day I made them say goodbye to her, but obviously they wouldn’t have understood what that meant."

Five days after the children's final hospital visit, Rosie passed away. 

"I’d called Natalie in the morning to say, ‘have a good day at school’ and I asked her if she had any messages for mummy and she said, ‘give her a kiss’," says Elliot, who was staying at the hospice with Rosie.

"I went back to her room, gave her a kiss and she kissed me back. About five minutes later she’d gone."

Elliot Choueka
The family's final photo together. 

In the months leading to her death, Rosie ensured that measures were put in place for when she was gone. 

"She left me three letters. One was a four-page letter of what to do immediately after she died and it ended with 'remember to eat'," explains Elliot.

"She left me a letter which was filled with her memories of our life together and she also wrote a letter about which of her precious possessions were to go to friends and family.

"She had put together memory boxes for the children and she had also started writing birthday cards for the children. She bought 20 years worth but had only managed to write cards for their next three birthdays.

"She requested she wanted me to be buried next to her. She told me how she wanted the children to be brought up. She said she wanted me to find a wife and not be alone. She was entirely selfless."

Perhaps most importantly to her, Rosie had asked Elliot to set up a charity to raise money for secondary breast cancer research.

In the wake of her death, Elliot began work on setting up the charity, while juggling copious amounts of life admin, managing two young children and working full-time as head of creative for Experion.

Secondary1st is something that Rosie would certainly be proud of.

The charity's purpose is to channel funding into secondary breast cancer research and raise awareness of the illness.

Kris Hallenga, the founder of Coppa Feel, was diagnosed with secondary breast cancer seven years ago. She says lack of public understanding surrounding secondary breast cancer is a huge issue that needs to be addressed. 

"We often hear 'advanced', 'metastatic', 'stage 4' and 'secondary' - and guess what? They all mean the same thing. And they all eventually lead to death," she tells HuffPost UK.

"Cancer that is found in one area and which stays in that one area, for example your breast, doesn't kill you. It’s when it spreads to your organs and grows to a size that stops your vital organs working that it becomes life-threatening."

She says: "When I was first diagnosed with breast cancer there was a sense of urgency, that my breast would be removed and I would be fine. Within a week we all knew it had already spread and the tempo changed dramatically, it switched from 'let’s cure this' to 'let's see how long we can keep you here'.

"It’s not just an increase in money going towards secondary research that is needed, but also a change in attitude. Seven years on and I am still here and so are thousands of others living with cancer every day.

"The sooner the public are educated about secondary cancer, the better." 

SEE ALSO:

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Double Mastectomy Patient Speaks Candidly About Breast Cancer's Harsh Reality

Katie Goates is the senior research communications officer for Breast Cancer Now. She explains that the difficulty with secondary breast cancer is that secondary tumours don’t get operated on, which means researchers don’t have access to tumours to do experiments with.

She says that in order to tackle secondary breast cancer, there are a number of questions that need answering: “For example, how do we stop it spreading in the first place and stop it becoming secondary breast cancer at all? Even when it does spread, some people have cancer cells that lie dormant and then crop up again as secondary breast cancer.

"Additionally, secondary cancers are very good at becoming resistant to treatment after a period of time. We need to get to the bottom of why this happens."

There's a long way to go before we can begin to save the lives of people with secondary breast cancer. But hopefully, with the help of Secondary1st, this will fast become a reality.

While the death of his wife has caused Elliot an indescribable amount of pain over the past year, he now insists that it's time to move forward. 

"You slowly get used to the absence. She’s still there, but she’s not there," he says.

“Rosie was the sort of person that got on with anyone. She was a people person. She was incredibly clever but she never made you feel small.

"She was a great mother, a great daughter, a great wife and a fantastically successful lawyer."

The most important thing for him now is to keep living life, to launch a successful charity in Rosie's name and to never let the children forget who their mother was.

"Natalie asks me every single night to tell her a story about mummy," he explains.

"I’ve got hundreds of photos of Rosie, so I’ll randomly pick one out and we’ll look at it, and I’ll tell her where it was and what we were doing. She won't go to sleep without me telling her stories."

He adds: "Rosie will always be around in the photos and videos and memories. She will never leave our lives."

Elliot Choueka
Rosie Choueka will never be forgotten.

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