A mum living with terminal cancer has told how she hopes to live long enough to make memories her daughter can remember. Two years ago Nina Lopes was given the all clear by doctors after being treated for breast cancer.
The 36-year-old had already faced a long fight after she first found a lump only to be told it was nothing with one doctor saying "young women have lumpy breasts". However after months of going backwards and forwards to the doctors she was diagnosed with primary triple negative metastatic breast cancer.
The mum, from Croydon, underwent successful treatment - but says she always thought it could return. Sadly her fears were realised and in August last year she was diagnosed with stage 4 triple negative metastatic breast cancer, My London reports.
Now she is hoping to find treatment which will help her live long enough to spend more time with her 11-year-old daugher, Ilani and see her start secondary school. She said: "I'm still here and I'm very grateful, I love my life and all I need is more time and I'm going to do everything I can. I want to see my daughter grow up, I'm very grateful that I've seen her finish primary school.
"I still believe that I will be okay, I think I'm going to die and other days it doesn't seem real and I don't see the end. It's so important to me to make the most memories with my daughter. I know that at 11 you're limited with what you can remember later in life. I would love to be here until she's 16 so we can make memories."
Nina told how she first discovered she had cancer after six to seven months of going back and forth to the doctors after feeling unwell. She told MyLondon: "I didn't feel like everything was right in my body. I was feeling extremely tired and watching something on my laptop while lying down. A bit of popcorn fell on my chest. When I went to pick it up that's when I felt a lump.
"The doctor told me it was nothing, that young women have lumpy breasts but I knew something wasn't right," she added. Nina was finally told to go to hospital where she had an ultrasound, mammogram and biopsy: "I kept going from one room to another, while other women were leaving and in my heart I knew."
According to Cancer Research UK, triple negative breast cancer does not have receptors for the hormones oestrogen and progesterone and a protein called Her2. This means it doesn't respond to hormonal therapy medicines, which usually means it's more aggressive and harder to treat. Research has shown that black women are twice as likely to be diagnosed with triple-negative breast cancer compared to white women.
Nina says she had to come to terms with losing her hair, and being told she might not be able to have anymore children: "All the things you aren't prepared to listen to at 36," she said. "All I remember is that you have cancer, I just assumed that cancer equals death."
Nina responded well to treatment, which included six or seven months of chemotherapy, a lumpectomy and radiotherapy. She said: "Doctors felt confident that the chances of it returning were slim. But triple negative is one of the types that is known to come back and after I completed my treatment in April 2019 I lived in the view that it could come back, I was not in remission."
Nina returned to work after she finished treatment. She was working as a fashion designer for a company that made men's suits for high street brands. But, the company went under and she was made redundant during the pandemic. Nina says that she felt like "a completely different person" following her cancer diagnosis and says she faced "learning how to navigate this new world".
In the process, she created a platform on Instagram and TikTok called @frodayss to raise awareness of triple negative breast cancer. Nina said: "I quite quickly connected to a lot of young women and it became important for me to remind them about checking their breasts and knowing their bodies, feeling empowered to know that if something is wrong, they can say something and ask for a second opinion. My page has never been about fear or desperation, it's always about sharing my journey and how I'm feeling."
Now, Nina has a combined total of more than 35,000 followers on social media. One aspect that Nina's platform focuses on is losing her hair after going through chemotherapy: "Growing up, I always wanted to change my hair, I was trying to conform to a specific aesthetic. When I was diagnosed with cancer and told I was going to lose my hair, that was a big life lesson.
"I didn't realise how much of my identity was connected to my hair, my femininity, my appeal, my beauty. When I lost my hair, I really had to fall in love with myself for the first time. I learnt more about myself being bald than I ever did my entire life. When my hair was growing back, I learnt to appreciate it, I didn't want to straighten or colour it. I just accepted myself for who I was. The more my hair grew, I felt like that was the life I had been given, the blessing of being alive."
When Nina's pain returned, doctors and nurses said is was "a side effect of the treatment". Nina said: "They kept trying to send me for physio, but eventually I put my foot down. The time came for me to have the last MRI on the NHS. I had my last MRI in July last year and that's when they picked up that my cancer was back." The NHS offers yearly MRI scans for women who are between the ages of 30 and 40, and have an increased risk of breast cancer.
The MRI scan showed that the cancer had returned and spread to Nina's lymph nodes, chest wall and sternum: "This diagnosis was very different, it was about treatment to give a better quality of life, with the hope it may extend life and slow progression. The chemo has dramatically eased my pain and I'm blessed that I have had a response," Nina added.
She also hopes that people who are diagnosed with stage 4 cancer are made to feel important: "With stage 4 it doesn't get spoken about enough. Most of the stories are about someone beating cancer but so many of us are living with stage 4. Every three months I have to have a scan and spend seven days of holding my breath and waiting for the results.
"This is what many women and men like me are having to go through. We're made to feel like it's the end, a chronic illness. It feels like a constant battle having to advocate for yourself in order to have the best treatment possible. I want women like myself to be represented. I am mixed-race.
"When I was going through my treatment, I didn't feel like the wig I was given looked anything like me or see myself in the paperwork and leaflets I received. If other women who look like me, see me going through what I'm going through, they can feel seen. Cancer does not discriminate, it does not matter what race we are," she added.
Nina's active treatment has currently stopped because there is a limit on the number of cycles offered, but she is seeking alternative treatment options that aren't available on the NHS. However, they come at a cost. Nina's friend, Ruth Taylor, set up a GoFundMe, with the money raised put towards treatments that aren't readily available.
Ruth told MyLondon: "The fundraiser came about after speaking to other women within the cancer community and also seeing that, while we've got the NHS, there are a number of treatments that aren't available. And it shouldn't get to a point where there are trials but she can't join them because the money isn't there."
Ruth added: "Nina's message is hope. She wants to be remembered and build a legacy on always keeping hope alive for anybody going through cancer. You've got to keep fighting, keep talking and not suffer in silence." Nina has also signed up to trek 100km through the Sahara Desert in November to raise money for charity.
You can donate to Nina's GoFundMe here.
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