PUBLISHED ON: 20 March 2019

Helena didn’t know anything about breast cancer until she was diagnosed. Now she’s sharing her experience to help raise awareness.

Helena before surgery

I was ignorant about breast cancer

Before my diagnosis, I didn’t know anybody who had breast cancer. I was quite ignorant of what the disease was and I didn’t check my breasts.

When I found a lump on my breast, I asked my other half to look. He suggested going to the doctor.

I had an unrelated appointment the next day for my asthma, so I took the opportunity to ask my GP to look.

I had a scan and biopsy. The person who did my biopsy went in with the needle quite a few times.

When they finally told me it was breast cancer, I swore. I wasn’t scared. I wasn’t worried. I was just shocked. If I made a list of names of people that I thought might get ill, I would never have put my name down. I don’t drink or smoke and, as a fitness and dance instructor, I was healthy and fit. It made no sense.

Telling people about my diagnosis was exhausting

It was exhausting telling everybody about my diagnosis. I cried when I told my other half, my mum, my brothers, and a few friends – the conversations were draining. Some people had so many questions, asking me if I was sure it was breast cancer. Others just sat there, not knowing what to say.

There are people that you must tell and people you should tell because they might be affected by it. It was a lot to deal with. Eventually I composed a text and sent a message to everyone at the same time.

The messages started flying in. Everyone asking, ‘How are you? How was this treatment? That must have been really terrible.’ It was too much.

I found my own form of support

I decided to start a YouTube channel about my experience, so everyone could see how I was doing. It was a great release for me, and somewhere to feel like I was being heard.

The information leaflets and posters at the hospital about breast cancer didn’t relate to me. I felt like I needed to find my own community to connect with. My videos allowed me to reach people I wouldn’t have met, those who got in touch to tell me that my videos helped them. It was great to get support that way.

Helena after hair loss

I was angry at my body

When my treatment ended, I was so happy to leave the hospital with no intention of going back. After my chemotherapy and mastectomy, I still had a year of Herceptin injections on the horizon, but I was elated.

A few weeks after, it hit me. I had gone from having hundreds of people, online and offline, rallying around me and checking in to suddenly being dropped. I couldn’t cope and felt miserable.

I would look in the mirror and feel fed up. I beat myself up about the fact my body just couldn’t snap back to how it had been. I’d always been fit and now all the wear and tear I’d experience from my years as a dancer had been exacerbated by the chemotherapy. Every step hurt.

I remember going to the gym and trying to do my usual routine but stopped halfway. I burst into tears. I was so angry at my body for not doing what it used to be able to do.

My mental health worsened

My mental health had always been up and down. During treatment, I started experiencing anxiety. It began with every visit to the hospital making me anxious. I’d have a panic attack in the car just to leave to go to the hospital. Then I wouldn’t get to the car. Then I wouldn’t get out of bed.

After treatment, I was diagnosed with post-traumatic stress disorder after having a severe panic attack. It’s such a see-saw of emotions. You’ll be feeling the lowest you’ve ever felt, but because you’ve just gone through something life-threatening, you have a different perspective on it.

Helena and her son

I couldn’t believe my breast cancer had come back

In January 2017, I was told that I had a recurrence. I had found a lump in the same place as before. It was unbelievable.

I didn’t start treatment again until March. Waiting around was the worst time for my mental health. I kept thinking, ‘What if it grows? What it if moves around? What if I die this time?’

I felt like I didn’t have time for it. I had only just finished having Herceptin treatment in October 2016. And a few months later, I was starting it all over again. 

Spreading awareness fights ignorance

When Leanne Pero told me that she had set up Black Women Rising, I knew I wanted to be involved. I feel like I faced a lot of ignorant behaviour and discrimination as a black woman during my experience, especially when trying to get wigs for Afro hair.

The Black Women Rising project can tackle discrimination because it’s giving us a platform to be heard. Breast cancer is breast cancer, but there are certain things that are different for black women. By spreading awareness, you can fight that ignorance.

Take control of what you can

My advice to anyone diagnosed with breast cancer is take control of what you can. I’m very decisive, and when we were consulting on my mastectomy and reconstruction, my surgeon suggested that I have a DIEP flap, where tissue is taken from your tummy to help rebuild your breast.

I had to say no. My job is being a dance and fitness instructor. I didn’t want that change to my body. By knowing my options and doing research, I was able to make the right decision for me.

Taking control of your finances is important too. Find out what you’re entitled to. The first time I was diagnosed, I felt like a fraud asking for financial help. But with my recurrence, I’ve leaned on what's on offer to me. It’s been such an important lesson for me to learn.

Join Helena at the Black Women Rising event in London this March.

Black Women Rising