I was in a constant battle to get the breast cancer treatment I needed

It was spring 2022 and I was having radiotherapy – but no one told me how difficult this was going to be.

Once again, I lay in the hospital as the person who was supposed to be administering my breast cancer treatment struggled to do just that.

The radiotherapy machine attacks the cancerous cells in your breast; and tattoo markings are drawn around the exact area the machine should target.

Only – very few radiographers could ever find my tattoo marker. I’m Black, and my skin tone was too dark to be able to see it.

Every time I had a radiotherapy appointment, it should have taken five minutes. But, inevitably, it would always take 20 minutes or more.

This ineptitude was typical of my treatment throughout my illness – an ineptitude that could have been avoided if healthcare professionals had more insight into how to treat Black patients.

I first discovered a lump in my breast in June 2021, when I was play-fighting with my two boys – seven and five at the time. My youngest drop-kicked me in my breast, and I fell backwards.

It was while I was assessing the pain that I felt the lump; I could only feel it if I was lying down flat.

At first, I shrugged it off – but a tiny voice in the back of my mind kept nagging away at me.

In the end, I asked two colleagues about it.

‘Yeah, get it checked,’ they said. ‘It’s probably nothing, but it’s always better to know’.

I saw my GP the next day and they referred me to hospital; I assumed it was all just protocol.

A week later, I saw a consultant at the hospital’s rapid diagnostic centre, who immediately said: ‘It’s not benign’.

They could tell just from feeling the lump.

That same day, I had a mammogram, an ultrasound and a biopsy – and then, I was told: ‘I’m really sorry – you’ve got breast cancer.’

My only thought was my kids. ‘I’m going to die – who’s going to look after my children?’, I kept thinking.

I wasn’t taking anything else in.

It just didn’t feel real; I was 38 and I didn’t know anyone, really, who’d ever had cancer. 

I’m a single mother, and I told my children immediately. My youngest was fairly oblivious, but the first thing my seven-year-old asked me was whether I was going to die.

‘No, Mummy has no intention of dying,’ I replied.

And I didn’t. If it wasn’t for my kids, I don’t know how motivated I would have been to keep going throughout my treatment; but my focus was them, and so I didn’t have any other choice.

I had my first surgery, to remove the tumour, in July 2021.

Soon after, I was told – very abruptly – by a surgeon that I’d need a second surgery, because there were still cancerous cells in my breast.

I went away and did some Googling; and I learned that most people who have a second surgery have chemotherapy first, to help kill off the remaining cancer cells.

My oncologist eventually agreed this was the best route for me, but I effectively had to come up with – and then advocate for – this line of treatment myself.

Chemotherapy was very, very hard. I really had to work to tell myself there would be light at the end of the tunnel.

I developed a lot of side effects, like neuropathy, which gave me numbness and tingling in my fingers and toes – I still have this now – and which no one had really mentioned to me.

I never saw anyone who looked like me in any of the information leaflets; it was so isolating

I did some research, and couldn’t find any data about neuropathy being a side effect of chemotherapy in ethnic minority patients. I did find one American study, though, which found that neuropathy was a much more common side effect in African American patients.                                         

It was so disheartening that no one around me seemed to have any awareness of this.

In fact, I felt really low throughout my chemotherapy. I never saw anyone who looked like me in any of the information leaflets; it was so isolating.

‘There must be a group I could join; people I could relate to,’ I thought – and that’s how I came across the cancer support project Black Women Rising.

They were my lifeline. I found so many Black women who were going through the same side effects I was; I realised I wasn’t just an isolated problem. It was all bigger than me.

And I thought: ‘Does something in the system need changing?’ 

I had my second surgery in January 2022, and started radiotherapy that April – and, of course, that was rife with issues with my tattoo markers.

I once asked a Black nurse if it was really that hard, as she could find my tattoo markers immediately.

‘No, it’s not,’ she answered. ‘But there isn’t really any training on how to deal with different skin pigmentations.’

I felt so let down that nobody had articulated this to me before. I wouldn’t have been offended if somebody had told me it might be hard for them to find my marker; I’d have said, ‘make it bigger’.

I would have simply been happy that extra precautions were being taken to save my life.

I then experienced a severe burn on the skin the radiation machine had targeted, so I called the hospital helpline.

The nurse on the phone asked me to describe the burn. ‘Well, it’s black, because I’m Black,’ I said.

There was a pause.

‘If it’s not pink, it’s not a problem,’ she eventually said.

‘I think you’re referring to a white skin tone,’ I said, doubtfully – but she insisted it was OK.

I knew it wasn’t OK; it was so painful I couldn’t even touch my breast and chest. I sent a picture to my breast care nurse – it turned out I needed antibiotics.

My whole cancer journey was a constant battle to get the treatment I needed.

All the healthcare professionals who’ve treated me have been lovely; but the issues that we, as ethnic minority patients, face could be avoided if more conversations are had, and if medical professionals have knowledge and awareness of how to actually treat us.

As my tumour was invasive at the time of diagnosis, I had immunotherapy injections alongside my last round of chemotherapy. These were supposed to continue for a year after chemo to reduce the chances of the cancer returning – but this line of treatment got cut short, because it gave me complications to my thyroid and heart. 

For a while after starting immunotherapy, I’d been complaining of fatigue and brain fog; but I’d put it down to my treatment. I had regular ECGs – heart tests – every three months, though, and in August 2022, one of these found that I had heart failure.

It was yet another blow in what had already been a difficult journey.

I’m now being treated for this and my heart is getting better – but it’s been so hard.

I’ve now been cancer-free for two years. I’m so grateful for that; but my life hasn’t just bounced back.

I had a mammogram recently, and I hadn’t anticipated how much it would trigger me. The possibility of the cancer coming back is always in the back of my mind.

I’m working on finding a balance, so that it doesn’t take over my mind completely.

And I’m trying to raise awareness of the gaps in knowledge – through greater inclusivity in clinical research, for example – when it comes to treating Black patients with cancer.

I want to encourage medical professionals to be open and willing to work with Black communities and grassroots organisations to learn more about what they don’t know, and to adjust treatment accordingly; and I want the government to address this. Change has to come from the top down.

I don’t want anyone else to go through treatment without knowing what’s ahead of them, or what’s happening in their body when they’re being treated.

Now, I’m very much at the rebuilding stage – physically and mentally. I will get there; but it’s a gradual process.

Life will never be normal again. But it will get better. That much, I do know.

As told to Izzie Price

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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