Even after waking up from cancer surgery, my pain wasn’t taken seriously --[Reported by Umva mag]

I discovered my breast lump by fluke. 

I’d sat down to eat after work, but I was multitasking – talking to Mum, watching the TV – and a bit of food fell down my bosom. I distractedly reached down to fish it out, and held the lump in my hand.

I called the GP the next day and he sent me for a mammogram and ultrasound and I ended up having a biopsy, too.

Mum returned to the hospital with me to get the results. ‘Unfortunately,’ the doctor said: ‘They have come back as cancer’.

Mum gasped. I knew if I looked at her, she’d start crying, so I just sat there, not moving, staring straight ahead. Then I leaned forward, gestured to my breasts and said: ‘Take them both off.’

I could tell the doctor was taken aback. ‘We’re not quite there yet, Tricia,’ he replied. But as a former theatre nurse of 10 years, I had scrubbed in on too many of these cases to take a piecemeal approach. 

The doctor eventually said we would run some more tests, and Mum and I walked home. She was upset and frightened, but during that walk I made up my mind to stay strong and face whatever I had to. 

You’re going to get through this, I told myself. You’re not going to let this beat you.

The hospital called me back in for a scan and repeat ultrasound the following Friday. The radiographer walked in while I was lying on the sofa, partially clothed, with just a thin piece of paper covering me. ‘Oh,’ she said, ‘we can see your cancer has spread’.

I sat bolt upright, started crying and demanded to know what she was talking about. She looked at me blankly and told me I would find out more at my next clinic visit.

I couldn’t face a weekend of not knowing, so I called a friend who is a breast surgeon. She was livid, railing about how that should never have happened and saying that she wanted me transferred to the hospital where she worked at the time.

Within days, she’d put my transfer in motion. Feeling completely overwhelmed, I just did what she told me. 

I had my first appointment with my new female consultant the next week, and from the moment I met her, I felt at ease. She examined me, explained the course of action she wanted to take and encouraged me to take a holiday in Tobago while we waited for the histopathology results.

I stated that I wanted a double mastectomy. She listened and was sympathetic but when she pushed for a single mastectomy, I accepted. I felt like she was a doctor who had my best interests at heart and that’s what made the difference.

When the day of my surgery came around, I was put to sleep – then woke up in a huge amount of pain. It took an hour to get any pain relief and, when it came, it was the weakest of all the painkillers the anaesthetist had prescribed. 

To add to my pain, a healthcare assistant refused to get me a bottle of water, which I was prepared to pay for; another couldn’t work out how to take my blood pressure without hurting me.

And when I asked if she could help me walk to the toilet, she said no, I’d have to get a nurse. Eventually, I was made to use a bedpan. 

Now I know what patients mean when they say it’s really uncomfortable. 

In fact, my whole stay in hospital was a horrible experience. Being a hospital patient can be a daunting experience for anyone, but I believe many things simply are not considered when it comes to making treatment decisions for people from ethnic minorities. 

One of the most prevalent misunderstandings is that Black people as a whole tolerate pain better. That is not true at all – pain is pain. We may try to be stoic but if I tell you I’m in pain, you need to believe me. 

We also hear about the postcode lottery when it comes to healthcare. I’ve found that where you live, your own knowledge and your presentation can, and do, influence how you are treated by medical professionals, and what information you are given – and people from ethnic minorities are adversely impacted. 

When staff found out I actually had a nursing background, the way they interacted with me changed. I remember challenging a nurse who’d come to administer a controlled drug on her own – I knew this was not the correct process to be followed and I had to insist that she bring her colleague before I would let it be given

After being discharged, I quickly began to lose my hair due to the drug I was prescribed.

A lot of women going through cancer treatment fear losing their hair; personally, my dreadlocks were a key part of my identity. When the first of my long dreadlocks fell off, I sobbed. 

I’ve had to embrace the bald look (if this is what I’ve got to work with, then so be it!) and I am now in year five of my cancer journey. I’ve been told that while I’m ‘clear’ of cancer, I should continue on treatment for another three to five years. 

The anxiety of cancer never leaves you. Every little thing that happens becomes a worry – and I cannot do a second cancer journey. If there is a threat of cancer in any part of my body, I want it gone, least of all because I can’t bear to experience the same treatment from healthcare professionals.

Even more recently, I was compelled to lodge a formal complaint with my oncology team due to the off-hand manner of one of the doctors I spoke to.

She rang to talk to me about some medication; she did not identify herself by name then told me indifferently that I did not need to do my own research into the medication she was telling me about, as she was the doctor. 

I cried. I felt I had no power.

But, I realised I need to create something positive out of my experience. I can’t let the progress made by those who have gone before me, those who are no longer with us, fall to nothing.

Today, I am involved in several initiatives with charity Black Women Rising and pharmaceutical company Novartis, where my advocacy extends to addressing often taboo topics and aims to foster open discussions about breast cancer within my community and other marginalised groups. 

I also belong to the BAME Health Collaborative, which was set up during lockdown when information started to emerge about the real health inequalities that impacted so significantly on ethnic minorities during the pandemic.  

We need to get better at diagnosing breast cancer and particularly for women from Black communities. Women must do self-examinations and go for regular mammograms but not every lump will be picked up in either, so we need both.

I would also like to see the age of breast cancer screening brought down in the UK. It currently starts at 50 but if screening started at 40 I, and many others like me, would be picked up.

Health researchers also need to do their part. People from ethnic minorities are rarely involved in health trials, whether by design or ignorance. New drugs, for instance, need to be tested on people from BAME communities, because effects can vary from person to person. These companies need to move past their biases.

Finally, in a lot of communities, talking about illness – especially cancer – can still be a taboo. 

Some people are quite open and have a support network but for others, cancer is seen as a shame, a disgrace or a curse, depending on which community you come from. I’ve heard about people hiding their diagnosis from their immediate family, from husbands and children. 

For Black people, the barbers, hair salons and nail salons are a great place to get people talking – we are missing a trick if we don’t get conversations in these environments – as well as faith groups. People will follow the pastor’s advice. 

If whatever I do or say resonates with or impacts just one individual, then I’ll be happy. 

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

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