“I want to normalise the conversation within the South Asian community around gynaecological health and cancer.”  Sbba's story

Published: 23 January 2024
Sbba was diagnosed with ovarian cancer in 2022. Since her diagnosis, she has been raising awareness to ensure women and people of colour have access to relevant information about cancer.

"I had very few symptoms initially, I was feeling unwell and tired all of the time"

I had put on some weight, and I could only eat small amounts as I got full very quickly.

I was back and forth with my GP for several months and was told that my symptoms could be menopause related, IBS polyps or endometriosis.

I could not get a face-to-face appointment and was only offered online consultations or telephone. In these appointments I felt my symptoms were dismissed without investigation.

By Christmas 2021, my symptoms were getting worse, and my tummy looked like I was 6 months pregnant. At this point I felt like I was making a mountain out of a molehill as the doctors are the experts and I did not want to waste their time.

That was until I had a routine appointment with my dermatologist who urged me to get a face-to-face appointment and have my tummy checked out as it was severely distended.

"I went back to the GP and insisted he investigate further."

I insisted on blood tests and scans, and this is where my cancer markers came back raised and they started to take me seriously.

In my head I assumed it was probably endometriosis or similar. Something that was not scary and was easily treatable.

The ultrasound showed growths on both of my ovaries, and I was immediately referred for a CT scan and an MRI scan. 

From here onwards things moved quickly. In my oncology appointment the doctor very casually said they suspected stage 3c ovarian cancer, ‘here’s a box tissues, this is your clinical specialist nurse and she'll explain more’. 

“The day you receive your diagnosis is the most heart-breaking point of your journey.”

I went through the information about the medical side of things and my clinical nurse specialists were amazing! Often, the doctors and registrars were often very clinical in their approach, but the nurses understood the emotional nuances that were required at the right time.

I was given Macmillan booklets to read. When I got home, I flicked through them and the first thing I noticed was the absence of anyone that looked like me! I saw few South Asian faces.

“I decided to have surgery to get the damn thing out.”

I had my surgery in April 2022. It was unsuccessful as the cancer had spread to other vital organs. I was distraught.

I also reacted badly to the anaesthetic and painkillers so was not lucid when doctors tried to explain what had happened.  I was devasted and just wanted to go home. I eventually came home exhausted physically and mentally. I kept looking at my stiches and thinking what has just happened to me.

Next steps were chemotherapy, I had a PICC line fitted, and it started in June 2022 with six rounds planned.  The surgeons wanted to shrink the tumours before they went back in to operate.

"Chemo was hard and it threw every after effect at me"

I developed peripheral neuropathy, which I am still dealing with. I had four rounds, but my body could not cope with more. A scan in August 2023 revealed that chemo had not been successful and had not shrunk the tumours enough for surgery to be viable.

The oncologist suggested oral chemotherapy, it was a new drug called Mekinist Tremetabi.

The oral chemo was awful, apart from the fatigue, constipation and diarrhoea, a skin rash was another of the side effects. By week four this had spread to my whole body, and I still persevered for 7 weeks.

The rash was from head to toe and my skin began to peel. I came off the oral chemo after 7 weeks, my body just could not take any more and this was taking a toll on my mental health.

This period of my treatment was the darkest for me. At this point I wanted it to all end. I was broken physically and mentally. 

“Thankfully, the surgeon was happy with the CT scan”

My second surgery was booked for February 2023, but the surgeon had concerns about the rash I had. I could not risk more delays, so I went to see a dermatologist privately. My surgeon was happy my skin had cleared up enough for her to operate.  Surgery went ahead and the outcome was better than we expected.

I had full debulking, bowel resection, appendix and much more so 5/6 major surgeries in one go. The end result was 100% tumour free, no residual disease.

I could finally get off the cancer rollercoaster that I had been on and although it had been unimaginably difficult, the result made it all worthwhile.

"Looking back, I wish I had trusted my own judgement more”

I wish I had listened to the little voice in my head that was telling me that this was more than just menopause.

If you feel something is wrong then be insistent, ask for tests, ask for a second opinion if you have to, do whatever it takes to get things investigated.

If you are going online to search for symptoms and other information, make sure it is a reputable website like the NHS or Macmillan where you know you will find accurate information.

“Ovarian cancer is a silent killer and there is little awareness about symptoms.”

Since my diagnosis, I have been vocal on raising awareness to ensure women and in particular people of colour have access to relevant information.

Treatment was relentless and the failed surgery and chemo brought up so much emotionally that I accessed Macmillan counselling via Bupa, and it was a life saver in a time that was very challenging for me. 

It gave me a safe space to share my thoughts and process what I was going through without being judged. 

Treatment has changed my life drastically although I have recovered from most things I am still having to live with peripheral neuropathy in my hands and feet.

"Cancer has given me a new value and appreciation for life."

A south Asian lady with brown hair with a sign supporting people with cancer .

I am putting my life changes to good use by raising awareness on ovarian cancer and trying to shatter taboos around cancer and in particular gynaecological cancers. 

I want to normalise the conversation within the South Asian community around gynaecological health and cancers.  I am sharing my story as I want to increase the visibility of South Asian faces and voices.  Through treatment I saw no one like me, in the literature I saw no one like me, so I questioned is this for me? 

I want to be that advocate and I want to make change happen. Visibility is so important; I did not see enough of it.   

I have met so many women who due to cultural taboos and a patriarchal society, feel they do not have a voice - I would like to be a voice for them.