Let’s open up the conversation
The conversation around gynae cancers needs to be far more open. I was at stage 3c before I was diagnosed and I know that if it wasn’t for being prompted, I would’ve left it.
Since coming out of surgery in Spring 2023, I’ve been determined to lead change in society. We must ensure every woman feels empowered about their health, that the taboo around gynaecological cancers are dispelled and that everyone has the support that is much needed to get through diagnosis, treatment and recovery.
So, who am I? I am a third generation South Asian woman living in Slough.
I am the proud mum of three children a wife and lead a charity knitting group. Up until 2022 I was working full time running my own media and events company and leading a charity knitting group. And in 2022 my world was turned on its axis.
Etched in my mind
Ovarian cancer symptoms can appear as something else. The symptoms I was getting didn’t seem ‘cancerous’, and after 25 years of having periods coupled with cramps and aches, my symptoms seemed to be a part of life.
However when these symptoms became persistent and frequent, I visited my GP. I was told I was peri-menopausal and might have irritable bowel syndrome (IBS) – but what I know now is that an IBS diagnosis in the over 50s is extremely uncommon and I was 53 at the time.
It was with thanks to my dermatologist (who I had an appointment with to discuss my psoriasis) for urging me to go back to the GP when she noticed my stomach was distended and out of shape. Without her, who knows where I’d be.
Cancer was the last thing on my mind. The CA125 blood test marker (which at the time, I had no idea even what it was) came back raised and within two days I was undergoing an ultrasound which showed a growth on both ovaries. 10 days later, my diagnosis came.
That moment, sat in the room, with my husband at my side hearing the words ‘stage 3 ovarian cancer’ is still etched in my head. The doctor’s mouth was moving, but I wasn’t hearing. As we got into the car all I could think was how was I going to tell my children. Together, we sat and cried.
Escaping from the darkest times
Treatment was traumatic and didn’t go as I’d hoped. I opted to have surgery followed by chemotherapy but after hours in the theatre, horrendous hallucinations as a result of the morphine, all I had to show for it was 48 stiches. The cancer was still inside, and it was further spread than originally thought.
Once I was well enough, I realised just how much of a fight I had on my hands. I began intravenous chemotherapy and experienced every side effect you could possibly have. Sleepless nights, breathless nights were the minor ones. The peripheral neuropathy, nausea and fatigue were debilitating.. Whatever it could throw at me it did. It felt like everything was failing.
I just wanted to be well enough to see her go across that stage – my hair had started falling out at that point. Second chemo infusion. I got my wish, I got to see her walk across that stage. I couldn’t have been prouder.
At the mid-way scan, the tumour was still too big to operate on so we switched to oral chemotherapy. Within a few weeks the side effects of this were unbearable, but I persevered.
I was hospitalised on a number of occasions due to my body becoming exhausted and I had to stop taking it. But thankfully at the next scan – I felt a huge relief as the surgeon said surgery could be possible.
I've been to the deepest and darkest parts of my mind, I've felt utterly broken both physically and mentally. There have been times when all I wanted was the pain to stop. For it all to end. But my faith held me, the love around me pushed me.
Faith guiding me I said to the surgeon:
Today is the day that you get your miracle.
As a Muslim, we have five set times to pray a day and I have been strong in my faith for many years. From January onwards, I made prayers my focus so that I could deal with the side effects from treatment from a place of strength. I couldn’t let any doubt or negativity seep in. This was it. Surgery was going to work, I had to let go of the anxiety, I had to fight and be strong.
In Arabic we have a saying that translates to ‘You’ve got to tie your camel first’, so I entered a military style regime of sleeping well, eating well and doing anything possible to make my surgery possible and be the miracle patient for my surgery.
One of my biggest fears from being diagnosed was not being heard, but every question I asked was answered. Dealing with the anxiety was challenging, especially before surgery, but what calmed me was feeling heard.
Before the operation, the anaesthetist came to see me. I told him about my reaction the last time, the hallucinations and trauma. He listened and told me: “I’ve got you.”
My surgeon went into the operation hoping to remove 70% of the cancer. Four days later, she appeared on my ward. She gave me a hug and told me I had given her the miracle. I was 100% tumour free.
Talking about cancer and breaking the taboo
I had so much love and support around me, from friends and family. I also felt seen and heard throughout all of my cancer treatment, and that some of the healthcare professionals really knew how to respect my heritage.
What I did observe was that looking around the treatment room, there was no one who looked like me and that scares me. We must increase visibility of ovarian cancer within the South Asian community. There's a lot that needs to be done, and while it's great to have information leaflets in different languages, we need to do a lot more.
South Asian women could be missing out on early stage diagnosis as they don’t know the signs or may be embarrassed to go to the GP.
Cancer in the South Asian community is a taboo subject, as are conversations around gynae health. Growing up as a third generation South Asian woman, I've seen the taboo in the community around me.
Despite everything that was going on in my head, and that I was about to endure, I decided early on that I was going to be present and a voice for the South Asian community. My children would know exactly what was going on with their mum, and I will speak about my experience to inspire change and help raise awareness of the symptoms.
How a cancer diagnosis has changed me
Cancer has taught me patience, strength and positivity. Every day I get up and look forward to what the day will bring. There's so much to laugh about, love and feel positive about, that despite the long term effects of chemotherapy and its trauma I want to feel all that happiness throughout my body.
So, who am I? I’m Sbba Siddique and I want to empower women to have their own voice, make informed decisions and give them the best possible chance of surviving ovarian cancer.
If you’ve been affected by this story and would like to speak to a specialist nurse, you can call our dedicated support line on 020 7923 5475 or contact us: [email protected]. We're open from 9am until 5pm, Monday to Friday.
If reading this story has helped you, join the Ovarian Cancer Community to connect with more people affected by ovarian cancer: www.targetovariancancer.org.uk/onlinecommunity
