Sarifa’s Story
Hello. My name is Sarifa.
I was told I had breast cancer 12 years ago after a long road to diagnosis. I was thankfully picked up through screening – so I’m always encouraging people to attend their screening appointments! Early diagnosis is key and although I was diagnosed with stage 3, I am glad they caught it when they did, because I might not be here otherwise.
I live with my husband and adult son and I’m a full-time carer for them both, as they have physical and mental health conditions that mean they need round-the-clock support. I also have hidden disabilities and am a disability campaigner.
I want to give a glimpse into my experience of treatment, in the hope that it might help someone.
Making your caring responsibilities known
I’ve found that going through treatment comes with extra trials if you’re a carer, whether you look after adults or children. It’s important to make it clear upfront that people depend on you, and that this might make it harder when it comes to treatment.
Sometimes the hospital wanted to keep me in overnight, and I said it wasn’t possible. They resisted, but now I have it in my care plan that it’s a serious issue, and carers will come in and help my family if I need to stay overnight.
Sometimes, your situation might not be treated holistically, and they won’t consider what else may be going on in your life – there could be so much more done here. But, if you make it clear and keep asking, then there is often extra support available.
Navigating the system
Treatment can be overwhelming and difficult at the best of times, and it can be even harder if you have additional needs.
I’d urge you to ask questions and make sure you have a voice.
Particularly through the early days of my cancer diagnosis, I feel like I experienced quite a lot of discrimination. It’s tough to know what has been the biggest barrier – whether it’s because I am a disabled person, carer, Muslim, woman, or “all of the above”. I also wouldn’t stand for things, so I think I became known as a “colourful woman”, or someone who would make trouble, which led to me being treated differently.
I don’t know if it was because English is my second language, but I felt that I wasn’t always listened to and that I was put on a treatment pathway without being involved in the conversation. I don’t regret it, and I think they were right – but I’d urge you to ask questions and make sure you have a voice.
My Radiotherapy Teams and Cancer Nurse were brilliant, and they linked me up to lots of other support. I’ve learnt not to settle – it’s important to keep looking for different resources that are out there, as it might surprise you. My radiotherapy nurse linked me up with free taxis to hospital, and Macmillan gave me a grant which helped me with my bills.
Talking to others who’ve been through it
I’ve recommended that you ask for help, but it hasn’t always been easy for me. I’ve often isolated myself, partly because of hate crimes that occurred before I had cancer, and I’ve felt cut off because of my religion and my disability. There’s also a lot of stigma in the BAME community, which can lead to people sharing less.
If you can’t find something that feels right, you might be able to start your own with some help.
I can see why you might not want to reach out, but it can be so helpful. I’ve set up a peer group for other people with disabilities, and we support each other. It’s about sharing information and stories – to help people feel more in control and prepared, and to feel less alone.
I’ve helped people in my group to apply for extra support – from personal independence payments, to social care. I work with lots of women who have English as a second language, and they struggle without someone to represent them. It’s satisfying to be making a difference. I’d recommend looking for peer support that is relevant to you in your local area. If you can’t find something that feels right, you might be able to start your own with some help.
I hope that you have found this blog helpful, and I wish you all the best as you navigate this time.
Thank you for reading.
