Me and myeloma: Minreet’s story

Our ‘Me and myeloma’ stories are a series of stories from the myeloma community.

I am 43, a freelance journalist and the daughter of ‘The Skipping Sikh’. I also do henna in my spare time. I love running, swimming and hiking. I like going to the cinema, travelling when I can and I have a good, close-knit group of friends who are supportive and a joy to be around.

What is your connection to myeloma?

My mum Pritpal was diagnosed with myeloma in September 2023. She was 72. She had done the London Marathon in April but she had to stop after 17 miles because she couldn’t run anymore. Until then, she’d always been a really fit woman. She’d never really had anything before. But she started getting tightness in her chest and pain in her ribs. She couldn’t take a full breath. She was given medication for angina, but the breathlessness didn’t go away and she started getting bad side effects from it, feeling quite nauseous. She was getting cramps all down her body. I started thinking, ‘What is going on?’. She was feeling very tired and sleeping a lot. She had lower back pain.

For months she kept getting fobbed off by doctors. One day we came out of the gym and she couldn’t move the next day. I took her to A&E. She was diagnosed at the five-month mark and I don’t believe she would have got diagnosed in September if I hadn’t pushed. The doctor said it was just old age and that she was doing too much exercise.

It was hard for me, even before the treatment started. And then especially during the first two months of treatment. I struggled to manage everything because it was all on me. It was just me and my dad at home and he didn’t fully understand it. He’s from a generation and a community that is oblivious to these things and I had to really educate him. I told him we had to help my mum, be patient with her and help her to stay positive.

Working as a journalist and doing 10-hour shifts, it’s been tough managing something like this. Just understanding myeloma and digesting everything took a long time.

At least I was there to look after my mum and a lot of people don’t even have that.

What helps you get the support you need?

To be honest, it’s been hard. Myeloma isn’t really spoken about in the Asian community. Until mum was diagnosed, I didn’t know anyone who had it. I still don’t have anybody in the Asian community that I could go to because nobody talks about it. It’s really worrying that this community is so silent about myeloma. I’ve realised that when we told people my mum had it, some of them stopped hugging her. Some people didn’t want to talk to her much, so that’s why I want to raise awareness. It’s not out there enough.

If talking about it can just help one person get diagnosed and the support they need, that’s what we want. My mum and I feel it’s our duty to raise awareness. We don’t want people to feel alone like we did. Also, some people don’t have anyone to advocate for them and I did this for my mum, but there needs to be more awareness on symptoms.

Do you have any advice for someone who is caring for someone with myeloma?

I had to keep pushing to get my mum what she needed. My advice, especially to people in my community, would be: don’t just think, ‘It’s nothing’. Because my mom was thinking exactly that. She was one of those people in the Asian community who don’t want to go to the GP.

Another thing is, don’t be afraid to ask for a second opinion. You get one set of parents. In our case, they’d given my mum a lot of medication and I ended up getting a second opinion, which is something I would recommend. Do your research, be on top of things yourself and ask questions. If something isn’t right, get it checked and don’t leave it.

Close-up photograph of a hand holding a mobile phone.

Stay in touch

We’d love to stay in touch. Join our mailing list to receive updates from Myeloma UK including our monthly newsletter and updates about our services, research, campaigns and other ways you can get involved.