Last September, I became a carer to my 73-year-old mum who was diagnosed with myeloma, a rare and incurable blood cancer. In the months before, she had been suffering from bone pain, fatigue, and finding it hard to breathe. Initially, she was misdiagnosed by a doctor at our local hospital with angina. But we knew this wasn’t right as the medication made my mum feel worse and she nearly fainted after getting pain on her left side whilst at work at the time.
I escalated this to PALs (a complaints process) to finally get the right diagnosis, and five months later they found out it was myeloma, through a specific blood test which showed high paraprotein levels, but a lot of bone damage had been done by then. I remember waiting with my mum in the haematology department and being called in by the doctor to hear: ‘It’s blood cancer’. I nearly fainted and my mum just cried. It broke us. I’d never seen my mum cry before.
My mum’s diagnosis changed our lives completely. My mum was signed off on sick leave and I had to give up my job as a journalist, something I’d only recently plucked up the courage to switch careers to a couple of years prior. Using savings from my previous full-time employment to get by, I had to take on all the responsibility at home – my mum’s appointments, cooking, cleaning, shopping, helping her around the house as she was too weak on her own, and everything else that comes with being a full-time carer – while dealing with the emotional turmoil of watching my beloved mum deteriorate. I had to watch out for any side effects from the chemo medication, lenalidomide, and the injections she has at the hospital like a high temperature and sickness, and we’ve spent many days back and forth to A&E.
My mum was always a very fit woman; she would run, walk, swim and lift weights in the gym. She would go into schools to teach children to hula hoop. She got me into fitness. We did the London Marathon just five months before her diagnosis. She was fiercely independent, working as a sales assistant in Harrods for 20 years. Suddenly, as if overnight, the roles reversed and I became her carer. Luckily, I already lived at home with mum, but we have very little support from family and friends. I also couldn’t afford any caring support from local organisations. It was a huge shock to my system.
Courtesy of Minreet Kaur