Personal tragedy In 2016, my life changed forever.
My mum was 55 and had fibromyalgia. In February 2016, she was admitted to hospital with a suspected pulmonary embolism, however, they did not find anything and she was given a fibromyalgia-related diagnosis.
In April 2016, she deteriorated rapidly, which continued for six weeks before her doctor finally referred her for an ultrasound scan. She then had a CT scan and was diagnosed with bowel and secondary liver cancer with an estimated life expectancy of months, perhaps a year. Two weeks later, she died.
My grief presented itself as anger. I have heard similar instances where fibromyalgia has been the fallback diagnosis, and I want to change this for others with fibromyalgia.
That said, the care my mum received from the Macmillan nurses and the hospice staff was incredible and I will always remember them. They allowed me to help provide end-of-life care for my mum, and as devastating and as life-changing as it was, it was an honour to be part of the last few moments of someone’s life, especially my mum’s.
Little did I know that I would be doing the same for my 59-year-old dad the following year, who was diagnosed with stomach cancer, and for my grandmother the following year. I helped nurse each of them in their final weeks.
My 80-year-old stepdad was devastated after my mum’s death, he had vascular dementia. Every day I would visit him, cook for him, take him shopping and keep him company.
After a while he decided to move closer to me. He managed there for a short time but when his condition deteriorated, he moved in with me and my family where I cared for him. This was tough. I was running my business from home, I had a four-year-old and two older girls, but I was determined I was going to do this, for him and my mum.
He became very poorly and was admitted to hospital, it was there that the decision was made to rehome him in a dementia specialist home. I visited every day, again keeping him company, playing games to keep his mind active, walking in the garden and just spending quality time together. After 18 months of living in the nursing home, he passed away in 2019 with me by his side.