‘Raising awareness of the dangers of fibroids – Rachael’s story’

“My beautiful, brave wife Rachael, was only 45 when she passed away last year. She was much too young to be taken from us and I’m determined to do all I can to make sure others don’t have to suffer in the same way as we have.

“Rachael had always suffered with urine infections and heavy periods, which made her anaemic, so had to have regular visits to the GP.  Back in 2018, a scan showed that she had a fibroid. We weren’t too concerned as we were told that they were very common, benign growths. In fact, the decision over whether to have a coil fitted or the fibroid trimmed was even left to her to decide, so there was nothing to suggest how serious this was.

“Rachael was put on a waiting list for the gynaecological procedure, but by this point, the fibroid was growing fast. Even with this, Rachael was losing a lot of weight and the heavy bleeding meant that her iron levels were extremely low and she was confined to the house for much of the time.

“By September 2018, we were getting really worried as she had gone down from a healthy 9 stone 3 to just 7 stone in less than three months.

“At this stage, we still had no idea that she had cancer or that the growth was life threatening in any way. She was put on the list for a hysterectomy but by now, Rachael looked like she was 4-5 months pregnant as the fibroid was getting enormous. Looking back, I ask myself why we didn’t consider getting private hospital treatment but we just thought it was a matter of waiting as once the surgery was done, we assumed that Rachael would just be able to get on with her life. We just had no idea how serious it was. If the word cancer had been mentioned at that stage, we wouldn’t have hesitated to pay privately for the fibroid to be removed.

“Over the next two months, Rachael had to be admitted to hospital several times to have blood transfusions and to be treated for sepsis, yet still nothing was done about the large mass fibroid.

“She got rushed to hospital in November and eventually action had to be taken as Rachael’s weight was now a frightening 6 stone. I remember her crying to me the day before her operation, worried that she wouldn’t make it through because of how weak and frail she had become.

“When she had her hysterectomy on November 19^th 2018, we were all so relieved she was getting the growth taken out, but we had no idea what was to come. She was due to have a full hysterectomy but as the weight of the fibroid was a staggering 5lb by this point, they could only do a partial hysterectomy as the procedure was too complicated. If only this had been done sooner.

“We were called back in to hospital a week before Christmas to be told the devastating news the fibroid was actually a cancerous tumour. Thankfully – or so we thought – the surgeon was confident that he had taken all the cancer away so we were sent home, were appointed a Macmillan nurse and told that a scan would be done in 3 months to see if it was all OK. Rachael was told she would need no further treatment until then.

“After that came the worst possible news. The cancer had spread to her spine and was diagnosed as leiomyosarcoma, a stage 4 aggressive cancer. We were absolutely devastated. Rach battled hard and had lots of treatment but unfortunately, the cancer beat her and she passed away on August 12^th 2019, aged just 45.

“My world fell to pieces that day. She was much too young to be taken from us and this should never have been allowed to happen.

“Since losing her, I have been focussing my grief into starting an awareness campaign to make sure that women who have fibroids are treated with a much higher level of care. Yes, it’s true that most fibroids are benign but as Rachael’s story shows, some can turn cancerous, a fact of which we were completely unaware. And even if the fibroid is not cancerous, why should women be left so long before being treated, confined to their homes, like Rachael was for so many months?

“I will keep campaigning to ensure the treatment of fibroids is prioritised. Apparently, around one third of women are affected by fibroids at some point in their lives and for many, they can mean a living hell, both physically and mentally, not to mention the damage that can be done if they do turn out to be cancerous.

“Things must change and I hope that by sharing our story, it will encourage other women to ask questions of their gynaecologist or consultant and push for faster treatment. So many women have thanked me for making them aware of the dangers.

“If I could have our time again and if I knew then what I know now about fibroids and cancer, I would have made sure she had private treatment to have it removed earlier. If you can’t afford to pay for private treatment, you can do a fund raiser with friends and family. Whichever path you choose, just please, please demand a biopsy to make sure the fibroid is actually benign.

“If I can manage to save just one person’s life by telling Rachael’s story and raising awareness, that will be amazing.”