I’d love to publish the text messages that Daloni and I have exchanged over the past 5 years, but I can’t- far too much swearing. The utter shit (oops, there I go) of a cancer diagnosis and what it can deliver, and then, when it does its worst, trumping itself and delivering something even more horrible.
Daloni was in active treatment for 28 months over the three years after her diagnosis: surgery, chemotherapy, radiotherapy, brachytherapy, SABR, biological therapy and then more chemo, a clinical trial which was chemo plus immunotherapy and then another clinical trial of immunotherapy. As Daloni said – she wouldn’t have wished that catalogue of treatment on her worst enemy.
With Daloni, her rareness of her specific diagnosis was a quite a thing. The gift that just kept on giving– not in a good way. Indeed, a gift that kept on taking.
Diagnosed with womb cancer in 2014, the fourth most common cancer in women and one that very few have heard of, including super informed, incredibly bright, science graduate and health journalist Daloni. She had never heard much, or indeed anything, of womb cancer until the day she was diagnosed. It certainly wasn’t something she thought was on the cards when she was referred to a gynaecologist. A fibroid was far more likely.
Daloni had been experiencing abnormal bleeding and she talked to her GP straightaway. The advice: wait until it stops and come back and see us. Well it didn’t and so she didn’t – well not fast enough as it transpired.
While I was preparing for my interview for The Eve Appeal, I read a piece by Daloni that she wrote about her diagnosis, awareness of womb cancer and where research was focused on this disease. It’s fair to say that it made me rage and plotted my course: these cancers were far too little known, surrounded in embarrassment, underfunded and things needed to change. We needed to do better for women in gynae health care.
Daloni was a brilliant advocate and campaigner. She contributed to research programme development, to clinical trial design, to patient support and information programmes and raised awareness through talking at events, where she quite literally moved the room.
Her first event for Eve was a pretty glitzy art auction at Claridge’s. She was rocking her post chemo Sinead O’Connor hair do at that point and a bright red satin dress. Her opening sentence was about abnormal vaginal bleeding. I’m not sure that’s what the well-spoken, art deco room was quite expecting.
When she spoke at a research event some months later it was to launch the 4C programme. She had mentioned this in her first Guardian piece – our research ambition to create a risk prediction test for the four main women’s cancers (4C – four cancers, one test) so that women could take action and cancer could be stopped before it develops. Quite an ambition and one that The Eve Appeal is fully committed to realising.
At this point, Daloni was sporting what she described as her ‘Leo Sayer look’ – the hair was growing out and was pretty wild and curling. She’d also found out that she carried a BRCA gene mutation. Receiving this news when you have sisters, nieces and in Daloni’s case, two gorgeous daughters (Sofia and Monika) is never easy. A massive cancer brick was lobbed into the calm Carlisle family pool and the ripples turned into waves.
Daloni made me hoot with laughter on so many occasions – she supported me. She really did make me see what living with cancer (and an incurable diagnosis) meant. And indeed, it did meant LIVING.
She thought our mission at Eve noble and spot on in terms of prevention and busting the stigma, I thought her approach and very being was the very best of humankind: empathetic, ever questioning, not one to take no for an answer (she was supported by some warrior women clinicians and researchers – Dr Kristeleit and Prof Emma Crosbie, you know who you are). She was given genetic testing (when not strictly eligible) and put into research trials (when she didn’t quite fit the criteria), and honestly, she had the sharpest bullshit detector in the business. And believe me, there’s a lot of bullshit to contend with when it comes to cancer. There I go again, swearing.
I’m going to end with Daloni’s advice to women – she said this right from the off and the simplicity of it jumped out at me from that very first article about her diagnosis: Unusual bleeding – it probably isn’t cancer, but it might be. Best get it checked out.
Daloni Carlisle (died, 22nd September 2020, 56 years young), loved and missed. A true womb warrior.
If you are worried about any abnormal bleeding you are having, or if you or a loved one has been diagnosed with womb cancer, our Ask Eve nurse-service is here for you. You can call or email Ask Eve on email@example.com or 0808 802 0019, for free and confidential advice and information.
Daloni’s work with The Eve Appeal: