A friend a few weeks ago recently joined the statistic of 31 women that die every day of metastatic breast cancer, and we just hear the same words and comments.
“She was brave and inspirational; she gained her wings, and she lost her battle/ lost her fight.”
There is no battle to win or lose, this just seems to put blame on the patient who died of this awful disease.
We blame patients for the disease that they have no control over. No one seems to know what to say, so I wanted to think about reframing this language – reframing metastatic breast cancer.
We have primary patients who ring the cancer bell, little do they know or are told that with this disease there is an approximate 30% chance of it returning and that can be up to 20+ years later. If they really knew and understood this, would they still feel as comfortable ringing the bell? A bell which is loud and brash and doesn’t consider the feelings of patients sat in treatment with incurable metastatic (secondary) breast cancer! (any metastatic cancer). I wrote a piece about this for the BMJ a few years ago and was interviewed by Philip Schofield and Holly Willoughby, and Philip – who comes from my hometown of Oldham – even had the nerve to say to me “do you feel bitter?” because I wrote the piece about the bell. Unbelievable lack of understanding and empathy to a patient living with incurable cancer. I certainly don’t feel bitter, I have clapped and applauded those who ring the bell but always with the thought that they have a lack of understanding about doing this. And this practice is also taking nurses and staff away from their role – they are busy and run off their feet, aren’t they?
I was even told by a man on Twitter/X, who obviously took a dislike to my comments, that I should go and have treatment at a hospice and not at the cancer hospital where everyone was treated. So, basically, go away and die somewhere else as I’m not welcome in the “normal” hospital setting. He didn’t see how the nurses on my cancer ward ALSO didn’t like patients ringing the bell and found it intrusive.
Metastatic (secondary) breast cancer day is just one day on the 13th of October (unlucky) that focuses on MBC. The only day where we reflect and think about all those 11500 people that die every year from this horrendous disease. There is little focus from any other charities with our aims and objectives. We have taken back October over the last few years of being a charity, and made it into a whole month about MBC but it does get swallowed up by the pinkness of primary cancer. Our biggest breast cancer charity focuses very much on pink and dressing up and having fun with a tutu on. Well, that’s great for all those that are “over” breast cancer. And I’m very happy for the 70% who will be “cured”. But, remember, there is no test to say who is cured or not, when we talk about the 70% who will be cured and “survive” and not get MBC. That’s the issue patients are dealing with, and this then leads onto FCR – Fear of Cancer Return and why patients have this fear – it’s real and I totally get it. I was there and had those thoughts in my head before I was re-diagnosed. We ALL have the FEAR.
We at METUPUK look at the 4 areas to try to focus on what we can do to advocate for ourselves and our friends living with MBC: Awareness, Access to Drugs, Access to Clinical Trials and Data.
But, going back the initial reason why I wrote this blog, we did not win or lose any battle. It wasn’t that we didn’t try hard enough to live or NOT fight hard enough.
The reality is that the drugs failed the patient. That’s the whole problem, it’s not we lost any battle or fight, simply put, research and pharma haven’t come up with the right drug or drugs yet which can keep this disease from progression and killing us. Basically the drugs don’t work. And, currently, the drug appraisal systems we have in place, and in particular the NICE severity modifier, are not fit for purpose. They fail us and stop us from accessing the drugs that could give us months and sometimes potentially longer to live.
31 women die every single day of metastatic breast cancer.
We just never get the urgent focus on us that we need.
We don’t lose the battle or fight.
The drugs simply don’t work and fail us all.
We need better.
We demand change.
Who really cares?
Jo Taylor
Jo Taylor: It’s time to call time on “The end of treatment bell” – The BMJ