It is official. I am much improved. The lack of 5FU in my last cocktail has definitely seem more spring in my step, more boing in my bounce, more spark in my plugs. I have been suspecting things were a bit better for a couple of days but today it sort of burst out of me. You see, I came over all militant. That in itself is not unusual. But today I have taken action! Number of MPs written to? One. Number of hospital Chief Execs? Two.
I have been driven from soapboxing to taking action by the Secondary, Not Second Rate Campaign run by Breast Cancer Care. They published a report in July having surveyed nearly 1000 people and having it read it, two things struck me today. First, 58% of those like me, diagnosed with primary breast cancer, did not know what signs and symptoms could indicate Secondary Breast Cancer, 20% thought they did but were actually wrong and only 22% knew what to look for. This is truly shocking. But given that 60% of hospitals are not discussing this possibility with their Primary Breast Cancer patients it is not surprising. But it is easily remedied. A final conversation with the Breast Care Nurses at the end of treatment, with clear information and points of access laid out for further treatment, would be all that was required.
Of course, to plan for future treatments, it is necessary to know the scale of the problem and therein lies the real issue. Since 2013 it has been mandatory for hospitals to record data on Secondary Breast Cancer. They have to record the numbers diagnosed and whether they previously had Primary Breast Cancer or not. But the vast majority of hospitals in England are not doing this. Breast Cancer Care are now naming and shaming the hospitals they know of so do look up your local: https://www.breastcancercare.org.uk/secondary (2/3rds of the way down the page). This information is crucial. After all, how can you plan for a service if you do not know how many users there will be? How can you assess the efficacy of a treatment if you do not know how many go on to develop further problems? Of course you can not. What happens is that disaster ensues. And that is how the state of Secondary Breast Cancer care is at the moment. And it is unacceptable. This report made me angry. Very angry. It made me sign up to volunteer for the Secondary Not Second Rate campaign. It made me want to educate all I know on what signs of Secondary Breast Cancer to look out for. It made me bang on to a lot of my friends about the injustice of the situation.
But what really tipped me over the edge, what really made me incandescent, was this little film. Take a look and let’s see if the same statistic gets you:
We are about to hit Breast Cancer Awareness month. Pink is going to consume us. I hate the pinkification of breast cancer. I have said it before. I will no doubt say it again. But I can almost (only almost) cope with its retinal burning luminosity by consoling myself with the thought that money will be raised. Somewhat naively, I assumed that all breast cancers gets an equal share of this. Didn’t you? They do not. The tsunami of pink that engulfs us is almost entirely taken up with money for primary breast cancer. Less than 5% goes towards Secondary Breast Cancer. Less than 5%.
It was this that kicked me into action. I cannot standby and allow this situation to go unchallenged.