Last month Eleanor, who has incurable, secondary breast cancer, addressed MPs in Westminster about providing better care for people living with the disease. She explains why you should pledge your support for our Secondary. Not Second Rate. campaign.
I am a daughter, wife, mother and grandmother
My name is Eleanor Meade. My life is filled with many exciting things. I was managing director of a fostering agency, I have flown helicopters solo, represented Breast Cancer Care at the Labour Party Conference, and spoken to MPs in Westminster. I am a daughter, wife, mother, granny, and a pretty mean trumpet player!
I also have secondary breast cancer.
I was told it would never spread
Every woman in my family for two generations has had breast cancer, so I was very aware of the signs and symptoms. In 2001, I was diagnosed at pretty well the earliest possible stage with primary breast cancer.
After treatment, my doctor was so positive he said it was as if I had ‘never had breast cancer’. He said it couldn’t spread because a wide enough margin had been removed. I was hugely relieved, and tried to put the whole experience behind me.
No one recognised my symptoms
About four years later I began to complain of central chest pain, radiating out towards my right shoulder. I told my oncologist about this – not once, or twice but at every four-monthly appointment for 18 months.
Eventually, he agreed to a scan. He told me, ‘It will be fine. I’ll eat my hat if anything shows up.’
The scan revealed secondaries in my sternum, ribs, spine and central lymph nodes. He didn’t say much else; perhaps his mouth was full of hat!
So many people are misdiagnosed
This is by no means an unusual occurrence. At my secondary support group, six out of 11 of us had been misdiagnosed, treated for different conditions or had not been listened to before our secondary diagnosis.
Although breast cancer is an extremely complicated disease, the signs and symptoms of secondary breast cancer are relatively straightforward, although they can be vague.
Despite this, the vast majority of women with primary breast cancer don’t know what to look for, and sadly many don’t want to know because they are too frightened. It goes without saying that healthcare professionals should be able to recognise these symptoms.
Lives are being cut short due to funding
My future looked even more doubtful when I was told that my local hospital couldn’t provide the recommended drug due to funding issues. I was fortunate enough to be able to transfer my care to a specialist hospital who could prescribe it – I don’t know how.
Since then my cancer has responded well, and with each progression there has been a different drug available. When the cancer progressed last time, my oncologist managed to get me onto a brand new drug funded by the Cancer Drugs Fund.
But for many patients this is not an option, and lives are shortened due to lack of money.
What’s important is how we live life
For years I was unable to plan ahead – when a new bank card arrived I would look at the expiry date and wonder which of us would expire first.
Something that has made it possible for me to endure living with this disease is the support group that I have attended for three years, one of nearly 30 such groups run by Breast Cancer Care across the country.
Meeting others who are in the same boat and being able to talk about stuff – boring, relentless, everyday stuff – is invaluable. These women just get it, and emotionally it has saved my life.
It shouldn’t be a luxury to have a specialist nurse
Throughout my treatment I’ve had access to a clinical nurse specialist (CNS). Someone who is trained to support and care for people like me. Who understands the uncertainty of our prognosis, the ups and downs of treatment, the many different and often ghastly side effects, the issues we encounter with our altered relationships and the strong feelings faced by loved ones.
A general breast care nurse cannot provide this care. We need specialist nurses, who only deal with secondary patients whose treatment will never end, and who will look after us until we are handed over to the palliative care team to help us die with dignity.
And yet the majority of us don’t have this… I was going to say luxury, but it shouldn’t be a luxury. It’s a necessity.
Why is there such poor care?
Most women with secondary breast cancer have to cope without such necessities as a prompt diagnosis, a dedicated CNS, and timely access to drugs because no one actually knows how many of us there are.
It’s estimated that currently there are anywhere between 30,000 and 36,000 of us living with the disease, according to different sources. Although it has been mandatory since January 2013 for hospitals to collect this data, less than one-third do so. This is appalling.
It means that commissioners and health care providers are unable to identify their local population’s needs or plan services effectively. To all intents and purposes, we are invisible.
Campaign with me to demand better care
Breast Cancer Care’s Secondary. Not Second Rate. campaign is asking the government to take action on these vital points:
- to ensure hospitals collect data on how many people are living with secondary breast cancer
- to provide a specialist secondary CNS for every patient
- to listen to people like me, living with the disease
Pledge your support for our manifesto today.