I wrote the following post after attending a conference in 2015. Today, three years later, as we face numerous serious challenges to our rights as women, I thought to share it again. It is a travesty that we should have to fight so fiercely for our health care, but we do. Don’t give up, you deserve quality cancer care.
“It’s just that if you’re not disruptive everything seems to be repeated endlessly – not so much the good things but the bland things – the ordinary things – the weaker things get repeated – the stronger things get suppressed and held down and hidden.” Robert Adamson
Last week I attended the International Psycho-Oncology/American Psycho-social Oncology World Conference in Washington, DC. Nearly one thousand people from around the world came together to discuss the issues of implementing quality psycho-social care for those diagnosed with cancer. While these are not new concerns, the need to pay attention to the necessity of implementing services and coordinating resources is growing as more people are diagnosed. The good news is that people are now surviving what in the past would have been considered a death sentence. This means that quality care in post-treatment is more essential than ever.
The American medical system struggles with the costs of delivering services that are meaningful to those with cancer and their communities. All too often we throw up our hands and give up pushing for change – using the excuse of finances, people being too busy, not enough providers and so on. We feel disempowered by an enormous bureaucratic system. It’s tempting to fall into resignation, feeling like the possibility of self advocacy is too elusive and that we are powerless to bring about change. Meaningful momentum can sputter and die. It’s easy to become complacent with “good enough” groups or services that are cookie cutter and designed to prove that a cancer care program has services available. By accepting the “bland things – the ordinary things” — “the weaker things get repeated –“.
As I listened to the usual problems being brought out … again and again … it all seemed familiar. I’ve heard this for years and, I admit, have sat through the same dialogues time and time again, complaining and moaning, feeling frustrated. But at this conference I began to hear the voices of those who aren’t bowing down to accept the current situation. I perked up as I was confronted by the words of others who are taking action and asking that we all do the same. “ A call to arms” for creating meaningful impact was sounded!
Here are some suggestions to help all of us take the actions needed to advocate for quality psycho-social cancer care.
Be disruptive! Voice your opinions and be willing to create a ruckus for change.
Promote self-advocacy ! Cancer patients, their partners and families, can feel intimidated by requesting what they need. Keep in mind that this is your life. Insist to be taken seriously and respected.
Take risks! Be willing to stand up and be heard.
Collaborate with others! Form groups – strength in numbers. This applies to consumers of the health care system as well as the providers. We’re all in this together and it’s time we stood by one another in strong, supportive ways.
Personal connections! Strive to make strong personal connections – it helps us all to negotiate an impersonal system and feel less alone and crazy.
“Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has.” Margaret Mead
Darlene M Zwetsch | 08th October 2018 at 12:00 am
I want to scream so loud but feel as though TNBC for some odd reason isn’t easy enough for them to target so they continue to say oh you are in the small percentage that gets TNBC. Bullshit! There are more and more and I want to know why and why aren’t they trying to target it like other breast cancers. Why are other treatment options used when it is stage 3 or 4 why cant stage 1 and 2 try the less invasive protocol? The care in Florida is absolutely horrible and you would think they would be on top of it with so many retired people but maybe older people don’t matter. I have no idea where I need to be to feel like they medical profession truly cares. This disease in so lonely and makes feel like they are not worth anything anymore.