Disappointed and confused by the system
I should start by saying I am almost 73 and have had a lifetime of excellent health (apart from hysterectomy a couple of years ago) and never expected to be dealing with this. Mammograms stopped a few...
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Neither accepting or grateful,in my case. Yes, I recognise that living where I do gives me a greater chance of survival than pretty much anywhere in the world. But we do pay for it, one way or another.
I've just finished treatment for a recurrence, I first went into the BC mincer in 2006 aged 43. I'm smart, have some medical background and worked as a professional know it all for years. I'm also not shy and have had my arse hauled for being 'disrespectful' on more occasions than I could count. Usually that happens when I challenge someone who thinks their rank or profession puts them above scrutiny or criticism.
I am still battling to get a handle on where I go next or how to manage the almost inevitable return of my disease. This last treatment saw me coordinating 4 different medical services who usually don't work together. Experience had made me bloody minded and I refused to follow the usual train of referrals
It is bloody exhausting. I know how to make sure all my results get to all the people who may need to know. I've figured out how to email anyone in any health service once I know their name. I've made formal complaints about shitty practice on two occasions where if I hadn't made a fuss I could quite possibly have died from surgical complications. I know that a referal is just that, and you can get another one for someone else. I also understand that the people involved are busy and that the cancer industry attracts personality types who are not always user friendly. I take notes and photos. Of everything. I get everyone's name and document what they say to me and when. I've been accused of being adversarial. There are red dots inside most of my files.
What I don't understand is why I have to be such a bitch in order to get the care I need. Yes, the squeaking wheel gets oil, but, seriously?
Follow your heart and approach your disease the way you would any major event in your life. If you are an information junky, chase it down. If you prefer someone else to run the show, let them.
Good luck. Marg xxx
I've just finished treatment for a recurrence, I first went into the BC mincer in 2006 aged 43. I'm smart, have some medical background and worked as a professional know it all for years. I'm also not shy and have had my arse hauled for being 'disrespectful' on more occasions than I could count. Usually that happens when I challenge someone who thinks their rank or profession puts them above scrutiny or criticism.
I am still battling to get a handle on where I go next or how to manage the almost inevitable return of my disease. This last treatment saw me coordinating 4 different medical services who usually don't work together. Experience had made me bloody minded and I refused to follow the usual train of referrals
It is bloody exhausting. I know how to make sure all my results get to all the people who may need to know. I've figured out how to email anyone in any health service once I know their name. I've made formal complaints about shitty practice on two occasions where if I hadn't made a fuss I could quite possibly have died from surgical complications. I know that a referal is just that, and you can get another one for someone else. I also understand that the people involved are busy and that the cancer industry attracts personality types who are not always user friendly. I take notes and photos. Of everything. I get everyone's name and document what they say to me and when. I've been accused of being adversarial. There are red dots inside most of my files.
What I don't understand is why I have to be such a bitch in order to get the care I need. Yes, the squeaking wheel gets oil, but, seriously?
Follow your heart and approach your disease the way you would any major event in your life. If you are an information junky, chase it down. If you prefer someone else to run the show, let them.
Good luck. Marg xxx