Back in June last year, after months of visits to the doctor, the emergency room, lost weight, increasing fatigue and lethargy and the prospect of an undefined number of months on a waiting list for a state funded test, we took control of the issue and paid for a private colonoscopy. It wasn’t so expensive as these things go, 1000€, but it isn’t an amount of money we just have lying around either, so once my cancer was found I put in a claim to the state to refund the cost. I never actually thought they would refund the money, I am sure they have lawyers making sure they don’t do anything that could in the slightest way be construed as accepting liability but the way I see it, I am not suing them for distress or pain or whatever but that is a test they should have paid for and even though they totally let me down they could at least foot the bill. I actually saved them money and it makes me fucking crazy.
Fast forward 8 months and I finally get a reply. The gist being ‘it was your choice to go private, you were not in urgent ie life-threatening need so you should have waited’.
Feb 2015 complain of blood in stool and various other IBS (or colon cancer) symptoms. ‘Don’t forget my aunt died of colon cancer in her 50s’
Blah blah repeat visits to doc and ER etc etc fatigue, weight loss until we get to
June 2015 diagnosis stage III colorectal cancer (result of private colonoscopy/biopsy)
Blah blah chemotherapy, radiotherapy, surgery, ileostomy and Then THEN
February 2016 ONE YEAR after my doctor filed a request for a colonoscopy ‘priority: NORMAL’ because there is allegedly NO ‘URGENT’ category for colonoscopies (!) while I was receiving my first post surgery dose of chemo, I was called to be offered, not an appointment for a colonoscopy but an appointment with a digestive specialist.
Is it me? IS IT ME? what part of 7 CM stage III COLORECTAL CANCER (with nodes affected) is not urgent? What would it have been if I had left it another 8,9,10 months? What if I couldn’t have paid for the test? What about all the other people that can’t? How fucking dare they? Tell me it was okay that I had to pay for it myself and not even have the grace to refund me my money but on top of it all tell me my situation wasn’t urgent?!
I am so mad.
I am SO MAD.
I don’t care about the fucking money. If they had said we are legally bound to only meet x percent of costs or pay 50€ or whatever it would have been better than telling me what happened to me wasn’t important. Because that is what it feels like.
I can appeal. My initial reaction is to keep annoying them, be a little thorn in their side, so I will ask my doctors to write letters detailing my case. But I know it doesn’t matter. I know they can’t say it was more urgent. I wasn’t dying at that moment. Yet. I was. I was dying. If it hadn’t been found I might have died. But that doesn’t count.
On the one I want to highlight the issue, fight for myself and others who can’t fight for themselves or need help even before they know they need it. Like so many of the warrior campaigners on here and in the wider blogosphere. Shout on facebook, contact newspapers. Tell them people are dying because doctors can’t request urgent testing.
And the other part just wants it to all go away. I don’t want to fight. I want to live my life. My real life. My nothing to do with cancer life. I don’t want to be consumes with sadness and anger and bitterness which is what I feel when I read letters that tell me what happened wasn’t life threatening. Cos my life felt pretty fucking threatened when I barely had the energy to move from sofa to bed to sofa to bed. When I couldn’t pick up my 5 year old. When I couldn’t handle being around the energetic afterschool chatter of my kids. When I could only drink water lukewarm or my face twitched and spasmed in the cold because of the side effects of the chemo.
I feel like I should shout and scream and point at them and tell everyone I can but I also don’t. It makes me feel impotent, weak, unimportant. Like what I went through didn’t matter. But it mattered to me, to those I love and who love me. It mattered a LOT.