Thursday, April 30, 2009

The mammogram chronicles - part 7: It can happen to anyone

I’m feeling quite distressed today. I just found out that my oldest sister has breast cancer. It was discovered during a routine mammogram so it came as a shock to her.

The “good” news is that they caught it early; so there are treatment options besides a mastectomy.

Suddenly my fight to get a mammogram has taken on new urgency.

I’m very sad today.

Sunday, April 26, 2009

Mid-week Bangladesh

My daughter returned from Bangladesh this morning.

A couple days ago, I texted her with two questions.

1) Was she tired of Bangladesh or would she stay longer if she could?
“Both. I’ve been sick most of the week [with a cold] and I’m sick of the food and the ants everywhere, but otherwise I want to stay – I’m totally in love with Bangladesh.”

2) What would she like for dinner when she returned?
“Like tacos, waffles, HARDCORE kebab – as long as it doesn’t contain rice, weird vegetables, fish, chicken or goat. And ice cream for dessert!”

We had told her that ice cream, if she saw it, was strictly off limits unless it was industrially manufactured. But she told me this morning that during the last 24 hours she has developed an “upset stomach.” So I guess that precaution didn’t help much. An "upset stomach" is just part of the “experience” to places like these!

(Yes, she had all the necessary shots/vaccinations before she left. She has been on my mind all week. I'm glad she is home.)

Monday, April 20, 2009

"We're having a blast!"

A few months ago, my 14-year old daughter and her classmate told us they wanted to go to Bangladesh. Their school is part of a project (Teachers Without Borders) that builds and supports schools in rural Bangladesh. I was little skeptical but said okay, especially since they needed to raise about SEK 25,000 – mostly for airfare – and I had my doubts they would be able to do it. But through some money-raising projects and grants from companies and the Swedish church, they succeeded. They left Friday evening with a teacher from their school and the teacher’s 18-year old daughter.

Before my daughter left, I talked a lot about what to expect, even though I’ve never been in that part of the world. We mainly talked about cultural differences, extreme poverty, and heart-wrenching things they might see or experience. (Her younger sister has been worried that she will come back "changed.") I didn’t want to sound too negative so I also told her about a news story I’d seen (or read) recently about someone who had explored a slum in one of India’s large cities (I forgot which one) and reported that, despite everything, things “work” and people survive. Everyone has a place, and there is a vibrant sub-culture that thrives. (No, I have not seen Slum Dog Millionaire.) Of course things should be better, but for the people who live there it’s home, and at that level at least should be respected. Or so was my open-minded, liberal lesson to my daughter before she left. Of course there is a difference between rural Bangladesh and a city slum in India. But I imagined the impact of the experience would be just as overwhelming and profound.

So imagine my surprise when I got a text message yesterday that said “We’re having a blast!” Not exactly the reaction I would have expected after a couple days in one of the poorest, most crowded countries on earth. I’m completely blown away. The exuberance and resilience of youth should never by underestimated, especially by "worldly" parents.

Saturday, April 11, 2009

The mammogram chronicles - part 6: I'm stumped!

A couple days ago I received a letter in the mail. I've been assigned a time the first of week of May for a mammogram!

What I don't get is how they "magically" found a time so quickly (and that coincidentally allows them to keep treatment money within the district). Three months is supposed to be the maximum not the minimum waiting period for care. Yet this is the second time I've waited for specialist care that was scheduled just before expiration of the three month waiting period. And in this case, an appointment was scheduled within a week of the deadline.

If I can get an appointment so quickly after the scheduling deadline, why have they made me wait three months for it? Yes, I have no "urgent" symptoms, but the point of a mammogram is to confirm that there are no problems. And just because the symptoms aren't urgent doesn't mean there isn't a problem. (Otherwise, why bother with the mammogram?)

I don't like my health care district gambling with my health and playing the odds when, as far as I know, there is no reason for it.

I also don't understand why I was told me a couple weeks ago that I wouldn't be able to get an appointment within three months and that I was welcome to try and find a place that could take me.

I'm fed up with conflicting and non-information from the breast clinic at Centrallasarettet in Västerås!

I'm convinced no one knows what's going on and what the policy is for scheduling mammograms in Västmanland.

Wednesday, April 1, 2009

The mammogram chronicles – part 5: You’re not our problem

I called the neighboring health care district (Eskilstuna) this morning to see if it was possible to get a mammogram there. I had to wait in the telephone queue (they apparently have no callback system), but it was only a 5-minute wait so that wasn’t too bad.

I explained that I was calling from Västerås (my health care district), that the Västerås mammography unit was backlogged, and that if I could get an appointment in Eskilstuna the Västerås district would pay for it. The nurse, receptionist or whoever it was who answered the phone said Eskilstuna also had a backlog (only a month!) and seemed unwilling to take me.

She asked if this was a routine health check. I told her yes and no - that it had been five or six years since I had had a mammogram, that I had some pain, and that I thought it was time to get another. She asked me my age and pointed out that I should be getting called in regularly for mammograms (the law says about every two years, I believe) in my own health care district.

(Long story here. I wanted reminders for mammograms to be sent to me, but I did not want them to automatically schedule a time, which is standard procedure. If you don’t show up for a scheduled appointment, you’re billed for the cost unless you cancel or reschedule it, which at that time required you to play the “telephone time” game, which I can’t stand. I’d rather call at my own convenience and schedule it myself. I asked if they could just send me a notice without assigning me a time. No, that was not possible. “The computer” was not set up to do that (even though appointments for these kinds of things are often hand-written in the reminders). So in a fit of pique I told them not to send reminders and they obliged. I wonder if they are now “punishing” me for not doing it their way. After all, if a middle-aged woman who is supposed to have mammograms regularly hasn’t had one for five to six years, don’t you think she’d be given some priority?)

She implied that they couldn’t help me since this was a routine health check. I said that it doesn’t really matter whether it is or isn’t since the law says I’m entitled to an appointment within three months of the request, and Västerås has told me they can't honor the 3-month limit. She said I needed a referral if they were to take me. I asked why I needed a statement from a doctor (which I would have to pay for) to confirm that my breasts are lumpy and that they hurt. I already know that. But if I had a slip of paper from a doctor saying what I already know they would take me? I said I didn’t need a referral for a mammogram.

She said that the rules vary from district to district and that women in her district need a referral for a mammogram (since they get mammograms regularly). So, I asked, if I live in Eskilstuna and a year has passed since my last mammogram but I suspect I need another I must have a referral from a doctor? She did not answer the question but said if I had a lump (that magic word again!) they would see me, but that pain is not a symptom.

She iterated that I should be getting the check-up in my own district and I repeated it’s impossible since they can’t meet the 3-month scheduling deadline. I said she could book an appointment with me now or wait a month and deal with my health care district directly when they come calling themselves next month. She took my contact information and said she would check with her supervisor and Västerås, and that she would call me back.

Why, you wonder, didn’t I just tell her I felt a lump? Because it’s too late. They all know me now, and I’ll soon be on everyone’s shit list. And, I must also admit, I'm curious to find out how dysfunctional the system is.

Update: As I was finishing this chronicle, Eskilstuna called me back. The nurse had spoken with Västerås and if I want a mammogram in Eskilstuna, I must get a referral from Västerås. I asked what “referral” means – a promise that Västerås would pay or a referral from a doctor saying I needed a mammogram, or both? She didn’t really know – a referral is a referral. But to me it matters. If I need a promise of payment, I have to nag the breast clinic to provide one. If I need a doctor’s statement, then I have to visit a doctor (or get my own physician to write one for me). Out of curiosity, I asked again if women in Eskilstuna need a referral for a mammogram. She reiterated that women in her district get regular check-ups so, in principle, there is no need. But if a year after getting a mammogram a woman wants another, she needs a doctor’s referral unless she has obvious symptoms such as a lump or discharge from a nipple. She suggested I contact my own district again. (Back to square one).

“I don’t understand why Västerås can’t manage to schedule a routine check-up,” she said. (The million dollar question!) I can. It’s personal – they hate me. But don’t ask me to see a psychiatrist about paranoia – the wait is too long.