Lupus and Caregiving: Cancer and Navigating the Health Care System

My sweet, loveable mom has cancer.

I know. Big, long, sad sigh.

It’s been a difficult summer navigating her appointments, tests, procedures, and follow-ups. We’ve been primarily working with three doctors – a hematologist/oncologist, a rheumatologist, and a gastroenterologist – all of whom are top notch and work well together. But the appointment and testing process has been rigorous. Holy smokes, we’ve had a lot to manage!

My sister and I are happy to help – but it’s inconceivable that my mom could have made her way past the first appointment. And that makes me sad, because I know there are so many elderly people who are without help. They simply don’t get the care they need, because the process of obtaining the care is so hard!

Here’s an example of the kind of stuff we encounter. I recently had just two appointments to make for her - one for a PET scan, the other for a mammogram.

I had the two orders in hand, with instructions for each:

The orders had already been faxed to the two facilities where each test would be done. Get the tests done within 10 days. Wait 2 days before calling.

After Day 2, I called for the PET scan. The phone attendant said they didn’t have the order.

She asked if I could fax it. I said I could email it. She said that wouldn’t work, but offered to call the doctor’s office.

She called back a few hours later, and confirmed she had the order. She said now we had to wait two days for the insurance to clear, and warned me it was a 5-week wait list.

Grrr. I said I would patiently wait.

Meanwhile, I called to book the mammogram. They had the order, but it was a two-month waiting list. We tried every branch they had, to no avail.

I knew of another imaging center close by. They asked me to email over the order. It was a 6 week wait list. 

I asked what they did for emergencies, or for cancer diagnoses, and the phone attendant said we could escalate it to her manager. I said let’s do that. She said before she did that, the order was incomplete – she didn’t know whether it was bi-lateral or left or right. I said it was bi-lateral. 

She said she needed it to be on the paper. I asked if we could just book it as a bi-lateral, and get confirmation later. She said no. 

I asked if I could be transferred to her manager. She said no. She needed the information first.

Grrrr.

We hung up, and I took a nap. To cool off. To rest up. To reload.

After my nap, I checked my email, and there was a page two of the order that she must have missed. It said in small print “bi-lateral”.

I called back and spoke to someone else. I resent the email, noting the fine print. 

She said she would escalate it to her manager, and asked me to hold. Her manager had already left for the weekend, but she promised to call me back on Monday morning. She said we could have booked it without the specs. 

She was sure we could find space next week. 

My luck was changing.

I called the PET imaging again, waiting only a day. They said they didn’t have the order. 

I said I was sure it was there. 

She said she didn’t have it, but that they work closely with our doctor. She said let’s go ahead and book it without the order. She would call later to get it faxed over. 

She saw it was a 5-week wait list. She made some calls. She got us in within two days.   

Then, as promised, the imaging center called on Monday morning. They got us in the same day.

Many calls and a load of frustration later, we had the appointments booked. But did it really have to be that complicated? Thank goodness for the kind-heartedness of those last two ladies working the phone lines. I don’t think I could have made it without them!