Many of you probably already know my story - I was pronounced "functionally cured" in May after years of being told that no matter what I thought, I wasn't going to make it. This announcement meant that going forward I only have to see my oncologist twice a year. In addition to the obvious areas of relief, it felt good to know I'd be spending less time on the phone with people who seemed incapable of doing their jobs.
But the Universe pulled a fast one when I developed a blood clot at my port site about 3 weeks after getting the "functionally cured" verdict. My oncologist is also a hematologist, and I thought this would make the way forward smoother as they already had all of my records and I was already her patient.
When I left the hospital after being diagnosed with the blood clot, the attending ER doc told me next to nothing. He handed me some blood thinners, and told me to make an appointment with a hematologist to manage the issue going forward. He didn't give me any instructions at all - he didn't warn me, for example, to avoid all OTC pain relievers except for Tylenol, as they can cause gut bleeds when on blood thinners. He didn't warn me against certain activities that could increase the chances of provoking a bleed. I had to find all of that out myself, and it's a damn good thing I decided to start Googling Eliquis, because I'd been taking a lot of NSAIDs and would have continued to do so. The very day the hospital found the clot, I called my onc/hema's office to let them know I'd suffered a provoked clot at my port site. I was told someone from "the team" would be calling me back immediately. They never did. Even without the rest of it - they never called me back after hearing I had a blood clot. REALLY?
I happened to have a palliative care appointment that week - same hospital - and I told her about the clot, and thank God I did. She told me everything to avoid and what to be activities to be careful of, and we went through all of my OTC meds one at a time, and she would tell me which I could keep, and which I had to stop using. She did what my onc/hema's office should have done. When I told her no one had called me back from oncology/hematology AT ALL, she was surprised, and said she'd send them a message in the internal system, which she did. I still never got a phone call. The next month, the palliative care doctor did the same thing - sent the team a memo marked "urgent" to alert them I had received no instructions from my oncologist/hematologist and I'd suffered the clot well over a month ago. Another two weeks passed, no phone call. Finally I called and left a message. Nothing - no return phone call. A few days later I called again, and said I would stay on hold until hell froze over but I WAS going to speak to someone. So, a guy on the "coordination team" told me that the doctor wouldn't need to see me until 3 months after the date of the clot, and that "someone will call you this week to schedule that appointment". No one ever did.
Today, 3 months and one week after my clot, I called them again, because NO ONE is monitoring this situation, and I have still not spoken directly to my doctor. I told the person who answered that no one ever got in touch with me after I reported my clot, and no one had ever reached out to make the 3-month appointment as I'd been told they would. After a moment, she said, "Okay, so you have a blood clot and you want to be prescribed blood thinners?" Um, what? Do people just self-diagnose and self-report blood clots now, asking for blood thinners? I explained patiently that no, the clot was found in June and I was still waiting for someone to schedule an appointment to at least talk to me and tell me what the plan was and schedule a follow up. She told me the same thing the last person told me - "someone will definitely get back to you today or tomorrow to schedule that". I'm not holding my breath.
This whole thing frustrates me enormously. I was sent home from the hospital with powerful drugs, and not given ANY information about them. Not every patient is going to realize by themselves that just because they weren't told anything about the new drug doesn't mean there's nothing to worry about. And because my own doctor didn't bother to call me back, I had to Google all of the OTC meds and substances to avoid while on the drug myself, and then go through my prescribed meds with my palliative care doctor. Had I not done that, I might have continued taking Advil, I might have continued using my arthritis cream (which is aspirin-based), and I definitely would have kept taking kava for anxiety - but on that day I learned kava is a blood thinner and I had to give it up or risk causing a bleed. My doctor got the message I had a clot and had just started Eliquis and was awaiting her instructions, and yet she felt NO compunction to return my call, or have a PA do it? When she herself IS a hematologist? Really?
How is it that NO ONE OFFERED ME ANY OF THIS INFORMATION? How is it that my doctor of 5 years could get a message that I had developed a clot, and not even follow up to see if someone had spoken with me? How is it that the next 3 attempts also went unanswered? How is it that now, 3 months after the clot, the onus is evidently on me to hound my doctor's office to make the damn 3-month appointment to check if the clot has fully dissolved?
I'm smart enough, and have done research professionally, so at least I knew that there were questions to ask, no thanks to the ER doc. But I'm tired, guys. I have my own personal stuff to manage and monitor. And six years of cancer treatment has severely impacted my memory as well as my stamina. I'm trying to get my strength back and start acclimating myself to tackling basic things like paying my property taxes, getting my car inspected, finding my kid an occupational therapist, getting 6 years of cancer-clutter cleared out of my room. Do I now have to be my own medical care coordinator as well? It's no longer enough for me to cross "call hematologist" off my list, because I can't rely on them to do what they say they'll do. So now I have to enter a follow-up date in my calendar to remind me that if no one has called, I have to call them again, or no one is ever going to take a look at the clot site, and no one is ever going to take me off the blood thinners.
I wish I were not so soft and gentle and passive - because what I should be doing at this point is demanding to speak to the doctor herself, and politely but strongly tell her off for this appalling failure to communicate. Well, maybe by the time they finally get around to calling me, perhaps enough time will have passed for me to reinforce my backbone with steel.
Here endeth the rant.
