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| "Heart Throb" dimensional appliqued fiber art, in progress, Lisa Broberg Quintana |
I snorted. Loudly.
I have been in a quandry about this for quite some time. Sometimes it seems like we are viewed as bits and pieces and no one really looks at us entirely. I don't know if they feel that cancer is the biggie we're fighting right now so looking at anything else is piddly, or if it just doesn't matter because cancer is going to kill us anyway.
When I started Abraxane, and started to have some side effects, I thought about driving down the 30 minutes to go to my oncologist to get some help. But my general practitioner was only 15 minutes away and surely he could handle a case of thrush....or my weeping hands.....or the rash. Most of the time, they just looked at me, called their co-workers in who looked at me, they shook their heads and I went off. Sometimes when I talk to my oncologist about problems I'm having which may or may not be cancer related and he shrugs and says, well....it might be bursitis..or whatever....and that's the end of that.
I have always been cautious of my heart.....afterall, my great-grandmother died of a heart attack at 51; my grandfather died of a massive heart attack at 68; my dad had his first heart attack at 50, his second at 72, and his third at 82. A couple of weeks ago, some of my friends asked me if I went to my regular doctor....they were concerned because several weeks earlier they thought my color was bad. I have pain in my sternum which is not cancer related and had severe fatigue...even though my blood counts were good and I hadn't been on chemo for three weeks. I still don't know what is going on. When ever I mention it...people nod....and go on. Is it that the Lyme Disease I contracted in 2010 is still active, even though I did a course of oral antibiotics? Is it something else? Who cares? Seemingly not my doctors.
It would be really great if the oncologist and the general practitioner would actually communicate. I would seem to me that we could actually get somewhere from this...in the meantime, I feel like it just doesn't matter. I don't get satisfaction for the issues of the rest of my body....because I am just a bunch of bits and pieces. And that is just plain wrong.
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Yes, I can imagine that you're suffering from this as our doctors become even more specialized. Perhaps there's room somewhere in our system for a cancer patient ombudsman (or any critical care outpatient) who facilitates doctor communications.... ?
ReplyDeleteVivien, you are correct. On the coasts, or in major population centers there are such people. You hire them separately and they watch over your care....I do not know of any here.
DeleteI'm sorry, but I don't feel this is an acceptable way for your doctors to treat you. Your oncologist and GP should be communicating or at least reading each others' notes, or listening to YOU. You are not just your cancer and you deserve to have all your issues addressed. Heart disease/damage isn't anything to be taken lightly. Nodding or blowing off your worries doesn't cut it.
ReplyDeleteNancy, I agree. This isn't the ideal...but it is my reality. In order for this to work, it takes a lot of stamping of feet and protesting loudly....but it comes to the point where it just doesn't work well and I have to use what little reserves I have left carefully. After spending 1 1/2 days in bed as a result of Halavan fatigue....it is just really hard.
DeleteFinding doctors who listen and are willing to work together is becoming increasingly difficult, particularly when you are not in a population dense area or an area which has a plethora of good docs.
Lisa,
ReplyDeleteIf you are getting any medications with cardiac side effects (I'm on two such chemo drugs myself), you should indeed be getting some kind of monitoring for heart problems. I get an echocardiogram every three months, for instance.
Have you checked to see if your insurance plan includes case management services? A telephonic case manager can help you coordinate care between your various health care providers and make sure you get appropriate followup.
Good thought mary, but no, nothing I am currently on is supposed to impact the heart. Anthem is my insurance, and while they have case management services, they have been less than helpful in the past.
ReplyDelete