I'd like
to say that my mouth sores have disappeared and are gone for good. I'd be
lying. However, I can say this morning that, with the help of my primary
care doc and another very helpful pharmacist, I am finally getting a little
relief, no thanks to my oncologist.
Over the weekend, my mouth sores did not get any better. Matter of fact, they got worse. TMI alert: By yesterday, my tongue was completely raw on the top and sides, my lips were lined with open sores just inside my mouth, and my mouth was actually bleeding from open wounds. Gross, and SO painful. Hard to eat, difficult to talk. I called my oncologist's office yesterday morning, and didn't receive a phone call back until later that afternoon. The nurse that I don't care for told me that she had called in a script for Lidocaine (a numbing agent). I asked what that does and how it was going to help the problem. Oh - the dr wants to see me. Great - when? 2pm on Tuesday? Well, I had plans (my daughter was being awarded with 2 academic awards at school, and I missed the last one - I don't want to miss this one). I asked her what other times were available. None. At all. For the entire week. If I couldn't make it at 2pm on Tuesday, I would have to wait until chemo next week.
Really? In two offices and with all the PAs and doctors you have, there isn't a single appointment available?
Well, luckily, I was at my primary care doctor's office when this all went down. I spoke with him about the mouth sores, and he took it upon himself to make a phone call to his local Walgreen's compounding pharmacist, who looked at the most recent mouth rinse, and they worked together to tweak it. Within 30 minutes, I had an updated prescription for a better mouthwash, and was on my way.
Needless to say, I'm not at all impressed with my oncologist. At this point, they have now let me down more than once, and they aren't interested (in my opinion) in anything more than getting me in so I can pay more money. They aren't looking at me as a person - to them, I'm nothing more than a number. I'm just another recurrence.
But, I'm not. I'm not willing to settle to be just a number. This is my life we are dealing with. If I have to fight with them to get what I need now, when I have energy and stamina, what the hell is going to happen when I am sick and laying in bed all day?
I shouldn't have to fight this hard for something so simple. If I had finished this posting this morning, when I was still so worked up about everything, it would have been much longer, and likely a lot more crude. But, since then, I've had a conversation with CTCA, and I have true hope for the first time since this all started. I'll update on that later - just know that I'm going to a place that will absolutely treat me the way I deserve to be treated - like a person.
Moral of this post: You are your own best advocate. For all the good you think your doctors and nurses are for you, it's up to you to make the final decision. If something doesn't feel right to you, look at other options. You are the patient - this is your life you're fighting for. You have the right to make decisions without worrying about hurting someone's feelings or letting someone down. When it comes to your health, you are the only person who can make a decision that is right for you.
For me, it's changing to another oncologist. More on that amazing adventure in a bit.
Over the weekend, my mouth sores did not get any better. Matter of fact, they got worse. TMI alert: By yesterday, my tongue was completely raw on the top and sides, my lips were lined with open sores just inside my mouth, and my mouth was actually bleeding from open wounds. Gross, and SO painful. Hard to eat, difficult to talk. I called my oncologist's office yesterday morning, and didn't receive a phone call back until later that afternoon. The nurse that I don't care for told me that she had called in a script for Lidocaine (a numbing agent). I asked what that does and how it was going to help the problem. Oh - the dr wants to see me. Great - when? 2pm on Tuesday? Well, I had plans (my daughter was being awarded with 2 academic awards at school, and I missed the last one - I don't want to miss this one). I asked her what other times were available. None. At all. For the entire week. If I couldn't make it at 2pm on Tuesday, I would have to wait until chemo next week.
Really? In two offices and with all the PAs and doctors you have, there isn't a single appointment available?
Well, luckily, I was at my primary care doctor's office when this all went down. I spoke with him about the mouth sores, and he took it upon himself to make a phone call to his local Walgreen's compounding pharmacist, who looked at the most recent mouth rinse, and they worked together to tweak it. Within 30 minutes, I had an updated prescription for a better mouthwash, and was on my way.
Needless to say, I'm not at all impressed with my oncologist. At this point, they have now let me down more than once, and they aren't interested (in my opinion) in anything more than getting me in so I can pay more money. They aren't looking at me as a person - to them, I'm nothing more than a number. I'm just another recurrence.
But, I'm not. I'm not willing to settle to be just a number. This is my life we are dealing with. If I have to fight with them to get what I need now, when I have energy and stamina, what the hell is going to happen when I am sick and laying in bed all day?
I shouldn't have to fight this hard for something so simple. If I had finished this posting this morning, when I was still so worked up about everything, it would have been much longer, and likely a lot more crude. But, since then, I've had a conversation with CTCA, and I have true hope for the first time since this all started. I'll update on that later - just know that I'm going to a place that will absolutely treat me the way I deserve to be treated - like a person.
Moral of this post: You are your own best advocate. For all the good you think your doctors and nurses are for you, it's up to you to make the final decision. If something doesn't feel right to you, look at other options. You are the patient - this is your life you're fighting for. You have the right to make decisions without worrying about hurting someone's feelings or letting someone down. When it comes to your health, you are the only person who can make a decision that is right for you.
For me, it's changing to another oncologist. More on that amazing adventure in a bit.
Comments:
papadragon said...
When
all is said and done you are not JUST their patient... YOU are their BOSS!
Without you they have a store front office with cracked windows and leaky
pipes. Sadly insurance or lack of rules the day and dictates your level of
care, but even the best insurance will pay the worst doctor.
April
3, 2012 at 10:55 PM
Unnecessary
and unkind. So sorry you had such a mess to unravel. Hope your mouth feels
relief quickly....
April
4, 2012 at 7:40 AM
Well
said Michelle! I fired my first two dermatologist's when it became clear that
the had little interest in having a patient with a serious Melanoma history and
were treating me with disdain for having questions when I came in for
appointments! We ARE our best Advocates! Way to liveSTRONG! Glad your seeking
better out a better treatment team!
April
4, 2012 at 9:00 PM
No comments:
Post a Comment