Lifetraveler's hug brought tears to my eyes because I was feeling very alone. The sense of not having control over my own body was overwhelming. Just the fact that she had heard me and knew I needed a hug meant a great deal. Then your reply, Chris meant more than I can say.
I am an hour away from Beth Israel in Boston, which has a Center of Excellence" Lymphedema Clinic. lymhatic center according to the Lymphedema Research and Education Network (LE&RN). I had looked into getting evaluated there but didn't follow through, feeling so many people are so much worse than I am they would probably blow me off. Your message and the link you sent me made me feel that I do need to follow through and send that application for an evaluation in to them.
All I was told here was doctors don't study lymphedema. I got blown off by my (first) oncologist, who said "Oh, that will be there" when I pointed out swelling to her. I was ignored by the nurse navigator (she didn't reply for three weeks to my email when I first sensed something was wrong, I thought I was just a complainer. When I was finally referred to PT, it was simply to a PT assistant, with no training in lymphedema but no one told me that I needed a LANA certified CDT therapist.
When my arm was 19% larger than my other arm, I was finally referred to a LANA certified therapist
I have no complaint with her. But it is hard to not be able to trust a doctor when you have a medical problem. I even tracked down an MD (a family physician) who is in my neighborhood who has lymphedema. I just wanted to meet her (not as a patient but just as another woman who has lymphedema) She refused, I have begged for a support group but am given cockamamie excuses for why that is impossible. One of the excuses is that women who have lymphedema are too ashamed and would never come out to a meeting. Hearing that made me feel like a freak. Was I supposed to be ashamed for having lymphedema? All the more reason that they should have a support group.
My radiation oncologist didn't know that there are stages of lymphedema. He blew my concerns off, telling me all I needed to do was elevate my arm and make fists. By that time I had stage 2 lymphedema and it doesn't respond to elevating it or exercise. The fact is, when I developed a rash where the radiation had been, a year earlier, I sent him a message. It was through the portal so his nurse may have gotten it, not him) When he didn't respond, I thought it mustn't have been anything serious. I ended up with cellulitis/lymphangitis. By the time I got to the hospital, they told me had I stayed home that night, I would have had about twelve hours to live. My kidneys were shutting down.
People don't realize that while lymphedema isn't fatal, lymphangitis/cellulitis can lead to sepsis and that is fatal. They don't realize that when you're missing lymph nodes, a small infection can lead to this complication. And it happened very fast. One night I felt fine and the next morning I was sicker than I had ever been.
I feel others think I'm making a big fuss over "a little swelling".
My lymphedema therapist told me, "this will be a daily battle for the rest of your life."
I have even thought of ending my life just to end the misery I feel about the lymphedema. My biggest fear is that cancer will be missed again on the other side and I will get lymph node involvement. I'm not in the least afraid of cancer again. I'm far more afraid of getting lymphedema on the other arm.
A good day is one that I run errands or go out socially and no one comments on my compression. Even little kids run up to me innocently wanting to know when I will "get better". It is embarrassing. When I wanted to take off the wrappings just to feel a little more attractive when having a special dinner with my boyfriend, my arm started swelling within an hour. It has been five years of this. I get praised for how "normal" my arm looks and I respond, "That's like telling Sisyphus "Good job". My lymphedema care is like a part time job, Each morning I don't know what I am going to see when I take off the bulky and heavy night compresssion sleeve. This morning I used the pneumatic pump and my arm and afterwards my arm and hand looked worse than it was before. I used to love to cook and to garden but both are so difficult to do because the gauntlet gets filthy and if I put a glove over the gauntlet, in the garden the heat from the glove causes my hand to get even more swollen. When I told my rad onc about how when I cut an avocado my gauntlet was stained with green, he thought it was hilarious and told me I should lick it like a cat. That comment was humiliating.
I finally switched my cancer care to Dana Farber in Boston and have found a different attitude. It's a long ride on public transportation and it's more expensive, but it's worth it. And now, I realize I need to get an evaluation at Beth Israel. I'll send that application on Tuesday, after the holiday.
I can't thank you enough, "auntie oakley".