Butch Femme Planet - View Single Post - Cancer Support and Caregivers Who Are Trail Blazers!

waxnrope · 05-22-2010, 09:12 AM

I will be going to Switzerland in about a month ... if all goes well ... to be with the last of my immediate family, my sister. I can only go for a week because it is all the time that I can take off from work.

My sister, Dolores, was diagnosed with an aggressive lung cancer which I learned about the in April, and has lived there, in Switzerland, with her husband for a couple of years. They have good health care there, albeit, slow, and from what I can ascertain, the various specialist do not communicate well with one another. I have been doing the arm chair quarterbacking of her care from afar. I hope that by my going this time I will be able to establish firm contact with at least the oncologist so that I have email communication with her on a fairly regular basis. We have "fired" her primary care doctor, the "professor" who is dismissive and unresponsive.

My sister gets confused about all that is going on: she was having palpitations and her PMD did not think to do a simple EKG. I told her to ask for one, and it turns out that she had a significant irregularity that required medications for the rhythm as well as a blood thinner to prevent clot formation and subsequent stroke. There were complications from this in which I had to intervene/interfere. Thus, we fired the bastard.

I initially planned on going in the fall/September, but she wants me now, during the next cycle of her chemo and when she will begin radiation therapy.

While this does not place me as the usual "caregiver" (her husband is that), I am the one she turns to for help in navigating the tangled webs of western medicine. So, in that fashion, I am a caregiver. If/when her condition worsens, I suspect that I will be there for a longer spell and providing her husband with some respite.

I cannot utter that which lays like a stone in my soul about how I feel about my "big" sister having this cancer. I don't know what to say when she says, "I don't know what to do" ... meaning, about dying. We have started the conversation, as a suggestion by a friend of mine, about a bucket list. We've begun the stories of mom anew (she was a medical "miracle" in that she had 3 separate cancers and lived 3 1/2 years beyond her "six months" prediction) ... and have started the laughter in the telling of such tales.

There is someone, on this site, knowledgeable about cancer research. She has helped me as I am trying to stay one step ahead of the "natural history" of my sister's cancer (if and when the treatment fails). She has been supportive and kind.

As for me, selfishly, I feel at times abandoned and homeless, in an odd sense. I have been writing when I can face it. The pen is my therapist. Metaphors are my life. My new love keeps me from drowning.

Thanks for reading/"listening"

05-22-2010, 09:12 AM	#40
waxnrope Timed Out How Do You Identify?: Permanently Banned 5/27/2011 Preferred Pronoun?: hy ho, hy ho; he, she, it, whatever Relationship Status: Going slow ... Join Date: Apr 2010 Location: in her orifices ... la frontera Posts: 1,433 My Photo Gallery Thanks: 6,414 Thanked 2,958 Times in 953 Posts Rep Power: 0	I will be going to Switzerland in about a month ... if all goes well ... to be with the last of my immediate family, my sister. I can only go for a week because it is all the time that I can take off from work. My sister, Dolores, was diagnosed with an aggressive lung cancer which I learned about the in April, and has lived there, in Switzerland, with her husband for a couple of years. They have good health care there, albeit, slow, and from what I can ascertain, the various specialist do not communicate well with one another. I have been doing the arm chair quarterbacking of her care from afar. I hope that by my going this time I will be able to establish firm contact with at least the oncologist so that I have email communication with her on a fairly regular basis. We have "fired" her primary care doctor, the "professor" who is dismissive and unresponsive. My sister gets confused about all that is going on: she was having palpitations and her PMD did not think to do a simple EKG. I told her to ask for one, and it turns out that she had a significant irregularity that required medications for the rhythm as well as a blood thinner to prevent clot formation and subsequent stroke. There were complications from this in which I had to intervene/interfere. Thus, we fired the bastard. I initially planned on going in the fall/September, but she wants me now, during the next cycle of her chemo and when she will begin radiation therapy. While this does not place me as the usual "caregiver" (her husband is that), I am the one she turns to for help in navigating the tangled webs of western medicine. So, in that fashion, I am a caregiver. If/when her condition worsens, I suspect that I will be there for a longer spell and providing her husband with some respite. I cannot utter that which lays like a stone in my soul about how I feel about my "big" sister having this cancer. I don't know what to say when she says, "I don't know what to do" ... meaning, about dying. We have started the conversation, as a suggestion by a friend of mine, about a bucket list. We've begun the stories of mom anew (she was a medical "miracle" in that she had 3 separate cancers and lived 3 1/2 years beyond her "six months" prediction) ... and have started the laughter in the telling of such tales. There is someone, on this site, knowledgeable about cancer research. She has helped me as I am trying to stay one step ahead of the "natural history" of my sister's cancer (if and when the treatment fails). She has been supportive and kind. As for me, selfishly, I feel at times abandoned and homeless, in an odd sense. I have been writing when I can face it. The pen is my therapist. Metaphors are my life. My new love keeps me from drowning. Thanks for reading/"listening"