Visiting The Lymph Lady is now a weekly occurence. Find some of what I see and hear quite horrifying. Today there was this woman, thin, particularly thin, who had had her arm bandaged. "Three days into chemo,' said The Lymph Lady when I enquired about it, "and she got lymphedema. Yes, chemo can set if off, if you're prone to it," she explained, saying the woman had metastatic cancer so had had initial treatment which had set her at risk quite a while back. Today was her first visit.
About a month or so back The Lymph Lady told me about her patient whom she had first treated a few years back, then she went camping/into the bush, got bitten by some insect and voila! instant lymphedema. While visiting The Lymph Lady she said she had red bumps and according to the Internet that could be leukemia and that her husband had laughed at her, telling her not to diagnose herself from the internet.
When I next enquired about the patient, The Lymph Lady told me she had died three weeks later, from leukemia.
Feeling a bit down. Not all the time. Just a little frustrated, I guess. Not too serious.
Oh been thinking: is there anyone else out there who is high risk for lymphedema? Would love to hear from you and how you manage it and deal with the anxiety and so on. Ja, my arm was up today but apparently within range.
About a month or so back The Lymph Lady told me about her patient whom she had first treated a few years back, then she went camping/into the bush, got bitten by some insect and voila! instant lymphedema. While visiting The Lymph Lady she said she had red bumps and according to the Internet that could be leukemia and that her husband had laughed at her, telling her not to diagnose herself from the internet.
When I next enquired about the patient, The Lymph Lady told me she had died three weeks later, from leukemia.
Feeling a bit down. Not all the time. Just a little frustrated, I guess. Not too serious.
Oh been thinking: is there anyone else out there who is high risk for lymphedema? Would love to hear from you and how you manage it and deal with the anxiety and so on. Ja, my arm was up today but apparently within range.
Hi Gillian,
ReplyDeleteDon't you think that it is just luck of the draw? It is such a frightening prospect that I just don't like to ever think about it.
I had 17 right nodes and 12 left nodes removed when I had a bilateral mastectomy. I play tennis just about every day. My lymph lady was dubious about this approach, but my breast surgeon encouraged it. I am starting a weight lifting program tomorrow.
It is just about the worst thing about all of the treatment. I don't even have lymphedema and it is terrible just as a possibility. Flying long distances is pretty scary, but what are we to do?
I read your blog regularly. I wish you continued health.
Thanks. I am curious. Do you do manual lymph massage, have you ever had to wear a compression sleeve, how often do you see a lymph expert, and don't you have to wear a compression sleeve when you fly long distance? Also, do you follow any other precautions? I also don't have lymphedema, just very high risk.
ReplyDeleteHi Gillian,
ReplyDeleteOur treatments are so different, but I think our risk is the same. I used to do manual lymph massage, but I stopped it since I don't seem to have any lymphedema. I do not wear a compression sleeve except when I fly to Europe. I travel frequently to Houston which is a two and a quarter hour flight and have not had problems so I just take the sleeves with me in case I need them later in the flight or on the way home. So far, so good...
Flying to Europe is different though. It takes me about 2 hours to Chicago, then change planes and then it is about 8 hours more. I am pretty concerned about the risk of a really long flight, so I wear compression sleeves and I do some manual lymph massage during the flight. This activity does spook me but again, so far, so good...
I went to a lymphedema specialist for the first four or five months post surgery. I think you found my blog so you probably know that I played tennis throughout chemo, 7 weeks post mastectomy and throughout radiation. My surgeon feels that her patients that are really active do better than those who restrict their activities. Tennis is good because it helped me with my range of motion. The surgeon told me sternly to stop if I feel any tingling of my fingers or pain in my hands. I used to get a little tingling but I never do any more.
I hope this is helpful. It is just so scary. As I said before, lots of this is tolerable but having to worry about lymphedema is so very stressful.
Joanna
Oh well thje long distance flying is the same then. I wore a compression sleeve when I flew to France last year but when I fly to Cape Town, a two hour trip from Joburg and one which I do fairly often, I don't. But I do occasionally have tingling in my fingers and I do the damn massage twice a day. Great that you are able to play tennis and think it's unbelievably amazing that you did it during chemo. On the other hand, I was banned from going to gym from even before I started chemo - I swear! Often think back to that conversation with the oncologist - so I don't know although I can say that I would not have been able to tackle yoga as when I did go back, post radiation I think but cannot remember exactly - I found it quite taxing to stand and move!! It was hilarious! Go well.....
ReplyDelete