There is a little ditty about feeling low, which tells that all of a sudden a voice from high counselled:
"Cheer up! things could be worse." So I cheered up, and sure enough, things got worse.
So there I was, feeling that, all things considered, I was recovering reasonably well. However, much to my dismay, the lymphoedema which afflicted me in the wake of chemotherapy and radiation following surgery from breast cancer in 1998, and which had been contained by physiotherapy and a pressure sleeve, has flared up again, this time quite severely. The arm is very swollen and uncomfortable. It looks as though I am half a fat lady.
The nurses in the hospital kept coming to take my blood pressure, and I kept having to say, "Not on the left arm, that is the lymphoedema arm!" My daughter attests to this. Evidently no one made any note of this. A couple of times they just ignored me and did it anyway. Then during the surgery I was hooked up to drip, anaesthetic and whatever, on the left side, and this is the result. Why don't they listen? How many times do you have to say something before it gets noted, and the routine varied?
This should not have happened.
My sister, a cardiac care nurse, advises me to write to the hospital. I will do so.
I have made an appointment with a lymphoedema physiotherapist, but this won't happen for a couple of weeks. Today, my regular physiotherapist will see me, which should help. The arm will probably need a pressure sleeve, and that will take some time to be organised and made. In the meantime I must be even more careful than usual.
It took months of care, and physiotherapy, and the continual wearing of the pressure sleeve, and subsequent carefulness - no blood pressure on that side, no injections, no heavy carrying, no overheating, to overcome the first occurrence, and for it to remain dormant. But it never goes away. You cannot afford to take the risks.
"Cheer up! things could be worse." So I cheered up, and sure enough, things got worse.
So there I was, feeling that, all things considered, I was recovering reasonably well. However, much to my dismay, the lymphoedema which afflicted me in the wake of chemotherapy and radiation following surgery from breast cancer in 1998, and which had been contained by physiotherapy and a pressure sleeve, has flared up again, this time quite severely. The arm is very swollen and uncomfortable. It looks as though I am half a fat lady.
The nurses in the hospital kept coming to take my blood pressure, and I kept having to say, "Not on the left arm, that is the lymphoedema arm!" My daughter attests to this. Evidently no one made any note of this. A couple of times they just ignored me and did it anyway. Then during the surgery I was hooked up to drip, anaesthetic and whatever, on the left side, and this is the result. Why don't they listen? How many times do you have to say something before it gets noted, and the routine varied?
This should not have happened.
My sister, a cardiac care nurse, advises me to write to the hospital. I will do so.
I have made an appointment with a lymphoedema physiotherapist, but this won't happen for a couple of weeks. Today, my regular physiotherapist will see me, which should help. The arm will probably need a pressure sleeve, and that will take some time to be organised and made. In the meantime I must be even more careful than usual.
It took months of care, and physiotherapy, and the continual wearing of the pressure sleeve, and subsequent carefulness - no blood pressure on that side, no injections, no heavy carrying, no overheating, to overcome the first occurrence, and for it to remain dormant. But it never goes away. You cannot afford to take the risks.
5 comments:
I do sympathise with you as I've seen my sister in a similar state from a similar cause.
Perhaps next time there is a trip to hospital you should write on your arm with a permanent pen. Something like, "Do not use this arm for any tests. Ever!?
Oh, how very trying indeed. Just as you were beginning to get better too. So sorry.
Oh dear so sorry, you were just beginning to turn a corner too. Hope the physio gives you some relief......
I like Jan's idea. Good grief, I wish people would listen, such a simple switch to the other arm. I am so sorry.
My husband has a lymphodaema arm, also and so far he has not had any trouble from it. However he has been having trouble with the infusions as (I suspect) the veins in his remaining "good" arm are scarred and causing him intense pain whenever they insert the cannula. Funnily enough he doesn't have any trouble with the blood tests taken from the same arm.
You have my sympathy for the problems you are suffering now, particularly as they could have SO easily and responsibly been avoided.
Karen C
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