Newbie to all of this

[WWWGJSNET]

The subject is a treatment for my VERY rare form of cancer. In the aftermath of the above procedure I had a JP bag - which was removed last week. My left leg from the groin down to toes is puffed up.
In a couple of day they will fit me for a compression stocking. In three weeks they want to run another MRI to determine what the next move will be. My orIginal "bump" below my right knee is smaller than it was. They are hoping that it will get as small as possible before further surgery - if any. Right now, I am concerned with the swelling in the leg. I was told that some lymph nodes were removed from my right groin area at the top of the leg and that the body has a way of adjusting to "missing" nodes. Hope to compare notes with others who have had "puffed up" swollen legs. It would be good to hear of "happy ends" for this condition - if any. In previous lives - I am now 75 - I was very active in long distance cycling and walking events. This is the first year I have missed some events that I've been doing for the last few decades. For example, The Nijmegen 200 K four day "March" (World's largest walk). I've been told to avoid exercise for time being. Not sure how much "exercise" is good. A few hundred feet? A mile or so? HOPE SOMEONE on this message board has something in common with me and can contrast and compare our experiences.

Cheers,

GERY GLOBAL JUSTICE SEARCH

Madison, WI and Freiburg, Germany

[Barry]

It sounds as if you have a difficult condition that is more complex than the form of lymphedema that most of us have.

Usually exercise is recommended for people with lymphedema -- particularly walking; however, the message always is, "Ask your doctor first."

Having learned the hard way (by over doing) I also suggest that you also start SLOW. Limit yourself to short walks until you see how your body reacts. My experience has been that my body didn't respond the way it used to before I got lymphedema.

Barry

[pinkbear]

I have primary LE in most areas of my body. I too am still learning as my LE has really flared in the last 18 mos.

I do find that walking and water exercise has helped my fluid move. I try not to get too hot. That just makes things worse. I don't walk as fast or as long as I did before LE took over. It's hard to adjust to the new body. Never before was I one to sweat! Now I sweat just thinking about being hot.

I agree that starting slow is good. I also think we must take one day at a time maybe even one hour at a time. That's what has helped me get by so far. Small attainable goals instead of huge hefty ones.

Hang in there!

[delidiva]

you go girl prayers r with you

[WWWGJSNET]

WALKING + WATER

Last posting made mention of being in water. I look forward to being n a bathtup for a while to see what happens. Right now. my puffed up leg does NOT have severe pain - but it does not feel good in its enlarged state. Hope it eventually goes down.

This LYMH NOTES site has many good resources that I will be studying soon.

In an ideal world, all of us would have "a doctor" regularly available to give us accurate guidance. However, in my case, and with others that I've talked with, even "best" doctors are hard to reach on SPECIFICS. As I go on, I suspect that I will rely more and more on myself as to how I feel in walking various distances. No substitute for common sense. For starters, I plan on walking only one mile to a shopping center to pick up a good supply of food for the next week or so. To be conservative, I will take a cab back home again. Again, only last week was I "sealed up" again with the internal and external plastic tube feeding the JP drainage system bulb. The original incision looks OK - but I want to be very careful. Don't want to do anything that would cause the incision to open up. That could be a horrible mess with "leakage" problems. In fact, there were times with the JP system attached to my groin that "leakage" occured.

Hope my body has a way of remeding some of the damage that took place to my right leg with new (?) lymph nodes.

NICE hearing from Lymph Note people.

GERY, Madison WI + Freiburg, Germany