Secondary Lymphoedema

This will be the final installment in my saga of Breast Cancer. For any of you that missed the beginning of my story, you can check out the first post about Chemo here and the second post about Radiation here. This post is about how I discovered the cancer and the surgeries.

So, Secondary Lymphoedema, is the result of having Lymph Nodes removed from my right armpit in order to see if my type of breast cancer had spread to the lymphatic system. I was very lucky in that it hadn't, all of the nodes they removed were clean. That is what makes the lymphoedema so very frustrating. It turns out not to have been a necessary surgery and I will have to put up with this probably all of my life! I could be lucky and it will correct itself over time, some women who have had the surgery never experience the swelling that I am about to describe to you.

First off, here is the link to the Wikipedia description. They have other links there as well and a link to the blog of a woman suffering from primary lymphoedema which is very informative.

Without getting too technical, the lymph system is a circulatory system, much like how your blood flows through your body. It's job is to filter & carry away toxins and crap in your body. With the removal of some of the nodes, my bodies ability to remove this fluid has been compromised which results in the fluid accumulating in the arm.

The resulting swelling is painful to say the least. In order to get rid of the swelling, I had to visit the physio therapist at the cancer clinic daily to have my arm wrapped in compression bandages. They start the wrap with a cotton/spandex sleeve, the wrap the fingers and hand with gauze. Over this they wrap up the length of your arm a thin 4" wide piece of foam. Now, if you aren't hot enough already, they then start from the hand and wrap 4 tensor bandages, in a figure 8 pattern all the way up your arm. In my case, they had to add a cushion over the nerves at the base of the thumb and an extra cotton padding at the crease of the elbow. This is what the end result looks like. (Sorry for the quality, click to get rid of the background.)

Close up of the hand

Monday through Friday, I had to get my arm wrapped, then walk over to the radiation department and try to get my clothes off and then tie one of those designer gowns they give you. With a newly wrapped arm, you can't bend your elbow! I eventually gave up trying to tie it, I figured that everyone there was there for some treatment or moral support for a family member and that seeing my back bare (I was able to keep pants on), was not going to shock or upset anyone.

Weekends, I was to keep Fridays wrap on as long as I could which meant that I had to shower with the wrap on. They gave me a plastic glove that goes all the way to the shoulder. Now those of you that know anything about farm animals or watch TV or movies where this glove may have been used as comic relief, know what type of glove I am referring to. So, being the smart-alec that I am, I asked the girl that was wrapping me, if they get the gloves from a Veterinary supply house? She looked at me kind of funny, then the penny dropped and she laughed. She was a farmers daughter, she knew that this was the type of glove used for pulling calves or turning them in the womb or other things I don't want to think about that would have to do with the insides of large animals. When I needed more gloves, one day, I had the therapist (not the assistant) wrapping me, but, I asked for more "vet gloves". She had no idea what I was talking about! After I stopped laughing, I explained to her what they were for, she said she didn't think they came from a vet supply house. No sense of humour that one.

Wrapping the arm and forcing the fluid out has a few side effects. One of which is that the fluid has to go somewhere and the closest place is the lungs. This is not a good thing when you have asthma not to mention the awful habit of smoking. I am working on that I swear! The weird experience I had, was when it went to my head! For two days, I am not sure if it was because I was so tired or what, but I must not have moved all night and when I got up, I staggered like a drunken sailor. It affected my balance for a few minutes each morning, I was even listing on the loo. Not to mention walking sideways, and each step getting faster trying to stop moving in the direction of the wall! Very funny in retrospect, but not so funny at the time.

Of course, by this time, the season had changed and it was full on winter. Here I am running around in a tank top just so my arm could be wrapped easily! Um and because I didn't have any long sleeved shirts that would go over the wrapping. I was very thankful that I had lost a bit of weight and that the sleeve on my winter coat was wide enough to accommodate my arm, even if I couldn't get my hand out of the cuff. I carry my wallet in my front right hand pocket, that made for some interesting times, I would put wallet in pocket before I got wrapped, then go shopping in the afternoon if I needed anything. Yes, I am a slow learner! ;)

My right arm was toasty warm, the rest of me was freezing while I was waiting for buses! I didn't have a crappy old sweater that I could cut the arm off of to keep the rest of me warm while wearing sleeveless tops, though I eventually remembered that I still had my leg warmers from the '80's. They lived in the trunk of my car for winter emergencies, in case you were wondering. They and a large scarf draped over my shoulders were the solution I needed to my dilemma. Well, that and two or three hats to keep my head warm.

Finally, they got the swelling down and somewhat stable about the same time my radiation ended and were able to order a custom fit sleeve and glove for me. These are compression garments and the idea is to prevent the arm from swelling more than it is already. They last about six months and then you need a new one. Silly me, I phoned at 5 months to make an appointment to be checked, only to be told that my therapist wasn't available for the next three months! By the time I got in to see her, I had thought things were under control and so had done some silly things like washing walls and moving furniture, cleaning places that hadn't been cleaned for awhile, because I had been sick. This was not a good idea. I over did it and my arm blew up just before my appointment! It had 3 cups of fluid more than my left arm! So, I had to go through the wrapping procedure again before I could order the new sleeve. As soon as I got home, I made a point of writing on my calendar, at four months, to call and make an appointment!

They gave me a bunch of exercises and massage techniques to use to keep the lymph fluid moving the right direction. They have recommended a low protein diet as well as lowering my sodium intake. What they didn't mention is how to get back to being able to carry any weight. I have been doing the exercises and massage and watching my food intake, but every time, I carry something the least bit heavy, I can see my arm swell. I can see my arm swell if I have to write a lot by hand. This is the frustrating part of having lymphoedema! I have to find the right balance of exercise and diet that will make it go away and stay away. Losing weight would be a bonus if it happened!

So, now I am on maintenance, trying to keep the arm from blowing up like a puffer fish. I have a mammogram scheduled for Friday (that took three months to get an appointment), so I will post my results when I get them. They will of course be clean - right?

Good Evening all.


Hilary said...

You bet they will! Sending my very best thoughts your way for Friday. You can do likewise when I go for mine (among other tests) on the 17th. ;)

Thanks for sharing your story, Reb. I'm hoping that it's somewhat therapeutic for you to write about it. And hopefully the typing isn't as taxing on you as writing with a pen.

the Bag Lady said...

Of course you are clean! This was just one of those little bumps in the road of life.
You need to learn to use your left hand more, sis! Sheesh, thought the Bag Lady taught you better than that. At least you tie your shoes properly...:)

Reb said...

Hilary, thanks. Yes, it has been a bit therapeutic, of course looking back at it makes it seem much better than I think it actually was. No, typing is not as taxing, but it does get tired faster than the left which makes for some interesting spelling. Good luck with your testing! I'll keep my fingers crossed for you.

Sis, I know it will be clean, didn't I say so? Yes, I use my left hand for many more things now, but sometimes you just can't not use the right hand.

Leah J.Utas said...

Unquestionably clean.

Reb said...

Thanks Leah.

Crabby McSlacker said...

Best wishes for Friday.

And how frustrating about all this being the result of a surgery it turns out you didn't need!

I guess there's no alternative, but it sure would be nice if they could have some how checked the lymph stuff out with removing it.

Hope it gets better over time.

Reb said...

Thanks Crabby. Yes, it would be nice if they could find another way to test. The first surgery they took a lymph node next to the lump and it had one teeny tiny bit of cancer, which is why the decision was made to go look for more. Oh well! It's done all I can do is do my exercises.

Mamacita Chilena said...

Of course the results are clean. No worries.

Although I know that's impossible. My hubby is a cancer survivor as well and every time he has to go get tested there's just a knot in my stomach until we find out the results.

thanks for writing about your struggles, I can imagine that's been hard.

Geosomin said...

Oh, my dear, I do feel for you.
I see secondary lymphodema that in some of the patients here at the cancer clinic when they are back in for checkup as after chemo...and I *know* it means they had to remove the lymph nodes to be safe, but it looks like just another thing to deal with after the whole shemo and surgery. I am surprised they took them ALL out. But I suppose if it was me I'd rather they got it al than missed out on something.
And I don't doubt your results will be clean...
You beat this thing. No way round it. You *will* be well...:)

Reb said...

Mamacita Chilena, thank you for your kind words and for dropping by. I did have kind of a sleepless night last night & I don't imagine it will be any better over the next few days. I think it will take a couple of clean tests to be relaxed about them again.

Reb said...

Geosomin, thanks for your optimism! I may have misled, they took 6 nodes, but all the nodes they took were clean. Sorry 'bout that. So, how many do you see wearing pretty colours for their custom sleeves?

bunnygirl said...

Sounds like you need some of these: http://sliceoffashion.com/html/products.html

Also, did you know you can get kinesio tape from Amazon? I use it for overuse injuries, but the package says it's also used for lymphoedema. It's such nice comfy tape! I sometimes get swelling in my feet, and I wrap my feet up in my kinesio tape and it solves the problem with no constriction of movement. It's a little expensive, but so worth it!

Jenny Jill said...

Thank you for telling this story. I spotted your MTM blog and found you. My mother had lymphoedema after her cancer surgery. It resulted in a blood clot just before her 2nd chemo treatment. She passed away a couple of weeks later.