Reflecting! Am I Crazy!!!

I thought that I would reblog this, as due to the nature of blogs, which work newest to oldest many followers have missed the start of the journey.. For those who have been there from the start you can skip this one!!… Am I crazy doing this??? Still do not know the answer to that but ask me in another year!!! Well I could know more when I have new scans etc in September.. .. I love your comments and the emails and have “met” so many wonderful people since starting this blog.. A bonus I did not expect…

My Lymph Node Transplant

imageJust over two weeks till I have my Lymph node transplant, on the 14th March, so now starts the count down!! Today I have found myself reflecting on what has led me to this. Why would I choose to have major surgery which is still in its infancy? I have been remembering the last time I had major surgery, that time a choice was not given.

I was told over the phone that I had Cancer of the Uterus, on October 19th 2001, an appointment had been made for me with a surgeon at Royal Women’s Hospital in Sydney. This diagnosis came like a bolt from the blue, totally unexpected. I had been having problems but the word Cancer had never been mentioned prior to this. Suddenly I was in hospital having a Radical Hysterectomy including the removal of Lymph Nodes. Cancer was found in one node so there followed…

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6 thoughts on “Reflecting! Am I Crazy!!!

  1. You are not crazy! I follow your blog avidly and am hoping that the surgery works for you. I have LE in my left leg – it just appeared out of nowhere 5 years ago and I am SOOOOOOO bored and frustrated with it. I am an active 40 year old with 2 small children. I ride, ski, do zumba, swim etc, and deal with the constant ups and downs (literally!) of my leg. I try not to let it get me down, my main problem with it is finding clothes and shoes that fit around it – I hate the look of it and all the questions.
    Your blog is very inspirational – I love reading your posts and the others linked through it. I live in hope of one day having a normal leg again, and if surgery gives you that, I shall be going down the same route.
    Sending you lots of support and blessings, thank you so much for all your words

    • If not yet then I truly believe that one day they will perfect this surgery … Given time and more experience it shines a light at the end of a long tunnel…the more research the better…in the mean time keep doing all the things you do… 😃😃

    • My situation is very similar to yours–my surgery for cancer was in 2006-type 1a endometrial carcinoma (the MD’s said the cancer was the size of a pea)–The MD said they took 6 lymph nodes from my left groin for biopsy. After the surgery I was fine for 6 yrs. and then in 2012 the left leg started becoming edematous. I went for several diagnostic studies and it was determined that I had lymphedema– My primary care physician referred me to a vascular surgeon who referred me to a rehabilitation associates center where they did MLD 3 times per wk for 3 months–I didn’t know what ANY of this was about—I was in total shock……Fast forward—I’ve been doing all of these conservative measures for a year meaning wearing the compression stockings, the bio compression boot at night for 1-2 hrs., compression stockings during the day, etc., etc.,etc…..I am very active-go to the gym 3 times per wk, I swim 1/2 mi 2 times per wk -I bike 20 miles a couple times per wk—-I play golf–so like you, I am active–How can all of this heartache occur from removal of 6 lymph nodes????? We all have 600-700 lymph nodes in our body How could the removal of 6 lymph nodes cause this much headache and heartache??.

      I wish something could be done with stem cells–plant stem cells in my groin and maybe they could grow to be lymph nodes—-hey, you never know–maybe one day no of us will suffer the physical and psychological load of lymphedema—“praying for a remedy”

      • At least they seem to be looking for solutions.. It is hard to understand .. I had 22 nodes removed and then as cancer was in one I had to have radiation.. The Lymphedema came up almost straight away.. When they did tests pre surgery this year I had one node in the groin of the bad side.. Seven in the good side and only one in my left knee!!! So what happened to the knee ones or did I never have them and that is why I have LE??? hence transfer went into the knee as Dr felt that was the best place … Not sure about that as my rehab from the surgery to knee has been huge… I am at last back to going on long walks and swimming again but I do not have full strength … Has it helped???? I think so but not as I would wish but only time will tell if the nodes grow over the next few years… I have to say I am so over everything you have to do 24/7 to keep it in order!!! Oh for a miracle!!! But what is great I now have people to relate to that really understand!!!

        • You most certainly do have people to talk to about this condition–I have never cried so much or felt so alone as I did this past year when I realized I had lymphedema. I didn’t know about the blogs and I felt I had no where to turn except the web sites under lymphedema. Finally, about 2 weeks ago, I found a web site under google that said, “My lymph node transplant”.–From that moment on, I have not left this page except to minimize the screen to come back to it later. My AH HA moment….

          I do everything I can to stay active and upbeat but sometimes I cave- in wondering, “is this IT for the rest of my life?” Despite how physically strong I am now, I wonder,”How am I going to be able to pull up this compression garment which is the half panty and compression stocking when I am 80 years old?” it takes a lot of strength and I have to wear rubber gloves in order to get a good grip. Lymphedema takes away so much of the joy in everything. I used to enjoy–shopping, or being able to throw on a pair of cut-off jeans or Bermuda shorts to run to the store….summer is here and I love being outdoors but all events are so much more complicated now. Of course, I do say, “I’m happy to be alive!” although there were plenty of moments that I wanted to amputate my leg, The thought that my right leg is also at risk, totally blows my mind……I could not handle that right now—I guess God only gives you what you can handle but what made Him THINK I COULD HANDLE THIS????

          As I read thru these blogs, I do feel empowered and inspired to continue looking for a procedure that I feel confident about—right now, I’m still hesitant because I don’t want to make anything worse…I’ve kept my weight stable by continuing to be active and portion control in food. My clothes size has remained the same except that my left leg is more snug in a pant leg than the right. Thank God for our on-line technology and our ability to connect with people who “GET IT”–

          • My email is it may be easier to stay in touch that way.. Yes rubber gloves a must have accessory!!! Fear of the other leg blowing up rear of getting old and not being able to manage… Gosh all of that. Yes I think at the moment these surgeries are so new and to be able to give them time would be good .. If they pass the Lymfactin for use with surgery I think that would be a big plus for the future.. Every surgery brings them more knowledge.. I think why this blog works is it is written by real people with real issues and some of the others I follow too.. Websites are by therapists and the medical profession so do not get the emotions… Helen

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