Reflecting! Am I Crazy!!!

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 a month of radiation which would have destroyed more of the lymphatic system.

For the past 11 years i have had no relapse of the cancer, regular check ups have all gone well. I finished my radiation on the 4th February 2002 and by the end of February I started to see a slightly raised area from the groin outwards. At first I did not realize what it was but in a few weeks this swelling had spread down to my toes on the left leg and down the inner thigh on the right leg and even my tummy and groin area were effected. This for me was the start of living with Lymphoedema and the daily battle to manage it. This takes a toll both physically and mentally far greater than many would realise. I remember arriving at my doctor’s office one day and slamming down a whole pile of referrals that I needed and breaking down in tears. It was so hard to get help and the internet was a scary place where lymphoedema was concerned eleven years ago. I imagined my legs getting bigger and bigger. It was a nightmare that I did not need.

Fortunately I found out about an awareness day at Westmead Hospital and there at last I found some help. I had Complex Bandaging at Mt Wilga Hospital in Horsby with Dr Helen Mackie for five weeks and was fitted for my first compression garment. A real set of passion killers!! I had a black and a beige pair custom-made waist to foot on left side and to the knee on the right side… Complete with a lace trim!!! Whoo Hoooo!!!

Over the next few posts I thought I would continue to tell you what it is like to live with Lymphoedema, both good and bad. I think by the 14th March you will understand why I would agree to major surgery and at the same time convince myself I am not crazy!!

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

  1. Please keep writing. Your story mirrors mine so far, except that I also had six rounds of chemo. I am so tired of my compression garments and the daily battle to try to keep my leg drained.

  2. I am meeting with a surgeon on Thursday, 2/28, to discuss lymph node transplant surgery. I too have left leg lymphedema following removal of 15 lymph nodes during a radical hysterectomy for uterine cancer. I am so interested in following your journey since I am really worried about this surgery but I am also sick to death of lymphedema, the pump, the compression hose, the deformity and depression!

      • Hi — thank you so much for your reply. Yes this will be my first consult. I am in the United States (New Jersey) and the physician is in Philadelphia, PA. The Hospital will be Pennsylvania Hospital. Our local TV station ran a story about a woman who had the lymph node transplant for her arm done by this doctor that I am seeing, Dr. Kanchwala. Ten days after the surgery her two arms and hands were almost the same size! They did say it takes about 9 months to determine how successful the surgery is. The patient did say the recovery was more painful than she expected. From what I heard, this is a 7-hour surgery. Please keep me posted and I will do the same from here. So nice to accidentally find your blog. Bridget

        • Good luck and let me know your progress yes a 7hour surgery and nodes are coming from neck.. Here they also are starting lyposucton for those unsuited for transplant.. Patients will always have to wear a garment but gets size back to normal.. 😃😃

          • I will be in touch after consult on Thursday. I am scared but want my life to be better. The woman in our news story wears her compression sleeve but not as often as prior to the surgery.

  3. are you crazy you ask, we’ll yes just a little, but show me a person that is strong brave creative and compassionate that isn’t a tad mad ! So stay a little crazy and true to yourself, that how we love , just the way you are..
    As Alice said to the mad hatter when he asked ” am I insane” Alice whispered in reply ” yes totally bonkers, but to tell you the truth, all the best people are”

  4. Thank you for writing about this – So much suffering w the loss of nodes and it is difficult for others to understand. All the best to you as you countdown!

  5. Hi Helen,
    What an informative blog on an important subject! I will be keeping you in my thoughts. It sounds like we will both be in the hospital during the same week. Best of luck to you. Thanks for reading my blog and thanks for writing yours. I will keep reading and recommend your blog to others.

  6. Pingback: One Step at a Time! | My Lymph Node Transplant

  7. Reblogged this on My Lymph Node Transplant and commented:

    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…

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