Having a sense of humor has at times been essential over the last eleven years. Without it I would have sunk into a big black hole never to get out, although I did at one stage have anti depressants for six months. An Incident like the one I will relate to you could be viewed with doom and gloom or seen as a funny little episode.
Self massage is one of the ways to help move the lymph around the body away from the affected limb. Lymphatic massage is a special technique where you stimulate the lymph nodes in the neck and under the arms, then with gentle upward sweeps you move the lymph towards these nodes. The same processes is then used for the leg to bring the lymph up towards the underarm lymph nodes. There are plenty of videos on You Tube to demonstrate this. When I was first diagnosed I was very eager to do this daily. I was under the impression I knew what I was doing!
Early one Saturday I woke with a very sore left breast and had to go to the hospital. After the usual long wait I was sent in to see a doctor. Having had my surgery and radiation at the same hospital I assumed that they would have some history on me. Imagine my amusement when the doctor asked “So when did you finish breast-feeding”. My quick reply was “Sixteen years ago!” To say the least she looked very embarrassed, when I gave her a quick run down of my cancer treatment and subsequent lymphoedema! It turned out I had given myself mastitis by sweeping my hand across the breast instead of under the arm, a mistake I never made again. I left the hospital with antibiotics and a smile on my face because the doctor thought I was young enough to breast feed!!!! Amazing how small things can cheer you up!!!
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Just 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!!
Eleven years ago, just before my 50th birthday, I was diagnosed with Cancer of the uterus. To say I was shocked is an understatement as I had not been particularly ill, just a few aches and pains! This is not a cancer blog so I will skip over those details and concentrate on what is relevant to my Lymphoedema. I had not heard of lymphoedema at this stage but I do remember asking the doctor about having the lymph nodes removed, as part of my surgery. I felt they could be something I still needed! His reply was very much to the point…. “Its better than being dead”. During Surgery, for a radical hysterectomy, 22 lymph nodes were removed from my groin area. This was followed up with radiation to the pelvis which would have caused more damage to the remaining lymphatic system.
On leaving hospital I was given a bookmark which told me how to avoid getting Lymphoedema as my lymphatic system was now compromised. At that time in the big picture of life it felt as if the cancer fight was far more important. Little did I know that Lymphoedema was to become my life after cancer.