Lorraine's Lymphoedema Control

My name is Lorraine Lynn Wood, I am very happily married with two sons and two wonderful daughters in law, and in April will become a grandmother for the first time.

I have been asked to share with you my experiences about my efforts to control my Lymphoedema, so I will start at the beginning with my diagnosis of breast cancer in February 99. Like everyone given this news I was devastated. I was given lots of books and brochures to read including one on Lymphoedema. I must admit the thought of getting that on top of everything that had happened to me really gave me a good fright, but I managed to put it somewhere in the back of my mind and tried to get on with my every day living.

After I had finished my radiation treatment my husband and I took a nine week overseas trip. Primarily to show my parents and relatives in England that I was O.K. I made sure that I did all the right things on the plane as I was told plane travel could cause Lymphoedema. I wore a compression sleeve and glove and did all the exercises I was shown to do and my wonderful husband Robert massaged my arm for me every couple of hours, He also made sure I got up and walked around the plane at every opportunity to keep the circulation going which is very important on plane trips and long car journeys.

My arm survived the 24 hour trip and the trip back home to Sydney, but then in October 99 just when I thought every thing was going to be fine I developed Lymphoedema in my left arm. That was eight months after the removal of my lymph glands .I can’t think of any reason why I should have got it then but like breast cancer it does not discriminate between the good or the bad things we do, it sometimes just happens, and as we know we can’t say who will or who won’t get it, but once you have developed Lymphoedema we have to get on with helping ourselves get it under control.

My way of helping myself is I allow 20---25 mins in the morning and in the evening to do self massage, to me now it’s as routine as cleaning my teeth or taking a shower. The self massage is not hard but it does get a little boring at times, so try doing it while your watching the television that’s what I do sometimes. All you have to do is pick a time that suits you the best. I find that first thing in the morning when everyone has left for work or late afternoon before they arrive home, or last thing at night when everyone has gone to bed but I find that time. Because I believe we have to allow ourselves this time out. Lets face it if we don’t do this for ourselves there’s no-one going to do it for us. I have been doing the self exercises since November 99 and I’m glad to say my Lymphoedema is well and truly under control.

I can now choose when and if I wear my sleeve. I put this down to my commitment to the exercise program and to always finding the time to do them, and of course wearing the compression sleeve and glove prescribed to me by O.P.therapist Louise. Louise stressed to me just how important the self exercises were, she actually told me once a day but I thought if once a day is good twice a day has to be better. Louise gave me lots of time, support and encouragement, as have all the staff I have been involved with at Westmead hospital and through the breast cancer support group with Beverly Hunt at the Parramatta branch

I have also started with a group called Encore which I have found to be a great help with flexibility, this program covers gentle floor exercises and pool exercises and is very good the program is especially for women who have had breast cancer, we all have a good time. Encore is run by the Y.W.C.A I also walk and swim as these activities also help the circulation and I use a small stress ball to help muscle movement.

I truly believe that a positive outlook on life and to look at all the good things our lives have been blessed with go a long way towards a healthy mind and body, don’t just dwell on the negative.

Remember don’t let Lymphoedema take control of your life you have to take control over it, and don’t just rely on your therapist and all the good work they do, you have to do this for yourself.

Occupational Therapist Louise Koelmeyer presented Lynn with a certificate of appreciation from the BCI after she gave a talk on Lymphoedema from a Patient's Perspective at the Lymphoedema Information Day.

I attended a Lymphoedema Information Day on 18-March and one of the comments Prof. Neil Piller made was, "Ask yourself what have I done to help my limb today". If the answer is nothing then you can’t expect to see any improvement in your limb .I think this is a very important point to remember. So be positive and work hard at it and see the results as I have .I know it can be done.