Year of Wellbeing blogger: Gaynor's story

I am Gaynor Leech and I live with an incurable, life-long condition called lymphoedema. I was diagnosed with Breast Cancer late 2010 through a routine mammogram.

I went through all the shock and upset that cancer brings to our lives, luckily for me it was caught early and after a small operation to remove the offending tissue my prognosis was good. In December 2010 my breast care consultant told me to go home and enjoy Christmas and the next 20 Christmases.

At the time there was great elation, but it had been suggested I had radiotherapy treatment just to make sure there were no cancer cells left lurking. In the early part of 2011 I received my radiotherapy and compared with many of my friends it appeared I had sailed through this treatment apart from extreme tiredness.

Little did I know at that time the massive lifestyle change that was waiting for me. In May 2011 I had a routine appointment with the oncologist. I described the symptoms I was concerned about, she said she was sorry, but as a direct result of my radiotherapy I had developed Lymphoedema. My reaction: “Lymph-what?!”

Now I am one of these people who must understand what my illnesses/conditions are, how they are going to affect me, my family and friends. I ask myself: “Is there anything I can do to make things better? So, I researched, collected and typed out reams of pages for nearly two years. There were two things that stuck with me, the lack of information and understanding within the medical profession and the long list of do’s and don’ts and precautions I needed to take.

This is where my life took a turn that I could never have imagined
In September 2013 I had enough information to start a website and a Facebook public page, then in May 2014 I created a closed Facebook support group. Those very early days I had zero computer skills, no direction or understanding of what I was trying to do other than anger to make sure nobody else who was diagnosed with lymphoedema experienced the overwhelming angst that I did. I didn’t even know whether it was possible to run an online support group on Facebook.

L-W-O (lymph-what-oedema) website averages just under 2,000 viewings per week. The support group grew from initially 37 members to now over 1,100 and with other social media like our children’s group, Twitter, Instagram, LinkedIn, Pinterest our Facebook page we are now approaching 3,000 members, followers and supporters. Even more astonishing we have a global presence.

Anger = Determination = Passion

There have been pitfalls, knockbacks and criticisms but somehow this all became part of the learning curve, slowly the anger turned to determination and eventually a passion to raise awareness of lymphoedema. Remembering all the time that I am living not only with lymphoedema but several other health issues. There are days when it is a struggle to get out of bed.
Through all this L-W-O has evolved from the singular lymph-what-oedema to L-W-O Community we have a strong online presence and we often attend Health and Wellbeing events out in the Coventry and Warwickshire area.

Would I have imagined any of this when I was first diagnosed with lymphoedema? Absolutely not. My computer skills have improved massively mostly self-taught with a little input from my grandchildren. Most importantly I get to meet the most amazing people often living with their own challenges.

In 2018 I was nominated to go on a day’s training with the Year of Wellbeing, it was a great meeting with community friends both old and new. It was a day full of laughter and learning about how to tell our stories and get a message that there are people who can help with your daily challenges and most of all with isolation.

Through the Year of Wellbeing I was invited to go on a Radio Interviewing Skills Workshop at Radio Plus learning the basics and proudly, scarily being interviewed for the first time and having that interview broadcast.

As I said earlier I am one of these people who must understand my illnesses/condition and this has led to me being a Self-Care Champion which is not only something I can promote through L-W-O for our members to help make living with lymphoedema easier. I also believe we have a duty to take care of ourselves as best we can. This might be an insurmountable task for some of you but tiny lifestyle changes can help with this. The key things? Eating healthily, drinking enough water so that you don’t become dehydrated, get moving and don’t become isolated so make sure you talk to someone every day.
 

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