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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Raising Awareness of Lymphoedema

Not only do I write about lymphoedema but in June 2019 I was very privileged to be interviewed by Sandra Godley at BBC Coventry and Warwickshire radio here is the link to the clipped version.

 

 

 

About Me

Hi I am Gaynor Leech and I started this website in September 2013 having lived with Secondary lymphoedema since May 2011.

This website is for all of you who are living with the lifelong condition of lymphoedema.  Please remember I am a patient, I learn as a patient, I read as a patient, I speak as a patient and write as a patient.  All the material on these pages is set out in good faith.  Thoughts and interpretations are mine.  Every effort has been made to acknowledge sources throughout this site.

My diagnosis

When I first started this website there was a leaning towards secondary lymphoedema because I live with this.  However, it soon became clear that those living with primary lymphoedema need as much support, if not more.  Why do I say this?  Because many of the secondary lymphoedema cases are a direct result of cancer treatment and either have access to NHS services or Hospice services.  Although these services can also be patchy.

The care and treatment for both primary and secondary lymphoedema follow the same principles.  If you have primary or secondary lymphoedema the information on this website is relevant to both conditions.

My Referral

I was referred to the lymphoedema clinic at Mary Ann Evans Hospice.  My first appointment was within two weeks.  Initially I had MLD treatment every other day, then weekly and for the next two years my treatment was every two weeks. The lymphoedema clinic is now running at capacity therefore the frequency of treatments slowed down.

My nurse taught me how to do SLD.  This I do every day after my shower, along with moisturising which keeps my skin in good condition.  There are areas I can't reach and lymph fluid builds up and feels sometimes as if I either have a golf or cricket ball under my arm. 

My trusty paint roller is a wonderful way of reaching parts I can't, or I can ask a family member to help with.

The treatment I receive at the Hospice, my daily routine of SLD, moisturising and Healthy Steps classes organised by the lymphoedema clinic at the Mary Ann Evans Hospice, kept it under control.  If hadn't had this help and support, I hate to think what state I would be in.  Even with all the treatment I received, I still get, the constant dull ache that often turns to pain.  Often debilitating.  As far as I am aware there is no help for the psychological effects of lymphoedema.

Sadly, after eight years I was discharged from the hospice  because I am deemed to be able to look after myself.  

My life rules

Since developing cancer and lymphoedema, I decided I needed to take more control of my life.  I do my best to stay positive which sometimes is difficult with the daily challenges lymphoedema brings.  Here are a few new rules I created for myself.

N - O, means no

Go away I need to sleep

I need 'me' time

Question everything

Take no nonsense from anyone

Research everything

Smile at everyone
 
Give out hugs
 
Celebrate being alive
 
 
​Biggest learning curve. never judge the way someone looks, you do not know, what challenges they are facing with their health.  Please remember that not all illnesses or disabilities are visible.

My research

I have a real bee in my bonnet about the initial lack of education, knowledge, promotion and ignorance of lymphoedema that I came across when I was first diagnosed.  For me learning about lymphoedema has made it easier to deal with.  I am absolutely gobsmacked at how little is known about lymphoedema and that certain areas in the UK have little or no support.  

In the beginning I was given information to read but my need to fully understand my condition led to lots of reading and research online, some of it good and some not so.  

 

The L-W-O Name

I was diagnosed with Breast Cancer in November 2010 and after going through an operation and radiotherapy I thought life would gradually get back to normal.  However, my breast and surrounding skin were beetroot red and the skin was very hot to touch.  I thought this was normal and that I was just taking longer than others to heal.  This is unusual for me as normally I heal quite quickly but then I didn't know any different, I hadn't had radiotherapy before.  When I had my routine check-up after radiotherapy I was informed by the Oncologist that I had lymphoedema.  I needed an appointment with a lymphoedema nurse specialist, urgently.  I vaguely remember looking at the doctor and saying:  

​"lymph what?" 

The L-W-O Journey

L-W-O has had an incredible journey and never would I have imagined in those early days that being diagnosed with lymphoedema would have lead me to creating a community to support other livings with this debilitating condition. 

Our website and Facebook Community page was set up in September 2013 and both are our public face.  The website is averaging 3000 viewings per week and our community page is reaching more people than ever who live with both Primary & Secondary Lymphoedema.  You will find our public community page at:  https://www.facebook.com/lymphwhatoedema

This website provides information that promotes the well-being and self-care of lymphoedema patients, giving non-medical tips and advice.  L-W-O recommends always that you contact your own health-care professional.  Please read the medical disclaimer at the bottom of the page.  

In May 2014, I was asked by those who visited the community page to set up a Facebook Members Support Group, this is a closed group and therefore more secure than the community page.  This allows our members to talk more openly about their condition.  I did wonder whether it would be possible to run a support group online, however, the support group has over 1100 members.   We have some lovely positive members who share information and support each other.  L-W-O continues to raise awareness of Lymphoedema.

Your will find our closed online support group at:  https://www.facebook.com/groups/lymphwhatoedema

From September 2013 - January 2016 I funded the website, online support group and community page.  This cost me personally and financially became unsustainable  The hours I have devoted to L-W-O are incalculable. I do not receive a wage/salary.

With the help and guidance from Warwickshire Community and Voluntary Action (WCAVA) it was decided I would become a small independent non-profit.  This has been done to cover all the running costs and will give us subscriptions to other lymphoedema organisations and allows me to go to conferences that specifically relate to lymphoedema.  It will also help towards financing future events so that we can to raise the profile of lymphoedema and bring together those living with this condition in the community.

L-W-O is invited to several meetings and networking events that gives us an opportunity to work with other organisations who are interested in the raising awareness of lymphoedema. 

 

                      

 

Pictured above a few of our lovely members enjoying our Lymphoedema Awareness Day in May 2016.

 

Running L-W-O has led too many new opportunities and 2017/2018 were phenomenal years for our small group, I was invited to many events in the communities of Bedworth, Coventry, Nuneaton and Birmingham.

We now have a high social media presence with our Community page growing as are our Twitter and Instagram accounts, which means we have in the region of 2000 members, followers and supporters. Our growth never ceases to amaze me and I am humbled by the support that L-W-O continues to receive. Having being diagnosed with Breast Cancer, then further diagnosed with Lymphoedema was devastating however, my anger has subsided to a passion to raise awareness of lymphoedema so that nobody else will suffer the angst I did in those early days. If I help just one person live with lymphoedema then my journey has been worthwhile.

I am member of the British Lymphology Society, a member of Lymphoedema Support Network, Affiliate of  International Lymphoedema Framework and actively work across Coventry & Warwickshire and online to raise awareness of lymphoedema.

Interviews

In May 2019 I was interviewed by Grapevine Coventry & Warwickshire who have been extremely supportive of the work, challenges and growth of L-W-O this was how they wrote about me titled "From Self-doubt to Self-belief"

 

In March 2019 as part of World Lymphoedema Awareness day I had a conversation with Alexa Ercolana of The Lymphie Life, this was a new experience for me so have a read at my journey:

Page last updated 23/06/2019