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L-W-O Community

Primary, Secondary & Paediatric 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 dedicated to all of you 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 I write as a patient. See our disclaimers as the bottom of the page.

 

 

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. 

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

Tell my story

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.  

 

 

Our History Series

Page last updated 19/05/2020