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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

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 2 weeks.  Initially I had MLD treatment every other day, then weekly and for the next 2 years my treatment was every 2 weeks. The lymphoedema clinic I go to is now running at capacity and my treatment has been moved to once a month.

My nurse taught me how to do SLD.  This I do every day after my shower, along with moisturizing 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, moisturizing and Healthy Steps classes organised by the lymphoedema clinic at the Mary Ann Evans Hospice, keep it under control.  If I didn't have all this help and support, I hate to think what state I would be in.  Even with all the treatment I receive, I continually 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.

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 too 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?" 

My feelings

I have lived with lymphoedema since May 2011 and consider myself extremely lucky that even with the challenges my lymphoedema causes me, for the best part mine is managed and controlled.

Has the anger subsided over the lack of support, education and ignorance re lymphoedema?  Yes, I think it has, however, I have developed a passion to get the word out there and I do feel that, through L-W-O we are taking small, positive steps to help all who live with this condition.

L-W-O Raising Awareness

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 contents of these pages are designed to give you the reader a reference to return to quickly without having fact sheets lying all around your home.  You can never find the one you need and in the end you put most of it in the bin. I would like to think that L-W-O has done some of the work for you.  However, please remember everything is written from a patients point of view. 

Lymphoedema has been around for a long time and I am totally frustrated by the lack of funding in the NHS for this growing condition.  Some of the NHS areas that have had funding, are now having their funding cut.  This is short-sighted.  Secondary lymphoedema receives more funding than primary lymphoedema. 

The website and online support group is reaching into places that I couldn't have dreamed of when I started this journey.  There is still a long way to go.

I am thrilled that our members now feel confident to inform their own GP's and MP's and help to get the word out that Lymphoedema exists, we exist.

Please, at all times, consult your own health-care professional.  

Page last updated 21/09/2017