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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.  (I am hoping soon to replace this interview with a new one).

 

 

 


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. This was infuriating for me and now I want to see all lymphoedema services in the UK being accessed through the NHS.   You would not leave a diabetic patient without medication.  Why should someone who is diagnosed with lymphoedema be left without treatment, compression garments and support?

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.  

After spending a lot of time researching lymphoedema and typing notes I decided I would start a website and a Facebook page the latter is now our public face.  This was followed in 2014 by an adult support group and in 2017 our families support group and 2020 our family’s website.

I started L-W-O Community with no direction, no tech skills and lots of obstacles as to why a patient with no experience apart from living with lymphoedema should start a group like mine.

However, we have grown, and we continue to grow and as you will see from our campaign, we now have the support of many individuals and organisations alike.  Over the last 12 months I have been comfortable in becoming a patient advocate and I love working with other patient advocates many of whom have become friends.

 

 

Our History Series

Page last updated 28/02/2020