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Lymph-what-oedema

Support for Primary & Secondary Lymphoedema

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About Me

Hi I am Gaynor Leech and I started this website in September 2011 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.

The Challenge of Diagnosis

Mixed Emotions

Choosing a 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?" 

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 Journey

The above was why this incredible lymphoedema journey started.   This website continues to have 'viewings', and in addition there are 2 Facebook pages.  The first Facebook page was set up in September 2013 and is a community page open to the public for everyone to see.

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

L-W-O Facebook Community page provides information for public use and raise the awareness of lymphoedema.

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, until recently it has run itself. We have some lovely positive members.  

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

Independent not for profit

I had funded the groups and website out of my own pocket.  The growth of L-W-O has been phenomenal but for me personally this became unsustainable. 

In January 2016 Lymph-what-oedema became an Independent not for profit organisation.  L-W-O has its own constitution and four trustees. The trustees decided it would be easier to use the initials L-W-O.  Five logos were designed and the members chose to adopt this one.

I am delighted with the success of L-W-O and humbled by our achievements.  Now with the support of our online admin team and our trustees we will work to raise the profile of lymphoedema.

Click on this link Mission Statement

 

Welcome to L-W-O

LYMPHOEDEMA IS

  • Health problems are often underestimated.
  • Many health-care professionals do not understand lymphoedema.
  • 1 in 5 might get lymphoedema after cancer treatment.
  • 75% of lymphoedema is non-cancer related.
  • 25% is cancer related.
  • 2 times more common than Parkinson's Disease.

Source

Source: the descriptions for Primary and Secondary lymphoedema were taken from the leaflet published by Lymphoedema Support Network (LSN) July 2014 on Recreational Exercise and Movement with Lymphoedema.  A copy of this leaflet is available free to all LSN members Tel: 020 7351 4480 or got to their website:  www.lymphoedema.org

Source: as of July 2014 LSN research suggests that lymphoedema affects at least 240,000 men, women and children in the UK.

Knowledge is power

Knowledge shared is power multiplied

Together we are empowered

Unanswered Questions

Personally, I do wonder how many cases are under diagnosed?

If our health-care professionals, don't understand lymphoedema, then they find it difficult to diagnose.

If lymphoedema is not part of the training for our health-care professionals, how can they devise a treatment plan?

Will the statistics change for Primary and Secondary Lymphoedema if secondary lymphoedema continues to grow? 

We are repeatedly told by our health-care professionals that there is no pain associated with lymphoedema.  L-W-O have 770 plus members that beg to differ.  Our members live with this condition.  How can someone who doesn't live with this condition tell us how we feel?

One of the most underestimated problems with lymphoedema is the mental health problems it causes.

These are questions that myself and our members on L-W-O ponder!

Our American friends call lymphoedema a disease.  In the UK we call lymphoedema a condition.

Therefore, I ask myself? If we in the UK call this a condition, then by the very term 'condition' do we downgrade the seriousness of lymphoedema. 

My personal view is because of the lack of knowledge amongst many of our health-care professionals and often their dismissive attitudes to those of us living with this debilitating condition we will struggle to be taken seriously.

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.  

Learning Curve

This whole journey has been a valuable learning curve.  I love the tips our members bring to the group, how they talk and support each other. Whilst some days our members don't feel good, they are a very positive group. Join us, copy the link into your browser;

www.facebook.com/groups/lymphwhatoedema

We are on Pinterest

www.pinterest.com/lymphwhatoedema

 

Our aim is to be

Caring

Informative

Positive

Supportive

A ladder to climb

L-W-O would like to see this website as a place for patients to come and gain a better understanding of lymphoedema.  It is important to understand that lymphoedema is not a disease or illness but a lifelong condition that all of us can learn to live with. 

Often the steps will be slow and painful but together we will climb one rung at a time.

Lymphoedema is:

Signs and symptoms

Signs and symptoms can vary in each person however, swelling, a feeling of heaviness in the arm, leg, chest area, redness, clothing or jewellery feeling tighter than usual should all be checked out with your GP. 

With me it is always a heavy dull ache, sometimes a warm sensation and some of my friends experience pins and needles.  My symptoms are controlled with Manual Lymph Drainage (MLD) this is done at the local Hospice in the lymphoedema clinic by specialist nurses. 

Simple Lymph Drainage (SLD) I have been shown how to do at home.  This keeps my lymphoedema under control and is easily managed.  This is something we can all learn to do.  Please ask your Lymphoedema clinic to show you how.

WHAT IS LYMPHOEDEMA?

There are two types of lymphoedema, Primary and Secondary.

  • Primary lymphoedema develops as a result of a fault within the lymphatic system usually as a result of genetic underdevelopment or weakness of the lymph conducting pathways.  It can affect men, women and children at any age.
  • Secondary lymphoedema is the result of damage to lymphatic pathways.  This may be the result of treatment for cancer following surgery or radiotherapy?

It can occur as a result of infection, severe injury, burns or any other trauma that can damage the lymphatic nodes, vessels.  It can also arise as a result of the venous system not working efficiently i.e. those who have a deep vein thrombosis (DVT), varicose veins or ulcers.  Those patients suffering from lack of muscle movement i.e. those suffering from a stroke or Multiple Sclerosis may also be at risk. 

Treatment

Lymphoedema is an incurable, life-long condition that is managed and treated through various massage techniques, gentle exercise or movement and the daily wearing of compression garments.

Healthy Steps

Living with lymphoedema

Lymphoedema takes a while to come to terms with, as you do, the more positive you can be about your condition then the easier it becomes to live with.  Please remember that lymphoedema is manageable with the right treatment.

As far as I am aware there is very little psychological help for those of us living with lymphoedema.   A support group like L-W-O is invaluable to those of us living with this condition.

L-W-O members frustrations

The Members Support Group on Facebook have identified the concerns, they worry about. 

  1. Waiting times for referrals to be diagnosed
  2. Waiting times for treatment
  3. Health-care professionals not aware of the risks of infection associated in patients who have had lymph nodes removed through surgery
  4. Repeatedly explaining to health-care professionals why no BP/Blood tests, injections, IVS or any other invasive procedures from affected side
  5. Clinics that are short-staffed
  6. Therapists who are stressed and over-worked
  7. Lack of trained therapists
  8. Areas of UK where there are no therapists
  9. Patients having to pay for MLD
  10. High cost of treatment preventing patients getting care

This is a selection of the worries L-W-O online support group members voice on a regular basis.  This all adds to their stress levels and as you will see on this website: 

STRESS IS NOT GOOD FOR LYMPHOEDEMA

L-W-O members would like to see Medical Alert Cards or wristbands issued on diagnosis.

I have lived with lymphoedema for 5 years 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 we are taking small, positive steps to help all of us that live with this condition.

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

Abbreviations

I find that when discussing certain aspects of lymphoedema we tend to talk in abbreviations therefore some of our newly diagnosed members aren't familiar with the terms we use.

AB'S - antibiotics 

DVT - deep vein thrombosis

LE - Lymphoedema

LWO - lymph-what-oedema

MLD - manual lymphatic drainage

MLLB - multi layer lymphoedema bandaging

PALS - Patient Advice & Liaison Service

PMA - Positive Mental attitude

RLD - reflexology lymphatic drainage

SLD - simple lymphatic drainage

SE's - side effects

Volunteers

We need volunteers

As we take on more community work we will need volunteers to help share the work.  If you are interested in becoming one of our Community Ambassadors or Volunteers, click on the links or contact me Gaynor Leech at:

lymphwhatoedema@gmail.com

 

Member of NCVO

L-W-O is a member of NCVO (National Council for Voluntary Organisations).

ncvo.org.uk

 

Page last updated 17/03/2017