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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Brilliant May

As I start this blog I realise that I didn't write one in April or May, simply haven't had the time.  LWO is growing fast.

The Community Facebook page which is our public face has had 200 likes and our Online Support Group now has 454 members.  The website continues to have viewings on average of 130 per day.

The Online Support Group continues to flourish and during the month of May myself and members added various different articles aimed at increasing our understanding of Lymphoedema.

Articles covered:

  • Helping children with Lymphoedema
  • Sentinel Node Biopsy
  • Management of Breast Cancer Lymphoedema
  • Give your mind a rest
  • Cheap/free prescriptions
  • Foods which burn the most fat
  • Two articles on the importance of drinking water
  • Foods to Eliminate Joint pain

Many of the articles were shared via The British Lymphology Society Facebook page.

Topics of discussion:

  • The battle for antibiotics
  • Importance of being diagnosed early
  • Dangers of a 'simple' paper cut
  • Lymph Glands
  • Compression garments
  • Sock Glue!

A wide range of topics discussed by members of LWO with lots of advice and tips shared.

Karen, who volunteers on Admin on the Online Support Group, has devised a Poll asking which type of Lymphoedema members have.  This is proving to be informative and popular.

Our 1st Birthday cake

The highlight of May had to be our 1st birthday for the Online Support Group and the Lymphoedema Awareness day that was held at the Mary Ann Evans Hospice.  I cannot thank the Hospice enough for their help, support and encouragement.  Without the Hospice this day wouldn't have taken place.  Our lovely cake was made by one of the Hospice's nurses,  thank you.

I started the day with a welcome and a positivity exercise that was very well received.  Trulife then took over with a demonstration of their products and their team were available until about 1.30 p.m. for fittings.  The Healthy Steps demonstration by the Hospice nurses was a great success and instead of just watching most of the group stood up and took part.  Good fun, the exercises are specifically designed for those with Lymphoedema. 

Medi sponsored lunch and then talked about skin-care.  We had a couple of videos and the one on Skin brushing was very well received.  There were lots of information sheets for people to take home.  The day was aimed at getting those with Lymphoedema together so that they could talk to each other about how they feel and cope with this condition. Everyone agreed that this was the best part of the day as there were lots of opportunities to do so.  The Hospice's senior Nurse Specialist took part in several question and answer sessions, these were also well received.

The Hospice organised evaluation feedback forms,  the overall evaluation was rated high.  Donations were received for the Hospice for which we were both grateful.

On a personal level I was thrilled with our first Lymphoedema Awareness day.  Meeting all the lovely people who attended, the support from the Hospice made all the hours of organisation worthwhile.  Finally note to self.  You are not Superwoman!!  I must have slept for days after. Apparently I have been informed we are doing it all again next year. 

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