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L-W-O Community

Primary, Secondary & Paediatric Lymphoedema Online & in the Community


New Year - New Challenges 2021

Author Gaynor Leech, Founder of L-W-O Community





With Christmas and New Year firmly behind us we start looking at the challenges that 2021 has for us.  During the break I managed to keep the laptop off 99% of the time only using it for some personal business and my mobile phone was also noticeably quiet and I felt that I had a break over the festive season.

Anxiety is high amongst most people I talk to and people are extremely weary of mixed messages and the general situation not only in the UK but across the world.  Support groups generally not just L-W-O’s are quieter than usual even allowing for the festive break there is little interaction on lymphoedema but the messages we post on mindfulness, anxiety and not getting angry or beating yourself up, have had a bigger response.  Therefore, mental health issues have clearly become a big issue.


Time Observations

The first has become ‘time’, not because we do not have enough hours in the day, but because the days have rolled into one, there used to be a clear distinction between morning/afternoon/evening and Monday to Friday then weekends, now everything appears to roll into one.  The second observation is that daytime seems to be very dark.  I am fortunate to live in a house with nice big windows that let in a lot of natural light, but I cannot remember a time in over 30 years that the lights have been on some mornings until 10 o’clock and often put on at 3 o’clock in the afternoon.  Is this just me?


Echo Dot

My youngest son bought me an Echo Dot for Christmas and Alexa has become an especially useful tool, great for shopping lists, reminding me to close windows, minor tasks around the house especially for hubby, as well as instant music.  We have also had a few giggles such as she interpreted adding 'oxo cubes' to the shopping list as “absolutely cute” and the Grandchildren think it is funny to tell her to make rude noises 20- or 30-times which Alexa seems to do with gusto!


Reorganising & Adapting

I started back on the 4th of January with nothing in my diary, slightly earlier than past years and by the 8th of January my diary filled rapidly with courses, webinars and zoom meetings including more invitations to write.  With so many people now using the internet my normally reliable broadband let me down and, on several occasions, it became impossible to do anything and I did miss two important meetings and home-schooling was impossible.  This has meant, I have had to upgrade my package, which has added an extra cost which I certainly do not need.  L-W-O Community will be grateful any donations so please support us:

Although running L-W-O can be a fulltime job – please remember I do not get paid, I am a volunteer the main work is done on Monday, Wednesdays & Fridays which coincides with my hubby going to golf and of course he cannot do that in this lockdown.  Monday and Wednesday, we are now home-schooling and entertaining our two youngest Grandchildren as both their parents are keyworkers with their Mummy having to teach from home.  I am still adapting to reorganising my time as family always comes first.


Our Changing role as Grandparents

How things have changed from 20 years ago when I used to have my older Grandchildren who are now in their 20’s.  Then it was gardening, painting, crafts, outdoor play, and no TV which meant as Grandparents we taught through love and play. Fast forward to 2021 and we are Teams home-schooling, little outdoor play because of the weather and far too much TV.  Coco Melon and Frozen are on TV permanently, I think hubby is quietly enjoying learning all the children’s songs because he was always at work when our children and older grandchildren were small, and 40 years ago daytime TV was not a big thing.  We are far more tired now and the realisation we cannot do what we did 20 years ago has hit home hard, thank goodness that Hubby is retired to share the work.  The upside is that we are lucky enough to spend precious time with two of our Grandchildren and neither of us have a problem sleeping at night!


What does 2021 hold for L-W-O Community?

There is such a lot going on in the background with some exciting discussions.  I will be writing more this year and more articles will be published either on websites or in Newsletters of other organisations.  Discussions around LAW which is (Lymphoedema Awareness Week) and WLD (World Lymphoedema Day) are ongoing and I am hoping that this will lead to further working partnerships, please save the dates:

1st – 6th March - LAW - (Lymphoedema Awareness Week)

6th March – WLD - (World Lymphoedema Day)

I was excited to see L-W-O being added to the VASCERN app which is downloadable as one of 13 resources in the UK for lymphoedema and lymphatic malformations this was facilitated by Pernille Henriksen and our video promoting the app was designed by Mary Fickling.  This is an amazing step forward for a patient support group like L-W-O.  For those that do not know:

VASCERN is the European Reference Network on Rare Multi-systemic Vascular Diseases, is dedicated to gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare Vascular diseases (an estimated 1.3 million concerned). This includes arterial disease (affecting the aorta to small arteries), arteriovenous anomalies, venous malformations, and lymphatic disease.”


The above video designed by Mary Fickling


I am looking forward to attending the VASCERN open evening on the 29th of January 2021.

My understanding is that we are being added to another app as a source of information for patients and I will promote when I have the links.  I have also produced the following video for children living with lymphoedema who may develop cellulitis.




Training and courses will continue this year and the first one I took part in was on Friday 15th January, I attended my second CEmPaC webinar the subject “Core Skills to Support Self-Management”.   The importance of webinars like these is that we move away from the idea that the clinician knows what is best for us as patients and we take some responsibility for our care.  That does not mean we disregard what our clinicians are telling us.  As patients we want to be treated as an equal and with respect, we also want to have a say in our treatment and to be told about other options available.  The interesting part of this webinar was how close it was to the way we promote self-care in the L-W-O Community we would prefer supported self-care but that is in short supply at this time, so we will continue with our self-care tips. I have already started to write about this topic and how it can be incorporated into self-care for those of us who live with lymphoedema.  In the meantime, I have one article out for publication and a second almost ready to be sent out.  To conclude this blog I found this quote which I thought was relevant to how I feel about the New Year of 2021.


"There is no reason to stop and thousands of reasons to go further"  Nintin Namdeo


End of the year report 2020

Author: Gaynor Leech, Founder of L-W-O Community



Where on earth does one start writing about this year’s events.  After hubby and I saw in the New Year at a lovely News Year Eves party how could we begin to imagine what lay ahead.  On a personal family level hubby and I have had lots of ups and downs with our health.  The last three months we have been supporting my brother-in-law and sister-in-law through the mire that is social care in the UK.  A topic which I will be writing about in the New Year.  


L-W-O Community - As a group we have now fully transitioned to being L-W-O Community.  I had worked hard in 2019 at getting us recognised in my local community around Coventry and Warwickshire, so that we had reached the stage where we were being invited to local events to either to talk about lymphoedema or to take our information stand and be a part of bigger events.  One by one each event was cancelled and although this was a huge disappointment, the new opportunities that came our way have been amazing.  Our biggest asset from March on was that we had already established ourselves on social media therefore, we were not scrambling to catch up as we entered the new world of webinars, Microsoft teams and Zoom.


Support Group & Facebook Page – The support group has grown slowly, and we have a loyal, supportive membership.  There are so many more lymphoedema support groups now than when I first started L-W-O in 2013.  On our group for the most part the members have remained upbeat, but I am now detecting from their writing that mental health issues are beginning to rise.  Fighting to get the correct compression has been an issue as is the lack of clinic appointments with qualified Lymphoedema Health Care Specialists. It is wearing to constantly battle against a system that does not understand what it is like to live with a long-term condition like lymphoedema.  In an ideal world anyone living with lymphoedema would have supported self-care, but sadly this year for many this has not been possible.  Therefore, this year we have continued with a self- care theme and with our countdown to Christmas our posters have not only supported self-care but included mindfulness. 

Our Facebook page which is our public face was stagnant for a long time, but this year we have had a lot more organisations following us who have an interest in lymphoedema. 


Family Group – Our online family support group started the year with 72 families and as of December 2020 we have 107 members.  This is made up of 100 families and the rest are either Health Care Professionals (HCP’s), patient advocates or people with an interest in children living with lymphoedema.  Changing the name from ‘Children’s’ to ‘Families’ in July 2020 has proved to be extremely popular.  The family support group was established nearly four years ago.  Although the family group has grown, for any Facebook group to thrive it must be driven by the members and sadly this group does not participate as much as we would hope..  In the New Year I will decide whether to continue with this group or call it a day and just concentrate on the new family website. The family website launched in July 2020 and was something I had been thinking about since January 2017 I guess the events of this year gave me the push, I needed to achieve this.  The website is an ongoing project and like the rest of our community will grow.  In addition to this Michelle who is our Twitter admin launched a family’s Twitter account which we both look forward to growing in 2021.


Twitter – I have made no secret of the fact that I do not get Twitter and although my interaction has improved, I still struggle.  This year I thought it would be nice to hear from Michelle Donohoe our Twitter admin, passionate supporter of L-W-O Community, but also the personal support she gives to me is highly valued.  Michelle has a great sense of humour that comes across in her posts and I am thrilled that the feedback that I get on our Twitter accounts is that Michelle is highly respected by cancer and lymphoedema followers alike. This is what Michelle has written about the L-W-O Twitterland:

“I feel lucky, a strange statement to make considering the year we have had, but I do. Monday to Friday I interact with some exceptionally talented knowledgeable people. This year has been strange for everyone but observing how all health professionals and various organisations have adapted has been inspiring. 

The year’s first Twitter event is Lymphoedema Awareness Week in early March, it was slightly subdued compared to previous years but as the pandemic was gaining momentum that is no surprise. It is great to watch the buzz throughout the numerous Twitter feeds across the globe. There is a myriad of odd sock photographs from young and old as you are encouraged to #Sockit to lymphoedema! 

Our Twitter feed has been able to join in with a couple of campaigns, #EveryBodyCan from the British Lymphoedema Society encouraging mobility and fitness for all and #Legsgetloud from the Legs Matter Team. We endeavour to use #SelfCare wherever possible and as we have the self-care queen founding LWO that is no surprise.

We follow almost 500 accounts and invariably read about the struggles people have with their lymphoedema, how difficult it can be to gain a diagnosis and unfortunately how many people are ignored or left without support from their healthcare professionals. This year has seen more awareness of the late effects of radiotherapy and one of LWO’s members shared their experience of the years they have spent trying to have this recognised. I am hoping the acknowledgement of this type of lymphoedema, often genital will increase. There are many health professionals striving to remove the stigma of this type of swelling, it would be great to see a hashtag or day of awareness to highlight and increase support.  Perhaps a strange thing to be looking forward to I know! 

This year LWO Community created an additional Twitter feed for the LWO4families website and support group, on the Twitter side this is a little quiet, but it is early days and I concede I do not spend as much time to it as I should. The momentum is growing, and I will offer a more focused feed for those who are interested and wish to follow. Caring for a child with a complicated condition can be isolating, thank goodness for the internet as it enables speedy access to information and connection to others with similar conditions. 

I am in no doubt about the highlight of 2020 which was the response to the seventh year LWO anniversary, it was great to see messages of support for Gaynor’s work and see the Go Fund Me page total increase. Gaynor rarely stops working for the support group and Twitter is just a small cog in the machinery of our community. A big thanks to all who were able to contribute. 

This year I have seen Gaynor pull out all the stops, creating content for the social media channels, start a lockdown blog, report from the BLS virtual conference and continue to raise awareness and provide practical advice. Well done Gaynor, I marvel at how much information and advice you can fit on to our fabulous graphics!  I could go on but if you have got this far you deserve a break, a cup of tea or something more festive as I wish you a Merry Christmas and a Happy New Year!”

Author: Michelle Donohoe


Instagram – This year has not been the mystery it was 12 months ago which in part is thanks to my granddaughter Paris who came to teach me on several occasions on how to use it more effectively. Although like all social media if you are not constantly adding content then it quickly disappears from people’s minds.  Instagram is important to our group because this is where the younger advocates and those living with lymphoedema frequent.


Financial – This is my biggest headache.  I absolutely hate fundraising. The hours it takes to run L-W-O Community are incalculable and I do this happily. However, this year I have once again had to dip into my own pocket to run L-W-O Community.  Nobody realises more than me how hard it is to donate to a group like ours.  L-W-O has 3500 members, followers, and supporters, if every one of those donated £1 …

My priority has been to keep the websites and software up to date.  Thankfully all the community cancellations because of C-19 meant I could cut costs by not buying stationery and apart from a couple of events early in the year there were no travel costs.  In 2019 we had eight regular monthly donors we are now down to two. I am so grateful to those two that choose to donate this way they do provide much-needed security.  We also have approximately 20 people who donate regularly once a year and without their donations L-W-O would not be able to provide the services we do. 


Training – For those that have followed L-W-O from the beginning you will know that I am passionate about learning.  In the early days it was all about understanding how the voluntary sector works, what was acceptable for L-W-O understanding legislation surrounding how a small group like ours operates making sure that we displayed a degree of professionalism within our group. Protecting both myself and L-W-O’s members in the best way possible. It was extremely important to me that the Lymphoedema Community understood we were not here to step on anyone’s toes that L-W-O is a non-medical support group here to support those living with lymphoedema and all the challenges that brings.  

This year many of the training events moved online and I am thankful to have been invited to attend many of them there are far too many to list here, but I have enjoyed each one I have attended.  I joined the Eurodis Digital School, attended ILF Webinars and the recent webinar from CEmPaC (Centre for Empowering Patients and Communities) was educational and informative and shows what can be achieved if HCP’s and patients can work together in the interest of improving patient health and frustrations.  My highlight has to be the virtual BLS Conference which was a big success, and the team organisers were amazing so well done to everyone involved.


Surprises – This year there were two radio interviews, a podcast interview and being asked to write articles for publication both in print and on other organisations websites.  I was delighted to be invited to work with Mary Fickling of PhysioPod UK and I have had several articles published on the PhysioPod website. We are both hoping that this will continue through 2021.  Mary has taught me so much about graphics and presentation and I highly value all the help and support she has given me and L-W-O this year.  

My other highlight has been to work with Pernille Henriksen who is a passionate patient advocate and I am in awe of her commitment, energy and the amount of work she does on behalf of the lymphoedema community in Europe, the UK and the USA.  Together we embarked on the joint project with other European countries to see if there was an Impact of the Covid-19 lockdown on European patients with lymphoedema. This was published by The British Lymphology Society (BLS) in their News & Views.  I am sure I speak for Pernille as well as myself how thrilled we were to be supported and encouraged by BLS to publish our findings.  

Just when I thought nothing could top all this, I was asked to do a video review of Gemma Levine’s book Aqua the proceeds of which are going to lymphoedema research.



Seven years – In September, this year L-W-O Community celebrated our seventh-year anniversary for our Facebook page and website.  I was asked why I use the word ‘evolved’ in my writing, but that is exactly what L-W-O Community has done ‘developed gradually’.  From the early days of no direction or skills to being reasonably tech savvy to reach those living and working in the lymphoedema community.  The pathway is clearer with less brambles or thorns to claw at us or trip us up.  Importantly from my personal point of view an acceptance by me that I have defined my role as a patient advocate.  I look forward to 2021 to continue with our message that:


“Lymphoedema exists, we exist”.




Author: Gaynor Leech Founder of L-W-O Community


One of the best parts of running a support group are the debates we have either from the questions that are asked or information that is posted.  When we discuss the terminology we use, you can guarantee it will upset some members while other members will find the terminology empowering.  Why do these posts regularly appear?

Terminology - the technical or special terms used in business, art, science, or special subject and in our lymphoedema community often the subject of discussion, heated debates and open to interpretation or meaning which is different for everyone.  The English language can be precise or quirky …


Lymphoedema or Lymphedema? 

The UK use the spelling ‘lymphoedema’ with the emphasis on the 'O', but the US and parts of Europe use Lymphedema with the emphasis on the 'e' and in the seven years I have been running L-W-O Community I have seen several heated debates as to why in the UK we spell it with an ‘O’.  I have also seen calls for us all to use ‘lymphedema’ as a standard as it appears from a Google search you will probably get more hits if you spell out ‘lymphedema’.  What do international organisations use?  The International Lymphoedema Framework (ILF) use the English spelling ‘lymphoedema’ while VASCERN uses the United States Non/English spelling of ‘lymphedema’.  Then individual countries have their own local language version like ‘lymfødem’ in Danish or ‘linfedema’ in Italian.  Recently I had a conversation with another patient advocate and in this global world we live in we both found when we write or post on social media it's remembering to use the correct spelling for whichever country we are writing for.


Like or Dislike?


Lymphie/Lympho/LE - term used to describe a person living with lymphoedema/lymphedema, (lymphie female – lympho male).  The term 'LE' is not so much of an irritation and I do try to spell this out in full however, on Twitter sometimes if I run out of space... 

Over seven years of running L-W-O Community I have seen many heated discussions in support groups globally as to whether this universal term should be used.  In our early days I took a lot of stick for using the term ‘lymphie’ so when speaking collectively I changed the term to ‘ladies’ this also caused offense and this was also pre men requesting to join our groups so then the term ‘ladies’ became irrelevant.  Therefore, anyone who has read any of my work over the last five years will see I refer to our collective social media as members, followers, or supporters depending on which social media platform I am using. These terms appear to be the least offensive. I also try wherever possible to use the first name of the person I am talking to so, that they can feel a part of our community.

There are some who deem the term ‘lymphie’ as a derogatory form of describing their condition because it reminds them of the impact lymphoedema is having on their lives. Then there are those who prefer the term ‘lymphie’ from the name shaming and other verbal abuse that is directed at them causing anger or a defensive reaction and the real message simply gets lost.

However, a large part of our community sees the term ‘lymphie’ as empowering it gives them the sense of being part of a community.  Three of the most empowering and positive groups in our global community are Lymphie Strong or The Lymphie Life or Lymphedema - LE Nexus Canada run by inspirational people who live with lymphoedema/lymphedema.


I do not see myself as a patient


A Patient - is a person who receives medical treatment from a doctor or a hospital.  If your lymphoedema treatment comes from a hospice or private therapist then you are more likely to be referred to as a ‘client’.  I have had several conversations with both health care professionals (HCP’s) and individual members of our lymphoedema community on the use of the word ‘patient’.  One such HCP insisted we are all patients if we live with an illness or ailment.  However, I will always argue that living with lymphoedema and not receiving any form of treatment or supported care for my lymphoedema means that I do not see myself as a patient.  

Happy to be a patient advocate


Activist or Advocate?

Around 2016 when people started to call me an activist either in the various meetings or voluntary sector courses I attended, or my emails were often addressed to ‘Dear Activist’

My family found this hilarious as did anyone who knows me well.  Once the frivolity had died down, I lived with it for a while, but I am not comfortable with these sorts of labels. However, over the last seven years there were times when I was called a lot worse simply for wanting to help those like me who live with lymphoedema.

Now in 2020 as L-W-O has become very much part of the lymphoedema community the activist label has long gone and I found myself being referred to as a ‘Patient Advocate’. 


Patient Advocates are not something that are new


The origin of patient advocates, in its current form, can be traced back to the early days of cancer research and treatment, in the 1950s when a Harvard Physician and cancer researcher Sidney Farber coined the phrase. He also talked about ‘Total Care’ he felt families should be treated as a whole. 

Try and imagine what it must have been like in the 1950’s to convince Health Care Professionals that Patient Advocates have a role to play in their own self-care and that of others living with the same condition.

Over the last seven years I have seen a rise in the number of extremely hard-working Patient Advocates in our Lymphoedema Community all with the goal of raising awareness of lymphoedema.

In 2020 I am happy to be called a patient advocate I freely volunteer my time, seven years on from our launch I am still as passionate about raising awareness of lymphoedema, and while I still have the energy I will continue to support those of us who live with lymphoedema.

Lymphoedema Disease or Condition?

Disease - lymphedema is a chronic lymphatic disease that results in disfiguring swelling in one or more parts of the body. It can be hereditary (Primary Lymphedema) or it can occur after a surgical procedure, infection, radiation or other physical trauma (Secondary Lymphedema). lymph nodes are removed from the armpit region for cancer staging.

Condition – lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs.

L-W-O support group has had many heated debates on whether we call lymphoedema/lymphedema a disease or condition.  Here are two different opinions from two of our members:

View 1 - “Lymphoedema is medically classified as a disease, not a condition. I happen to loathe when people call it a condition which minimises the serious incurable and progressive disease that it is. However not everyone realises that it is a disease, so I do not get worked up when people use the term condition”. 

View 2 - “With regards to condition vs disease I always use condition as I feel disease makes me sound ill. I am not ill...I just have lymphedema”.

This debate took place in September 2020 it was not the first time this has been discussed and probably will not be the last time.


Do not call me a sufferer


Sufferer - a person who is affected by an illness or ailment.  When you live with a long-term condition or illness you will have good days, in-between days, or bad days each day is different.  Personally, I hate being called a ‘sufferer’ not good for my mental health, to me it represents a feeling of helplessness that I am incapable of helping myself.  Thankfully, in our community there are many who do not like this word, so I am not alone.


Communication is key


Conclusion – In the global community we inhabit we all need to respect each other’s feelings and the terminology we use. We need to find a middle ground because communication is the key to moving forward especially on social media because as a community, we have a long way to go into getting lymphoedema/lymphedema recognised globally. This should surely should be our priority.


The year that changed my life 2013

Author:  Gaynor Leech, Founder of L-W-O Community


This whole year has been a rollercoaster of mixed emotions, lockdown has forced a rethink the way organisations work whether you are in paid employment, running a business or those of us who work unpaid in the voluntary sector we will all have experienced some change in our lives.  L-W-O Community has been no exception although I believe we have done well largely because for the last 12 months all our different social media strands and websites have been brought together under the L-W-O Community title.  We have finally found our place within the lymphoedema community, doors that were firmly closed are now opening, encouragement, positivity and support this year has been amazing and beyond anything I could ever have imagined when I started L-W-O.

Financially things have been tough because donations have dried up apart from a few loyal supporters who have kept us ticking over.  This year for the first time since 2016 I have had to pay two bills out of my own pocket which isn't ideal especially with the amount of time I devote to L-W-O.  With that in mind I have decided to set up a GoFundMe page for L-W-O Community so please donate we are using the #Seven and #anniversary to highlight the work we have achieved over the last seven years and I will be putting out posters and a video.  Our fundraising campaign will last until we reach are target.


As L-W-O approaches its seven-year anniversary mid- September it is only now on reflection that I realise how much the year of 2013 changed my life beyond all recognition both personally and professionally.


I am truly proud of my family and I normally do not talk a lot about all our challenges health or otherwise. A conversation with a friendly acquaintance a few weeks ago who said “It’s time to tell the story behind the story.  Not just your lymphoedema story but the background stuff.  Over seven years you lived through chronic family health issues, including your own, the loss of your Mum, the loss of two of your best friends, the loss of other friendly acquaintances and all the time you have built this amazing community, you have weathered the criticisms, you are learning to conquer your own self-doubt”.  Here is a look at:


'The Story behind the Story’.


We ended 2012 with a New Year’s Eve party at our local pub with friends and friendly acquaintances and entered 2013 in high spirits.  We had two major events to look forward to the birth of a new grandchild and I started secretly planning hubby’s 65th birthday party.  He had no intention of retiring he had been working for 50 plus years and the thought of retiring was completely alien to him.  The plan was to slowly cut back his hours so that we could get some savings behind us for the cruises we planned and the big house project to put a solid tiled roof on the conservatory.  On a personal level I had been researching lymphoedema for the last two years and I was beginning to realise how much information I had researched and collected. 

Our first website banner

Our lovely granddaughter arrived in May 2013 and the 65th birthday plans where advanced with lots of friends and family helping to keep the celebrations secret from hubby.  Party time arrived mid-August, our local pub is just round the corner from where we live so hubby was told we were going for a meal with two friends, so far so good.  I will never forget his face as we walked through the door, he really was surprised that we had all kept this a secret from him.  That night he had more than one too many and he danced and sang all night it was fantastic we all had such fun.  He often jokes that the shock was so much that it caused his heart to fail.  I am under strict orders not to do it again.  Of course, I always do as I am told!

Within less than a week hubby was showing signs of not being well, several trips to the doctor did not reveal anything untoward, he carried on working.  I started looking at possible websites and collating the information I had gathered and trying to learn how a Facebook Page worked which was a complete mystery as was all other forms of social media. Totally beyond my comprehension.  The first week of September 2013 family life as we knew it changed forever.

Hubby started to struggle to breathe and he wasn’t going to do anything so in the end I bungled him in the car while he was complaining that ‘he would be fine’.  Typical man!  I took him to the hospital where he was admitted for tests with a query of heart problems.  In between hospital visiting I had decided to stay with the web hosting company that I used for my
family history.  There are those that think that I do not have any other interests besides L-W-O but my all consuming hobby is my family history and 2020 has seen me rewrite and revamp this website.

A domain name for the new website was chosen and hosting package was purchased, out of my own money because at that time I had no other intention than getting information down in a format I could make sense of.  L-W-O was ready to be launched. I felt that if it helped one person from experiencing the anger, I felt at not being told I could develop lymphoedema after cancer treatment then it would be worthwhile.  The Facebook Page was launched the same week.  Hubby came home with a diagnosis of Atrial Fibrillation his Mum had lived with this for many years so at that time we were not unduly concerned.

Mid-September 2013 and L-W-O was launched, initial feedback was good from those who live with lymphoedema but there were others that were not so happy. However, I plodded on in between hospital visits with hubby.  Then hubby took a turn for the worse and this time an ambulance was called.  He was diagnosed with Chronic Heart Failure (CHF) his long-term prognosis was not good, his working life as a joiner was over and there were doubts as to whether he would make Christmas 2013.  Apart from medication at that time we were told there was nothing they could do for him that his heart was severely damaged and to take one day at a time.

L-W-O was beginning to grow, and I was beginning to be invited locally to all sort of meetings and courses during 2016.  Then in October 2016 my Mum died, she was 90 years old. Four weeks to the day my cousin died after battling breast cancer for 11 years. Emotions were confused and very raw at that time especially concerning my cousin I guess because I had survived breast cancer.  The upside was that our beautiful great granddaughter was born so great joy. Twenty-four hours after her birth we were told she had a lymphatic malformation. I had repeatedly been asked by L-W-O parents to set up a family support group as several of them belonged to our adult support group. I had always declined but now with our great granddaughters’ diagnosis we as a family needed to learn about her condition and so I kept busy organising and researching the feasibility of a new support group designed for families. This was officially launched on the 1st January 2017 twelve days before my husband had a near fatal heart attack.

With hindsight I guess running L-W-O became a distraction from all the hospital visits, loss of a good income, the loss of our social life and having to adapt to a new way of life.  Thankfully, seven years on he still with us.  The day of his heart attack I managed to get him into to see our GP who promptly sent him to the hospital for an X-ray, he drove to both absolutely in agony and nobody picked up what was happening. The only reason I had not driven him was the fact I had at that time the virus from hell my ribs felt bruised and battered from all the coughing and all I wanted to do was sleep. The minute he walked through the door at home I could see he was not well, and I called an ambulance which arrived quickly.   

The skill of the two paramedics who had to bring him back when he flatlined on the way to the hospital, the speed at which UHCW worked to get a stent put in, plus the subsequent care received from both UHCW and GEH he is lucky to be alive.  He has also been fortunate to receive one of the new super drugs which we were told would transform CHF.  At the end of August 2020, the latest round of tests indicates long before being diagnosed with CHF he had probably had several heart attacks which is why the damage has been so severe.  The difference from 2013 to 2020 are the new super drugs and in the future the possibility of being eligible for an Implantable Cardio Defibrillator (ICD).  Two weeks after his heart attack I had a Total Knee Replacement (TKR) my second.  Thankfully, I had recovered enough from my virus for the operation to go ahead.  Neither of us could drive for six weeks, we could barely look after ourselves let alone each other but as you do, we somehow got though with support from family and friends.


Prior to his diagnosis in 2013 he used to suffer with chronic heart burn and would pop antacids both prescribed and over the counter so if you read this and this sounds like you please don’t dismiss the warning signs do get checked out and if you are dismissed by your GP insist on an ECG.


Three years later as a family we went through the same thing again when our middle son, who was in his early 40’s was also diagnosed with CHF, also lucky to be alive and he lives with an ICD and lots of medication.  This gave us as a family more insight into heart problems and we have now been told is genetic and we know of at least two generations of my hubby’s family that had the same disease which is a constant worry for all our family.  We have had to put this information in a box and whilst it does not go away because with CHF there are always good days and bad days life must go on for everyone else.

Despite all the family trials and tribulations, the birth of our in beautiful new great granddaughter in 2016 who was born with a lymphatic malformation and in 2018 we had another granddaughter bringing the total number of grandchildren to 11.  Both the latest additions to our family are real characters and brighten our lives every time we are in their company.  Our older grandchildren are either working, or going to 6th form college and nothing pleases us more than when they find the time in their busy young lives to come and see us or when they say to us “Do you remember when?” referring to some activity either their Grandad or I had done with them when they were younger.


While the cruises are on hold, the conservatory got its solid roof thanks to family and friends who rallied to get all the work done, while hubby supervised.


During 2018 I worked non-stop on raising the profile of L-W-O both online and in the community and looking back even I am surprised with all the activities we took part in.  I call 2019/20 a year of consolidation were all the various social media strands were slowly being brought together under the heading of L-W-O Community and for the first time I had the feeling that I wasn’t banging my head against a brick wall because some of the bricks are beginning to dislodge and others are tumbling down.

Whatever life challenges any of us face no one could have prepared us for 2020 and yet for L-W-O Community this has been our most successful year, we are no longer the biggest social media private support group on Facebook in the UK however we have grown our other social media platforms and we now have 3500 plus members, followers and supporters.  Our main website is approaching 500,000 viewings and our new family’s website launched in July 2020 has had 3400 plus viewings.  L-W-O has valued working partnerships both in the UK and Europe and support from our American, Australian, and Canadian friends.  My passion for writing has led to several articles being printed, I have been interviewed for articles, a podcast plus two radio interviews.  Yet I am still surprised when I am invited to write an article or be interviewed and humbled when given a compliment about L-W-O.

My Family


I owe a big thank you to the volunteers who have helped along the way, the members of our support groups who have stayed with us.  To those who have freely given advice, picked me up when I fell down and supported what L-W-O Community has been doing, my heartfelt thanks.  Despite all the mixed emotions, sleepless nights, the laughter and the tears over the last seven years I am immensely proud of my family and tremendously proud to be a patient advocate.


Cherish the Past, Embrace the Future


Please donate so that L-W-O Community can continue to maintain our two websites


Hand Sanitisers - Fire Risk?

Last week I posted in good faith a poster on #handsanitisers #firerisk and whether hand sanitiser was combustible. I had received the poster from a reliable source within the health care community I belong to and it had an NHS logo. The article had been mentioned in several overseas news outlets and a brief mention on one of the Midlands news channels. Two members of one of the social media groups I belong to questioned the validity of the poster therefore I removed the post. After removing the post, I wrote to Warwickshire Fire and Rescue Service Communications team and asked them about the validity of the poster and whether hand sanitiser left in cars would become biodegradable. I would like to thank the WRFS Communications team for their reply posted below. I hope this clarifies things, regards Gaynor

"Please find some answers from our Fire Prevention Team below:
Outside of the UK there have been a couple of fires that have involved hand sanitisers - the initial reports originated in media articles in the USA.
Following these incidents, the NHS issued an internal message to front line staff highlighting what they believed to be a potential risk. This information you have been sent has now been retracted following further investigation, evidence, and advice. The possibility of alcohol-based hand sanitiser gels causing a fire in a vehicle is very low.
We can reassure people that these products will not combust if left in the car, even on the hottest day. We would advise people to ensure they store their hand sanitisers in vehicles safely, which includes keeping bottles closed and out of direct sun light, such as in a glove box or in the boot of a car. This will also ensure the contents do not deteriorate.
The poster is saying that "hand sanitisers left in a car in high temperature could become combustible". The risk associated with hand sanitisers being kept in vehicles can only become apparent when it is in contact with a spark or a flame, not through intense heat even on the hottest day. The advice is to keep hand sanitisers away from sparks/flames or anything that could act as a lighter to ignite it, because the alcohol content is flammable.
I hope this information helps."
WFRS Communications
Fire Service HQ
Warwick Street
Royal Leamington Spa
Warwickshire Fire and Rescue Service

Taking a Break

Author:  Gaynor Leech Founder of L-W-O



Noticeably short blog, hopefully from next week I will start easing back into looking after the L-W-O community.  I hope you are all well.  As a family we have had a difficult time recently and my priorities will always be my family.

Hubby has been quite poorly, and he had a couple of days in and out of hospital with them running tests.  Unfortunately, because of these unprecedented times I could not be with him and I think the stress of it all got to me.  Thankfully he is well again but living with CHF each day is different. Although support group has been exceptionally quiet over the last 16 weeks my workload just kept increasing and there have been lots of exciting things going on in the background that I will be sharing over the next few weeks.  I need a part time admin assistant with social media experience and a head cook, bottle washer and cleaner extraordinaire both voluntary - both unpaid.  Will I get any takers? Oh well I can dream.


If I have not answered your emails or messages, please be patient I will get to you

Thursday 18th June I signed up to do the Eurodis Digital School Webinar on Social Media and this has given me lots of inspiration but it has also made me think whether to get rid of or streamline our social media that is not as active. Successful social media groups rely on the members to drive it forward to keep it active if that does not happen then then there is no point me putting my time and energy into keeping it open.  We will see.  The course also explained in detail about the Facebook algorithms and why we have had trouble with the way Facebook now operates therefore, we are not seeing the growth we once did.  Interestingly Facebook is still considered to be the best place for groups like ours to operate, followed by Twitter and Instagram.  My personal Twitter, and our L-W-O Twitter accounts have grown to over 800 followers over the last few weeks and my LinkedIn account I suddenly have 161 followers the last time, I consciously looked it was around the mid 70's. 

Sunday was Father’s Day and we were visited by five of our Grandchildren which was brilliant, and we were able to sit outside from 11.00 am – 3 pm in the garden before the temperatures dipped.  It is lovely to be able to see them again after such a long-enforced break I have missed each, and every one of them so much.  Still missing my hugs.

Sunday evening settling down and our world tipped upside down when my eldest son phoned to say that our 16 old granddaughter had gone into anaphylactic shock and her life was in danger.  However, the ambulance arrived within five minutes and due to the skills of the paramedics who saved her life and got her to resus and the work of the resus team she has survived and is safely back home.  Nobody can give us answers to why this happened, and there will be lots of investigations and tests over the coming weeks.  She will have to carry an EpiPen for life.  Ironically, this is the granddaughter who wants to train to be a paramedic.  She is waiting on her GCSE results which are being assessed differently this year and in September she will be going to 6th form college to do her A levels.  A big thank you to the paramedics and GEH for the excellent care my granddaughter received.

I do my best to support other lymphoedema organisations through me paying an individual membership and I will happily signpost our members, followers, and supporters to these groups to do the same.  If there is any other way, I can support them by promoting their work, and events I will.  Whether you are a registered charity or an unregistered charity like L-W-O working within the legal guidelines set out by the Charity Commission the financial challenges this year are tougher than I can remember and I have been volunteering in one capacity or another for over 40 years. This year more than any other year I have had requests to put links up across our social media to support various fundraising events for other organisations, and in the past I have had no problem with this but this year for the sake of our own financial health that is not possible.  If you can support us by making a donation I would be grateful.

I have enjoyed the rest and barely touched my laptop  

Lesson to learn

I must remind myself frequently – "you are a volunteer"




Impact of Covid-19 on Lymphoedema

"Please find the results of a poll carried out in six different closed patient groups, on Facebook to investigate the impact of the Covid19 lockdown on patients with lymphedema (all types but not lipodema). This was very simple, using the poll option of Facebook. No names were collected - only the results. While the groups are in local language and tailored to those countries there can be some patients living in one country while answering the poll in another - but it would be very few cases.

The question in the poll was: "During the Covid19 lockdown period, has your lymphedema gotten worse, better or has there been no changes?" Patients could then opt to elaborate with the reasons for their answer. 471 results were collected.

It was quite worrying to see that 48% said their lymphedema was worse and so perhaps we, as patient associations, need to do more to help the community with self-management techniques."  Big thank you to Pernille Henriksen for collating this Poll and writing this, piece and thank you to the European countries that took part.  For more information contact:

This is what L de Linfa lymph wrote

Self-Isolation Week 12

Author: Gaynor Leech, Founder of L-W-O



What a strange week this has been. After 11 weeks we are beginning to ease out of lockdown and in our case almost total self-isolation.  New rules apply as we enter the second phase of an alien new world.  This blog will concentrate on things I have read this week all related to how we protect our selves over the next few months, some of this will be tongue in cheek but much of it will be about the concerns of patients and how our Health Care professionals (HCP’s) are preparing to receive patients or clients.

Many moons ago when I organised an event or public gatherings the only thing, I had to worry about was if there was disabled access and where the fire escape routes were.  Slowly over the years Health and Safety has become an industry sometimes at the expense of common sense.  The big buzz words now are 'Risk Assessment' and yet this term was first introduced into legislation in 1992 Management of Health and Safety at Work regulations.  Sadly, risk assessment not only affects our working lives or venues we attend it has now crept into our daily home lives.

Sunday 31st – Hubby spent the day tidying up outside making sure a one way system was in place for when we have visitors to our garden, he lit the smaller of our two barbecues (braai) so that we he can make sure its ok for when our friends come around tomorrow for a braai.  I sat and read in the garden, it was such beautiful day and by the time I came back in the house I looked as if I had been on holiday to some exotic destination as I had a healthy glow.  As always, I took sensible precautions and I am thankful that I rarely burn.

Monday 1st June - The day was quiet, I also shared a video of Laughter Yoga which received mixed reviews, one of our members reported that their local support groups had organised  a live session with invited guest last year and although quite a big group apparently the patients were negative and apparently the organiser only received one positive review.  Which is sad because these sessions can be fun.  On a separate post one member reported ‘leaky legs’ but seemed to be coping well as this was something she had experienced before.

One of my friends has a birthday today and they asked could they come to us for a braai although they have a lovely garden it is easier for social distancing in our garden.  The afternoon was spent sanitising everything and I reflected on how language has changed since I was a child.  In those days you did not sanitise anything you used disinfectant and lots of bleach and if you wanted to kill anything off you used carbolic soap. How language and the way of doing things has changed. So, what does a socially distanced braai entail?

  • Strongly consider your guest list – yep only two – our friends have been in self isolation like us
  • Separate entrance into garden – yep – used to be called the tradesman’s entrance - or back gate
  • Ask guests to bring their own cutlery, plates, and condiments – really?  Yep
  • Have a one-way system around the barbecue – yep – no problem
  • Only one person should handle barbecue tongs – yep – got two one for each couple
  • Serve food on plates from a distance – yep bought their own food – just the meat to cook – managed not to get anything on the floor from a two metre distance 
  • Set out seats two metres apart in advance - but not face to face – yep – no problem
  • Sadly, no birthday hugs but lots of chatter and a glass of champers to toast our friend
  • Not allowed indoors – what about the loo? Luckily, we have a down stairs loo all doors left open direct route – separate coloured hand towels – to be put in the washing machine at minimum 60oc after their visit  - yes I could have saved work by putting paper towels out – but really?

We started at 5 pm and sat out until 9.30 by this time it was too cold to sit any longer but despite all necessary precautions we did have a good time even if it felt at times like -

“ Round and round the garden”. Remember the nursery rhyme?

Tuesday 2nd June – Absolutely delighted on checking my email inbox that I have received an email from BLS to tell me I have received an educational grant to go to their conference in October, this will be my third conference. 

I was asked today if one of our polls could be presented at a Vascern meeting together with Danish, Italian, French, Norwegian polls and Manuela Lourenco Marques, would be presenting her Portuguese poll.  I have seen the results and look forward to sharing them with you soon.

I spoke to my local Macmillan friend who told me that there is no face to face contact, communication is all via video or by telephone, to date she has made over 1200 calls.

Wednesday 3rd June – Today I published the new webpage on Arm and Hands movement this is part of our #getmoving series.  I have also been playing about with mood boards to see if these can be used as the basis for our future videos in partnership with PhysioPod.

L-W-O members are beginning to ask questions as to how treatment and clinics will differ from pre Covid-19 times.  Several of our members are still shielding in the strictest sense and are very reluctant to be venturing outside or into places where they might meet others.  I asked the question “Have you been contacted by your lymphoedema clinic?”  This is the result from our poll:


The above results are interesting 143 members took part. As many of us have taken to video calls as a way to communicate I was puzzled to find that this method of communication was not used.

These comments were written in post are not unexpected.  The top comment “What service?”  Followed by “There are no services in my area”.  Real fears are developing in our community from patients who are being warned that,  for the foreseeable future appointments will be emergency only.  Also, there is a suggestion that patients might be asked to measure their own hosiery, older patients do not necessarily understand metric measurements. 

Thursday 4th June – Today was a day of rewrites on the website its now taking shape and as I work through each series, I am beginning to see things more clearly.

Face masks are now mandatory in more outdoor settings.

Friday 5th June – One of our new members asked, “I just got a cat and I was wondering if I should be worried about getting scratched?” She also asked about the risk of infection.  The members that responded generally felt she need not worry, to take sensible precautions and to treat any cuts or scratches immediately. 

I have watched over the last few weeks how HCP’s, therapists who have not been redeployed in the NHS or other settings have been preparing for a return to receiving clients or patients.  Having undertaken risk assessments in the past I know how stressful putting these in place can be and they will all have a risk assessment in place prior to lockdown.  Several therapists have undertaken online courses over the last few weeks either to improve their skills or courses linked to Covid-19 risk assessment. I will ask all of you to spare a thought for the work and the risk assessments that are currently being rewritten.  

 What is likely to be the new norm with your appointment or treatment?

  • Your clinician will be wearing face mask, gloves and a visor
  • Handwashing/hand sanitiser will be priority for both clinician and patient/client – do not be upset if you are asked to wash/sanitise your hands on entering or leaving premises
  • You will not be able to take your partner/friend into a treatment room
  • There will be very few soft furnishings more disposable coverings on couches and seats
  • Use of paper towels
  • Be prepared to take your own drinking water, disposable cups might be available that glass of water at the end of your treatment will not
  • Be prepared to take your own hosiery appliances
  • If your treatment time seems shorter than normal, please remember your clinician will have to sanitise the room after you leave and before their next appointment
  • You may receive telephone call 24 hours prior to your appointment to see if you are well enough to attend
  • Do not be surprised if you are asked to take your temperature prior to your appointment or on arrival of your appointment

These guidelines have come from the Federation of Holistic Therapists and are subject to changes.

Finally, I checked in with our membership to see if they were ok and wished them a good weekend. I decided I would not touch the laptop until Monday morning…

Saturday 6th June – Yesterday I said I was going to stay off my laptop until Monday, any queries would come through to my mobile if there was an emergency.  Cue the lovely Mary Fickling who having looked at the mood board on deep breathing I had sent her earlier in the week decided to create the video. We both spent the morning, and a good part of the afternoon being creative, there was lots of toing and froing but the results are amazing, and Mary has successfully added to the PhysioPod website a guest blog, take a look.

I am well and truly done for this week

I love the point when your tired everything is funny


Self-Isolation Week 11

Author:  Gaynor Leech Founder of L-W-O



You would have thought in the world of lockdown and self-isolation that groups like ours would go very quiet as people have other things to worry about and while our membership has been quiet the organisational side of L-W-O has been very busy indeed.  I have enjoyed the phone conversations the online interactions and the business organisations who have asked ‘how can we help’?  Asking for help and especially asking for a donation is not my strongest point and I do cringe when it is necessary to do this.  This week we received a donation from one of our Twitter followers who also gave us a donation last year which I am grateful for but equally grateful for her comments and support throughout the year in Tweets.  I have also been invited to write articles that might be relevant to a couple of organisations on lymphoedema and our support group.

Sunday 24th May – and we are finally settling into a new Sunday normal of staying away from social media and getting use to talking to family and friends via What’s App or phone but otherwise away from technology, reading and watching trash TV it will be interesting to see how Sundays change from next week.

Monday 25th May – Spring Bank Holiday like no other not able to go out as there are no events either local or nationally and once again thankful for our garden where we were able to spend most of the day.  One of our members had a nasty fall over the weekend and spent three hours Bank Holiday Monday at a walk-in centre waiting to get antibiotics for the rapidly developed cellulitis and an all too familiar story of only being given a seven day course.  The good news was the doctor in her words was “Fab” and ordered an X-ray to make sure there was not any gravel in the wound.  Her relief was that she did not have to go into hospital for intravenous antibiotics.  She continues to argue with her local surgery that because of the amount of times she has cellulitis she should have emergency antibiotics at home, to no avail.  These posts always produce lots of discussion with members reiterating that 14 days supply of antibiotics should be given and referring to the cellulitis consensus document produced by BLS and LSN.  Members of the Lymphoedema Support Network (LSN) will have received the Medical Alert cards as will a few members from our nurse advisor or their own clinics the majority have to print off the information from the links we provide across our social media.  Membership for LSN is £15.00 p.a.

Tuesday 26th May – Hubby and I decided to tackle our ridiculously small home office which is dark and has very much become a dumping ground when we both need to tidy up quickly its also next door to his workshop which creates machine dust and gets traipsed through.  My preferred work place is our conservatory I have a long work top, lots of light and a great view of the garden which gives me inspiration plus I find it very calming as it doesn’t feel as if I am working.  We shared to the group the British Lymphology Society (BLS) Standards of Practice for lymphoedema services.

We also shared the survey on Remote Patient Monitoring from Sally Kay who is preparing for the next phase of the research into lymphoedema and exploring the best way to measure the fluctuations in swelling. If you or somebody you know has lymphoedema, please could you (or they) complete this quick survey? Reflexology Lymph Drainage (RLD) are trying to find out whether a small portable measuring device would be of use to people with lymphoedema.  It was interesting to see how our members reacted to this survey and how strongly they felt that:

  • Patients needed to spend more time with educated clinicians who know about lymphoedema
  • That health care systems around the world are not funded properly or have enough therapists
  • More support is needed on the NHS or from whichever health care system you belong to globally
  • The importance of patients fighting to make their voices heard

What I liked about the response to this post was that there was no ranting but reasonable, educated discussion from members who have lived with lymphoedema for most of their lives.

Wednesday 27th May – I re-shared the Overview of Paediatric and Primary Lymphoedema produced by the European Reference Network. One of our members queried swollen lymph nodes and as she is still receiving cancer treatment the general advice was to contact her consultant or BCN.

Thursday 28th May – Delighted for our members as the International Lymphoedema Network have made a series of informative videos that now include three Genital Lymphoedema videos. Did you know that you can become an affiliate of the International Lymphoedema FrameworkIt is free to join.

I have continued to restructure our website and as most of our members access the website from their mobile phones the pages are now looking good and I have received some lovely compliments while it may need a few tweaks the #getmoving series targets a specific area like arm and hand or head and neck plus more categories.

I was delighted to be invited and sponsored to join MLDUK I attended their conference in 2019 and it was one I thoroughly enjoyed being friendly and informative.  Organisations like these do not normally have a membership for non-medical people like me however MLDUK has a friend’s membership which is £15.00 p.a. for anyone who is interested.  This kicked off some discussion on our email signature which I am delighted to say resulted in the following:


It would also be remiss of me not to mention that British Lymphology Society also have a friends membership which is free to join for those of you who are not health care professionals but want learn what happening in our community.  It is so important for those of us living with lymphoedema to have access to organisations like this whether it is to use their resources or receive their newsletters to feel we are very much apart of the lymphoedema community.  I also fully understand that not everyone can afford memberships when you are on tight incomes or no income because of your lymphoedema or other health issues.  I will continue to raise awareness through posters, presentations across our social media and website.

The best news of all is that from Monday 1st June we can start to meet in groups of up to six people in our gardens or anywhere outside.  More than happy to stick to gardens and while social distancing will apply as will hand washing and sanitising surfaces sadly no hugs, I will take this, so I am an incredibly happy bunny.

Friday 29th May – Started the day with a telephone conversation with one of our friendly supporters and look forward to the possibility of a new project in a couple of months’. The rest of the day was spent on the website.  Friday evening me thinks the neighbours are not waiting until Monday it is a lovely evening and I can hear lots of chatter and laughing.  Oops some friends have stopped by to say hello.  Did we, or didn’t we? I could not possibly say.

Saturday 29th May - A neighbour from a few doors down has been baking a lot during lockdown and sharing her lovely creations on Facebook.  This morning she knocked on our door and brought us two lovely cup cakes with fresh strawberries on top yum yum, but how thoughtful to think of us.  We have had an incredible amount of support from family and friends offering to shop for us, checking in on us to see if we are ok bringing us cookies, cakes, Easter eggs and supporting us the best they can and we are both so grateful to all those who have shown us so much kindness.  However, I was talking to a neighbour around the corner who is looking after her elderly mother and I was saddened to hear they had not received any support at all. 

What have we learned this week?

This week has all been about working partnerships, the kindness of others.  It has been informative educational but most of all its been about our lymphoedema community and how much more we can achieve when we all speak with one voice,


“Individually we are one drop; but together we are an ocean.” – Ryunosoke Satoro

Self - Isolation Week 10

Author: Gaynor Leech Founder of L-W-O



This has been another crazy, busy week, creative, productive and one that has absolutely flown by. Yet is has not been stressful or tiring which you would have thought it might have been.  Routine and structure have gone totally out the window, but the end results have been absolutely worth every minute.

Sunday 17th May – a rest day, catching up on some reading with my feet up and apart from cooking Sunday Roast a quiet day.

Monday 18th May – busy trying to finish off the weeks blog, it does not look as if it will go out today, oh well “what will be will be”.  Hubby has gone off to golf, they are only allowed to play nine holes either the front nine or the back nine.  He returned to golf for the first-time last week, they had to contend with dog walkers and joggers on the greens as people had not realised the course was open, none to happy about that.  They are allowed to play a two ball and social distancing was maintained although anyone who understands the etiquette around playing golf will know a lot of hand shaking usually takes place so once or twice some of the members needed to be reminded that couldn’t take place. 

The 18th – 24th May is Mental Health Awareness week and the theme is Kindness.  I did not do a lot to promote this because as part of our ethos of self-care L-W-O encourages our members to not only be kind to each other but importantly to be kind to themselves.  

Tuesday 19th May – I finally managed to get last week’s blog published.  Interesting post below on our children’s group today from Pernille Henriksen European Patient Advocacy Group (ePAG)

“There seems to be opposing opinions to the effect, benefits and usefulness of MLD (Manual Lymphatic Drainage) as compared to compression (bandaging and garments). Or that MLD is not warranted in the maintenance phase as opposed to the reduction phase. However little to nothing is known about this for children with primary lymphoedema and their patients/carers.

Please let me know your opinion?

  • Were you taught to do this by a clinician?
  • Are you encouraged to do this by a clinician?
  • Do you do this regularly?
  • Do you do this with or without bandaging?
  • What kind of effect do you see or are looking for?
  • volume reduction, volume maintenance, pain relief or pain management, stress/anxiety relief, aid in mobility, aid in range and motion …

The answers were informative, and our parents gave great insights with a range of answers those that took part appear to use MLD or a combination of MLD and bandaging. Those children who are under St Georges have received good instruction on how to self-care for their children and encouraged to try new methods like Kinesiology Tape.  MLD or massaging before bedtime helps the children relax so that they might have a calmer night.  At this time, most of our children are under the age of five one parent made this comment. “I can say good MLD before wrapping and sleeping makes my child very relaxed.  It may reduce his pain, but I will only find out once he starts explaining everything more clearly (too young now)”.

Thank you to Pernille for this question and our parents who responded.

The weather is warm and sunny not a day you want to be indoors. We travelled the scenic route to the butchers and stopped off to see two of our grandchildren on their doorstep while we sat in the car.  There is such a perplexing rule in place now as part of lockdown.  One of us can go to the local park and meet one other member of our family or a friend, this means a drive to the park, a walk through the entrance dancing two metres around everyone who has the same idea. Then in my case I would need to find a seat and sit two metres apart from whoever I am with and anyone else can come and say hello and you hope they will adhere to the two metres apart while they are talking to you.  Is this still not a risk factor?  However, I cannot invite one member of my family or a friend (they usually come in twos) who have all been in self-isolation for 10 weeks to come through my back gate and sit in my garden two metres apart in this beautiful sunny weather. I ask myself “when did you learn to swear so much”?

Then off to see one of my younger Granddaughters who will be seven tomorrow with a present and card.  While we sat in the car, she came out with her little sister who is 18 months old and they chatted away and played with a ball and said hello to anyone who was in the street.  The little one blew kisses when we left, and I struggled to fight back the tears for all the hugs we have missed over the last 10 weeks.

Time to check in on support group. You might remember or not when we started this lockdown journey I had to decide whether to keep our community strictly all about lymphoedema and I took the decision that for the time being other subjects would be allowed.  Late afternoon I posed the question to our members “What has been the most positive activity you have achieved through lockdown”? I was not disappointed, we had 58 comments and I was thrilled to see how busy they had been.  Gardening seems to be one of the main activities, with members starting their own vegetable patches, growing vegetables from seed for the first time.  Lots of cooking including with young children. One member proudly stated she had read a ‘whole book’.  While others were pleased to have saved money because they have nowhere to go out to spend.  My favourite was the member who has worked on her online business and in her own words “it has taken off”.  Members posted art, photography and one member posted this lovely comment “This is a really lovely post, not just here in the comments.  It is really good I love it.  Made tears come to my eyes”.  Thank you to this member for your lovely kind words.

Wednesday 20th May – The weather is beginning to ‘hot up’ we published our Lymphoedema Summers poster with tips and advice on how to protect our members.  Last week I said we were going to start a partnership with Mary Fickling from PhysioPod UK whereby I would provide the tips from our posters, she would then convert them into a Vimeo video, I would write a short introduction and then they would be published on the PhysioPod website and Vimeo channel and I would add them to our You Tube channel and between us we would promote our joint work across social media.  So, the process begins, watch this space to see how we get on.

I had a few teething problems with the website today I have been learning more about Hex Colour Codes and have finally managed to get our website Header the same colour as in our logo.  Trying to design a new Footer has been a nightmare and although I made some changes it was not quite what I wanted to do however, I am not disappointed as I have added a couple of new features.  In 2013 I started the website with five pages we now have 54 and the last 10 weeks I have removed pages, added new pages, shortened pages to make them easier to read and I am now in the process of improving page navigation.  Our Home page has a new look, layout and information and I have made it easier to contact me via the website with a brand-new Contact page.  Several other pages are under reconstruction and over the next few weeks they will be promoted via our social media platforms.

Thursday 21st May – Today we put out our second poster on how to get a Cool Nights sleep while living with lymphoedema.  A day of ‘toing and froing’ working with Mary as we worked through Lymphoedema Summers and the Cool Nights videos.  New skill learnt as I discovered how to down load a Vimeo Video to our You Tube channel. We have had our You Tube channel for three years and probably not made the best use of this forum.  When I look at the earlier videos I did and the ones going out now there is a huge difference and while I might take longer than others on all things techy, life for me is all about learning new skills.  Click on the You Tube link and please subscribe the more subscribers we get the more incentive I will have to produce more lymphoedema awareness videos.  A very productive day.

Friday 22nd May – The two new videos are up on Vimeo and the PhysioPod website Lymphoedema Summers and Cool Nights inspired by the posters I produced.  It was great fun working with Mary Fickling and I am looking forward to working with her in the future.  The website has two new pages and the Holiday Care page has been shortened, even in it does not look like it now.

Saturday 23rd May – has been a play day as I have been looking at options to expand L-W-O’s reach.  Watch this space.

What have we learned this week?

That sometimes you can get away with breaking the rules you set yourself, breaking free from routine can be exhilarating, creative and productive.


Coming together is beginning: Keeping together is progress; working together is success.” by Henry Ford.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

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