header photo

L-W-O Community

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


Comfiwave Breast Band

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


Comfiwave Breast Band




This product was shown for the first time at the 8th National Lymphoedema (virtual) Conference, presented by Sue Lawrence, Clinical Nurse Specialist within the topic ‘Management of Breast Oedema’. (Sponsored by Haddenham).

As a patient and patient advocate, I rarely get excited when manufacturers introduce a new compression garment.  This is because as a breast cancer patient, I have felt that my type of breast cancer related lymphoedema (BCRL) has not been catered for.


My history


After a routine mammogram in 2010, I was diagnosed with a DCIS (ductal carcinoma in situ) - in simple terms this means the cancer was like grains of sand in the tissue, not a lump and wouldn’t have be found without a mammogram. I had the tissue removed via a wide local excision (WLE) also known as breast conserving surgery plus two sentinel nodes removed.  This was followed by 15 days of radiotherapy treatment to mop up any cells that might remain.

My prognosis was good from the start, I was happy to receive treatment so quickly and even happier not to have had a mastectomy. As a direct result of radiotherapy treatment, I was diagnosed with lymphoedema a condition I had never heard of.  To be exact I have breast and posterior chest wall lymphoedema. At that stage it never entered by head that I would spend the next four years searching for a bra that would fit properly or one I could feel comfortable wearing.  Neither did I imagine that I would not be able to wear matching underwear again.  To some that might seem trivial, after all most people will not see the underwear, you are wearing, but it does play a big part in body image and the feeling of wellbeing.


Breast Lymphoedema


As a society, we tend not to think about the things we cannot see.  There are some very brave ladies who can talk about breast cancer and having a mastectomy and those of us who have had a WLE, talk about our breast cancer in general terms.  However, we tend not to talk about the difficulties of controlling our breast lymphoedema or the difficulties that this brings in finding the correct bra.  This attitude of “You are alive, aren’t you?” Sweeping statements like this only exasperate the feeling many women have over body image and walking around with what feels like a rugby ball attached to their chest.

So why did it take so long to buy a bra that was comfortable for me? Breast lymphoedema changes every day, you have good days and bad days, sometimes slight puffiness, swelling that is manageable and other days when you feel very puffy, and you are very swollen, and the swelling is a lot harder to manage. This is not just when get up in the morning but continues throughout the day. For example, breakfast time you could be a D cup by lunch time you could be a DD cup and by late afternoon a DDD and who knows what you could be by the end of the day.  Skincare, movement, hydration, knowing which foods trigger more swelling all become part of your daily selfcare routine and ultimately your bra becomes your compression.

While I knew I needed compression I simply could not wear the type of bras that were available.  Finding a bra with cotton linings that allow your skin to breathe, wide sides that would not allow the swelling to bulge over, straps that did not dig into your shoulders leaving deep indentations.  I wanted something that would give me the compression I needed but was comfortable to wear and did not make me feel like I was in a strait jacket.





Sitting happily watching the conference and suddenly on the screen the Comfiwave Breast Band was being presented. Initial thoughts “I want one”.  That evening I shared the image of the band on our social media. Twitter lit up as did LinkedIn.  Interest was phenomenal.

I was lucky enough to speak to Natalie Phillips at Haddenham who suggested if I wrote about the Comfiwave Breast Band she would send me one.  Who is the Breast Band is aimed at?

  • For those with Lymphoedema extending into the breast/s and or lateral chest wall.
  • Aids softening of tissues as well as reduction of oedema.
  • Suitable immediately post-surgery, following breast augmentation or for those who have had breast conserving surgery such as lumpectomy.
  • Can be used over dressings for covering wounds, including fungating lesions
  • Useful in palliative care, where traditional compression is not suitable.
  • For use at night-time to aid comfortable sleep.
  • Can be used separately to or in combination with other types of compression bras and with Kinesiology taping applications for Lymphoedema.


VAT Relief


The Comfiwave Breast Band has been discussed across several of the social media support groups and while comments have been extremely favourable there has been some mutterings about the cost because at the point of writing this is not readily available on prescription.  Having said that for those who have lymphoedema and some other conditions VAT relief is available.  In addition to this at least one of L-W-O Community’s support group members has had this approved and ordered by her clinic.  So, if you have breast lymphoedema do ask your clinic whether you are eligible.


My thoughts


I spoke to Natalie late on the Friday afternoon and was surprised to receive by Breast Band by the Saturday lunch time, very impressed with this service. I ordered the XL and initial thoughts I had ordered the wrong size, but I hadn’t.  I waited until teatime when I just could not wait any longer. Because I have problems with my hands, I was concerned I wouldn’t be able to get the band on.  I needn’t have worried it went on with ease.  There is a nice, stitched feature on the back to show the right way up and distinguish from the front and back that does not interfere or protrude when you wear the band. I wore it for five hours.  Concerned I might not be able to remove it properly hubby was on standby, but I need not have worried I removed the band with the same ease that it went on.

There were nice little ridges on my skin but not indentations to show the band was working and even after the first wear my skin felt softer.  The next three days I wore the band for 12 hours each day. I did not feel as if I was wearing compression.  There was a clear reduction in both front and side of my breast which was most evident when I put on my normal bra.

The next test would be to see if I could wear the band overnight and found that I could.  In the UK we have recently been through some extreme high weather temperatures, and I found the band to be cool and comfortable. What I really liked was I felt no restriction of movement and was able to forget I was wearing the band.  Best of all it did not slip, ride up or slide down and I could feel the difference when I took the band off.

Finally, the next test would be how it would wash. Initial wash it went on 30° in the washing machine and then was dried flat on a towel.  You can tumble dry on a low heat. It came out of the washing machine as new, so absolutely thrilled.


Game Changer


The Comfiwave Breast Band is a game changer for people like me who have felt totally neglected in the past and I to now have compression that will improve the quality of my life.

In the Community

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



Talking to Busom Buddies, Nuneaton


I love talking to people, to be with people and I am always thrilled to be asked to give a talk to groups within my local community on the subject of lymphoedema.  Movement in the UK is less restricted as many of us have been doubled vaccinated against Covid-19. While hand sanitising, mask wearing, and social distancing is still very much in place as many of us have been ‘safe at home’ for the last 18 months.  On the 9th June I ventured out to give a talk to Busom Buddies a friendly cancer support group attended by ladies who have all had a diagnosis of breast cancer. Some of the group sadly had also been diagnosed with secondary lymphoedema.

It was an exceptionally hot day and given the fact I had not ventured out much over the last 18 months there was some trepidation on my part.  This was compounded by the fact that much of the information I usually take with me was very much out of date having sat in my wheelie (exhibition) case for the last 18 months.  However, with this friendly group there was a sense that my presence was about telling my story, talking about lymphoedema and for the group to ask questions on how to look after their lymphoedema.

Selfcare is such an important part of lymphoedema and in an ideal world we would all have supported selfcare.  I am saddened by the fact that several of these ladies had not received any care whatsoever, one lady could not get a diagnosis from healthcare professionals for various reasons, and another lady had been diagnosed with lymphoedema when in my opinion she had lipoedema.  I cannot diagnose and therefore, all I could do was suggest that she contact Lipoedema UK.  The lack of support these ladies were experiencing was evident.

We discussed all aspects of living with lymphoedema from skin care, the importance of compression, and why movement is essential.  Because it was such a hot day teas and coffee were replaced by diet coke.  This provided a' giggle slap on the wrist' moment when I could tell them off and explained why fizzy drinks are not good for lymphoedema and the water I was drinking was preferable. 


It is important for those of us who live with lymphoedema to drink more water

Don't be tempted to think the opposite - Lymph fluid is high in protein

To remove protein from your tissues you need water

Drinking water, means "protein-traffic" moves better around the lymph system



This was a lovely afternoon and I thank Corinne Morgan who organises the group for inviting me and it was lovely to catch up and talk face to face with Sue Sanders who is one of our moderators on Facebook. 



Time for reflection

Why after 10 years since my diagnosis am I still surprised and annoyed to hear that these ladies received no information to the possibility of being diagnosed with lymphoedema?  Why aren’t these ladies being given the support they need for their lymphoedema?  Some of their stories beggar belief. I have more questions than answers:

  • Why are cancer patients still not being warned about the possibility of being diagnosed with lymphoedema?
  • Is it because healthcare professionals think we are only capable of dealing with the cancer diagnosis?
  • Why is there no long-term care plan in place for this lifelong condition?


We need the information to make informed choices


We are supposed to be living in a society where patient-centred care is part of the treatment plan. Care plans should be carried out through a Holistic Needs Assessment (HNA) for a person-centred approach, and this should not only include the individuals needs but the information they need to live with lymphoedema.  If we are to improve the quality of life for those diagnosed with lymphoedema then the patient must receive good quality, not the outdated and minimalistic information that is currently given.

One interesting question is emerging time and time again not only at my talk with Busom Buddies but online in our social media “Could I be predisposed to lymphoedema”? I have my own views on this subject, and this is very much a question for the future.

Finally my friend Maxine Tuffin from T & S Photography came along and took photographs as part of a photoshoot she was doing for me.  Lots of nice photographs.

Thank you to Busom Buddies for having me if you live in the Nuneaton Area this friendly group would love to see you, they meet on the 2nd Wednesday of the month at:

Weddington Social Club

Weddington Road, CV10 0ER

Contact: Corinne Morgan




A little bit of normality

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



After 15 months of being ‘safe at home’ several family crisis’s the month of June has seen a return to some normality.  We have had two meals out in restaurants catching up with friends and two barbecues at home with family. How lovely to be able to talk to people in person instead of via a video screen. Dare I hope more of this will follow?  Fingers crossed as I have a big birthday and our 50th Wedding Anniversary in August in the planning.

L-W-O Community has gone from strength to strength.   Our new logo designed by Chris Fickling has been very well received, with lots of you ‘liking’ the question mark and some suggesting it also looks as if it’s a magnifying glass whichever way you look at our new logo we think it represents the questions we frequently get asked "Lymph What".

The end of March I undertook a major project to build and design a new website, something I had been thinking about for 12 months.  Not a simple task, lots of hair pulling and expletives, however the results are quite different from our other websites which will remain for the foreseeable future as I work through the transitions and rebranding, we are undergoing. The new website and new logo will reflect the name of       L-W-O Community.  We will officially launch on the 1st July 2021, this will give us the ability to add far more tools to the toolbox and give us the ability to collect donations direct to our bank account, in addition CRM services, Marketing tools, Events and better Analytics which will free up more time for me.  I am getting better at scheduling in advance all our new posters and videos.



June is Lipoedema Awareness month and during the last month Mary from PhysioPod produced some amazing videos and I did a short write-up, if you missed her latest Newsletter do take a look.  Mary is currently taking a well-earned rest; I really do not know where she gets all her energy from but pleased, she is taking time for herself.  I look forward to our future working partnership, which is inspirational, fun and together we have reached far more people than either of us could have imagined.

In the meantime, L-W-O has received requests to work with other organisations and discussions are ongoing.  I love the idea of working with other organisations with similar interests, of raising the profile of lymphoedema while each of us retain our own independence.

From a financial standpoint we survived the last 15 months, it has been extremely tough however we did end the year in the black with a small bank balance.  Since then, we have received a donation from Juzo to cover our Canva software, which I am grateful to Adam Withey for his support.  The North Warwickshire Cancer group has sadly now disbanded and in accordance with charity law their funds must be redistributed to similar groups, and we meet that criterion.  I am truly thankful to them that they chose L-W-O Community as one of their recipients.  The funds we have received from them has secured our hosting package and domain names for the next two years. This has taken an immense pressure off me and while L-W-O will still need to fundraise, we are in a better position than we were at the financial year end of 20/21. I am also grateful to the members who make monthly donations, as their support helps pay for the standing orders.

Conferences, Courses, CPD points and Webinars have been in abundance over the last 15 months, and I thank all those of you who either sent me invitations via email or pointed out the courses or webinars I might be interested in.  I loved the 8th National Lymphoedema Conference nicely presented and informative. While in April and May I did have to decline several webinars due to family circumstances my biggest success was undertaking the 12-week course on Technology Enabled Care online with North Warwickshire & South Leicestershire College (NWSLC).  This course really has had a big impact on the way I think and will be useful as we move forward.

Finally, I would like to thank Michelle on Twitter, Lisa & Sue on Facebook Support Group and Marie on our Families Support Group, for keeping things running while I have dealt with all my family’s issues over the last nine months. 


“A bright future beckons. 

The onus is on us, through hard work, honesty and integrity,

to reach for the stars.” Nelson Mandela







What is Community?

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


When I first launched the website and Facebook page in 2013 the Facebook page generated quite a lot of interest and people who visited started to post some very personal details about lymphoedema.  Encouraged by my friends from what was then the Walsgrave Lymphoedema Support Group who suggested I needed to start a closed/private support group.  I smile now at the difficulties that first created because I simply did not have the skills or knowledge on how to do this.  It took me eight months to work out how I could set up an online support group and finally launched the Support Group on 14th May 2014.  Little did I know then of how we would grow.

Recently I was asked by a member of L-W-O Community’s Support Group:


“Would I be clearer with what I meant when referring to a community?"



Initially I thought I could answer this quickly and started to type my thoughts and decided that to me my definition was quite simple but the more I thought about the question the more I realised to others it might be questionable.  One paragraph became a blog.  This prompted me to remember a meeting attended by me in Coventry in 2014 and a similar question was asked.  “What is meant by ‘Community”?  This meeting was made up from Health Care and Social Care Professionals and at the time I was very much out of my depth. Each member gave their answer and when it came to me, I said, “Online Community”.  The horrified silence was enough to have me running for the door, thankfully there was no easy access. Ninety per cent of the room vehemently disagreed while the remainder did not disagree however, it was clear from the look on their faces at that time it was something they did not think was possible.

My Dad would often say to my Mum when I was growing up “How many times do I have to tell you, do not say to Gaynor she cannot do something”.  In my life I have dealt with many challenges, the main difference now is I probably think about tasks more before tackling them, that means I do not get into trouble quite as much.  From the early meeting in Coventry, I probably subconsciously said “Yes you can create an online community”. However, the idea was not consciously formed until 2016 when L-W-O’s message was simple:


“Raising the profile of lymphoedema and bringing together those living with this condition.”


From 2016 we have developed, grown, and accelerated through 2020/21 and L-W-O Community has embraced working online, as have businesses, charities, organisations, and people from all walks of life.  Over the years we have provided more visual content and clearly defined who we are.


In the Community or Online Community?


Going out into the community with an information stand where you give out information and leaflets while chatting to those that visit your stand means that you reach fewer people, and some people will walk away simply because you are chatting to someone else.  Anyone who has ever been involved with conferences, exhibitions or open days will tell you that it is great to meet the public and talk to people, but they are long, exhausting days in which you spend a huge amount of time organising and preparing to attend.  Are these events cost effective?  We are lucky as a small group that the days out we have attended pre-pandemic only cost us travel expenses and occasionally subsistence costs and we rarely paid for floorspace, stands or cubicles.  Exhibiting can run into thousands of pounds and therefore this would not be feasible for L-W-O Community.

On the other hand, an online community like our support groups allow the user to be anonymous if they wish but provides for interaction with likeminded people and some of our members have met with each other and become friends.  An online community can be fickle and requires constant community engagement with posts being acknowledged instantly.  Failure to do so means your audience loses interest and simply disappears.  However, I still believe that this is one of the most effective ways to reach your audience.

Over the last seven years we have moved from being told there is “no place online for a support group”, to being highly respected within the lymphoedema community.  L-W-O has now established a clear identity of its own and evolved into its own recognisable online community which I thank you all for being part of.

The education and knowledge we gain from each other should not be underestimated and importantly we have retained most of our members.  We are a positive friendly group providing a place to chat to others who live with lymphoedema.  To be supported, not judged, and to give our members a voice.  This is what I call a community.


If we as a community don't step-up to help each other.

Then who will?  Kathy Grimes




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"




View older posts »

Affilate program