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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

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Terminology

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: theLympha@gmail.com

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.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                    

Self-Isolation Week 9

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

 

 

 

 

 

Sunday 10th May – was a quiet day just the two of us, hubby pottered around while I took a day away from social media, to recharge my batteries after last weeks busy week. A day to remind myself that what I do for L-W-O is as a volunteer, a day for some ‘me’ time.  I cooked a lovely Sunday roast but having cooked everyday for the last nine weeks without a break I am beginning to say, “when this lockdown is over, I will never cook another meal”. I bet I am not the only that is saying this.

In the evening we settled down to watch our Prime Minister talk to the nation about the next phase of easing lockdown and like many of our friends we were left confused and angry by the new message to “stay alert”.  The consensus being that we all felt that lockdown should be for another three weeks as friends of our age understood it would be for twelve weeks, and we were looking at the 16th June before easing would start. 

Monday 11th May – I posted a mini poll and asked the question of our adult support group.

 

 

A 128 members took part and nine members who said that their lymphoedema felt better, this seems to be the ones who are not working and would normally be on their feet all day one member posted “At the start it did wonders with not being on my feet all day but now I am less active (trying to keep active) can’t wait to get back to work”.  It was encouraging to see that members working from home have done their best to keep up with exercise routines with Zumba being replaced by Pilates and many of them going for a walk.  Both our European members and UK members are missing swimming and the aqua exercises that they would normally do.  Initially there was a suggestion of members putting on weight when lockdown started.  An abundance of Easter eggs, home baked cakes and chocolate cookies from our grandchildren did not help us, even though they were nice.  The consensus was as they adapt to different exercises then they are now reaching their pre lockdown weight, including me.

 

Tuesday 12th May – was a day to catch up and share some of the articles I had been reading. As you might know I do huge amount of reading on lymphoedema and the lymphatic system but I do not post articles willy nilly and tend to only post articles that my non-medical brain can make sense of.

 

Wednesday 13th May – I asked the question of our adult group “When diagnosed with lymphoedema were you told not to do an activity that, you now know is a myth?”  We had 119 comments, and this was interesting so here are a few that created the most discussion.

 

  • No hot tubs and saunas
  • Hot tubs and saunas but no longer than 10 minutes
  • No shaving of legs with a wet razor
  • No tattoos
  • No Dettol baths
  • To be careful around pets
  • No gardening

 

This question also sparked lots of discussion on the importance of skin care and how this must be our priority.  I was pleased to see that the above list was shortest ‘do not do list’ I have seen in a long time.  One of our expert patients gave a detailed description on what could happen if you are bitten.  What did come out of this discussion is that some members are still being told there is nothing can be done for them therefore, given no advice. This is were groups like L-W-O do become useful.  What we need more than ever is a consensus to work together to make sure our community is all singing from the same song sheet. This leads very nicely to the following video from Professor Pillar “Why do GP’s and HCP’s need to learn about lymphoedema?”

Thursday 14th May - Today is this support groups 6th Birthday the time has flown; my life has changed beyond all recognition. Each day brings something new, and rather than slow down as a 'pensioner' I am busier than ever and just recently I have talked to somebody new everyday as L-W-O makes new connections The future for the L-W-O community is looking good. No longer do I go to bed at night wondering whether I have done the right thing. I have never been afraid of constructive criticism, but I no longer worry about the derogatory comments that sometimes come my way.

 

The British Lymphology Society has produced a survey aimed at Health-Care Professionals (HCP’s) The Covid-19 Impact Survey as there are serious concerns amongst patients and HCP’s that services may not be reinstated after lockdown is lifted.  Please take part.

 

Friday 15th May – this was fun or not I tried my hand at editing one of our YouTube videos after working out how to do this I successfully managed to edit out some dead spots on one video feeling chuffed with myself I thought I would try my hand at another, oh dear not so clever, not happening will have to try another day.  Throughout lockdown I have been looking at ways to improve the L-W-O website and successfully managed to disappear the whole of the Healthy Living Series, thankfully I found it all again. The hosting package seems to have added to some new features so I will have to be careful which buttons to push.  Running the website and keeping it up to date and relevant is a never ending learning curve, but I do enjoy seeing the results.  We receive no official funding towards website costs and and I rely heavily on the generosity of our members, followers and supporters so if you can support us by making a donation, no amount is too small and all donations are gratefully received.

 

Saturday 16th May – is always the hardest day because we cannot get out and do all the things we would do before lockdown.

 

What have we learned this week?

 

I guess this week for me it has been about the L-W-O support group  through lockdown it has been my life-saver, which has kept me busy away from the TV and all forms of negativity.  However, it is much more than that, it is the sense of understanding that our members have for each other.  Not just the support they give each other but the friendships that have been forged.  Everyone of them has a story to tell they need someone to listen, there are those that are baffled by lymphoedema and how its altered their lives but it is also encouraging that the members who have lived with lymphoedema for a long time are willing to support each other. Asking for help is not always easy and my friend Nemo has written a very thoughtful blog  ‘Lessons in asking for help’.

 

Support groups like ours are valuable and I sincerely hope that services for those of us living with lymphoedema will not be cut once lockdown is over.  I know what it is to have a rubbish day, a day when you would rather not get out of bed and you must push yourself just to start the day.  The resilience and support our members give to me and each other is awe inspiring.

 

Encourage, lift, and strengthen one another.

For the positive energy spread to one will be felt by us all.

For we are connected, one and all. –  Deborah Day

Self-Isolation Week 8

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

 

 

This has been a surreal week, I have spent lots of time reading various articles, despite the lockdown forged new friendships, remembered with quiet reflection, then celebrated VE day and as a community had two incredible opportunities put forward for L-W-O.

Sunday 3rd May – I was thrilled so see one of members who has put a lot of effort into walking found that her most swollen foot and gone down considerably that her shoe was loose.  When one of our members has a problem, I do feel their pain, but I am equally happy and delighted with their success.

Monday 4th – Hubby did our usual shop, but for the first time I got to go to the butchers. Yippee.  Who would of thought that would be such event?  Our local butchers are five minutes away in the car however it took us quite a long time to get there as we took a detour through the country lanes.  This was the first time in eight weeks that I had been out of the house for any length of time and the sense of freedom was amazing.   It was nice to see the meat and vegetables we were buying and for such a small shop I was impressed with the social distancing put in place.

Tuesday 5th May – I had a surreal day, an unplanned day.  It started at 8.30 am chatting to one of our supporters by 12.00 pm, still in P.J’s (not something that happens normally) an amazing opportunity had opened up that I couldn’t begin to imagine when I eased out of bed.  One of the aspects of running L-W-O is the amazing people I meet whether that person is one of our members or one of the many professional people in our community.

One lovely person I became acquainted with in 2017 via Twitter is Mary Fickling Director of  PhysioPod UK Limited Mary has been a big supporter of ours, sharing our posts, sometimes offering advice and becoming a valued friend.  We met first at a conference in 2018 and again at the MLD UK Conference 2019 together with her sister    Julie Soroczyn, Managing Director of PhysioPod.  Mary liked the gardening video I did and asked questions on why I was told not to do gardening and where did my passion for gardening come from?  I wrote a short piece for her and the result of which is now on the PhysioPod website with a lovely piece about L-W-O.  At the end of Wednesday morning Mary and I discussed a collaboration that relevant lymphoedema videos would go on their Vimeo channel.  Presently I am working on the video formats for Instagram as they are different to our other social media formats.

Eventually, I toddled upstairs for my shower, ideas buzzing around in my head thinking when I get back to my laptop, I must plan. Well we all know what thought did.  My bum had barely settled on my office chair when I received a direct message from another of our supporters who is a Clinician and Therapist and could we talk via telephone.  We spoke for two hours, about lymphoedema our community, the successes and most of all our frustrations.  I am looking forward to further conversations over the next few weeks as to how we can help each other but also, I hope this will give L-W-O more clinical information that can be added to our website.  By now my poor old head was in explode mode, so for the rest of the evening I watched trash TV and managed to clear my head before bedtime and thankfully, slept extremely well.  Big thank you to my hubby for keeping me in tea and coffee all day as even he understands the importance of staying hydrated.
 

We also shared a post on Manuela Lourenco Marques from Portugal, patient advocate, L-W-O member and the European Patient Advocacy Group (ePAG) Deputy Co-Chair for the Paediatric and Primary Lymphoedema Working Group (PPL WG).  Manuela shares her journey living with primary lymphoedema, what it means to her being an ePAG and participating in the PPL WG.

Wednesday 6th May – was a noticeably quiet day across our social media, which I was thankful for and quiet on the home front as well.

Thursday 7th May – A change of pace.  I am very lucky to belong to two local community forums the one especially has worked extremely hard on encouraging people to get involved in VE day, with local streets being decorated and the most amazing knitted/crocheted poppies decorating lampposts in their village.  My immediate local area has been vocal in coming out for the Thursday evening NHS Clap, and are calling for people to have a picnic in their front gardens while practising social distancing.  We did not think we had any bunting, but we found some and our eldest DIL found us some red, white and blue bunting.  Now the question, would we be able to get the neighbours to come out and picnic on their front gardens?  I designed, printed 30 plus leaflets and hubby posted them through letterboxes on our stretch of the road.  I had three who said yes immediately but we would have to wait and see.

My son with my youngest granddaughter in a baby seat and my six-year-old granddaughter came up to see us on a bike ride which made our day. In the evening hubby decorated the outside of the house with union jack bunting.  My youngest son asked how I got up on the roof to put the bunting up. Really? Me on a ladder, he should know better, I did my usual and supervised hubby, my days of climbing ladders or even a step-up stool are over because my balance is terrible

 

Incredibly happy today to welcome two new members to our children’s group.

 

Friday 8th May – Thrilled to see one other neighbour had put bunting up. At 11 a.m. there was the silence to observe and a time for quiet reflection.  Still not sure if anyone else would join us for a picnic in their front gardens, on the leaflets I had put the time 4 p.m. – 6 p.m.  Lunch time our afternoon tea arrived from the pub and it looked lovely, it is the first time in eight weeks we had treated ourselves.  Although our children and grandchildren have brought us treats like home baked cakes, chocolate cookies and Easter eggs, we have been spoiled.  Three o’clock and I sat and listened to Churchill’s speech.  Hubby took our small garden table and chairs out to the front of the drive.  One by one neighbours started to appear and I counted 12 households had come out.  This was a success for our normally quiet street.  With social distancing in mind we all got to have a chat, we met new neighbours and found out the names of those we did not know.  One of our neighbours is a musician and he brought his speakers out and we had music all afternoon.  Considering the restrictions, we were under we had a fantastic afternoon.  We finally wrapped up at 7.30 p.m., the afternoon ended with a promise when we can celebrate properly, we will get together and have a proper street party, but do not think that will be until next year.  Time for a tidy up before settling down to listen to the Queens speech.

Saturday 9th May   – I make no secret from a non-medical point of view that I believe genetics play a big part in how our bodies react and the traits we inherit so, I read this morning a fantastic article on Obesity: A Disease of the Brain?  All my life my weight has seesawed started to get out of hand at the end of my first pregnancy. Having tried most available diets between the 70’s – 90’s it was only when I started to become comfortable in my own skin and started to say to myself “this is me if you don’t like it tough” then things improved.  In both my maternal and paternal family, we had people who were either stick thin so you could see their ribs and then there were those who were exceptionally large.  I have always fallen in the middle.  From 2010 – 2015 my weight ballooned whilst taking Tamoxifen, nothing I did made any difference.  Once I stopped taking the Tamoxifen, I made a conscious decision to go back to how I ate as a child, in my own way I had worked out that if I had my main meal of the day. in the middle of the day, my weight held steady if not reduced. This was also the time I reverted to small plates and my meal plan became three meals a day breakfast, dinner, and tea in that order. However, being retired gives us freedom to eat when we are hungry in other words there are no set timings.

Those that follow me will know that gardening is a big part of my life and therefore eating the right amount of fruit and vegetables was never a problem, nor was the exercise. By using smaller plates, it took me six years to lose six stone.

Am I skinny?

No.

Am I considered obese by the medical profession?

Yes.

Am I happy with me?

Yes.

 

“It’s time to stop shaming and blaming people for their weight and start treating obesity for the chronic, relapsing disease science says it is”. I fully understand that being obese isn’t good for lymphoedema and I fully understand that we need to keep the lymphatic system moving and as the lymphatic system doesn’t have its own pump that the only way is to get moving, we need much more research and understanding.

Looking forward to next week as L-W-O website and Community page are in their seventh year but next week our biggest success which is our support group will celebrate its 6th birthday.  Lots of things have changed, as a community we are evolving and on a personal level the changes to my life have been massive.

 

What have we learned this week?

 

The importance of community whether a neighbourhood that comes together to celebrate an event like VE day or us staying home collectively to beat Covid-19 or our lymphoedema community working together to support each other so that we can all speak with one voice. We still do not know what the future holds for our lymphoedema community, will lymphoedema clinics be re-opened?  Will services resume? Or will services be drastically reduced?  When lockdown is officially over, and social distancing becomes a distant memory we will all need to keep advocating to get lymphoedema recognised and make sure there is support for those living with lymphoedema.  As the building blocks are put in place for us all to move forward our community must work together to make sure that progress is not stifled and we don’t stagnate.  This week I will leave you with one of my favourite quotes.

“A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has.”

—Margaret Mead

 

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