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L-W-O Community

Primary, Secondary & Paediatric Lymphoedema Online & in the Community

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
 

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