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Primary & Secondary Lymphoedema Online & in the Community

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New Year - New Decade

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

After a lovely long break, I will start to ease back into managing our community Monday 20th 2020 the break I needed for my own Wellbeing.  In this first blog of the New Year I will set out our future.

There are three of our members stories I wanted to tackle last year, but my health, stress, family commitments and time meant it wasn’t possible.  I will be contacting those members individually to follow up on their stories and see how we can tell their stories and share their experiences.

I realise finance is an uncomfortable discussion, and I have been investigating new and innovate ways in which we can raise much needed funds for L-W-O.  We receive no funding other than our members generosity through donations and apart from our monthly contributors’, funds are on the point of drying up.  Banks are making it tougher for small groups to operate and I am so thankful that our Treasurer’s account with Lloyds is working well as using PayPal is no longer an option.  Our PayPal account will be closed in the next two weeks.  If you would like to organise a coffee morning or other fundraising event on our behalf, please let me know.

Finding volunteers especially in the Coventry and Nuneaton area is a real challenge and limits our Community work.  L-W-O is looking for people who can spare 2/3 hours every three months, we need a pool of 8/10 people. The Community events we attend are good for networking but also have a social atmosphere this gives you the opportunity to meet some very nice people.  These events bring us into contact with people that don't have access to the internet.  Light refreshments are served by the hosts and car parking is free.

I also need online volunteers who can help research articles and people with design skills who can help promote our community.  There is a lot of information relating to lymphoedema, but I don’t post anything on our community if I haven’t read and understood an article sometimes this means reading an article several times.  Could you help with this?  Without more help we will standstill which means we are not giving support to our members and just as important we are not telling our stories to raise awareness of lymphoedema.

We were on the fringes of the Coventry & Warwickshire’s Year of Wellbeing in 2019 and I am happy to say the organisations year’s good work last year will continue as the organisation has become Coventry & Warwickshire’s Wellbeing for Life.  The countdown is now well and truly on for Coventry’s City of Culture 2021.  L-W-O will also continue to working on Self-Care for our members and to that end we have launched our Healthy Living private Facebook page which has currently 36 members.

Our Children’s private group has added new members over the last few weeks and we are beginning to understand better how Paediatric Lymphoedema and Lymphatic Malformations impact on family life.  I am proud that we have 72 families on board, and we have both European, UK, US professionals who understand Paediatric Lymphoedema.  Shortly I will be updating Ezmae-Kate's journey living with a Lymphatic Malformation and there will be new information on our understanding as a family of the procedures she is going through.

I have committed to nine events this year those will be Living Beyond Cancer for Macmillan and the Lymphoedema Symposium in Swansea.  As dates for conferences come up, I will be looking to see which are feasible for me to attend.  Sadly, we will not be organising our own Lymphoedema Awareness Day this year due the lack of volunteers.  I will also be looking to see how we can support Lymphoedema Awareness Week and to include our support for World Lymphoedema Awareness Day on March 6th, 2020.

Over the last five to six weeks I have had the time to take stock while there has been an incalculable number of hours gone into running L-W-O strangely it has also evolved sometimes taking on a life of its own.  There is now an acceptance that support groups and communities like ours do have a role to play in raising awareness of lymphoedema.  All this couldn’t be done without out members who also have a desire to understand their lymphoedema and how they can take charge of their own health.  Without our members, followers and supporters’ the need for groups like ours wouldn’t exist.

We still have a very long way to go but as 2020 gets underway I feel the optimism I had in the beginning has returned and I looking forward to moving our Community forward.

 

 

L-W-O End of Year Report 2019

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

 

As 2019 draws to a close, it’s time to reflect on our year, it has been challenging, stressful and at times I have seriously asked myself “why am I doing this”?  The answer is simple for the most part I enjoy raising awareness of lymphoedema and I am still as passionate as I was six years ago when I started this journey.

How does L-W-O operate?

The most difficult aspect of running L-W-O is dealing with the business this year there were some tough decisions to make, whether I was going to go back to running L-W-O by myself with the support of Admin on our social media or to go through the rigmarole of getting full charity status. The decision I made was to go back to running L-W-O by myself with the support of our online volunteers and asking for volunteers for each community event I was invited to attend.  I do all the admin, handle the finances with the help of Quick Books which keeps them in order and produces the professional profit and loss accounts to keep things straight.  In addition, I do all the graphic/posters as well as overseeing the day to day running of the group. 

People often get confused about our charity/non-profit status so let me clarify.  Our group falls into the category of a group whose income is below £5,000, the normal threshold for registration, so we do not have to register with the charity commission. Our average earnings/expenditure generally falls below £1000 p.a.  The expenditure goes towards insurance, software both accounting and graphics, stationary, printing costs, web hosting, domain names & relevant costs for community work.  No volunteer including myself receives a wage.  I do not charge for the use of an office or utility bills, including broadband/mobile costs which are all absorbed by my household expenditure, even though legally I can.  L-W-O receives no funding and we survive financially from the generosity of our members donations however; it has been a challenge this year and at the time of writing I am not sure how we will survive financially next year.  I am just about managing to keep us advert free.

Presently L-W-O has two bank accounts we have a Lloyds Bank Trustee account and a PayPal Business account and up until now donations although not all go into PayPal. Banking is changing with many banks tightening rules and security, it is very difficult for small groups, clubs’ societies to even have bank accounts.  PayPal have changed many of their rules and withdrawn their access card, which gave me the ability to pay bills online.  We don’t qualify for their business debit card without a business registration number or tax exemption certificates.  The convenience of PayPal was the donate buttons because it meant I didn’t have to put bank details on the website.  I will be closing PayPal soon which will cause a huge problem with regards to donations.    

Our policy documents have been produced with the guidance from WCAVA and NCVO.  L-W-O is a member of both these organisations.  I do not like having to put terms and conditions in place but dealing with our growing membership it has become necessary, it helps keep abuse and complaints to a minimum and I know from speaking to other group admins how lucky we have been.  This information I hope will give you a sense of what it takes to run our community and keeps everything transparent.

Social Media

L-W-O has been moving towards being a community for the last 18 months but this year the word ‘Community’ has been added to many of our groups giving more cohesion and this has strengthened our identity.   Many of our URL’s have been shortened to make them easier to find.

Our Facebook Online support group has seen a slow growth this year with 918 members living in the UK and 213 members coming from 34 countries making a total of 1131 members.  Our other social media platforms have grown faster with 1983 followers making our community a 3197 strong, with Instagram and Twitter growing the fastest.  This year we joined the Health Unlocked Community it is too early to say how this will progress.

Our children’s group has also grown in addition to our families we have several experts on board who have an interest in paediatric lymphoedema and we have welcomed more European families.

My granddaughter Paris spent some time redesigning our Pinterest account and taught me how to use Instagram to get more out of it this platform which greatly improved our reach and following.  The website in 2018 averaged 208 viewings per day, during 2019 the average has been 302 viewings per day.  There have been several major rewrites with the pages that became too long split into separate pages.  I undertook several online digital courses this year to help me understand Search Engine Optimisation (SEO) and I have looked at ways at improving layout and how to get the web pages to load faster.  

Training Days

Our members/followers will know from the beginning I have attended many different training events or conferences these, help me run L-W-O to learn more about lymphoedema and continue working as a volunteer in a challenging voluntary sector.  

The most exciting training day I attended was the radio interviewing course sponsored by Coventry & Warwickshire’s year of Wellbeing and run by Radio Plus Coventry.  I was then interviewed by Sam Ingram from Radio Plus Coventry with the interview being recorded and aired on Radio Plus two weeks later.  Out of the blue I was then invited by Sandra Godley at BBC CWR to talk about lymphoedema, this interview you will find on our You Tube channel, although nerve wracking it was fun to do and helped raise awareness of lymphoedema across Coventry and Warwickshire.

In the Community

This year I deliberately cut down on our community events as such a lot of work goes into these.  I did two Cervical Cancer Awareness events one in Coventry with the help of L-W-O member Martine Payne and the second in Nuneaton on my own.  In August I attended the Health & Well Being Event for Macmillan with the help of my family, The Living Well Beyond Cancer Event at UHCW on my own and finally the Well Being Festival at the Ricoh Arena Coventry with the help of my family.  Several events I turned down; the lack of volunteers really hampers the amount of work we can do to raise awareness in the community.  I am extremely grateful for my family who have stepped up to help when it is difficult to find volunteers from our group.

While there is always room for improvement, I am really pleased at the information stand we can now display at Health and Wellbeing Events but most importantly it’s all about raising awareness of lymphoedema.

The European Patient Advocacy Group 

This year I am thrilled that we were invited to join The European Patient Advocacy Group (ePAGs).  This was totally unexpected, and this led us to joining Rare Connect as part of their Paediatric and Primary Lymphoedema forum which means we have access to much more information to help and support our members.  This also means that I am now in touch with many more members of the European Lymphoedema community.  I would like to thank Pernille Henriksen for keeping us informed on Paediatric and Primary Lymphoedema and all the other support she has given me and our group this year.

Small Successes

This year I had the privilege of being interview by both The Lymphie Life and Grapevine Coventry & Warwickshire with both interviews being published on their websites and I was also asked to write an article on my BLS Conference experiences over the last two years this was published in the BLS News & Views Autumn Edition.

Due to a health and well-being event I attended in November, issues raised has led to me to corresponding with Royal College of Radiologists about the side effects of radiotherapy treatment in relationship to Lymphoedema it will be interesting to see how things develop in 2020.  I have also spoken to BLS on this subject via email and they have also emailed RCR to offer any assistance they might need in producing or reviewing documentation that will ensure future cancer patients will be given the full facts about the side-effects of radiotherapy treatment in relationship to lymphoedema, so that patients can make informed choices.
 

The Challenges for 2020

The biggest challenge for L-W-O will be to raise enough money to update our very tired looking banner, new leaflets and information cards. 

 Our objectives will be to:

  • Continue to raise awareness of lymphoedema
  • To undertake highlighting the importance of the lymphatic system
  • To continue to build working relationships with other organisations 

There is a great deal of work going on to highlight Genital Lymphoedema, Pelvic Radiation Disease and Paediatric Lymphoedema and I look forward to hearing and sharing information on these topics in 2020. 

Lymphoedema/Patient Advocates voices are being heard and it is slowly being accepted that we too can contribute whether you are in Canada, Europe, UK or the USA we are talking to each other sharing news and views, all with the common cause of raising awareness of lymphoedema.  I believe things are changing for the better I know from the conversations I have had this year not everyone agrees with me, but I have seen small positive steps especially in attitudes.  This year more than any other those living with lymphoedema are making a difference.  "Is the job done?"  Absolutely not, but there is a tiny glimmer and as one of my friendly acquaintances stated, “We are the generation that are beginning to shout the loudest”.

 I would like to thank all our members, followers and supporters for your continued support

Happy Christmas

Wishing you all Happiness, Love and Peace

Lymphoedema side effect of radiotherapy

Author:  Gaynor Leech Founder of L-W-O

 

It is no secret that since my diagnosis of lymphoedema as a direct result of radiotherapy treatment for breast cancer, has led to my journey of patient/lymphoedema advocate to raise awareness of this condition.  Receiving a diagnosis of cancer is terrifying and takes you to a very dark place.  Luckily in my case my prognosis was good from the start however, no one told me that lurking in the background was another condition that would be part of my life forever.

 

What is Lymphoedema?

The official definition of Lymphoedema is that it 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.  For the patient it is a huge lifestyle change of daily routines skincare, wearing of compression, weight control and exercise to keep your condition under control.   You live with swelling, inflammation, pain, constant tiredness, body image problems, mental health problems and in some cases isolation. The impact on your life should not be underestimated.

Initially in my case I had the support of the Lymphoedema Clinic at our local Hospice in Nuneaton, however eventually I was discharged as deemed to be able to look after myself.  Everyday health wise is a struggle and a challenge.

 

Raising Awareness

Not being informed that from my cancer treatment I would develop another illness caused more anger than the illness itself.  I needed to understand my diagnosis of lymphoedema and how I could best look after myself.  This led to two years of research, lots of reading, asking questions and eventually publishing my own website that led to me setting up various social media groups to support people like me who live with lymphoedema.  When I set out, I had no direction, no computer skills, just a burning desire to make sure nobody else would feel as helpless as I did.

 

Networking

From the beginning I had lots of support from my local Macmillan Manager Julie Hunt at George Eliot Hospital and she introduced me to many people who then introduced me to others.  Networking was completely new to me, but it has led to my group becoming part of the larger community of lymphoedema.  Most of the events and meetings I am invited to are cancer related.  In the early day’s courses like “Living Well Beyond Cancer” where just getting started offering support after active treatment had finished.  The support gives a safe place to talk about your feelings, to help with financial problems and discussing side effects of treatment.  For six years at each meeting I attended I asked the question “Why isn’t lymphoedema being included as a side-effect”?  Or “Why aren’t you including lymphoedema in your courses?”  Initially there was very little response, then I got to a stage where I would get an answer of “Maybe in the future”.

 

Living Well Beyond Cancer

Thankfully, the future arrived this year when I was invited to “Living Well Beyond Cancer” at UHCW (University Hospital Coventry & Warwickshire).  The event was very well organised by Julie Bliss from Macmillan Cancer and involved both patients’ organisations like L-W-O, members of the public, oncology, radiotherapy, physios and other staff from UHCW.  Like most events I attend with our information stand I learnt new things.  For me personally it was a successful event.

Having said that I was horrified when the side effects of radiotherapy treatment were listed after radiotherapy treatment into short term and long-term side effects, I waited patiently for my eureka moment.  Sadly, it never came Lymphoedema was not listed as a side effect. Over the next few hours Twitter lit up as we discussed why this information on lymphoedema was omitted, lots of question, no real answers.

The following day I decided to have a look at the Royal College of Radiologists website but couldn’t find any references that would be useful.  Therefore, I decided to email them, they came back with an acknowledgement and said they would look at my enquiry.

I explained that I had asked the following at the well-being event in the Q & A’s

  1. Why wasn't lymphoedema mentioned as a side-effect? Sadly, there was no clear answer.
  2. Do you warn people that this is a possibility? Answer, that would be up to oncology. 
     

I stated that, this clearly is not good enough and this opened up discussion on social media.  In this email today I am asking, does the Royal College give guidelines for radiologists re lymphoedema?  If not, why not?  Will the Royal College address this issue in their training materials? (This is an abridged version of my email to RCR).

 

Royal College of Radiologists

I was contacted by the Professional Services department who not only acknowledged my email but said they would look at my enquiry.  They sent a detailed reply a few days later for which I am truly grateful.  The relevant points:

 

It is critical that the professional consenting the patient for breast radiotherapy discuss the possibility of lymphoedema such that the patient can make an informed decision about their treatment.  This professional will usually be either an oncologist or a therapy radiographer. 

 

The Royal College of Radiologists (RCR) training curriculum for Clinical Oncology is clear in its requirements for all trainees to know about the recognised late effects of radiotherapy for all tumour sites and most definitely includes lymphoedema.   Moving forward, your email is actually quite timely as the RCR is currently in preliminary talks with expert groups to develop national consent forms for radiotherapy across the country.  For breast radiotherapy, this ensures all patients are appropriately counselled regarding the risk of lymphoedema before they make their decision with respect to treatment.  The RCR are aware that locally developed consent forms already address the possibility of lymphoedema as a side effect of breast radiotherapy, but national forms will help to ensure this is the standard practice across the UK.

 

I hope this is reassuring to you and answers your query.  Please do feel free to be in touch with us in the future as we very much value the opinion of stakeholders such as yourself as we shape strategy and training.

 

I realise this is related to breast lymphoedema this is due to the fact I included a brief history of how I came to have lymphoedema.  Presently I am sending out emails to other organisations to see how we can change to ensure every cancer patient is warned about the possibility of lymphoedema before treatment commences.   I do know that cancer patients' warnings on lymphoedema is still patchy from the conversations I have had this year both in the community and online.

 

 

 

 

 

 

 

 

 

 

Roller Coaster Highs and Lows

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

 

This month I have had to say NO

more often than I would like,

 it hasn't been all bad,

I just need to make sure I remember to take a break.

 

What a strange month August has been, it's been a roller coaster of highs and lows spending time housekeeping both at home and on L-W-O.  August is a month I usually look forward to with mine and hubby’s birthdays plus our wedding anniversary all within 10 days of one another.  This is the time when we have our annual barbecue with family and friends.  A few years ago, we would entertain about 50 but with the passing of time sadly many of our friends are no longer with us so this year there was 21 of us.  The atrocious weather in early August stayed dry although it did get chilly thankfully everyone had a good time.  Being with family and friends is so important what also makes this special is when your grandchildren ring up and say, "Is it OK Nan to bring a friend?" Then at the end of the day those friends come and give you hug and say they had a great time. 

 

I found the time to blitz and reorganise all our finances, knocking a massive £98.00 per month off our monthly household bills for the next 12 months, simply by changing suppliers and looking for better deals so well worth the effort.  This mundane often frustrating task I do every year, but this year was very successful.  In addition, I saved another £487.00 just by shopping around for goods that we needed.  This gave me a big boost.

 

Unfortunately, one of the projects I had planned which was to interview some of our professional supporters has been put on hold because my health took a serious tumble with a nasty water infection and a brief spell in hospital with a back problem.  My osteoarthritis/spondylitis has worsened so mobility has not been good. Taking stronger painkillers than I would like meant I ended up sleeping a lot more and while in hospital I was given high doses of painkillers that for 48 hours I was totally in LA LA land.  All this has impacted on my immune system and therefore it’s been a struggle to keep my swelling under control.  Health wise a terrible month.

 

In August I make a point of slowing down and having some me time usually because it is a slow month on social media.  However, my granddaughter came on board to help blitz our social media, teaching me new skills giving new life to our Pinterest page and showing me how to make more of our Instagram page.  Pinterest is very visual, so it is a lovely way to share all the posters I have created over the last six years for quick and easy reference. 

 

Instagram is where the younger members of the lymphoedema community access and this is a great resource and a place to chat.  The Instagram account had an average of two or three viewings a day but from the 26th August – 1st September we reached 463 people and we added eight new followers. 

 

Social Media is very much about how you use it, to make the most to raise awareness.  While I think L-W-O has had a lot of luck, understanding how it works, is making a difference.  When I started this journey six years ago, I had very few computer skills, very poor social media skills but, I love the fact I am still learning.  From time to time Grandchildren have helped but having my Granddaughter Paris on board has made a huge difference.  Apart from her IT skills she is so much faster than I am.

I am looking forward to our next social media project which we have plans for during September and October.

Finally, on the 29th of August with family on board as volunteers we attended the Macmillan Health and Well-being Event at The Holiday Inn Express, Nuneaton.  Brilliant event for networking and made some very useful connections, however it is talking to people like you and me who live with lymphoedema that makes these events special.

 

Finding a balance is hard but essential 

here are a few of my tips

 

Protecting L-W-O's Future

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

 

It is no secret that this year 2019 I have become increasingly dissatisfied with all the changes on Facebook.  While some of the changes have been for the better the majority have slowed us down.  This was the year Facebook informed us they were switching their focus to groups and I for one have felt that some of the changes have hindered us more than helped us.  However, I will state we are not leaving Facebook, I am consolidating what we do and protecting L-W-O’s future.

For a long time, I have looked at starting a community on HealthUnlocked, I did look when we first started in 2013 but each time, I looked, I came away thinking the time wasn’t right.  I now feel that we have enough support and followers to at least give this forum a try.  The forum has very good features and I can link it more easily to our website and even in these early day’s web traffic has gone up.

The big difference as far as I can see is that with Facebook you join a closed group, but to do that you have to already have a Facebook account and you use your name and profile picture.  For anyone who doesn’t want to join Facebook, can now  join our Community through HealthUnlocked.   

Facebook groups are produced on the back of the Admins personal account which means that if the Admin dies or gives up the group unless they have passed it over to someone else the group dies with them.  Although there is a feature on Facebook to leave your account to a trusted friend or relative there are no guarantees the group will continue.  I have worked too hard to let this happen.

HealthUnlocked is an open searchable forum, however on this if you wish to remain anonymous you can use an Avatar, as Admin, I can see a few details, but I don’t even have your email address.  This means it is more secure.  For me personally it also means I am not holding information that breaks any GDPR rules.

On Facebook the support is faceless, and you are very lucky if they respond to complaints or queries.  On HealthUnlocked I have been assigned a Partnership Manager which means I have someone I can talk to; I can have video conferencing meetings, put simply I have support if things don’t work out.

Benefits of HealthUnlocked

 

  • Clearly Assigned Topics
  • Less cluttered interface
  • Admin support for the Administrators/Volunteers
  • I can assign badges to team members
  • Easy links to website and our other social media
  • Donate button which saves you going via the website – goes direct to PayPal

 

I would like to take this opportunity of welcome Lesley Smith to our Admin group, Lesley who is from Ireland has agreed to help me administer HU.  In addition, I would like to thank Pernille Henriksen for starting posts and pointing out a couple of gremlins which have been addressed.  I would also like to thank Fiona Stevenson who is an ardent disability/accessibility campaigner who has been advising me on these issues.  Fi has agreed to continue to do so and has already joined HU.  Importantly we all live with Lymphoedema.

A special thank you to Maddie Yorke from HU who has patiently guided me through the process and will continue to support us as our Partnership Manager.

There have been a few teething problems, but I am thrilled to say we are now up and running and you will find us at:  https://healthunlocked.com/lwo-community

 

 

 

Boobs Bras and Lymphoedema

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

In the past I have only written about this briefly and if at times this subject appears insensitive then I am sorry, but this is part of my journey and the difficulties I dealt with and still deal with are real.

A recap for those that don’t know, in 2010 I was diagnosed with Breast Cancer, picked up in a routine mammogram through the NHS Breast Screening service, mine was not a lump it was in the tissue.  It was at a very early stage and for a couple weeks nobody was 100% until the results of the biopsy/histology reports came back. I had what was known as a DCIS (Ductal Carcinoma in Situ) and explained by my breast consultant as tiny grains of sand. I had a Wide Local Excision and two Sentinel Nodes  removed. everything moved very fast and my feet really didn’t touch the ground, but my long-term prospects were good.  By this time, it was Christmas and seeing my Breast Consultant who told me to “go home enjoy Christmas and the next 20 Christmases”.

 

Please always go for your mammogram - mine saved my life

 

The relief was immense but as a precaution while my Breast Consultant was sure he had removed it all, he suggested I had radiotherapy to mop up any remaining cells.  In the February I started my radiotherapy which apart from the extreme tiredness I thought compared to many of my friends I had sailed through.  Little did I know the massive lifestyle change that was waiting for me.

My skin was in very good condition despite the radiotherapy but my boob was hard, misshapen, heavy and my nipple seemed to drop with a fold that is a daily infection risk even now.  Pins and needles are ever present and at the end of the day tiredness and excruciating pain make me want to scream.  In May 2011 explaining the symptoms to my oncologist and after an examination she said, “I am sorry you have lymphoedema”. My response “Lymph What”?

Learning about Lymphoedema and the massive change in lifestyle was daunting but part of my psyche has always been when someone tells me I can’t do something I tend to ask, “why not?”  I must be one of the very few people around who is not angry at having lymphoedema and apart from the lack of education, information available at the time of my diagnosis it’s the side-effects that come with it that frustrate and irate.

Routine has become essential from daily skincare, massage, drinking enough water, movement, sleep and generally following a healthy lifestyle.  All very tedious on a day when you don’t want to get out of bed or you have 101 things that you need to do and you simply haven't got the energy. 

 

Self-care however wearing is so important

 

This is where my bra became one of my biggest irritations because there has yet to be a bra invented that fits a lymphie breast and a non-lymphie breast at the same time, that will give the support I need, feel comfortable enough to wear all day, and even if it is not seen under my clothes makes me feel feminine.

In the beginning I had three bra changes a day, sometimes more. From shower to lunchtime I could probably get away with a D cup, from lunchtime to teatime a DD cup and by the end of the day there was no accounting for size as my boob was so swollen and painful further exasperated by the deep indentations on my skin and under my arms from an ill-fitting bra.  Not good for lymphoedema.

Top Tip

When buying a new bra always get professionally measured - breast clinics or major high street stores can do this
 

This leads to another irritation the battle of the boobs.  Lymphoedema right boob swollen, painful, heavy screaming to be let out of the tight constraints and my left boob by the end of the day flopping about in a cup size that offered no support and screaming “what have I done to deserve this”.

As a woman I do not want my bra to have two-inch plus straps that will in inevitably leave indentations.  I want a bra that will move with me, one that preferably, I don’t know that I am wearing. I want side supports that fit comfortably, so that I don’t bulge out the side but won’t leave indentations and will expand when needed.

I want cotton inserts especially for those hot summer’s days. The back fastenings must be firm, preferably in my case four fastenings.  As we get older some of us have problems doing up and undoing bras and as every woman will tell you she has her own way of doing things.  Yet I have never found a front bra opening that’s attractive and will do all the above.  

 

Most of all I want COLOUR.

 

  • Why are specialist manufacturers so unimaginative?
  • Why can they only produce Beige, Black or White?
  • Whatever happened to matching underwear?

 

It took me four years to find a bra, that comes close to what I need, it expands with me where I need it, stays in shape on the side I don’t and most of all when I rip it off at night it stays its normal size. I want colour choice and maybe a little bow or pearl or both that nobody will probably see.  Dare I even ask if it will come with a matching pair of panties! 

I just want to feel good 

 

Musings of a Pensioner

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

 

I am sitting staring at a blank page and feeling the urge to write.  The house is quiet, my 18-year granddaughter is having a sleepover and at 12.30 p.m. she still hasn’t surfaced.  Hubby is on the golf course. 

 

I run L-W-O from my conservatory, so right now I am staring out at our colourful plants and pots, there’s a slight warm breeze coming through the open patio and although the day is bright it is cloudy.  There are blackbirds on the bird feeder, robins, blue tits and the dreaded pigeons nesting in our cherry tree making a mess of the garden furniture as they fly into the tree.  My treat of the day is a latte, "yes, I know coffee isn’t good for lymphoedema"  but with the busy life I have I need to be kind to me.

 

Life is full of routines, like skin-care, drinking lots of fluids, movement, healthy lifestyle which have become automatic but there is the more dreary routines of housework which I hate, ironing, not if I can help it, budgeting, planning and preparing meals, keeping a roof over heads like every other person I know.   

 

Retirement was not something Hubby or I planned for, contemplated or even thought about much, it was this scary event in the future when we were too old to do anything.  Yet retirement has been a revelation that even with all the health issues we both have its something we now both cherish, we eat, sleep when we need to, no longer clock watching and yet with thought, planning, home alterations, and open-minds we have a good life.

 

Today the diary is empty, there are no time limits, no pressure, time for contemplation and where my next idea or inspiration will come from.  I allow myself a smile, when I look back at all the new skills, I have learnt over the last few years.  Basic word processing skills have progressed so much I understand all the different functions that the ribbon holds at the top of the page on my laptop.  Graphic designer, although I still have a lot to learn these attempts have improved so much from my early days using Publisher to the programme I now use.  Blogger, V Blogger, YouTuber, Researcher and I still don’t get Twitter, but I can now Tweet, really, I ask myself?  “Who is the person?”

 

Finally, it’s after 2.00 pm, Granddaughter still hasn’t surfaced, Hubby has texted to say he is on his way home, which is his way of saying "put the dinner on".  Oops not given it a thought, so good luck with that one!

 

My Heroes - Fiona Stevenson

Author: Gaynor Leech Founder of L-W-O

Today I want to tell you about one of my heroes. Fiona Stevenson is the Founder of Swimming after Surgery (SAS) that supports women who have had breast cancer and encourages them to go swimming.   Fi  prefers to educate and frequently speaks about overcoming challenges of breast cancer, and disabilities, her website Fiona's Inspirational Talks is full of positivity.. Recently she looked at our ‘Out and about’ web page and made suggestions on what you should look for when planning your journey.  Fi has been a member of L-W-O support group since September 2014.

As part of Telford Health Care Champions, Fiona attended Blood Pressure Training run by Public Health.  The trainers had no idea about lymphoedema and insisted that you could not take blood pressure from a leg. I would have loved to be in the room when Fiona had to show them how to take Blood Pressure from a lower limb.

One of the reasons I love what I do is because of the people I am privileged to meet, there are many people working out in the community making a big difference to peoples lives, Fi is one of them.

Living with Lipoedema by Jo Mander

Edited by Gaynor Leech Founder of L-W-O

 

Hi I am Jo, and I have Lipoedema. I was diagnosed in Jan 2017. Lipoedema is a chronic condition that causes fat to accumulate below the waist, affecting hips, buttocks and legs that are out of proportion with the upper body. It is related to major hormone event like puberty pregnancy and the menopause. It runs in my family and I recognise that I have the same body shape as my Aunt and Grandma on my Dad’s side. I also have Lymphoedema swelling in my legs.  It is considered to be a genetic condition and thought to only affect women.  Lipoedema can skip a generation for example grandmother and granddaughter but not necessarily the mother.

Photograph Courtesy of Jo Mander

Relief of Diagnosis

When I first received my diagnosis, I was very relieved. It wasn’t my fault; I have a body that is programmed wrongly and stores fat in a very strange way. The reverse side of this was that Lipoedema was here to stay! Although intellectually I already knew that no amount of dieting or exercise makes any difference – there was always something at the back of my mind that said – you will sort this, you will just need to be more focused on getting ‘it’ right, or ’it’s my own fault because I wasn’t doing ‘it’ properly (even though I didn’t really know what ‘it’ was). Emotionally that is very difficult as I am a do’er, a problem solver, a fixer, and I can’t fix myself. 

My Daily Challenges

I now know that my huge legs and the oedema (swelling) and the reduced mobility isn’t going away and that I going to need a lot of determination to prevent it getting worse. My day to day challenges are quite varied but here’s a few things that annoy. People think I am fat (of course I am I have a genetic fat disorder!).  Body image is a big deal today. Some people and some health professionals make an immediate assumption that I am obese and that I am incapable of eating healthily, that I cannot / do not / choose not to follow instructions regarding healthy eating and exercise. Even when provided with a full explanation of what Lipoedema is (and trust me I am very happy to explain!) there is always someone who will make an inappropriate comment there is always someone who will say lose some more weight or exercise more, or just eat less and the weight will come off!

The World is not Designed

  • The world is not designed for me. Seats are too small (especially if they have arms) and usually very uncomfortable. This is a big deal, restaurants, toilets, airplanes, cinemas, buses, trains, most places really.  
  • Buying size 8 eee wide shoes that have a decent arch support, that I want to wear is challenging to say the least.  
  • Buying clothes that fit rather than I want to wear
  • Wide leg trousers that are not wide enough
  • Plus size AND tall – hello clothing manufacturers I am not the only one who needs this.
  • Pants – that’s another story all together.
  • Getting on and off the floor, I can, but it hurts my knees going down and it’s easier to have something to hold on to, to get up. This was something I have always taken for granted and is one of a number of things that I no longer find easy to do.

Tiredness

I can’t remember the last time I didn’t feel tired, I just exist with varying degrees of tiredness which varies from ok and functioning to I am sooo tired that I can’t think any more and I need a nap (bit like a mobile phone that needs its battery recharged).

NHS and Me

Although Lipoedema has been known about since the 1940’s very few Health Professionals are aware of it.  There is no cure. A very specific type of liposuction can be used to reshape the affected areas, but this is seen as cosmetic and is not available on the NHS. Compression garments are used for management, to help with the lymph flow and the swelling. I get no other support. I pay for physio and lymphatic drainage reflexology (RLD) and massage all of which I find very beneficial.

Changes I would like to see in the Lipoedema world? Early Diagnosis. Lipoedema affect approx. 1:10 women I have had this easily since my early twenties, maybe my teens, when I had large thighs which would rub and get very sore. For my physical health: If I had been informed, I would have known to keep my weight stable, to keep my leg muscles strong, my Lipoedema may not have progressed to where it is today. For my mental health: I have spent most of my life being told you are fat, you don’t do as you are told, you are not trying, it’s your own fault……. trust me it doesn’t help.

Sketch provided Courtesy of Jo Mander

Jo’s Philosophy

Life is very short and at times it can be fragile. I find what comes around goes around. If you can help someone or do a kindness, then they will do it for someone else and it comes back to you eventually. Be kind. A smile, a Hello, might be something small but may be important to the person who receives it.  Online Support groups are invaluable as there is usually someone around to help when you need it. L-W-O is always very helpful and supportive

Conversation with Lisa West

Author: Gaynor Leech Founder of L-W-O

Lisa first shared her story with L-W-O in October 2017, and what a journey it's been for her.   She 38 years old and lives in the beautiful city of Exeter in Devon. Up until she was seven years old, she was fit and healthy apart from a couple of broken bones, and normal childhood injuries. In 1988, Lisa remembers feeling extremely unwell with a pain in the left knee, this went on for days until her Mum took her to their local hospital. The next part is blurry as she spent 3 weeks in hospital as she had osteomyelitis in her knee. This was explained that it was septic arthritis, poison on the bone.

 

A few years passed and she seemed to pick up every infection going and remembers the sadness in her Mum's face each time Lisa was admitted to hospital. Lymphoedema not only affects the person living with the condition but all the family.  “I remember my older sister begging the doctors to stop me hurting.”

Lisa's West's family, her Sister, Mum and Lisa

 

Cellulitis

 

When she turned 14, she had a red swollen hand again admitted to hospital and was told it was tendonitis but unknown to her until years later it was recorded in her notes as cellulitis.

On the day Lisa turned 21, she felt like she was coming down with the flu, then a rash appeared above my knee.  At that time there was a realisation that a pattern had formed which became a serious issue, every 7 years.  “This turned out to be her first serious case of cellulitis.  Again, she was treated by IV antibiotics. I still seemed to pick up every infection going from ear, throat and skin infections and nobody can tell me why?”

 

In 2007 those those flu-like symptoms reappeared, the shivering the immense headache, her body in pain and then hours later the rash had pickled the whole of her right foot and leg. “I remember the fear as I was told it was cellulitis again but this time, I had septicemia and I wasn't in a good way and they were hoping it had been caught in time. Thankfully someone was looking down on me because thanks to all the wonderful doctors and specialists I came on and given long term antibiotics, to try and prevent this reoccurring.”

 

This is where Lisa felt her journey really began. Thinking back to August 17th, 2011, she had been married just over 3 months and should have been enjoying being a newlywed.  She woke her husband in the early hours telling him she was freezing, he looked at her with what I now call ‘the look’.  He knew straight away it was cellulitis. Lisa left it all day (foolishly) and now knows better, because then she started hallucinating.

 

“I remember the confusion, the panic on everyone faces around me but if felt calm just wanted the headache to go and I wanted to get warm”.  This time it was back in the left leg she remembers the swelling and saying, “it will go down, won't it?”  The doctor replying “yes of course”.  Lisa had septicemia again and was moved to a high dependency ward, there was talk of surgery and skin grafts. 

Lisa with her very support Hubby

 

Lymphoedema

 

“This was the worst time of my life”.  She was fighting to stay alive her organs were failing.  Again, the medical team were amazing, four months later and still off work, the swelling was still there.  Each day was a struggle feeling so tired and she had no energy.  Lisa had regular GP appointments and she remembers asking “when will my leg return to normal?”  In a soft voice and sadness in his eyes her GP said, “it won't, you have lymphoedema in both legs”. I remember saying ok, “what's that?”  Lisa doesn't really remember his full reply, apart from him saying that he would get her measured for some stockings. 

 

Two months later I was referred to the lymphoedema clinic run by three Macmillan nurses and I remember thinking why I don't have cancer?  She was measured and fitted with those brown stockings my ‘granny stockings’ as she calls them.  Lisa was able to take this all in her stride, but some days she felt confusion and didn't know what this diagnosis meant to her or what would happen next and she still believed her life would return to normal.  Now Lisa wears compression wraps and she cannot go without them  because “I swell beyond belief the limbs become heavy and hard”. 

 

Lisa didn't realise the battle she was going to have. She developed severe eczema on both legs which leaves her prone to infections. Daily routines include applying topical creams and moisturisers to her legs four times a day. Hospital appointments and GP appointments are constant.  She has been prescribed the medication Methotrexate for her eczema which suppresses her already low immune system and has monthly blood tests. Lisa has experienced over 20 different strains of cellulitis since she was 14 and because of getting septicemia so many times it has damaged her lymph nodes in her groin which led to her being a two-legged Lymphie. 

 

Mental Health

 

Some days “I do say why me? Then I'm like snap out of it be grateful you have your life, you still have two legs, and then I smile because I am lucky because I am here living my life.  I have dark days but without my husband and family I don't know where I'd be. People say I don't know how you do it, but they have got me through they have shared my journey with me”.

 

Since L-W-O published her blog in October 2017 she has updated her journey for us.  Lisa knew at the time that it would only be part of her journey and couldn’t have known what the future held.

 

Since writing for us Lisa has had countless more bouts of the dreaded cellulitis. In 2018 she was hospitalised twice. This has taken a toll on her mental health.  Nobody can give her the answers as to why she keeps getting cellulitis. “I take care of myself; I look after my skin, but it keeps rearing its ugly head. I have had it every month from July 2018 until February 2019.

 

“I’ve cried so many tears, the frustration has gotten to me I felt like giving in The support from my GP, my Lymphie nurses, my dermatologist consultant as always has been amazing. But I baffle them, and they say I’m unlucky”.  

 

On one of the hospital admissions last year an A&E consultant asked if she’d ever been given a heart scan or spinal scan?  “I looked at him blankly as did my husband and asked why?” This made no sense to Lisa as she had cellulitis.  The consultant explained that germs can hide themselves in heart valves or the spinal cord and break free or remain undetected. I panicked thinking he was insinuating I had a heart issue. He went to speak to someone else, but I never saw him again, the problem with A&E is that it is like a conveyor belt. This is still something I need to find out more about because the cellulitis has taken a toll on my legs and caused more significant damage to my legs.

 

Lisa did put the question to our support group members on why an A&E consultant would ask if she had been given a scan.  Unfortunately, no one could help with her question.  However, at the LSN Conference 2018 I showed the post to Karen Friett CEO of the Lymphoedema Support Network and she suggested I spoke to Professor Peter Mortimer who was there as one of the speakers.  He read the posts but because they were vague and out of context, he couldn’t give an answer but did suggest we put the question on the open forum for Lymphatic Education & Research Network (LE&RN).  The care Lisa receives from her Lymphoedema clinic has been spot on. New wraps, bandaging and LymphAssist treatment in the last few months have made things more bearable. Sadly, for Lisa she was diagnosed with fybromyalgia which her medical team believe was triggered by her lymphoedema and she now received specialist care.

 

Family and Friends

 

Her confidence has been knocked more than she thought possible, but she has found a new circle of friends and attends local wrestling shows around the southwest that has given her a new lease of life. “Watching these guys help me take a break from the stresses and strains of everything.  My husband and family are as amazing as ever.  I couldn’t do this alone”.

Lisa with her two favourite Wrestlers

 

“Every day I learn something new about lymphoedema, at first, I felt ashamed and lost confidence but now I'm loud and proud and shout about my lymphoedema because we need to raise awareness about it. I always talk about it and make sure I educate people, you can find someone to talk to that understands by joining a support group.  I hope to anyone going through this realises you are not alone; we are a family.

 

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