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Primary & Secondary Lymphoedema Online & in the Community

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Guest Blog Steve Kelland

Hi, Gaynor - good health greetings from Canada!

Written 5th June 2018: 

"Gaynor Leech - re: the wording used to describe lymphedema/lymphoedema, I suggest you might want to add "progressive" to its unwelcome 'attributes'. The more I monitor social media traffic involving the full range of LE-impacted individuals from neophyte (newbie) to those who are necessarily more experienced (living with LE, including time as un-/under-/mis-diagnosed afflictee), the more I see overlooked or unacknowledged, critically important aspects of LE:

1) it is a disease, not a condition or disorder;


2) it is chronic (so, not a case of 'getting better', as well-meaning people are wont to ask);


3) incurable (so far!) ... (fortunately, more researchers are becoming engaged & interested in the continuum of lymphatic diseases); & ...


4) progressive - while this word often seems positive, depending on context within social affairs, policies, regulations, etc....in this instance it is rather indicative of the persistent, resilient destructive nature of LE. In fact, it is precisely because of this fourth attribute that those of us living with LE must be forever vigilant & compliant with treatment & comprehensive management regimes. We must be 'up to the task'. There is no alternate option.... yet!  Which brings me to

 

5) where organisations such as yours are an invaluable resource in spreading hopefulness & helpfulness. In the tri-part path that many with LE seek out (inspiration, motivation & aspiration in 'progressive' order), you can add, amplify or echo that necessary "voice" of positivity. Ideally, as in your case, efforts move beyond passive awareness, into active pursuit of attention, recognition, care, support & change for the "LE Community". I refer to the "Lymphedema/Lymphoedema Community", which - since establishment of "World Lymphedema Day - 6 March 2016" - no longer recognizes national boundaries in its fight vs. this 'scourge'. We cannot afford any further subdivisions in this community-wide effort...this would only lead to (further) marginalization.
Good health (& good work!) –

Canada - MALE (Male Advocate for LymphEdema) | FB: Lymphedema - LE Nexus Canada
"Shrinking the Lymphoedema World while Strengthening the Lymphedema Community...upside & down under!"

Steve has been a member of L-W-O since 28th November 2016 and regularly contributes thoughts, comments and information which are valued by myself and our members.  We are very fortunate that L-W-O is not only in the UK but now truly has a global following.  You can follow Steve at Lymphedema - LE Nexus Canada

Guest Blog Barbara Brookes

My Story 

Following Breast Cancer Surgery, in 2003, I didn’t develop Lymphoedema until 8 months afterwards and when at first, ‘it reared its ugly head’ - it frightened the living day lights out of me!  I’d been to my Daughters the night before for a meal, with some family & close friends, having gone straight from work I’d travelled the motorway home and after having fed the cat, and followed my night time ritual etc, I retired to bed as I had work the following day.

I arose at my usual time 6.15, feeling a bit flu like, took my morning shower where I noted my left arm felt heavier and was a ‘little pink and blotchy!’ By the time I’d completed my morning dress ritual, prior to travelling the 15-mile drive to work, it became apparent I was feeling so poorly I wouldn’t make it to the car never mind the motorway! I was astounded by just how quickly I began to feel so -so ill.

'What the heck was going on now?'  I recall thinking to myself!

I had begun throwing up without even having eaten four spoons of my breakfast and my left arm was gaining a vibrant red map like appearance, by now I felt so so hot! I also began to shiver as if I’d been in a snow storm! I’d rang through to our main message centre at work leaving a message stating I was going to my GP as feeling very unwell!  I didn’t elaborate too much detail as wasn’t sure who’d intercept my message before Managers arrived (usually much later than any of our team). 

I’d tried to ring my Daughter in Birmingham, but she was by now about to complete the school run plus had to attend a hearing appointment for my youngest (at the time) Grandson (she had three boys all under 10) so I had left a message with her neighbour, and a good friend to me. I’d tried to close my eyes whilst on the sofa thinking ‘maybe if I have a little sleep it’ll pass! So so wrong was I’!  I began really shivering and naturally wanted to pull a throw up over myself but was so nauseated I had to keep going to the bathroom!

When Donna my eldest Daughter had been informed of my dilemma, she had in turn rang my Partner Jon (I had not yet consented to getting hitched, as we’d both married before) and Jon had taken a Management position by working / staying in London at his Mums weekdays and it would be a couple of hours before he could get up to the Midlands via busy morning rush hour traffic! - especially M25 & M40!!

I'd tried to ring for a GP appointment but 'as always'- the phone was constantly engaged!

As I was getting ‘a bit panicky, ‘I rang my Breast Cancer Team at Nuneaton George Elliot hospital where I’d undergone my initial surgery, and early morning ‘though it was’ I knew someone would be there on call duty, I was immediately put through to a Mrs Sheila Differ, (a Specialist Lymphoedema Sister in the Oncology Dept).

Sheila was very helpful, calm, kind and reassuring.

After I’d described to her my symptoms, Sheila explained to me it sounded like I had a ‘severe lymphatic infection namely - cellulitis under the heading of Lymphoedema! and that it didn’t always appear following Cancer surgery, but that I’d need antibiotics immediately, though as I was experiencing such bad nausea, quite likely ‘I’d need to go to hospital to have them intravenously! 

 

I had no concept of what this meant to be truthful!

I rang the GP again and this time got through - where it was suggested by receptionist I try to get to the surgery; however, the surgery was approx 2 -3 miles away and there were no buses from the village I then lived in! (Near Tamworth). I could not have driven with my swollen and now extremely painful arm! No offer of any transport or other means of it were suggested, from receptionist!

I was ready to call a taxi after I’d put down the phone to GP, but then I saw a neighbour through my window who was getting in her car, I opened my front door and called to her ‘were it possible to give her the money for petrol , in return for a lift to the surgery approx 3 miles away, however, she said  'No ‘sorry, I’m already late for work'  and drove off!

My arm was now heavier extremely swollen and painful and crimson red! I could barely stay focused, stand, nor raise my arm up. All this since rising at 6.15 am this morning! I was reeling with how poorly I felt, I’d had to half sit half lie on my sofa as I felt I was so feverish, though shivering I would pass out!

I felt so ill, so scared and alone I just could not believe how I’d deteriorated since rising from my bed this morning.  I drifted in and out of what must have been semi consciousness!

I glanced at the clock it was now 11.25 am.  My front door knocker went Jon stood there saying ‘I’m here! I have ‘never felt so so relieved to see someone in all my life! He’d received Donna’s message and driven over 240 odd miles to be at my side! He took one look at me and said ‘I’m taking you straight to A & E Dept at George Elliot Hospital! Meanwhile the phone went and Sheila Differ had rang my GP who was calling me to say ‘forget coming to the surgery, go straight to hospital ‘- I replied I am, my partner has arrived from London and he’s taking me!

I was admitted immediately by a Consultant Dr, and varied numbers of ‘student Doctors kept coming to the cubicle I was in, to see my arm and make notes, as I awaited a bed on a ward! They’d had the condition ‘touched upon lightly in their tutorials but had never actually had in depth details or seen examples of the serious conditions!  ‘I felt too awfully sick to concern myself; or resent me ‘feeling like the student’s afternoon Matinee show’.  By now it looked as if I’d had bright red paint thrown up my left arm or been burned!  They had ‘ever seen anything like it they whispered as they made their interpretations of ‘in medical terminology ‘what was happening to my arm!

A cannula had been rather amateurly attempted 3 times in my right wrist by a couple of the poor students, in order to later administer the antibiotics Inter-Venously!

Although they looked worried at the outcome, I feel sure ‘I beat them with my concerns as I watched my life blood drip all over the bedding’! They eventually resolved to fetching a Consultant ‘somewhat more experienced‘ to achieve the end result - ‘thank goodness!!’ At last I was admitted to the ward, kept on IV antibiotics and stayed there for three long days, when I was informed of the rules that would ‘dominate my life long and quite debilitating condition forth -with! ‘

(1) I would have to wear compression sleeve to reduce swelling once infection was ‘in hand’

(2) No injections including IV drips, or needles of any kind, no blood pressure cuffs, were ever to be used in that arm!

(3) I would need to take great care of the skin, keep it clean, supple - & prevent the risk of mozzy bites / or other insect bites! To avoid infection!

(4) As I had a pet cat be careful of scratches!

(5) Gardening - thorns, I would now have to wear gloves to protect my left hand from any risk of infection where the skin could be broken!

In fact, to generally to monitor every household chore and its risks on a daily basis for the rest of my days!

The ‘Good news’ I was informed by my Consultant was! - that if I promised to rest completely, also complete a ‘full 14-day course of antibiotics‘ or more if necessary following my release from my hospital bed, he would consider my discharge, ‘This plus a referral to Mrs Sheila Differ for compression sleeve fitting, plus regular appointments to ensure my condition ‘Lymphoedema’ was being monitored until it was felt I was confidently ‘self-managing it’.  I was due to be discharged on the Friday, saying I would return to work on the Monday! “Then if that is the case, said the Consultant, I shall not discharge you!

I explained that since losing time from work through Cancer surgery and follow up treatment, the previous year, my Managers had made life ‘doubly hellish’, they made it very clear my job was under potential threat, and I could have my employment Terminated! Although my youngest Daughter was now in her own accommodation I was very aware that my home was at risk!

I still had a mortgage to pay and this was so frightening!

The Consultant was extremely supportive and said ‘I shall write to your Managers making it very clear I am signing you off work for at least six working weeks’!  We shall see if they choose to challenge this ‘in Law ‘they would be acting ‘both foolishly as well as ‘illegally’.

I don’t wish to ‘bore you all with the stressful time I underwent on my return to work’ - where I had been  for over 26 years!, but I felt I had to turn ‘emotional summersaults on a daily basis, ‘ to ensure I stayed employed - with hindsight it was the worse period of my life, including having lost both parents as a child of 6 & 12 years of age! 

However, suffice to say I was extremely bullied, had to fight through an appeal against a written warning for a ‘secondary sick leave period’ - having explained that it should have been included in the period of sickness covering my Cancer treatment as Lymphoedema was as a ‘direct result of life saving Breast Cancer Surgery!

I ‘won my appeal, hands down through the keeping of ‘copious notes of meetings, telephone conversations, and exchanges of emails- in my daily diary!

I am a dyslexic person and suffered ‘bullying techniques - including placing me in locations which far exceeded my then current mileage / travelling time-  to my usual places of work! 

Closing down my post and putting me on a redeployment list where I had ‘only jobs offered at lower salary scales, and on permanent nights!  I was sent to work in an office library, with no windows no telephone no proper desk or chair! any equal pay posts I’d applied for was regularly turned down! Even though there were no real skills gaps! Or training offered to fill any identified gaps within new fields of employment!

They had waited & hoped for me to ‘have had enough to make me resign!

I refused and thought - If I beat Cancer, I’m not gonna let you beat me now!!!

Not conducive to help my Lymphoedema at all, as we all know Stress has a negative effect on our bodies and immune deficit!  Terrible stressful time I’ve practised well to choose to forget!

I eventually took a lower paid post to maintain my mortgage, of course this impacted on my pension outcome, as our pensions were then based on the final three years of our working life income!  I also lost my ‘car user allowance too ‘, so was also financially down trodden!   However, I managed to gain a promotion once in my new position for a year, and eventually I began feeling ‘more content with a new Management structure who valued & respected me, and so I slowly began to recover from the memories of the ‘previous oppressive atmosphere I’d been made to endure!’ 

I also believe in ‘Karma!!!

On a much happier note Jon and I had married, and I feel this was an uplifting and obviously joyful experience, which helped get me through the bad times. We spend a lot of time at work and need to feel as least stressed as possible whilst we are there; I completed a further 5 years before taking my retirement with Joy in 2011. Sadly fate ‘struck us another cruel blow’, as it was confirmed Jon was going to lose his job, at the same time and being profoundly deaf and disabled (we’re both deaf but I use two hearing aids) he struggled to secure further employment!  We had fortunately cleared our mortgage thank goodness and have survived the storm! 

I have managed my condition quite well over the past 15 or so years - having only been hospitalised twice since that first time mentioned above, making three in total!  One time was for two day’s stay on IV antibiotics, the first New Year’s Day night, we had moved town and house to where we now live back in 2005!

Whilst the last time being five days’ in 2014 in my local hospital bed, where the worst spread of infection / cellulitis came on within 3 hours one morning and no prior warning had occurred! (I’ve enclosed a photo of my left arm in this period of infection.

I had been long term member of a Lymphoedema support group founded by Sheila Differ, where I’d been a member for approx 7-8 years prior to later becoming chair - person lasting approx another 4 years! after the group moving the base we used for our meetings! 

Sadly, we had to eventually close our group July 2017 owing to losing attendance of members numbers for various reasons, and being unable to attract new members, due to the policies & politics of hospitals, staffing levels and advertising posters / leaflets being refused or withdrawn.  Not ‘all changes are geared towards progress. Unfortunately.

‘However, ‘In between time I had also joined Gaynor’s ‘on line support group L-W-O, ‘which as ‘I’m sure your all aware’ has grown and gone from strength to strength.   We have witnessed Gaynor and her small team working tirelessly to promote the awareness and seek better information both for patients and medical organisations!

We have seen Gaynor develop her group from just a handful of ‘local on-line people’-  to hundreds, of Global members, to initiate her first Annual Awareness Day, and as such a total success, that it went to a new level with her 2nd one!  Now looking forward to her 3rd one on the 16th May 2018! Which I’m sure will bring the quality and professional content yet again!  I have found this group to provide a ‘wealth of information, support, fun, answers as well as a real passion to ‘promote the education of what Lymphoedema is all about.

 ‘Not only to its members’ but also their family and friends who have a genuine interest’ and on a ‘need to know basis’. Ensuring they are equipped to share with all those affected so enabling them to receive an excellent service, as well as to spread the word making sure that the various Medical professions are bought up to date with all facts relevant to that service! 

I wish to say we’ll done Gaynor, and her team, and best wishes to continue to grow in passion and numbers!  ‘Who better to raise awareness than those of us with ‘first-hand experience ‘of the gaps that still sometimes exist today! ‘ ?  Who better to help ‘close those gaps?

We ‘are the real Teachers, and there is a saying that goes! -

‘When the student is ready, the Teacher will appear!!’ 

‘Together we’re Better’ 

And only by ‘raising awareness can we educate the students of today - towards a better and more knowledgeable ‘Tomorrow!

Kind Regards,

‘Love and strength to ‘all’

B xx

L-W-O © 1st May 2018

Unauthorised use and/or duplication of this material without express permission of L-W-O is strictly prohibited.

Excerpts and links may be used provided that clear credit is given to L-W-O with appropriate and specific direction to the original content.

 

 

 

 

Tamsin Sargeant Guest Blog

First published by Huff Post UK 01/03/2018   Reproduced here by permission of L-W-O member Tamsin Sergeant 

THE BLOG

Living With Lymphoedema After Breast Cancer

I don’t want to have to explain a condition that even my GP struggles to understand

“What have you done to your arm?”

My heart sinks. I don’t want to answer this kindly-meant question about my swollen hand and arm. Wearing a compression sleeve (think Spanx for arms) hardly ever goes unnoticed by anyone looking for the chance to strike up a casual conversation. But I don’t want to have to explain a condition that even my GP struggles to understand. I don’t want to have to explain that I’ve had breast cancer.

You see, I have lymphoedema.

Lymphoedema, pronounced lim-fo-dee-ma, is a chronic (long-term) condition that causes limb swelling and leads to pain and loss of mobility. About 1 in 5 people (20%) develop lymphoedema after breast cancer treatment, if it includes surgery to remove the lymph nodes, or radiotherapy. This is because, simply speaking, the lymphatic system drains excess fluid from tissues and damage as a result of surgery and/or radiotherapy causes fluid to build up and tissue to swell.

My lymphoedema began with dry hands. It was 2012 and I’d just finished chemotherapy to treat a recurrence of breast cancer. Still vulnerable to infection, I was scrupulously washing my hands and noticed that my right hand was puffy. By the time my surgeon had referred me to a Lymphoedema Clinic, a few weeks later, my hand was alarmingly swollen. I couldn’t hold a fork, pen or get my arm into the sleeves of my clothes. Then, fluid started leaking out from cracks in the skin on my fingers. It was horrible. And it wasn’t just physically debilitating, I felt ugly and that, once again, my body had failed me.

With a cancer diagnosis, everything happens quickly: scan - results - treatment. Every new symptom is swiftly investigated. With lymphoedema, everything happens slowly - I wait weeks for an appointment where I’m advised to try out a new technique for several months! I now realise that this approach reflects the fact that there is no cure for lymphoedema and standard treatments, such as massage, compression sleeves and Kinesio taping aim to reduce and control swelling.

I was offered intensive multi-layer bandaging because my hand was so swollen. For three weeks, I made a daily trip to the hospital for my arm to be bandaged by a nurse. Progress was slow. Since then, I’ve learned that reducing swelling is a bit like losing weight, it’s gradual and there are, frequent, setbacks.

Over 18 months, I was able to lose nearly a litre of fluid from my arm. I worked really hard to achieve this - by wearing my compression sleeve daily, a glove at night and doing exercises twice a day to improve the flow of my lymph fluid. Although my arm looks ‘normal’, my hand remains troublesome and unless I wear my compression sleeve every day, the swelling returns with a vengeance. I see a nurse every six months who prescribes two made-to-measure compression sleeves. It takes her an hour to take the twenty-seven or so individual measurements of the length and width of each of my fingers, hand and arm. I loathe it. I hate the daily gymnastics involved in getting my sleeve on (imagine pulling on size 6 spandex pants), the painful blisters that develop between my fingers, the loss of sensation, the stiff, uncomfortable fabric and the poor choice of colours.

Infection is an ongoing worry because the lymphatic system plays such an important role in helping the body deal with infection. I’ve had cellulitis - a bacterial infection of the skin and tissue - at least twice a year and it caused me a lot of trouble last year when I was ill for months following a mosquito bite. Because untreated cellulitis can lead to septicaemia, or blood-poisoning, I keep a supply of emergency antibiotics at home.

Imagine carrying a heavy bag full of shopping all day and the resulting ache in your shoulder. That’s how it feels to live with the constant sensation that one arm is heavier than the other. Elevating my arm - on the back of a chair, across the back of a bus seat, or on cushions - offers some relief.

Then, last year I developed lymphoedema in my left arm, four years after breast cancer, a cruel PS.

Shockingly, trainee doctors receive only 15 to 30 minutes of education on the lymphatic system. This means that that they don’t have the knowledge to help us to manage our lymphoedema. Breast Cancer Charities focus their efforts on lymphoedema prevention. What about those of us living with lymphoedema? We are the forgotten ones. Lymphoedema has been described as the Cinderella of medicine and NHS services are notoriously under- resourced. Women’s instinctive response - relief that lymphoedema, unlike cancer, is not life-threatening - also acts as a barrier to change because it prevents us from demanding better treatments. My advice to anyone newly diagnosed with lymphoedema is to be proactive and educate yourself. Organisations like Lymphoedema Support Network and Lymph-What-Oedema Support are invaluable.

Kathy Bates, the Academy Award-winning actress and spokesperson for Lymphatic Education & Research Network (LE&RN) has bravely - especially for a woman living in the public eye - shared her own experience of lymphoedema. On 6th March 2016, LE&RN established the first World Lymphoedema Day, a collective effort to raise awareness of the millions of people living worldwide with primary and secondary lymphoedema and lymphatic diseases. Inspired by her example, I’m sharing my own experience of lymphoedema for World Lymphoedema Day on 6th March 2018. Help us to spread the word.

by Taboola

Guest Blog

I’ll start with a confession.

I am obsessed with gloves. I think about them pretty much every day.  And I spend hours looking at them; in shops, online, on other people …     So when did this begin?

Well, it all began when I had my first Lymphoedema clinic appointment back in 2015.

“Of course, you will have to wear gloves to protect yourself from scratches when you’re gardening,” the Lymphoedema Nurse said kindly, when I had stopped crying after seeing the compression garments I was going to have to wear.

“And you’ll need to be more careful when handling your pets,” she added, looking at my notes about my recent cellulitis resulting from a cat bite.

I remember mumbling something about getting some gardening gloves, and that was it -the start of my ongoing quest … to find the perfect protective gloves for every activity. The problem is not easily solved, it seems.

So, I started with gardening. I’ve spent hours in garden centres, examining and trying on gloves… Are they big enough to get a compression glove inside one and still be able to bend my fingers, without being so big that my other hand is unable to hold anything? Are they robust enough that thorns will not penetrate? Will they keep the dirt out of any unnoticed scratches?

Security cameras will have recorded hours of a strange woman hanging around in the glove section, repeatedly trying on different gloves. When visiting new garden centres, other people may head for the tempting displays of beautiful plants, or the tea room. I scurry to the garden accessories shelves and investigate the gloves. After all, a new, more perfect design may have arrived since my last visit…

I have bought many pairs, but I think it is fair to say that the perfect solution has not been found…yet.

If it was only gardening, perhaps my addiction would be less serious – but I am an outdoorsy sort of person. The things I like to do are inherently messy and, it turns out, are compression glove-incompatible. I need gloves for every activity!  Even my job is problematic. I am a primary school teacher. I’ve lost count of the days I have had to take off my compression glove because it got covered in paint, or water, or worse…

When I was first diagnosed with lymphoedema I was very downhearted.  It seemed to place impossible restrictions on my life and threaten the very things that had kept me positive following the cancer treatment. I tried to carry on ‘as normal’, but dry skin on my hands added to the problem and I have had several bouts of cellulitis probably as a result of infected cracks in my skin.

So perhaps it is not surprising that this obsession with gloves has evolved. If I can find gloves that will enable me to continue to enjoy the activities which contribute so much to my wellbeing - then life can be ‘normal’, or at least a new type of normal.

So… back to the quest!

The perfect glove…

I’m still determined to pursue the fun stuff, but even activities that I don’t particularly enjoy have become important as winter brings even drier skin.

Washing up and cleaning surfaces with cloths need gloves to make them possible.  I have discovered that the only solution is to buy two pairs, so I wear a large size over my compression glove and a medium on my other hand. Pricey maybe, but not as expensive as replacing dropped crockery!

For general cleaning activities I use these ‘gardening’ gloves. They have waterproof finger tips, so are OK for damp cloths but are not fully waterproof, so they don’t get too hot and are flexible. (I find this style of glove very useful but sizing issues mean that compromises have to be made between fit and dexterity … or buy two different sized pairs.)

A really important feature is that they are machine washable, so the inside and outside can be kept hygienic.

 

I keep some of these handy for emergencies. I am not keen on disposable gloves because of environmental issues, but sometimes they are the best thing for the job. I keep some in the car, in my handbag and in my rucksack when I am out walking.

Recently, I was ridiculously excited because I discovered that you can buy gloves specifically for painting! These brilliant gloves saved my compression glove from paint splashes when decorating the bathroom. I had been wearing washing up gloves, which were far from ideal because my hands became very sweaty inside them after a while. I’d tried cotton gloves, but they just got soaked in paint, so these were a fantastic find!

I found these beauties at the garden centre in January and they are almost perfect for my Outdoor Learning sessions at school during cold weather. They are really warm, tough and have waterproof fingers. The downside is that I keep losing them when I take them off because they are black. (Fortunately, the children have been quickly trained to spot them!)  

The other downside is that I can’t fit my compression glove inside these size 8s. They should also be brilliant winter gardening gloves, so I am looking for a second pair for home and allotment use, in a bigger size…but of course I’ll have to try them first!

When birdwatching and on the nature reserve – I’ve been using this rather natty combo. In cold but dry weather, the hand /wrist warmers are sufficient over my compression glove, and allow me to use binoculars easily.  When it is wet or dirty, I wear a pair of the Showa ‘gardening’ gloves underneath, so that my fingers are protected but can still grip. If my fingertips do get cold, I sometimes wear a thin pair of thin fleece gloves under the wrist warmers instead of the gardening gloves.

In the summer I shall go back to carrying the gardening gloves in my rucksack, in case I have to handle anything.

Last autumn, I thought I’d found a winner with these gloves – which covered my compression glove brilliantly and were SO comfortable.  Then I went on a Harvest mouse survey and encountered burdock seed heads…

I think the seeds are dry enough to pick off now. When fresh, the hooks of burdock are stronger than Velcro! I’ve had to wait three months to tackle them!

Burdock and thorns aside, I think gloves like these will be my favourites for general walking/birdwatching adventures when I just need protection from dirt, splinters and minor scratches.  They are just so comfortable over the compression glove. Briars do some they call ‘Profession’elle’, which are more padded than these and seem super comfy. I haven’t bought any yet, but I have tried them on.

Each new activity has to be assessed for its glove requirements and then if gloves are needed a new search begins!

Summer gardening is still problematic with a need for protection, breathability and flexibility – all in a size that will accommodate a compression glove and still enable me to grip small plants… I have not yet found the solution. Have you?

So, the next time you are in the garden centre, or DIY store, or supermarket, or even charity shop and you see a middle-aged woman loitering by the gloves in a suspicious manner; don’t call security, say ‘hello’ -because it is probably me.

Suzanne

 

About Suzanne

I am a 56-year-old primary school teacher, living in Oxfordshire. I was diagnosed with breast cancer in 2010 and had a mastectomy and chemotherapy. I subsequently had a TRAM-DIEP reconstruction in 2013 and some minor adjustment operations followed. I still take Tamoxifen.

I noticed some swelling of my right hand in 2013, but was only diagnosed with Lymphoedema after a bout of Cellulitis following a cat bite in 2015.  I wear a compression glove every day and should also wear a sleeve. However, I find the sleeve really uncomfortable so I tend to only wear it when I am doing exercise such as gardening or on longer walks.

I am passionate about nature, and spend a lot of time birdwatching. I am an RSPB volunteer warden.

I also enjoy singing and acting, and perform in shows with a local theatre group. 

I have two cats, three chickens and a very untidy house!

Suzanne has been a member of  L-W-O since January 2016

 

L-W-O © 14th February 2018

Unauthorised use and/or duplication of this material without express permission of L-W-O is strictly prohibited.

Excerpts and links may be used provided that clear credit is given to L-W-O with appropriate and specific direction to the original content.

Please donate

The generosity of our members allowed L-W-O to operate through 2017 without us having to organize fundraising events. We don't charge for membership.

None of our volunteers including myself get paid for our time. My hours are incalculable and for four years I have kept the costs to £750.00 p.a.
This year it will cost £1500.00 to run this group, there are no costs for premises and all the utility costs are absorbed by me as part of my household expenses because L-W-O operates from my home.

However, broadband, mobile phone, stationery, marketing tools, petrol etc., do cost.

This year our flyers/posters need to be updated, my laptop is slowly coming to the end of its life. Instead of borrowing from other organisations we need a three fold display board.
To move forward we need to be looking at how we develop and there are organisations who are willing to work with us with exciting opportunities. As founder of L-W-O I rely heavily on goodwill and so far I have been extremely lucky.

This doesn't come easy for me but I am asking members and the public for donations to help us operate this year and move forward.
You can donate through our support group page on the website. Thank you for taking the time to read this, Gaynor

 

End of Year Newsletter 2017

2017 Newsletter

 

 

Starting 1st of December I will start our Christmas Postcard campaign similar to last years.  Apart from the Support Group in Coventry in December I will start to wind down until mid-January.  

This has been an extremely busy but very successful year for L-W-O our achievements have exceeded expectations.

We have:

Forged new partnerships with the Carers Trust, working on a relationship with Myton, strengthened our working relationships with Macmillan, The Hummingbird Centre, LSN, involved with helping to set up the Asian Women's Breast Cancer Group in Coventry which launches on the 1st of February 2018.  Our Community Support Group in Coventry will continue from February - December 2018.

We will be joining LSN's odd sock campaign for March 6th to present a united front in raising awareness.  For next year’s campaign the following lymphoedema FB groups are on board;

Ladies Living with Lymphoedema

Men with Lymphoedema

Lymphoedema Fashion

It has been suggested by members of FB lymphoedema groups in the UK that we form an alliance for campaigning and raising awareness while still maintaining our own independence.  I have been invited to LSN's head office in January to talk to their chair and trustees who have far more experience than I have.

I have become a graduate of the Innovation Factory & have a working relationship with the Ideas Factory which has led to us being asked to meetings for International Women's day for Nuneaton & Bedworth area and the Celebration of Leaders event. 

L-W-O is a member of:

Voluntary Action for Coventry

WCAVA

NCVO

I am and individual member of BLS, LSN and an affiliate of ILF.  

Our first sponsorship of the Medical Alert Cards was great news and I have distributed approximately 150 by post and given others out at the events we have attended this year.  A big thank you to Darren Meilak from LymphAssist/Huntleigh for working with us. Due to members, donations, a 70th birthday party donation, Marie's fundraising, Easy-fundraising, WLSG donation and donation in memory of our member Gaynor Lanyon, we haven't had to fund-raise this year which has allowed L-W-O to cover the various costs associated with running this group.  Our accounts were audited at the end of our financial year by Mr. Peter Oakley.

Next year L-W-O will be working on our 3rd lymphoedema Awareness day on 16th May 2018.  This will be a ticket event through Eventbrite and will save me a considerable amount of work. Promoting, raising awareness and campaigning of lymphoedema with other groups will be high on our agenda next year. 

It is essential that L-W-O recruit’s new volunteers who have a vision and passion to help us grow and develop these may need to come from outside the group as getting members to volunteer has not been easy.  Without volunteers we cannot grow or develop.

Support group now has 978 members across the UK and beyond and our website is maintaining an average 1000-1200 viewings per week and has reached 229,118 viewings.  Our high social media presence on Facebook, Pinterest, Twitter, Instagram and LinkedIn has grown steadily this year.  Our children’s group has 42 families on board.

Some of our members became very upset at the use of the word ‘diet’ and ‘exercise’ especially those living with lipo-lymphoedema.  Therefore, we changed the language to ‘lifestyle changes’ and ‘movement’.  The website was completely re-written in 2017 adding more visual features, videos and members photographs and stories.  I am extremely proud of members for allowing us to publish their stories and photographs.

Next year will see more and more of us referred to our GP’s from our Lymphoedema Clinics which many of our members are finding scary.  The need to raise awareness amongst health-care professionals is now a priority.  Within surgeries we now need a nurse who can measure for compression, advise on living with lymphoedema and if necessary give MLD and teach patients to do SLD so that they can self-manage.  Those diagnosed with secondary lymphoedema are usually picked up quite quickly because they are in the system due to their cancer treatment.  However, primary lymphoedema patients and those with secondary lymphoedema not caused by cancer treatment are often left to struggle on their own without support or treatment.  In an ideal world every surgery will have a GP who has undertaken LSN’s RCGP module http://elearning.rcgp.org.uk/lymphoedema

On behalf of the L-W-O team I would like to thank all our members and supporters who have helped us achieve a very successful year:

 

A Happy Christmas

and a

Healthy, Peaceful 2018

Guest Blog

My Silver Anniversary – and just found out I am a ‘Lymphie' by Ann Marie

Yes, that’s  Yes, that's right. I’ve had primary lymphoedema for 25 years and you have no idea how much better I feel knowing I can call myself a ‘lymphie’…Why?  Because for 25 years I thought I tt thought I was  alone. I mean, I had heard that other people had lymphoedema but they were unseen figures who lived in unknown places.

My story started when I was in my late 30’s. I was 9 1/2 stone and a size 12 and no health problems.  My first sign was a small swelling just behind my left ankle bone.  It wasn’t painful and I didn’t give it much thought.  Over the next year or so, I would mention it to various practice GP’s or nurses when I took any of the children. The response was always the same, “ just keep your feet up”, “wear support tights”. It was when only other people started to pass comment on my ‘swollen ankle’ that I decide to make an appointment with my GP specifically to discuss my concerns.  Well...I was met with a barrage of questions e.g.  “Why haven’t you been to see me before? You are my patient and I’ve never seen you’’.  He was absolutely furious when I re-iterated the advice his colleagues had given me.

 So there my journey started …

I was up on the examination table within 5 minutes, being very intimately examined much to my shock ! Then every week for 6 weeks I was at just about every department in the hospital for investigation. I had blood tests for goodness knows what and was seen by cardiac, vascular and gynaecology specialists. I was even strapped to a table with an additional item in a very private place whilst I was x-rayed from every angle…the outcome was that my bowels  “are very photogenic”!  But nothing compares to my experience with the endocrinologist! This was to be my last test and one which I will never forget. 

Now you n Now, you need to use your imagination here...Remember, I was going with a swollen left foot. ‘’Jump on the bed”, he said. So I popped behind the screen, took the knee highs off and sat off and sat patiently.  In he comes and I was met with a very puzzled look… “You need to take your trousers off’’.  “Really?”  Oh well, I pondered,  he must want to see my full leg. So, do  leg.  So, down came the trousers.  He had a quick look at my foot, didn’t bother with my legs and told me to turn round, face the wall and lower my pants!. “But…it’s my foot!” I squeaked “Yes, but I need to examine you”   I did as asked (although at the same time wondering if this was a ‘set up’ and Jeremy Beadle was nearby!).  So, after having dutifully obeyed and lowere I lowered my knickers, he had a wee look and at my  ‘posterior’ and said he’d be back in a minute.

Now…. I kn Then, I saw two feet leaving the room but a couple of moments later, four feet returned.  As I lay there in trepidation as to what was going to happen next, the curtain opened an opened two doctors were staring at me. ‘’I just had to go and get a camera” says he!  Eh!!  "A camera?"  What for?  Is this real?  Why is there another doctor here?  A hundred thoughts r  thoughts raced through my mind, including grabbing my drawers and doing a run for it!  But all I could do was lie there as I was photographed from the inside out !! I returned  I returned to work absolutely traumatized, whilst my colleagues fell about in hysterical laughter ….I too can now see the funny side but really? 

So, after all After all my investigations which thankfully proved negative to any adverse medical conditions, Primary lymphoedema was diagnosed.

 Then virtu Then, virtually nothing… yes….nothing for another 10 years!  GP said there was nothing that can be done so I started researching  the condition independently. I read about compressi  compression stockings and bought them online even though I didn’t know what size or compression I should use (and probably made my condition worse).  Eventually, I found a Mf found a MLD therapist who actually had travelled to Belgium for training and was disgusted at how lymphoedema was dismissed in the UK.  She wrote to my GP and told me to insist th me to insist he referred me to someone trained in the condition. I was referred to a vascular consultant  and 2 years of nothing more than a  “how are you?’’ told me  “ yes it is ugly and g  getting worse but there is nothing I can do’’ but thankfully he did refer me to Strathcarron Hospice where the Lymphoedema nurses were based.  Yolande, was my lympho specialist a specialist and she was so supportive and fantastic. By this time, over 10 years had passed. My left foot had deteriorated and fibrosis had set in.  I was injected with radioactive radioactive dye and it was confirmed that most of the lymph nodes in my foot do not work, I’m not suitable for surgery and there is nothing that can be done to improve it, only outwi  I have to self-manage my  lymphoedema treatments.  Approximately five years ago, my right foot started in the same way, a small swelling behind the ankle and it has deteriorat  deterioated, quickly.

Having bot Having both feet affected, has at times been soul destroying and depressing.  I have had to completely change my life as I have also developed peripheral neuropathy, affects boI I was always an outdoors person who thought nothing of walking for miles and driving for hours to take photographs or go to belly dancing and Zumba classes. I can’t do that now, but I  now, but I can do other things.  I can still enjoy my art/craft work and attend Tripudio and yoga classes (even if I have to do most of the exercises sitting down), I can go to the swimming  swimming pool and meet friends.  I am in the process of  being medically retired and my career is ending.  Having worked since I was 16 years of age, I am now a 61.  I can’t say I will m say I will miss getting up at 5.30 a.m., every morning to do an hour of self-management before I drive the 45 minutes to work through nightmare traffic. Nor will I miss spending    spending my evenings and weekends trying to get the swelling down enough to start work the next day or the ready for Monday mornings.

But best of Best of all,  whilst I had to relocate to be nearer family so they can help on the bad days.  I get to spend more time with my three grandchildren.  Children are always sure to bring youb bring you back down to earth with a bang.  Recently, I was sitting on the edge of the bath whilst my 3 year old grandson, was demonstrating his recently found independence by sittingb  sitting on the toilet seat unaided.  Deep in thought and cursing the pain in my feet, a wee voice piped up. I left my void of self pity to acknowledge him. There he was, eyes wide open  wide open and looking aghast, “Gran Annmarie…you have a really fat belly’’… Trying not to display my total shock and breathing in to the extent that I almost toppled backwards into the bath…he then goes on to say “you have a very fat foot too but your other foot isn’t as fat.  Do you not want them all to be fat?”.  There is nothing like a child to bring you back t  you back to reality and make you giggle.

Yes, there  Yes, there are days when I am sad, frustrated, exhausted, sick of being in pain and Yes…angry.  However, everyday, no matter how awful I feel, I give thanks for what I have and try to rto remind myself that I still have lots in life to enjoy.  What is also wonderful is that there is so much more research being undertaken, awareness of lymphoedema is improving  improving and one day there will be a cure.  In the meantime I take comfort in knowing that  like you…I AM A LYMPHIE..

Photographs of Ann Marie, her feet and legs and a family day out at the beach

 

                                              

 

 

L-W-O © 3rd November 2017

Unauthorised use and/or duplication of this material without express permission of L-W-O is strictly prohibited.

Excerpts and links may be used provided that clear credit is given to L-W-O with appropriate and specific direction to the original content.

October 2017

L-W-O was invited to a Pharmacists seminar on the 4th October, at The Novotel, Coventry, myself and Gloria, L-W-O trustee attended.  The event was organised by Macmillan with about 20 Pharmacists and two GP's invited.  They talked on how they can help cancer patients with their medication.  It was an informative evening and a good evening for networking with other invited groups.  We were treated to a buffet supper.  For me personally I would like to see more information on the side-effects of medication both during treatment and beyond.  Many organisations are looking at cancer and beyond putting the positive spin on the fact there is life after cancer.  This is wonderful. However, I am frustrated by the fact that living with lymphoedema caused by the cancer treatment is not being tackled.   As a group we must keep pushing forward to raise awareness of lymphoedema.

On 12th September we had a good, support group at The Hummingbird Centre in Coventry.  We were joined by Karen Hunt, Lymphoedema Specialist Practitioner and Olivia Bowskill Community Engagement Officer from Myton Hospice.  The feedback from those that attended was good.  One of our group was struggling with her legs and Karen agreed to see if she could get our member referred to the clinic at UHCW.  We will be talking with Karen and Olivia to see if a working partnership is possible.  The challenge for us with the Coventry support group is reaching the people in the community who do not have access to the internet.

The 17th October, I attended a meeting with the newly formed Asian Women's Breast Cancer support group. The group will officially launch on the 1st February 2018 and meet on the first Thursday of each month thereafter at the Foleshill Women's Training Centre.  This new group is at the request of those living with breast cancer in the Asian community.

Monday 30th of October I was invited to a 'Movers and Shaker's event, a celebration of Leaders in the Coventry area.  This was for those of us that have graduated from the Innovation Factory courses and how we have moved forward after our training.

October was a quieter month, and this has given me more time to work on this website.  The new Out and About page is almost ready to be promoted.

 

From left to right, our support group table, Celebration of Leaders and the Pharmacists seminar.

Sept 2017

September was a busy month.  I have been a member of LSN for approximately 4 years but have never attended one of their conferences, this year, Tuesday 5th September, I was able to go.  The trains past Euston were still not operating properly so thanks to my ever-patient husband he decided he would drive me.  The weather was horrendous with heavy rain.  On the out skirts of London, we should have been 10 minutes from our journey's end.  However, we somehow missed the turning and instead of being in SW3 we ended up in Hammersmith.  Joy of joys.  It was a good job we were early and after seeing quite a lot of Hammersmith from the car we finally arrived at our destination about five minutes late.

The conference was interesting and it was lovely to catch up briefly with Karen Friett and meet Anita Wallace LSN's Chair, Philippa Laughton, LSN trustee and a member of    L-W-O.  I also met up with L-W-O member Catherine.  I had some lovely conversations prior to the AGM and one of the most interesting was with Jed Bailey, LSN Trustee and we talked about the essential benefits of social media for organisations like LSN and L-W-O.  Unfortunately there is never the time to really share ideas and experiences but it was interesting.

There was a great lunch and a few exhibitors.  The best part for me was an Audience with Dr Kristiana Gordon and I could have listened to her all afternoon.  Dr. Kristiana, talked about the latest research surrounding Ubenimex medication and various other lymphatic malformations including the gene studies with children.  She also reiterated that Ibuprofen and Voltoral were an absolute "no, no, no" for those living with lymphoedema.  I enjoyed my day and I am glad that this year I could attend.

Thursday 14th September, was our support group in Coventry and sadly the speaker, was unable to attend.  I had been doing lots of research on Foot-care, so I put together a brief talk and then generally we had a chat over a cup of tea.  In the evening I attended a WCC Councillors Grant Fund seminar, this was interesting an I was able to catch up briefly, with Scott Harrison who had guided us through our Constitution and non-profit set up.  Plenty of ideas on fund-raising for the future, if only I have the time.

The 18th September, Jayne one of our trustees and I met to discuss the best way to set up a database with a view to put those members of L-W-O in touch if they wish.          L-W-O was invited to attend the Cancer Awareness event at The Hummingbird Centre, Coventry, on the 28th September.  Martine and I set up our information stand.  The event was great for networking, sadly, it was not something that inspired the public.  Macmillan, dietitians gave an interesting talk on eating healthily through cancer treatment and beyond.

Finally, L-W-O were invited to The John Lewis Community Hub on the 30th September, by our friends from MC4BC this was a fabulous day for networking although rather light on public footfall.  It was great to meet Michelle, who is now part of the L-W-O team and has set up and runs our Twitter account.  Martine came along and it was lovely to spend time with her and Michelle.  I like to think we have made some new friends for the future in the following as we chatted to the other exhibitors.

As you can see September was a busy month.

The L-W-O Support Group is growing steadily our Community Page is now averaging a reach of 1200 per week and our Children's Support Group has 41 members, our website is also averaging 1200 viewings per week.

 

Michelle, Martine and Gaynor at The John Lewis Community Hub, Birmingham

Guest Blog

 

This is the first time I have ever fully told my Lymphie journey, and what a journey it's been.  My name is Lisa I am 36 years old and live in the beautiful city of Exeter in Devon. 

Up until I was 7 years old I was fit and healthy apart from a couple of broken bones, and normal childhood injuries. In 1988, I remember feeling extremely unwell with a pain in the left knee, this went on for days until my Mum took me to our local hospital. The next part becomes slightly blurry but spent 3 weeks in hospital as I had osteomyelitis in my knee. This was explained that it was septic arthritis, poison on the bone.

A few years passed & I seemed to pick up every infection going, I remember the sadness in my Mum's face each time I was admitted to hospital, I remember my older sister begging the doctors to stop me hurting.
I turned 14, I had a red swollen hand again admitted to hospital and was told it was tendonitis but unknown to me until years later it was recorded in my notes as cellulitis.

I turned 21, and on this day, I felt like I was coming down with the flu, then a rash appeared above my knee. Can you see a pattern?  It becomes a serious issue, every 7 years.  This turned out to be my first serious case of cellulitis. Again, I was treated by IV antibiotics. I still seemed to pick up every infection going from ear, throat and skin infections and nobody could tell me why?

In 2007 again I felt those flu like symptoms again, the shivering that immense headache, my body in pain and then hours later the rash had pickled the whole of my right food 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.

Now this is where I say my journey really began. I will take you back to August 17th, 2011, I'd only been married just over 3 months and should have been enjoying being a newlywed.  On this day, I woke my husband in the early hours telling him I was freezing, he looked at me with what I now call the look. He knew straight away it was cellulitis. I left it all day (foolishly) and now know better. Until I 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 I remember the swelling and saying it will go down, won't it? The doctor replying yes of course. You guessed I had septicaemia again and was moved to high dependency ward, talk of surgery and skin grafts. 

This was the worst time of my life. I was fighting to stay alive my organs were failing.  Again, the medical team were amazing. 4 months later and still off work, the swelling was still there, each day was a struggle without feeling so tired, no energy.  I had regular GP appointments and I remember saying when will my leg return to normal? And in a soft voice and sadness in his eyes he said it won't you have lymphoedema in both legs. I remember saying ok what's that? I don't really remember his full reply, apart from saying we will get you 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?  I was measured and fitted with those brown stockings my granny stockings as I called them.  I took it all in my stride, but some days I felt confusion as I really didn't know what this diagnosis meant or what happened next and I still thought my leg would return to normal.  Today I wear compression wraps and I cannot go without or I swell beyond belief the limbs become heavy and hard. 

So, six years on I really didn't know the battle I was going to have. I developed severe eczema on both legs which leaves me prone to infections. Daily routines include running topical creams and moisturizers into my legs four times a day. Hospital appointments and GP appointments are constant. I'm now on a medication called methotrexate for my eczema which suppresses my already low immune system and have monthly blood tests. I have had over 20 different strains of cellulitis since I was 14 and because of getting septicaemia so many times it has damaged my lymph nodes in my groin which led to me being a two-legged Lymphie. 

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.

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. I hope to anyone going through this realize you are not alone, we are a family.

 

 

 

 

 

Photographs are published with the permission of L-W-O member Lisa the first photograph with her Mum, the 2nd photograph of her legs and feet so that you can see the daily challenges that Lisa lives with and the third photograph of Lisa with her Husband. 

 

L-W-O © 2nd October 2017

Unauthorised use and/or duplication of this material without express permission of L-W-O is strictly prohibited.

Excerpts and links may be used provided that clear credit is given to L-W-O with appropriate and specific direction to the original content.

 

 

 

 

 

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