Menu
header photo

Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Blog

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.

 

Conversation with Helen Hunter

Author: Gaynor Leech Founder of L-W-O

 

Helen wishes for a holistic approach to treating those living with lymphoedema?

 

Retired from The Queen Alexandra Hospital Helen Hunter was officially diagnosed with lymphoedema in 2017 although she had an inkling before this and her personal feeling was that she had lymphoedema from about the age of 11, if not from birth.

 

A Holistic Approach

 

The most difficult part about living with lymphoedema is the lack of understanding, even by the specialists. Helen has been given differing advice about massage and compression. She like many of us living with lymphoedema had been told that lymphoedema is not painful, which she now knows is not the case.

 

“I find that many specialists fail to look at the patient in a holistic manner. It was very easy to look at my endometrial cancer in 2017 and attribute my lymphoedema to that. However, I had a perforated appendix and peritonitis age 11 and various other abdominal surgeries plus a car accident affecting my leg. I can remember having a swollen left leg from a very early age.”

 

According to Cancer Research UK one in two of us are estimated to have cancer within our lifetime, and one in every five breast cancer patients are likely to be diagnosed with  lymphoedema, this is higher in some other cancers.  “I would like there to be much better provision of care. I would like to see care standardised throughout the country. I would like medical practitioners and surgeons to have a better understanding of the condition. I would like for specialists to look at patients in a holistic manner and understand that Lymphoedema is not just swelling.”

 

The relief Helen felt to finally get a diagnosis was immense because she had been told that she was being over anxious having had cancer.  The Lymphoedema Support Network (LSN) have produced a useful guide that will help those of us living with lymphoedema. as our members on L-W-O tell us getting a practical assessment of lymphoedema is a real struggle.

 

Talking about feelings

 

Her Husband understands how her lymphoedema makes her feel, but she does feel that other family and friends don’t. “I find it difficult to tell people how I am really feeling and try to keep cheerful, even when I am in pain. I do sometimes feel I am my own worst enemy because I find it difficult to be honest about how I am feeling.”

 

The Financial Cost

 

Helen gets on very well with her GP but was told two weeks after a radical hysterectomy that it was too soon to diagnose lymphoedema, even though her leg was swollen and looked strange. “I have had to trawl the internet and go privately to get a definitive diagnosis as there is no provision for lymphoedema care anywhere near where I live”.  She does get two pairs of compression tights every six months on the NHS but apart from that, must pay privately for everything else.

 

Online Support Groups

 

Helen joined our L-W-O support group in October 2018.  “When I joined my first online support group, I became quite emotional when I was welcomed by people from all around the world. I love the fact that someone can post a question and for it to be answered by other people who may be able to help. The support groups make me feel that I have a voice and that it is heard by people who truly understand. I no longer feel alone.”

 

Lymphoedema does not define me 

 

“I have learned along the way that, if we do not do all that we can to help ourselves, then we are the only ones who suffer. I am determined that lymphoedema should not stop me from living life to the full. I have learned that I am not lymphoedema patient but rather a patient with lymphoedema. My condition does not and should not define me. I have learned to listen to my body and trust in my instincts as I am the one who knows my body best. I have learned that it is okay to feel down at times and I have learned to be kind to myself and take time for what I need.”

 

Conversation with Rhian James

Author: Gaynor Leech Founder of L-W-O

 

Rhian loves to travel and while her lymphoedema doesn’t stop her travelling, planning is very much a part of her trips.

 

Rhian James was first diagnosed with Lymphoedema in 2011, five months after a mastectomy (having had a lumpectomy in 1995) she and her husband had come back from a cruise and had a quick turn round to go and visit their son who lives in Berlin.  Before travelling to Berlin, they decided to take down the runner bean sticks in their garden.  Her hand started aching, but she wanted to help finish the job before they travelled again. In her own words Rhian said, “this was a big mistake”.  

 

Rhian - river cruise on the Danube 2019


When they got to Berlin her son commentated on her ‘fat’ hand and she realised quickly that this was lymphoedema.  Rhian was angry with herself and rang her Breast Care nurse as soon as she returned home to the UK only to realise that she needed her GP to refer her to the Lymphoedema clinic.  This was when Rhian realised that her lymphoedema future was ‘ALL ABOUT FUNDING’ she was already a patient but to get into the Lymphoedema clinic she needed a referral.

 
It took over 3 months for the appointment to come through.  Well, “that’s not true”, the fact is that Rhian rang/asked questions/ and made a nuisance of herself for several weeks until they squeezed her in at the end of a clinic. By now her arm was 30% larger than the other one. 

 

Treatment with Lymphatic Drainage


The clinic taught her simple lymphatic drainage (SLD) and gave her two compression sleeves and told her they’d see her in 3 months.  Rhian then searched for and paid for her own manual lymphatic drainage (MLD) and wore her sleeve every day. She couldn’t get a referral to her local hospice where they offer MLD because “I was doing so well managing my own treatment”. 


On their next visit to Berlin her son had booked her four appointments with his local physio as they are all trained to do MLD. They were great but this is expensive. It became her Birthday/Christmas presents.  Her arm reduced over time and is now down to 4% larger than the left arm.   You can find a list of trained therapists in the UK at: MLD UK.

 

Cellulitis

 

She has been discharged from the clinic and the only support Rhian receives is two compression sleeves every 3 months and emergency antibiotics in case she gets cellulitis, which she has been diagnosed with three times.  It’s a continuous struggle and Rhian has recently had another bout of cellulitis. She has seen a new GP at her surgery who assured her that she only needed a week of antibiotics yet the joint British Lymphology Society (BLS) and Lymphoedema Support Network (LSN)  Consensus Document on the Management of Cellulitis in Lymphoedema clearly states ‘no less than 14 days’ of antibiotics.  As this was Rhian’s third bout of cellulitis, she knew that she needed a fortnights course. The GP gave her a prescription eventually on condition she wouldn’t use them unless it was necessary.  Sadly, this is very much the experience of members from our L-W-O support group who not only have had to become ‘expert patients’ but constantly have to battle HCP’s who think they no better.  At the recent MLDUK19 Conference Paul Thiruchelvam Consultant Breast Care Surgeon at Imperial College Healthcare NHS Trust stated that doctors receive one hours training over 4 years in the Lymphatic System.


Rhian wishes that GP’s knew more about Lymphoedema and Cellulitis. She knows exactly what to do when cellulitis is about to strike, and this always impresses HCP’s but this is of little help when you are feeling poorly and you are having to explain about lymphoedema and cellulitis. 


Family & Friends

 

Family and friends are very supportive and sympathetic, when the weather is hot/cold and wearing her sleeve is difficult. “I wear it every day as if I don’t my arm aches.” Her husband is also supportive as living with lymphoedema has changed their lives in many ways. Rhian can no longer help in the garden she loves, and she does wear gloves to protect her hands, but her hand soon aches after a very short time.  She needs help with housework.

 

Choosing a holiday destination and the time of year is so important as “I can’t tolerate the heat and must be so careful about bites stings etc therefore planning is necessary”. 

 

Rhian - Torquay 2018


Support Group

 

Rhian, who is a retired teacher, joined L-W-O in July 2014 and I am grateful to her for her continued support over the last five years and the support she gives other members.  In her own words: “ I’ve had great support from the L-W-O support group, I feel a valued member of the group, both giving advice and receiving it when needed. We’re all learning from each other’s experience”.


 

 

Nutrition & Hydration Week

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

I was thrilled to welcome Pernille Henriksen as our guest writer this week between us we tackled Nutrition and Hydration working within the concept of living with lymphoedema.  What really surprised me was how much we were in sync as I was writing this blog Pernille was writing along the same lines. Pernille has primary lymphoedema in her left leg and has lived with this for 25 plus years, she is a passionate advocate for lymphoedema and believes in empowering patients to take better care of their lymphoedema by sharing information, news and research.  As an advocate Pernille supports those of us living with lymphoedema  globally. 

My input was to put the information in to posters for an easy transfer on social media which can also be shared. The research I used for writing this blog and the posters was taken from the NHS website, British Heart Foundation and British Nutrition Foundation, I have provided the links. Thoughts reminisces and interpretations are mine.

How food has changed

I was born a few years after World War 2 ended and I had my own ration card.  Sugar and sweets were rationed until 1953 and I remember my Granddad shouting at my Mum that if I wanted sweets or sugar, I was to have them because they had to do without them for so long.  On a Sunday for tea we had cucumber butties and I was allowed to eat sugar cubes.  Probably the reason now why I never buy the stuff.  A friend of our family was an industrial chemist, five minutes with him talking about sugar you would never touch it either, only when it comes from the fruit we eat.

I often smile to myself when I hear about how we should all eat organic food, my generation was brought up organically all our food was grown, vegetables, fruit for pies, fruit for jam making, fruit to nibble at.  No pesticides. You washed away any dirt or slugs from the cabbages and it all tasted delicious.  None of the polished, evenly sized fruit and vegetables that are in the shops covered in plastic.  Blackberries you went foraging for in hedgerows and would come home with tiny scratches and thorns in your arms and hands, no good for your lymphie limbs. Now my arms, hands and legs must be covered with gloves and sleeves.  You went fishing for your own trout and salmon came out of tin.  If you had a glut of apples or tomatoes, you made chutneys and who remembers growing shallots and tuning them into pickled onions for Christmas.  Left over bread went in a bread and butter pudding, or out for the birds.  Nothing was wasted.  You never ate pork when there was an 'R' in the month because there was no refrigeration so only to be eaten in the summer months.  Your iron levels were boosted by eating red meat or mid-week eating liver and onions with mashed potato. Friday you always had fish.

As a child if I was sick with a poorly tummy, I was given glasses of water, and fed arrowroot biscuits, the theory being it would help with diarrhoea and if I was very lucky, I might get a ginger biscuit all to help calm and soothe my tummy and stop any vomiting.   Also ginger biscuits later proved crucial for morning sickness.  Now I would drink a ginger tea.   As a child we would collect fresh dandelions or nettles all believed to have their own healthy properties collected from the bottom of our garden or the countryside to make tea.  If you were stung by a nettle you rubbed a dock leaf on your wound.  

 

Food was our medicine

 

Food was our medicine we were brought up to believe that if you ate a healthy balanced diet, that you wouldn't get sick.  Naive or not you decide? In the winter cod-liver oil, rose-hip syrup where given to me daily by Mum because she believed it was good for my health. Orange juice, baby formula and rose-hip syrup came from the baby clinic.  Olive Oil was for medicinal purposes, it was put in your ears to keep the wax soft, while a tablespoon of brandy was added in baby’s bottle to help with colic and teething. Yes, you are reading this properly.  I am sure wherever you live in the world you will have stories to tell.  As a child you played out in the sun and had lots of vitamin D.  In those days we didn’t understand skin cancer, families like mine wouldn't have heard of lymphoedema, even though with hindsight I often wonder whether my Grandma had it as she had huge legs and they were both heavily bandaged.

My first part time job was in a cake shop at the age of 12, I started with two hours and eventually built up to be allowed to work a full week in the school holidays.  You will find it hard to believe when I tell you cakes and biscuits smell, it’s a horrendous smell, even 50 plus years on I still try and steer clear of the cake aisle in supermarkets.  I read somewhere that when shopping in the supermarket you should only shop in the outer aisles because that's where all the fresh food is, luckily when growing up if our family and extended family didn't grow our own food then we had plenty of greengrocers.

When I married, we grew our own food, if we hadn’t, we wouldn’t have been able to eat.  Simple.  Food was seasonal, none of the luxuries we take for granted now where we can buy fruit and vegetables all year round. I learnt to bake, cook and preserve food. I was fortunate that I only had to work part time for those little extras like a holiday.  We certainly didn’t have the pressures that young families are under now, although we did have our own worries, as all generations do.

Then there was four years living in Cape Town in the 1980’s, all that lovely fresh fruit and vegetables. You think? All the best stuff was exported to places like the UK.  However, it did introduce me to butternut squash and sweet potatoes and on a cold winters evening there is nothing nicer than homemade soup with these two vegetables, spiced up with whatever herbs or spices I have at hand.  Other foods such as Biltong, Bobotie, Boerewors, Yellow Rice, lots of spices which today I take for granted.  Melon especially watermelons you would buy off the side of the road, take them home and keep them in the fridge for 24 hours before using them.  Cape Town was also the place where I learnt about lots of other cultures, homeopathy and vegetarianism, sweetcorn fritters, green bean salad, yummy and garlic was added to cooking to ward off infections.

Looking back, coffee was for elevenses, and served with hot milk, not every day more of a treat, the kettle was always on for a cup of tea and drinking water came from the tap. We had three meals a day, breakfast, dinner and tea, supper was a luxury that didn't happen very often.  Now that we are retired, I can eat the same way with dinner being in the middle of the day, whether it was because I was brought up this way, or not, it does suit my overall health, it does keep my sugar levels stable and helps me to maintain my weight. The big difference is that being retired is that we eat when we need to, no longer do we have fixed meal times.

Take a look at the Eatwell Guide on the NHS website

 

 

 

There is no specific diet for Lymphoedema

 

Portion Control

It is so important to control what I eat, not only for my lymphoedema but for all the other niggles I have.  In the past I must have tried virtually every fad diet going. Portion control works for me and it is my personal choice. I lost four and half stone over four and half years, not only has this method helped me maintain my weight it has stopped the cycle of fluctuations in my weight. You only have to look at the poster below to see how plate sizes have changed between the 1950’s and now.  If I am on the go, I know that a portion fits into the palm of my hand.  In my younger days it was very difficult not to eat all that was on my plate as I had been brought up in a generation that food wasn't to be wasted at any cost.  At home it is never a problem because I am guided by the plate size I use, finding smaller dinner plates was difficult but I did finally find some.  Eating out can be a nightmare and we do this probably about twice a week.  Everything seems to come with chips, and this is where I will probably order a vegetarian meal because they tend to be smaller. My worst nightmare is being invited out for a meal where there is a set three course menu, which is way beyond my tummy's capabilities. Secondly when eating out meals that are booked for after 7 o'clock not only upset my tummy they send my sugar levels into the next stratosphere.  There is never a quick fix, there is no specific diet for lymphoedema, and it has taken a lifetime of learning, to find something that works for me.   I am lucky that I was taught the value of food and how it can have medicinal purposes, even if there is no scientific proof, people are entitled to their own beliefs and to make personal choices.  Like everything in life, you take the knowledge handed down, look to improve on it, be open to new ideas and discard what isn't good for you.  The human body is a marvellous creation, in my case it will tell me when something is wrong, it has taught me to trust my instincts which helps me make personal choices.

Portion Control British Heart Foundation

 

 

 

Hydration 

We know that if you are feeling thirsty you are already on your way to being dehydrated.  Our L-W-O members often tell me they do not like drinking water often admitting they don't drink enough.  So Pernille and I looked at the alternatives, we know caffeinated drinks are not good for lymphoedema and cause swelling to get worse.  Drinking water is essential for lymphoedema as the poster demonstrates.  I like my water ice cold, a throw back from the days of living in Cape Town. Friends of mine like to drink their water hot without anything being added like a tea bag or coffee. I can tell our members that coffee, carbonated drinks anything high in caffeine or alcohol is not good for the lymphatic system and increases swelling. The reply that often comes back is that they have drunk coffee all their lives and they are not stopping now.  My point is that as much as we try to inform our members, old habits take a lot of breaking especially for those newly diagnosed who can't always take in the lifestyle changes they may need to

 

British Nutrition Foundation

 

No Vitamins, Herbs or Food Supplements have been proven to work for reducing swelling for lymphoedema

 

Personal Choice

Our members over the last five years have just about discussed every diet, there is like 5.2 diet, Low Carb, Atkins, Paleo, Slimming World, Weight Watchers, Rosemary Conley, Sugar Free, The Rad diet and now the Keto diet is the one everyone is talking about.  The search to control and maintain their weight and heavy limbs goes beyond anything we can provide.  If you are a member of any of the other lymphoedema support groups either in the UK or globally you will see the same questions from group members.  We are not medical, we are not scientific, but members will always search for an answer that is right for them, we listen, and we can tell them why it is necessary for a healthy balanced diet and maintaining their weight, but they will make their own personal choices.

I get very frustrated when we get told this isn’t good for you and that doesn’t work.  In whose opinion?  Information coming from government is often confusing, one-week one food is good for you the next week it isn’t.  Even I can make a comprehensive argument why we should drink gin because it is high in juniper berries and all the beneficial health properties the berries have. Please remember alcohol is not good for lymphoedema.

We must not take away personal choice from our members, and what works for one does not necessarily work for someone else.  I personally would rather have a cup of peppermint tea for tummy problems than a handful of antacids and certainly wouldn’t be eating arrowroot and ginger biscuits.  If my kidneys feel off, I would rather drink Cranberry juice for a week that take tablets, unless I am deemed to have an infection.  For me a banana a day keeps my leg cramps away, if I stop eating a banana for a week then the leg cramps return.  Beetroot is high in fibre and half soluble and half insoluble.  Do I eat beetroot for those reasons?  No. I eat beetroot because I like it, sometimes putting it through the juicer and having a drink. For me crunchy vegetables are preferable to a bag of crisps. Chamomile tea going to bed is by far more relaxing for me than a glass of alcohol and I don’t wake with a muzzy head. These are my personal choices.

Although I am fortunate enough not to suffer with headaches there is one exception and that’s when I eat chocolate.  So, for me if I need to snack it is far better to reach for some fruit or nuts or seeds that not only fill me up quickly, are less addictive and I know they keep my sugar levels stable.

Celery, turmeric, curcumin, glucosamine, coconut oil, aloe vera either as a gel or drink are a few of the alternatives that get talked about regularly and there is nothing wrong with herbs and spices being used to flavour foods in cooking.   My personal belief is that we should get all the vitamins and minerals from the food we eat, eliminating the need to take them in tablet form.

Living with a long-term illness is tough but many of us know what foods and drink cause a reaction and make our condition worse, I can give out the facts, I can suggest you use common sense, but I cannot take away your personal choice.

Breaking the itch scratch cycle

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

 

Always do what it right for you

I can never quite work out if the itch/scratch cycle is solely down to my lymphoedema, the medication I must take or that I was born with very dry skin.  I know as a child I had eczema which would flare up from time to time but eventually seem to outgrow. I do know that the itching has got worse since my lymphoedema, but I also know some of my medication states clearly that it can cause hives and itching.  My guess would be a combination of both?

This week I ran a poll amongst L-W-O members and asked, "what time of day they found the most difficult"?

The Poll ran for 48 hours and 41 members took part

 

My urge to scratch is always in the evening, usually around my wrist area, very much on my affected side, but my feet can also cause problems.

I will always be eternally gratefully to my Aunt who when I was 10 gave me a jar of Pond’s and told me to moisturise every day, saying very firmly “don’t forget your neck”.  Moisturising was instilled in me from a very young age, and I have never had a problem with the routine of looking after my skin.  The older I get the more appreciative I am of this early advice.  My Aunt lived until she was 102.

 

Many of our members report itching, burning sensation on their skin and we know from experience that keeping our skin in good condition is essential for our overall well-being.  Although not for everyone I find body brushing does help, especially if my skin is flaky.  A gentle brush followed by holding my arm under a cold water tap really does work for me.  If the burning sensation gets too much, I use an ice pack. Then lots of moisturiser. 

With my feet I keep a pair of clean white cotton socks at hand then moisturise my feet and put the socks on as it holds the moisture in.  A glass of water helps at this stage, because I am moisturising from within and this does cool me down internally.  It won’t suit everyone, but it does work for me.

I would also suggest that mild, unscented soaps and conditions are preferable. Please remember that’s soaps can be very drying and again it is important to use something you like and works for you.

Finally nail care is essential, I keep my nails short, filed and try not to let them get too ragged so that if I do scratch before I realise what I am doing, then I don’t cause too much damage. At all costs avoid breaking the skin.

View older posts »

Affilate program