Lymphoedema Awareness Week 2018 Day 4 ~ Rhian

"My right arm was 35% bigger than my left one."

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018 ~ RHIAN

I was first diagnosed in 1995 and had a lumpectomy on my right breast. I'd had loads of warnings about lymphoedema but managed to avoid it.

A routine mammogram in April 2011 resulted in the cancer returning on the original scar. This time I had a mastectomy and no further treatment was needed. I was fine until the September. We came home from a cruise and were travelling to Berlin a week later. I was gardening (taking down the runner beans support). My hand ached a bit but I carried on and ignored it, packed and came to Berlin. I was proud of my nails as I’d had them done on the cruise. I was showing them off to my son and his then girlfriend and he said, "Why is your hand so fat mum?"’

I knew straight away what it was.

It became painful that night and slowly my right arm became more and more swollen. As soon as I got home I rang my Breast Care Nurse only to be told I needed a referral from my GP to a Lymphoedema Clinic. My GP referred me but didn’t have a clue what treatment to give me apart from a light support sleeve. I rang the Lymphoedema Support Network and was told to take it off immediately.
It then took until December to see the nurses in the Lymphoedema Clinic. I rang them at least twice a week and made a right nuisance of myself. They finally fitted me in. By this time my right arm was 35% bigger than my left one.

They taught me Self-Manual Drainage and measured me for a sleeve. That was it, they’d see me in 6 months.

When I went back to Berlin my son had discovered that every physiotherapist there was trained to do lymphatic massage so every time I visited, he booked me 2 or 3 sessions.

I read about the Haven in London and had 6 sessions there. After a year, my arm had reduced to 9% difference. I was told by my nurses that I didn’t need my sleeve any more. Happy Days!!!!! However, six months later it was back to 19%.

So I now wear my sleeve most days as it’s controlled at 7%. If I’m going out I don’t wear it. I know though if I do too much it becomes painful so I do stop now. The clinic have suggested discharging me from the hospital but so far they haven’t done it!! I now see them once a year.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

World Lymphoedema Day March 6th 2018

Top Row: from left to right: hand bandaging, Kinseo taping, Bandaging.
Middle Row: from left to right: arm bandaging, no bloods or blood pressure taken from arms, compression sleeve.
Bottom Row: from left to right: cellulitis of hand, kinseo taping, cannula of foot.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

World Lymphoedema Day March 6th 2018

Today, here at BRiC we support WORLD LYMPHOEDEMA DAY 2018, an annual advocate driven day when the global community comes together to raise awareness of this debilitating condition.

We join together in supporting the wider community and celebrate the resilience of all women living with resilience in lymphoedema, in particular, Anita, Bal, Carol, Jackie, Jane, Jennie, Lorna, Lynn, Pauline, Rhian, Ruth, Serena and Tamsin - all affected by lymphoedema and who have so generously agreed to take part in our feature over Lymphoedema Awareness Week.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 3 ~ Jackie

The Learning Curve Of Lymphoedema

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018 ~ JACKIE

After the diagnosis, after the surgery, after the chemo and the radiation. After all this – comes the pain of lymphoedema.

I was aware but not informed about the possibility of lymphoedema after breast cancer treatment. It floated at the back of my mind, a blurred concern, barely rising above the sharp focus of necessarily aggressive treatments.

I was so relieved following mastectomy and chemotherapy, to have avoided it. Like many others, a post surgical seroma was drained, and the gross side effects of chemotherapy were slowly settling down. Until radiotherapy. I started radiotherapy in positive mood. I knew it was more bearable than other treatments and came prepared. With the right lotions, healthy colourful diet, deep breathing, self-massage and buoyed up by the light at the end of the active treatment tunnel. Despite logistical problems of the delivery of radiotherapy - delays, cancellations, linear machine breakdowns and lengthy travel, I completed radiotherapy. Emerging into the first favourable mood of hope after diagnosis, for a return to normality.

And then lymphoedema struck. Approximately 1 year following diagnosis. Puffing up like a mushroom cloud around my trunk and chest. Initially confused with a bit of temporary post radiation swelling. But it wasn’t temporary. It was permanent. And forever. Perpetual and persistent. And pain radiated around it. I was thankfully referred by oncology to a fantastic lymphoedema service. Two exceptional ladies, soothed, massaged and supported me through the initial diagnosis. I was astonished at the amount of time and energy they spent on trying to reduce the alarming accumulation of fluid. Unfortunately but understandably, this service is limited – but I still have lymph reviews. Which I am so grateful for. Also so grateful for a tiny handful of whittled down support groups on facebook - especially BRiC. I started a breast cancer related lymphoedema support group (https://www.facebook.com/groups/BCLymphoedemasupport/). There were not many specific ones and I felt the need to be in a community that would nurture each other and explore the latest research.

I have been considering some of the issues which may increase the risk of lymphoedema. I was overweight during treatment. Quite an ‘inflammatory’ person – mild allergies and sensitivities. But the glaring irony is the treatment cause itself. Although radiation was the tipping point – I also had a mastectomy with 11 lymph nodes taken. Incidence of lymphoedema has been shown to increase in proportion to the number of lymph nodes removed. Managing a lifelong condition after ‘successful’ treatment seems a deliberately contrary and upsetting place to be. But I am hopeful for new developments in the pipeline – laser therapy, re-routing the lymphatic system to the venous system. And others. Until then It’s massage, maintenance and mindfulness!

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 2 ~ Jennie

"I've had another nine doses of cellulitis....."

LYMPHOEDEMA AWARENESS WEEK ~ 4TH - 10TH MARCH 2018 ~ JENNIE

Writing is not a strength, and what's more I bore myself when I talk about any of my medical stuff and so I apologise in advance.

I was diagnosed with stage 3 grade 3 breast cancer in March 2014. I had 3 operations to eventually remove a 10cm tumour, lymph nodes and left breast. I had chemotherapy, with an episode of sepsis, and radiotherapy ending December that year.

I began January 2015 feeling as though I'd been through hell. I had ongoing tests as the oncologist was concerned about a small lump identified on my liver, but hoped I could try and get back to some kind of normality. I can remember the sweats, breathlessness and lethargy as I attempted to push what was left of my poisoned body too fast, too soon.

Although I did the exercises and massage recommended by the breast team, the first sign of lymphoedema came just before my second operation when the hospital had to cut off my wedding and engagement rings because my hand was swelling. Then in January 2015, after chopping wood my hand and arm swelled up. I began wearing a sleeve shortly after my first dose of cellulitis came in July 2015 - this was after wearing a wet suit and getting in the sea the first time since diagnosis - the lymphoedema nurses thought it might have been caused by a jelly fish sting!

I've had another nine doses of cellulitis since then. Each time I've needed to take at least 2 weeks of antibiotics to stop the infection spreading. To say I'm sick of taking the tablets, and trying to take care of my arm would be an understatement.

Unfortunately the lymphatic system in my arm has been damaged too much by cancer treatment and isn't a good enough quality for them to perform the pilot operation to link it up with blood vessels.

Things that help me include - Sue (from a local cancer charity) who gives me some amazing lymph drainage massage. She has also on occasion applied kinesiology tape and bandaged me up. Also, the lymphoedema nurses at the hospital who gave me 6 sessions using the lymphosist machine which took away some of the swelling.

I am still trying to accept the long term nature of this condition. I find it a constant reminder of having had cancer. I probably feel I manage better in the winter than summer. In the warmer months, wearing less clothing, my arm is more exposed, which often leads to being repeatedly asked what I've done to my arm. So far I've found my son's suggestion as to a response for the reason I wear a sleeve the best - "a shark bite".

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 2 ~ Ruth

"It’s part of who I am." 

LYMPHOEDEMA AWARENESS WEEK 4TH ~ 10TH MARCH ~ RUTH

I developed lymphoedema in 2013, which was actually 9 years after my first diagnosis with breast cancer, for which I had a mastectomy and axillary node clearance.  

It first presented as mild swelling but it quite suddenly became a lot worse about 15 months later for no apparent reason except that I had the flu. Up until then I’d managed with a sleeve ‘as and when’ I needed it, provided by the specialist Lymphoedema Service, but afterwards I needed one with a higher level of support and a hand piece. At this point I was very upset, I hated wearing the equipment, I was in pain, felt unattractive and miserable. I also felt very angry as I really thought I’d ‘got away with it’. I coped (and still do) by using black rather than beige sleeves, creaming religiously every night with a nice smelling body cream and basically taking very good care of my arm.  Since then, it has gradually improved and just over 3 years later. 

While I still need the sleeve the hand-piece is no longer needed and the swelling has reduced a little. I use a car with an arm rest and this has also helped a lot. I’ve come to terms with it now; although I don’t like it, it’s part of who I am.  

#ResilienceInLymphoedema 
#LAW2018  
#LymphoedemaAwareness  
#thebriccentre

Lymphoedema Awareness Week 2018 Day 1 Introduction

LYMPHOEDEMA AWARENESS WEEK ~ 4TH-10TH MARCH 2018

To mark Lymphoedema Awareness Week 2018, we will be sharing some of the experiences of women living with lymphoedema, including how we were diagnosed, how we cope and how we have learned to live with our lymphoedema - with resilience.

According to CRUK, about 1 out of 5 people (20%) with breast cancer go on to develop lymphoedema,: http://www.cancerresearchuk.org/…/lymphoedema-after-breast-… This is because one function of the lymphatic system is to drain excess fluid from tissues and if the lymphatic system is disrupted or damaged as a result of surgery and/or radiotherapy, it can lose this ability and the excess fluid will cause the tissue to swell.

Swelling is a natural part of the healing process following surgery and usually settles down as we recover. lymphoedema can develop soon after surgery or radiotherapy. But, as you'll hear from the women who will be sharing their stories over the next week, it can also be triggered many years after treatment. It is important that people understand the risk of developing lymphoedema is life-long where the lymph nodes have been removed or damaged.

Lymphoedema, pronounced lim-fo-dee-ma, is a chronic (long-term) condition that causes swelling and leads to pain and a loss of mobility; it can also feel disfiguring. It usually affects the arms or legs, and sometimes the hand and fingers, although, following breast cancer it can affect the breast and trunk.

There is no cure for lymphoedema, but symptoms can be controlled using a combination of different techniques, usually massage and compression garments and also taping. There are some exciting surgical developments, but these are not suitable for everyone. There are also things we are advised which can help prevent the condition getting worse, such as specially designed exercises, good skin care to avoid infection and having a healthy diet and lifestyle.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness 
#thebriccentre