Lymphoedema Awareness Week 2018 Day 5 ~ Pauline

"I hate the fact that I'll probably have to wear a sleeve forever...."

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

About two weeks after my mastectomy I went to see the surgeon. She looked at my arm and said "That's swollen". I was sent for a scan on my arm to check for blood clots. Nothing was found and so it was lymphoedema.

I had to wait a few weeks for an appointment with my local Lymphoedema Clinic where my arm was measured. It was about 12% bigger than my other arm. I was put on this machine with this massive sleeve that massages your arm. It did seem to help a bit. I was also given this enormous padded sleeve to wear. I could hardly get my coat over it.

I went back every few weeks for the same treatment. Then had the news that this particular Lymphoedema Clinic was being taken over as the contract had ended, so I had to go elsewhere. The only problem is they don't believe in using this massage machine. So basically I had a nice, proper sleeve tailor made for me. I wear it everyday and do some exercises but the swelling isn't reducing any.

Whenever I go to be measured, it's either about the same or slightly worse. I'm annoyed there isn't more they can do for my lymphoedema. Luckily, I'm not in much pain with it. My arm does ache and I hate wearing the sleeve in the summer, especially as with my hot sweats it makes matters worse. I want to go abroad but worry about my arm. You have to be so careful not to get injuries in case you develop cellulitus. And, I hate the fact that I'll probably have to wear a sleeve forever as I've been told it probably won't go.

I'm only being seen now twice a year, but if it's only to be measured, I suppose that's sufficient.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 4 ~ Lorna

"I don't like having lymphoedema - but I see it as just part of being extremely lucky to be here."

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

I had chemotherapy, lumpectomy and lymph node clearance, and then radiotherapy which finished in December 2015. My lymphoedema developed immediately after surgery in August 2015 and affects my left hand, arm, upper back and my neck. My surgeon didn't believe that it was lymphoedema and it took my oncologist to diagnose - the radiotherapy had to be delayed because of the 25% volume swelling. Once radiotherapy began, it was swelling up during the blasts of treatment and I had to be taped to the machine. It was how I imagine a torture chamber would be!

Anyway, two years on and I am managing my lymphoedema. The volume difference in my arm and hand is less than 4% now and my neck is much better. I have to wear compression garments all the time, on my hand and arm, and I have kinesio taping on my neck. I haven't got any on now as it gets itchy in the central heating.

I don't like having lymphoedema - but I see it as just part of being extremely lucky to be here. My breast cancer was diagnosed after I was called for a trial mammogram for women under 50. I was 48 at the time and if I hadn't gone along it would have been a whole different story. For the first year it was really isolating. I didn't meet a single person with lymphoedema. I couldn't exercise because my neck was so swollen. I started off by swimming and then found a wonderful pilates instructor who is also a physiotherapist and I see privately once a week. I have lost all the weight (41/2 stone) that I put on during treatment and that has really helped.

I went to a local support group and met some other people like me, and now I am the chair of that group - North Essex Lymphoedema Support Group (NELSG). We are at Colchester Hospital next Tuesday promoting Lymphoedema Awareness Week. Anyone who lives in Essex/Suffolk is most welcome to come along to our meetings. Details are on www.nelsg.org.ukand on twitter @northessexlymph and facebook North Essex Lymphoedema Support Group (NELSG).

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#LAW2018
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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
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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.

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#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