Lymphoedema Awareness Week ~ Sarah

Read Sarah's story to learn the many ways she manages her lymphoedema in the fourth of our #ResilienceinLymphoedema posts:

I am Sarah. In early 2013 I found a lump in my left breast, and the rest as they say is history. Although it’s not. Then, aged 38 with a 5 year old, husband just started a job working away during the week, cancer was not something that I was expecting to deal with. I didn't have a very good breast care nurse, she retired at some stage of my treatments, I only met her once, the day I was diagnosed. So every step of my journey was a step into the unknown. No one told me about lymphoedema.

Lovely TAC chemo, lumpectomy surgery with full node clearance and 20 rounds of rads. I also have a node with cancer in my collarbone area that couldn't be removed. I was told that Chemo and extra radiotherapy to that area would kill off the cancer and lymph node. The radiotherapy has caused further damage to my lymphatic system around my neck, which does build up too.

During my first week of radiotherapy I noticed pockets of swelling in my inner forearm. My arm started to ache, a lot. So I started to google and learnt about lymphoedema. The nurses in oncology dismissed my worries and requests of a referral, it was side effects of the radiotherapy and it would settle down.

A few months later I saw a new breast care nurse for a routine post treatments follow-up. She agreed to refer me to the local lymphodema service and a few weeks later I became the new owner of one beige and one black sleeve.

I do try to hide my sleeve as I get fed up with people looking and staring and then asking what have I done to myself. It does feel a bit of constant reminder of what has happened to me. I think the sleeves are pretty ugly too!!

So over the past couple of years I have had to make some small adjustments in my day to day life. I've learned not to sleep on my left side if possible or hold my sons hand on my left hand side, it hurts too much to have my arm in that position. I have switched wearing my wedding ring to the right hand. I try not to overdo the shopping so use online for bigger shops, gardening, heavy lifting. I've switched my car to driving an automatic. Putting my jacket on left (lymphie) arm first. 
Swimming is a good exercise for my arm. I do believe use it or lose it. So I do as much as I can to keep my arm in good shape.

All my clothes are non-restrictive around my armpit area. I try to buy cottons and stretchy materials where possible. Most things now have long sleeves and cardigans are now staples in my wardrobe!

I am fortunate to live in an area where we have a fairly well funded lymphoedema service. But budgets and funding is limited and I do feel angry that I had to develop worse lymphoedema before I could have extra treatments which I fully believe would have stopped it developing if they had been available for everyone.

The lymphoedema nurses have referred me to a physiotherapist to ease cording in my arm. It was noticed that I have damaged to nerves from the surgery and radiotherapy. I have various exercises to help ease the stiffness, but it does explain the sharp pains and restriction in movement I have.

This past year it has been confirmed by the breast surgeon that lymphoedema has spread to my chest, breast and back areas. So the tight, firm and lumps I've always had in my breast since surgery is actually lymphoedema swelling, as well as scar tissue, etc. I was quite relieved to learn that one particular painful lump in my breast wasn't anything more sinister!! It’s a constant learning curve. This has opened up a new world of treatments which never existed when lymphoedema was "only" in my arm.

I have just completed a 12 week course of LLLT (low level laser therapy). Its worked well for me and even help ease some of the discomfort from the scar tissue. From the first session I felt a small "pop" in one area of the breast and a strange drawing, trickling feeling as the fluid had finally been released. The nurses have taught me how to self-massage, to use kinesiology tape on my arms and body to assist fluid movements. It’s a two-person job to put the tape on my back and chest - dear hubby came along to learn too. I have also tried the pump sleeve. It didn't work as well for me, but it is very relaxing and did ease some aches.

I've have tried a few different sleeves, some are too short, some are too hot and itchy. However one thing they all have in common is that they are beige!! Although there are a few brands that also do sleeves in black which is better. At the moment I have some cotton ones as I was getting a sweaty rash last summer. They are cooler to wear but they do not like it when they take an accidental trip through the tumble dyer!

My advice is keep talking to the health professionals to get help. Ask questions. Not all the services are joined up so you do need to be your own advocate. There is help out there, just not always easy finding it!

Weekly Discussion Summary ~ To Plan or Not to Plan, That is the Question

This week, the topic for our discussion was 'Planning for the Future.'

Naz introduced this week's topic by explaining the cognitive processes involved in planning for the future - making predictions, being insightful, calculating the possibilities and probabilities of outcomes and managing reasonable goals within the time-frame we have in mind. Following a trauma such as cancer, these processes can be impaired as uncertainty dominates, making us apprehensive. 

Some of us described a reluctance to plan, often due to fatigue leading to a fear that plans will be cancelled, as we don't like letting others down. Fear and uncertainty about our health in the future leads many to look only to the short term, with many planning in small chunks around check-ups. We feel frustration that we can't do as much as we used to, but conversely many have stopped putting things off and are packing lots in to every day whilst also scheduling holidays, concerts, days out and family time. A few have embraced living in the now and retired, planned big holidays, moved house. Others feel life is passing them by. 

Some of us have always been planners, others more 'go with the flow'. All of us described feeling differently about our future after our diagnosis of breast cancer, although whether we have a primary or secondary breast cancer had significant implications. We wondered whether the key to future planning is to live for each day but look to tomorrow as well, to ensure that it is planned to an extent that provides us with the activities and lifestyle we really want. As one lady put it 'I have very little power over the future and all there is now.' 

But, Naz explained that while being in the ‘now’ is good, we are evolved to be goal oriented and to hope for a bright future, to have hopes, dreams, desires and objectives. Our tough challenge is to hold on to and strive towards our dreams whilst accepting that we have little control over the outcome, and, it is this acceptance that is so very hard for us all. 

If you are a woman living in the UK with a diagnosis of breast cancer and would like to join our private group please leave your name in the comments and we will message you with details.

#ResilienceDiscussion

A big thank you to Viv for generously allowing us to use this beautiful photo.

Lymphoedema Awareness Week ~ Lymphatic Exercises

#ResilienceinLymphodema
Courtesy of Edely, Lymphatic Yoga Expert
L-W-O Support

Lymphoedema Awareness Week ~ Rachel

'Mild lymphoedema can be kept under control with massage'.

Read Rachel's story, the third post in our #ResilienceinLymphoedema series, and find out how she managed swelling that developed following an infected insect bite:

I'm Rachel and I was diagnosed with breast cancer in 2012. I was aware of the risks of lymphoedema after a talk from the physio after my surgery. We were told never to lift anything heavier than 5kg ever again, not to carry shopping in that arm, not to use jacuzzi, sauna or steam room, not to have massage on that quadrant of my body. I came out of the talk feeling very depressed, all those pampering treats which made me feel good were now off limits.

But after talking to other people, I came to see what I could do and found ways that I could still treat myself and all was going well.

Then 4 years after my surgery I got an insect bite on my affected arm while on holiday in Italy. It reacted badly. Luckily my GP knew that I have reacted badly before so I was prepared with antihistamine and antibiotics. My implant reconstruction was becoming pink and swollen but the antibiotics kicked in quickly and it settled down. But I was left with swelling in my breast. It took a while to be taken seriously as my breast care nurse said it looked fine, but eventually my surgeon agreed to refer me to the lymphoedema physio. She immediately agreed that there was lymphoedema in my breast, where fluid was trapped by scar tissue but also identified it in my arm. I hadn't noticed as my dominant arm is slightly bigger anyway. I was lucky that after the first session of being shown the correct technique and direction for me, the fluid moved and lymphoedema went down. I know I've been very fortunate that it hasn't caused a long term problem. I know my arm and breast are at risk and keep doing the massage.

My message is, if you are worried ask for a referral, don't be fobbed off. Trust your instincts as you know your body best. Mild lymphoedema can be kept under control with massage.

Lymphoedema Awareness Week ~ Kim

In the second of our #ResilienceinLymphoedema posts, Kim describes how she's learned that lymphoedema doesn't need to control who she is:

I'm Kim and it’s been 6 years since my radical mastectomy & axillary node clearance and 4 years since I was diagnosed with mild to moderate Lymphoedema. I wasn’t entirely surprised at the diagnosis as I’d been having problems on and off with my arm almost continually since surgery but I won’t lie, it was very disappointing. The news came at a time when I was still hoping to return to my career as a professional dancer and my heart sank at the thought of how on earth I’d disguise a compression sleeve under a costume. I’d already had to give up all my beautiful wardrobe of sparkly costumes because they couldn’t be remodelled to take account of being short of a breast, so this seemed like the last straw.

That was then but now, having learned how to live with the condition, I am a lot more philosophical about it all especially as I have met many women with Lymphoedema much worse than mine who cope amazingly well with the condition. To begin with, struggling with getting the sleeve on and dealing with the sores that often appeared in the crook of my elbow was tough but I have the support of a lovely Lymphoedema Nurse and she sourced me a new type of lightweight sleeve that is easy to put on and is designed to help reduce soreness at the elbows. Since then I have managed to make wearing a compression sleeve just another part of everyday life. Yes, it’s a nuisance and it’s sometimes a challenge dressing in a way that doesn’t make the sleeve the focus of what I’m wearing but it is doable.

For me, one of the most of the most important parts about having Lymphoedema was making sensible choices so that I don’t do anything to aggravate it and these are things that anyone who has had some or all of their axillary lymph nodes removed. It’s important to look after your arm as Lymphoedema can develop many years after surgery (I know someone who was recently diagnosed 22 years after her mastectomy). Keep it well moisturized and deal with any cuts, abrasions or insect bites promptly to avoid an infection developing. I carry antiseptic cream, a bite cream and sticky plasters in my bag just in case of minor accidents. Other things to remember are not having your blood pressure taken on that arm or any needle sticks.

One of the tricky things for me has been learning how to rein myself in when it comes to doing things that can put additional stress on my arm. I’m a very ‘crafty’ person enjoying crochet, making jewellery and working with polymer clay, all things that done to excess can make my arm hurt and cause it swell up if I overdo things. Pacing myself was never one of my strong points but at least having Lymphoedema has helped taught me how to do that!

Lymphoedema can seem like a devastating blow when you are already dealing with all the rubbishy things that a breast cancer diagnosis brings but I am living proof that it is possible to live a quite normal, active life and not let it control who you are.

Lymphoedema Awareness Week ~ Ruth

Read Ruth's story in the first of our #ResilienceInLymphoedema series to mark Lymphoedema Awareness Week:

I'm Ruth and I was diagnosed with breast cancer in 2004 and again in 2008, with two lots of surgery, chemo and radiotherapy on my left side.

I didn't develop lymphoedema until 5 years later. It started very gradually - the first sign was when I noticed my left arm looked bigger. I was referred to the lymphoedema clinic where I was diagnosed with mild LD and given an arm sleeve.

All remained stable for about 15 months when quite suddenly (and frighteningly) on Christmas Eve of 2014 it started swelling quite badly and aching too. I got an emergency appointment with the LD nurse on 2nd January and entered a period of trying to get it under control. At this point I was very, very miserable - it felt like a deformity and I just wanted to hide! Various treatments were tried including taping and lymphatic drainage massage (which I paid for privately).

Since then it has been up and down. I found that working at the computer made it worse (and probably triggered the sudden worsening) so I try to take regular breaks and stretch my arm. Ready-wrap is wonderful when it flares badly but bulky, so I now rely mainly on my compression sleeve and a morning self-massage routine.

The support group L-W-O has been extremely helpful to me. I have now largely come to terms with it and it is just part of who I am and a small price to pay for still being here. I try to always look after my arm - no lifting and always keeping it well moisturised.

One of the things that I found difficult was other people's reactions to my arm sleeve. I often get asked what I've done to my arm. My answer varies from "don't ask!" to "it's holding my arm on!". I find the black arm sleeve easier to wear (in terms of my vanity) than the beige.

The photos are of me wearing my sleeve (my LD is currently fairly stable). I am lucky that at present my hand is unaffected.

To anyone just starting out on this journey I'd like to say that whilst LD is unlikely to "get better" it is liveable with and can improve.

Lymphoedema Awareness Week ~ World Lymphoedema Awareness Day ~ 6 March 2017

Over the next week we'll be sharing the experiences of some amazing women living with lymphoedema, but what exactly is lymphoedema?

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 usually affects the arms or legs, although, following breast cancer can affect the breast and trunk.

About 2 out of 10 people (20%) with breast cancer develop lymphoedema: http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/treatment/lymphoedema-after-breast-cancer-treatment

 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 you recover. Lymphoedema can develop soon after surgery or radiotherapy. But it can be triggered many years after treatment - the risk of developing lymphoedema is life-long where the lymph nodes have been removed or damaged.

There is no cure for lymphoedema, but symptoms can be controlled using a combination of different techniques, usually massage and compression garments but also taping. There are also things you can do to help prevent the condition getting worse, such as specially designed exercises, good skin care to avoid infection and having a healthy diet and lifestyle.