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.

Weekly Discussion Summary ~ Finding the New Me

In this week's discussion we explored the ‘positives’ and ‘negatives’ of living with cancer and its effects and the challenges of understanding the ‘new’ me.

Naz began by asking some challenging questions:
Should the cancer have changed me? For the worse AND better? 
What should my ‘profile’ look like? Stronger? Weaker? Both? 
If both, then how can weak and strong live together in harmony?

Naz explained the huge role working memory plays in our everyday lives and how our responses to cancer can lead to cognitive interference as our working memory is dominated by our vigilance. She believes we need to build resilience. This allows us to develop cognitive flexibility by finding a lightness within our fear and sadness. Bringing together the 'good' and the 'bad' can lead to a new normal which can be special and complete. 

Our responses were diverse: some spoke of physical challenges, and our points of view were partly shaped by whether we were recently diagnosed, living with 'no evidence of disease' or whether we had a secondary diagnosis. We agreed that whether we like it or not, we are not the same, we have changed bodies and feel different. Some of us described feeling comfortable with our new selves. Some of us feel anxiety and fear, a sense of loss and grief for the person we once were. Many of us described seeking new opportunities and discovering a new zest for life, even while experiencing sadness and loss. 

While we could acknowledge that we are different, accepting our new selves is another matter. Many of us experience fatigue, but are reluctant to admit our physical struggles as we don’t want to appear weak, especially at work. The fear of recurrence is strong, but can also be a driver for positive change leading us to adopt a 'can do’ attitude. Many harness this to make life changes, and others say they’ve stopped planning for retirement, preferring to live life now, spending more freely to enjoy the experience of being alive and taking more pleasure in the everyday. 

Some of us look back and cannot relate to who they were before cancer, we are perhaps more emotional, sensitive and empathetic now. Some days we find ourselves grieving for our old selves, we feel lost and want to hide away. Some days we feel strong, we can take on the world. The challenge of being on this rollercoaster is to bring these extremes into balance. 

We learn from cancer that we need to live now. As one member put it: ’The old me was worried about getting old, the new me is scared she won’t get to.’ 

Our overall discussion concluded we are undoubtedly changed. We are weak, AND we are strong. We are darkness AND we are light. We are sad AND we are joyful. 

If you are a woman with a diagnosis of breast cancer and you would like to join our closed private group, please message us on our public page: https://www.facebook.com/resilienceinbreastcancer/?ref=aymt_homepage_panel

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A big thank you to Jo for allowing us to share this beautiful image of bluebells.