The Blue Fairy's Breast Cancer Blog

Living with Lymphoedema

March was Lymphoedema Awareness Month and below is a blog post I wrote for the Centre for Building Resilience in Breast Cancer about life with LD.

It’s been 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 should bear in mind. 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 surgery). 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 BP 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 has never been one of my strong points but at least having Lymphoedema has helped me learn 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, provided you take sensible precautions, it is possible to live a quite normal, active life and not let it control who you are.
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