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Living with lymphoedema

Posted on: Monday, 16th March 2020 by Nicola Wild, Media Volunteer

Lymphoedema can affect people in different ways. In this blog, Nicola shares her experience. Nicola was diagnosed with cervical cancer in 2008 when she was 27. In May, she had a hysterectomy and all her pelvic lymph nodes removed. She then had chemotherapy and pelvic radiotherapy after regaining some strength, about 3 months later. She has been cancer-free since her treatment 12 years ago, but still struggles with lymphoedema in her left leg.

How were you diagnosed with lymphoedema?

It began about 6 weeks after my treatment had finished. I remember getting into the shower and within seconds, I felt a weird kind of throbbing in my toes. When I got out, my foot and toes had swelled up like a balloon. It was like someone had turned a tap on; it was instant. I had no idea what it was so I went to A&E straight away as I’d been warned during treatment about infections and was panicking. I was scanned and they told me that I was retaining water, but within 24 hours my calf and knee had started to swell up too. I was formally diagnosed with lymphoedema not long after.

Lymphoedema has been an issue for the whole 12 years which have passed since my treatment. The first 5 years were the toughest, and I had to find out many things about the condition the hard way – there wasn’t a lot of information out there. However, I’ve come to accept the changes to my body, my mental health and my lifestyle. I hope that by sharing what it’s like and what helped me, I can offer some support.

What’s it like day-to-day?

My leg always looks a bit large, especially at my hip or thigh. Thankfully my bandage keeps it to a size where you couldn’t really tell if you didn’t know. This is largely because I wear a class 3 compression bandage religiously – it only comes off when I’m in bed or in the shower. Within an hour of not wearing my bandage, my leg can swell up and quadruple in size. It’s unbelievable how much that bandage does for me. 

Many things in daily life can cause a flare-up. One of the biggest things is emotional stress. When your heartbeat is raised due to adrenaline being produced, such as when you get angry, it pumps blood around fast and lymphatic fluid with it. The lymph nodes which would have drained this fluid have been removed, leaving my body with nowhere to put it. This is the same for any stimulant, so I’ve cut out caffeine too. Alcohol is also a big trigger – I tend to save drinking for special occasions (and if I have to pay for it the next day then so be it!)

How has it changed your life? 

I was a long distance runner before my diagnosis with cervical cancer, I had so much stamina and energy. It has been so hard not being able to do this anymore. It was a lot of trial and error to find what exercise I can do and I’ve found a love for swimming, yoga and Pilates. I can still walk my dog, provided I plan routes which have plenty of benches along the way. It might not be as intense, but you still feel like you’re doing something lovely for your health. 

I’ve learnt to accept that the style of clothes I am drawn to simply aren’t things I can wear anymore. I’ve learnt to love dresses and I’ve embraced the new me. I forced myself to look at the things I can do, rather than the things I can’t. I look at what I can be happy about, rather than what I can be sad about. It took me a lot of emotional support to get to this stage and process these big changes to my body, but I embrace what I can do. 

Mental health and lymphoedema

In the early stages – the first 5 years or so – it affected my mental health profoundly, it made me feel depressed. My body confidence was so low and I couldn’t wear things I wanted like skinny jeans or leggings. At the age of just 27, this was hard to take especially knowing that there is no cure. I began to hate summer because heat makes it worse, and I would feel uncomfortable having to wear my bandages and stay covered up. 

As time has gone on, I am very proud of how well I have gone on to deal with it. I don’t even really notice that I’m putting my bandage on every day. It now only gets to me if it’s particularly bad. I had a blip when I broke my foot a few years ago, which was extremely difficult as I couldn’t have a cast. It would have risked cutting off my circulation. I do get anxious about what would happen if I broke my leg as the risk of infection is really high. It can make me feel vulnerable. 

You have to put the work in with your mindset as there’s no cure. I’ve fallen in love with the parts of my life I can do rather than focussing on what’s missing. I certainly spent the first 5 years of my post-treatment life doing the opposite. 

What helps you?

Massages

Regular lymphatic drainage and massage. A treatment called Deep Oscillation helps me a lot. It uses an electrostatic frequency to help the massage penetrate deeper into the layers of tissue. There’s a lot of demand for this and very little NHS funding, so my amazing husband has learnt how to do the massage which makes a huge difference.

The Lymphoedema Support Network has videos about self-management, including massages you can do at home >

Baths

I have found that salt baths help to draw out excess fluid and support the lymphatic system.

My 'injury kit'

I keep an ‘injury kit’ on me at all times which contains some antiseptic cream, wipes and plasters – you can get these in a chemist. As you’re much worse at fighting infection if you have lymphoedema, small things like bites or blisters can turn really nasty and lead to infection if you don’t act quickly enough. For example I was hospitalised due to a mosquito bite on holiday. Keep these things clean!

A good razor

If you are going to shave your legs (and you might be advised not to), you must buy a good razor! I used to use other people’s or buy cheap ones and get cut to shreds, which would make my leg much worse.

Moisturising

From day 1, I moisturised every single time I got out of the shower. Give yourself a really gentle massage, using something really soft and natural like cocoa butter and it will help so much. It’s very common to get rough, hard skin if you have lymphoedema and it can crack and become infected, so do keep your skin hydrated and nourished as early as you can. I’ve not had any of these skin problems in 12 years.

Pillows

Treat yourself to really nice, luxurious pillows to elevate your leg on! When it gets painful, it can be so uncomfortable but if you keep it elevated it really helps (and it can be a nice excuse to lie in bed and eat chocolate!) 

Changing how I travel

I’ve stopped going abroad as plane journeys cause really bad swelling, which ended up meaning my holidays were not much fun. This won’t be necessary for everyone with lymphoedema but, if you do fly, make sure you’ve got the right level of compression for it. Sunburn is also a trigger, so SPF is extremely important. 

More support

Dealing with side-effects of treatment can be hard, but we’re here for you. We have more information about side effects, including lymphoedema, which may be helpful. If you need support, our free Helpline, Ask the Expert service and Forum are all open.

Find out how we can help >

Categories: cervical cancer

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