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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.
Lymphoedema can affect people in different ways. More information on 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 five 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.
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!)
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.
In the early stages – the first five 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 five years of my post-treatment life doing the opposite.
Categories: cervical cancer