HEALTH

What it feels like to get breast cancer when it’s something you’re an expert on 

Liz O'Riordan. Photo: Muse Portraits

Consultant breast cancer surgeon Liz O’Riordan was diagnosed with breast cancer last July, aged 40. Suddenly, she found herself on the other side, having to cope with the highs and crashing lows of treatment, and learning how to become a patient

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I’ve actually had lumpy breasts for a couple of years. I had a lump in my right breast in September 2014, and the mammogram and ultrasound just showed a lot of small cysts, which is common for my age. But, like most women going to have that scan, I was scared – you think, "It’s cancer. I’ll be dead in a couple of years." Then I had a lump in the left breast in March 2015, and I went for another ultrasound and that just showed more cystic tissue – nothing to worry about. 

In about June of last year, a lumpy area came up in the same breast and I waited a month before I had it checked out. I wasn’t at all worried this time, because I’d been seen twice already. The doctor doing the ultrasound knew who I was and said, "Do you want to have a look?" We both thought it would be cysts. But it appeared on the screen and, in that instant, I knew. It looked like a typical cancer. 

There was no learning curve. I knew what the next five or 10 years held in store for me, or I thought I did. They did biopsies of that lump and I got the results three or four days later, and that showed the cancer. I’d had time to warn my friends and family, and that was the hardest bit. I had to ring them and say, "I might be telling you in three days that I’ve got cancer." It felt like I was talking about a patient; I think I thought of it that way because I was trying to protect myself. That’s the worst bit about finding out that you have cancer as a doctor – you know everything: all the good, all the bad. The stuff you don’t really want to know at all.

They decided to give me chemotherapy first to try and shrink the tumour, so I could avoid having a mastectomy. Within a week of hearing the results, I was having chemo. There’s no time to get your head around it. Your brain hasn’t caught up yet with what your body’s going through.

That’s where the breast care nurses come in and they’re amazing. When you’ve heard bad news from a consultant, you’re often in a state of shock and you don’t take anything in. The nurses then go off with you to a quiet room and go through it all in more detail. They let you shake out all the emotions you wouldn’t dream of telling the consultant and they’re there to support you. It was the same with oncology: you see a chemotherapy specialist nurse, who’s there to deal with any emotions that might come up, any fears that you have. Part of me felt that, as a doctor, I shouldn’t need to ask any questions. Because I’ve worked in that hospital as a registrar and my husband works there, it was hard admitting what I was really feeling to people who knew me as a colleague.

It felt like I was talking about a patient. That’s the worst bit about finding out that you have cancer, as a doctor – you know everything: all the good, all the bad. The stuff you don’t really want to know at all 

That’s where Twitter came in and saved my life, really. We made the decision to come out with the news publicly – I was being treated in the same hospital where my husband worked, so if nobody knew, he couldn’t get the support he needed. By telling everybody, suddenly people at work knew what was going on, he could get hugs and I had loads of people pouring through Facebook and Twitter, giving me support. It was like this massive network you never knew you had, which was there every hour of the day, even when you were awake at three o’clock in the morning.

I started my blog about a month after I’d been diagnosed, both as a therapeutic way to get my emotions down, and also just to try and help other people by demystifying the experience. It took on a life of its own and it’s been so therapeutic. I’ve had wonderful comments from both doctors and patients alike and it’s been very helpful for my friends and family to read it because, even with Skype and FaceTime, it’s still hard to tell them just how low you’re feeling. For them to read the blog and know what I’m going through has brought them closer to me.

Chemo was every three weeks for six cycles. The first drug was called Docetaxel and that was like having the worst hangover of my life. It’s like drinking a bottle of gin a night for seven nights, without the dancing on the table. Constipation, headaches, flu pain – you just feel really physically rotten and that’s when my hair fell out. 

Liz and her husband, Dermot, just before her first chemotherapy treatment
 

It happens about day 13 and your pubic hair goes first, which is quite odd. Then my hairdresser shaved my head for me. I hated how I looked in the mirror for a couple of days; it just took a while to adjust. I didn’t want to bother with a wig – I’d need to wear it for 18 months and, with the hot flushes, most women can’t wait to take them off. With a headscarf, I felt more like a cancer victim than I did going bald, but then hats didn’t fit me, because hats are made for people with hair. Eventually I got one that I love from Paul Smith, who does them in a small size. 

I started my blog about a month after I’d been diagnosed. It has been very helpful for my friends and family to read because, even with Skype and FaceTime, it’s still hard to tell them just how low you’re feeling

Not shaving your legs or having to bother with your bikini line for six months is great – you get a free Brazilian on the NHS. The hardest thing for me, which happened around the end of chemo, was losing my eyelashes and my eyebrows. Putting on mascara is such a female ritual. Having your eyelashes go just makes you feel, "I don’t look feminine any more. I’m just an androgynous head with no body hair." And that was quite hard to get used to. I bought some fabulous glasses, thinking, "If you’re going to look at me, look at me because I have fabulous glasses, not because I’m bald." They have big black frames – a bit like Iris Apfel – and red shoes on the end of the arms. So that was my going-out look.

After three cycles of Docetaxel chemotherapy, I had three cycles of three drugs, known as FEC. My nails started to go brown and soft, and I felt really physically tired and very, very nauseous. For my husband, I think it’s been hard to watch me go through it and not be able to help. He has to go to work and leave me on the sofa, looking and feeling like crap. Someone got us a brilliant Royal Marsden cancer cookbook. You lose your sense of taste with chemo, your mouth is sore, but you know you need to eat, and it’s got great ideas for building you up. We’d bulk-cook in my good weeks, so that he’d know what to feed me. 

Throughout the chemo, I tried to keep fit. I’m a triathlete and I continued doing park runs whenever I could. I cycled to some of my chemo sessions and did a sprint triathlon halfway through. I had a brilliant neighbour who got up with me at 6.30 every morning, no matter how crap I felt, and almost every day we’d walk for half an hour. It was good to feel I’d done something before spending time on the sofa. A lot of evidence has shown that if you can walk for three hours a week during chemo, it improves the side effects and even the survival rate. If you know anyone going through chemo and they live locally, just try to get them out of the house – it does make a massive difference. 

My surgery was planned for 10th December and I spent a long time working out what to do about that. I’m an oncoplastic breast surgeon, so I do breast reconstruction, but suddenly I had five months to work out whether I wanted one. You can’t make a rational decision about how you feel about your breast, because that breast has cancer, so you’re not thinking normally. Am I attached to it? Is it important sexually? All of these things were going through my mind. I also knew there might be problems with an implant after radiotherapy – again, I know too much. But, eventually, I decided to have an implant reconstruction. 

It’s scary going in for surgery, but the hospital staff were lovely, and treated me just like Liz – not Liz the doctor who’s worked with us for two or three years. My surgeon is a close friend, but we’ve had to put our friendship on hold during all of this. It’s very, very hard treating someone you know – the stakes are much, much higher for both of us. 

My husband and I went back to get the results of the surgery on 23rd December. I knew that the post-chemo scan had shown that the tumour had already melted away and that, when they did the ultrasound right at the beginning, my lymph nodes looked normal in my armpit – so I wasn’t expecting to hear bad news. We dressed up for the appointment. I thought it would just be a chat and off we’d go.

Not shaving your legs or having to bother with your bikini line for six months is great – you get a free Brazilian on the NHS. The hardest thing was losing my eyelashes and my eyebrows. Having your eyelashes go just makes you feel, ‘I don’t look feminine any more’ 

Instead, she told me that it was much bigger than they’d seen on the scans and it had spread to a couple of lymph nodes. And I wasn’t prepared for that. Suddenly, I really felt how my patients must feel – you can’t think and you just want to run out of the room, screaming and crying and swearing. 

I’ve now had more surgery to remove all the lymph nodes and I’ll be having radiotherapy very soon to deal with any cells that might still be on the chest wall, in the armpit or in the neck – and that’s fairly standard treatment. But this experience is like a rollercoaster. It’s worse because it spread, but I won’t know the actual prognosis until I get the results back from the surgery.

I felt much calmer once I’d written my blog post about getting the bad results. That was my way of dealing with it mentally. When I was initially diagnosed, I didn’t feel that it was real and, even after the end of chemo, I thought, "I don’t have cancer. I feel well. It’s not really happening." I think the blogging has helped it slowly sink in. But it’s like a shutter comes down, so that you can preserve or protect yourself. Life has to carry on. You still need to cook and clean, and sort out Christmas. I feel like I’m not talking about me and there’s no emotion in my voice – it’s like I’m telling a story. But that’s just how I’ve coped with it. 

It’s been very hard to be a patient who’s a doctor. I’ve had a couple of bad days, crying in the shower when I’m alone and no one can see. Because I’m being treated by colleagues, I’ve had to find the places where I can talk about intimate issues like sex and the menopause – that most women would want to talk about. There are people who’ve been going through chemo with me on Twitter – other doctors with cancer – and we can share our real emotions with each other, because cancer patients understand. I have my low moments with them and it’s OK to admit you feel like crap, and then we pull ourselves together for our families. There have also been some close friends who’ve been texting every couple of days – just "How are you?" It lets you know that they’re thinking of you, and those little things help you get through.

Liz after competing in the West Suffolk triathlon in 2015 
 

Liz O’Riordan blogs at liz.oriordan.co.uk.

The professional photographs of Liz were taken towards the end of chemo by Muse Portraits. Visit theinspirationisyou.co.uk for more information.

@Liz_ORiordan

As told to Hattie Crisell

Liz O'Riordan. Photo: Muse Portraits
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