Our cancer experience: health professionals share their stories and offer advice

Being diagnosed with cancer can give you a unique perspective on care and two nurses and a breast surgeon share their experiences

Being diagnosed with cancer can give you a unique perspective on care and two nurses and a breast surgeon share their experiences and advice

  • Direct, spoken communication preferred to printed information
  • It’s okay to show emotions – patients don’t expect you to be superhuman
  • Mind your language and your non-verbal cues

Picture is an illustration of a woman in nursing uniform touching an image in a mirror of herself wearing everyday clothes. Two nurses and a doctor share their experiences of having cnacer and offer a unique perspective on cancer care
Illustration: David Mitchell

Healthcare professionals diagnosed with cancer face many challenges, some of which can be different from those faced by patients with no expert knowledge. Supporting other health staff who have cancer is an opportunity to reflect and gain insight that could improve the care you give.

Dorthe Swaby-Larsen was a nurse consultant in emergency care at a London hospital when she was diagnosed in 2014 with acute promyelocytic leukaemia, a rare form of the disease affecting only about 200 people in the UK each year. She now works part-time and trains nurse practitioners working in minor injuries and emergency departments.

Breast surgeon Liz O’Riordan was diagnosed with breast cancer in 2015, with a local recurrence in 2018. Side effects of treatment meant she had to retire as a surgeon, but Dr O'Riordan has since become an award-winning blogger, an international speaker and co-author of The Complete Guide to Breast Cancer: How to Feel Empowered and Take Control.

Jenny Lowe is now retired, but worked in palliative care for much of her nursing career. Diagnosed with breast cancer four years ago after a routine mammogram, she does voluntary work with the charity Macmillan Cancer Support, and has appeared in a Macmillan video designed to improve understanding of cancer.

They offer some suggestions on how cancer nurses can best support fellow healthcare professionals diagnosed with the disease.

Avoid assumptions about what people want

Being seen as a patient first and foremost is vital for Ms Swaby-Larsen: ‘Whenever anyone asked if I was a I nurse I’d say, “Yes, but I know nothing about leukaemia.” I may be different from those who want to know everything, but I made a conscious decision to just be a patient, only involving my professional knowledge once or twice. I trusted my team to do what’s best for me. It was my way of surviving.’

This extended to choosing to be told only two results, one of which affected whether she could eat normally and the other whether she could exercise.

‘I made a conscious decision to just be a patient, only involving my professional knowledge once or twice’

Nurse consultant Dorthe Swaby-Larsen

‘If I didn’t start walking properly I couldn’t go home,’ she says.

Jenny Lowe
Jenny Lowe

After diagnosis, Ms Lowe was provided with a large file of information produced by a specialist charity. ‘I found it difficult to read and would have preferred it to be spoken,’ she says. ‘When I had consultations with specialist nurses there were opportunities to ask questions, and I liked this direct communication.’

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Regardless of their healthcare background it is important to remember that someone may never have been a patient before, so it is crucial to give them the same information you would give anyone else, says Dr O’Riordan.

‘In my career, I’ve consented thousands of people for surgery, talking to them about possible complications, but when you’re suddenly the patient it’s completely different.’

Signposting newly diagnosed patients to reputable sources of support and advice is a key role for healthcare professionals, she believes, with recommendations gathered from patients themselves, based on what they have found useful.

‘A former colleague pulled a face – people need to be aware of the signals they’re sending’

Retired nurse Jenny Lowe

Drip-feeding information is crucial, especially for those patients who have not anticipated a cancer diagnosis and may be shocked.

‘I didn’t suspect for a minute that there was anything wrong with me,’ says Ms Swaby-Larsen. At the outset, not realising the seriousness of her illness, she thought she could be treated as an outpatient and would be back at work in three months.

‘I struggled with overload and I remember my nurse specialist asking if I understood my treatment plan,’ she says. ‘I didn’t, so we went through it again. It’s about information being repeated as you’re ready to hear it.’

Mind your language and your non-verbal cues

Often body language or non-verbal communication can be just as significant as what is said.

‘I remember bumping into a former colleague when I was waiting for an appointment. She must have realised why I was there, and pulled a face,’ recalls Ms Lowe. ‘It wasn’t good. People need to be aware of the signals they’re sending.’

Even just seeing the consultant and nurse specialist in the room together after her check-up sparked anxiety for Ms Swaby-Larsen. ‘They simply wanted to say hello, but immediately I thought it was bad news again,’ she recalls. ‘I had to ask them never to do that.’

She also feels that some of the language people use around cancer, such as ‘fighting’ the disease, can be unhelpful. ‘I fought nothing, but those around me did,’ says Ms Swaby-Larsen. ‘Some patients find it hard to have that added pressure.’

Patients may have expert knowledge about the significance of test results

Liz O'Riordan

As a breast cancer surgeon, Dr O’Riordan understood exactly what her results meant, what treatment would be involved and her chances of survival into the next decade.

‘I went into denial because I wanted to protect myself from what my brain knew,’ she says. ‘Usually patients are drip-fed information, but I knew everything from day one. It was much more about what information I shared with my husband and family. They said afterwards I became dissociated and matter-of-fact when I was talking about my cancer, and it was as if I was talking about another patient.’

‘You’re not scared of talking about it, but of people avoiding you’

Nurse consultant Dorthe Swaby-Larsen

She would like to see more privacy for inpatients when they are being told of a cancer diagnosis, with a quiet room where they can be taken to hear the news.

‘We do it during a ward round behind a curtain, where others can hear,’ she says. ‘As a patient, you have to deal with your emotions in public. It’s little things like this where we can make a difference.’

Be yourself, and treat a colleague with cancer as a fellow human

Treating other healthcare professionals can be daunting for staff, especially those who are less experienced.

‘I didn’t want staff to feel I was judging them,’ says Ms Swaby-Larsen.

It was also important that colleagues knew the truth about her illness. ‘I didn’t want rumours to start,’ she says. ‘If I’d broken a leg people would have been more comfortable. You’re not scared of talking about it, but of people avoiding you.’

If you see someone you work with coming in for treatment, taking your cue from the individual is key, as is treating them with empathy and compassion.

 ‘If someone makes eye contact, then I’ll nod my head and if they look like they want to chat, then I will, but otherwise I just walk on. They are there as a patient,’ says Dr O’Riordan.

Liz O'Riordan is co-author of The Complete
Guide to Breast Cancer: How to Feel
Empowered and Take Control

‘I tend to seek out those who are doctors or nurses because I feel others withdraw from them,’ says Ms Swaby-Larsen. ‘Often what you need is just someone to treat you normally and be nice to you – you’re still the same person. I talk to them as a human and not a nurse, doctor or professor.’

Remember that others can provide valuable support too

Other patients were a major source of advice for Dr O’Riordan. ‘Doctors and nurses tell you what will happen to you, but it was patients who taught me how to cope,’ she says.

They shared practical tips such as the best toothpaste to use for a sore mouth, or what to drink during chemotherapy.

For Ms Lowe a local cancer charity called Cancer Care helped significantly. ‘They have complementary therapies, massage and counselling. It’s a fantastic charity and everyone listens and is kind. That’s what you want.’

‘The doctors saved my life, but it was the nurse specialists who brought me back to living’

Nurse consultant Dorthe Swaby-Larsen

Nurse specialists were essential to Ms Swaby-Larsen’s recovery. ‘Someone told me they would become my lifeline, and they did,’ she says. ‘I’m ashamed to say I never understood their importance before. But they helped me navigate a system that even though I worked within it I couldn’t understand. The doctors saved my life, but it was the nurse specialists who brought me back to living.’

Small things matter – to all patients

For Dr O’Riordan it was the small acts of kindness, such as someone going out of their way to bring her a glass of water, that made the biggest difference. ‘It’s listening too and asking whether there is anything else you can do to make their day better,’ she says. ‘Cancer may be routine for healthcare professionals, and we’re all busy, but it’s terrifying for the person who is experiencing it. Remember one day it could be you.’

During a particularly bleak moment of her treatment, Ms Swaby-Larsen remembers a phone call with her nurse specialist. ‘I was lying on the sofa at home and it was as if a dark cloud came over me,’ she says. ‘I was low and couldn’t be bothered to do anything, even lift my head.’

The nurse asked her to come in. ‘She had an amazing ability to detect something in my voice that I didn’t know was there.’

Learn from colleagues who have had cancer

In the past, Dr O’Riordan would tell patients they were lucky their cancer had been spotted early and it was good it hadn’t spread.

‘But no one is lucky to get cancer, and no cancer is good to have,’ she says. ‘I don’t say this anymore. I was trying to convey hope, but you don’t realise the impact of those words until you’re on the receiving end.’

‘I’m not scared to talk about cancer now, whereas I probably was a little bit before’

Nurse consultant Dorthe Swaby-Larsen

Continuing to work while she was being treated for a relapse gave Ms Swaby-Larsen an opportunity to put some patients’ minds at rest when they spotted that she had a peripherally inserted central catheter (PICC) line in her arm. Rather than wear a bandage, her mum made various decorative covers for it.

‘It became a talking point,’ she says. In one instance a patient had been told they needed a line but did not want it. ‘I took my cover off, showing I had one too.’

She feels her compassion has increased. ‘I’m not scared to talk about cancer now, whereas I probably was a little bit before,’ says Ms Swaby-Larsen. ‘I’ve learned that as healthcare professionals we’re allowed to show emotions, even at work. Patients don’t need us to be superhuman.’

Lynne Pearce is a health journalist

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