I’ve been a cancer nurse for 30 years —these are the biggest regrets patients tell me

Jessica LindsayPublished Nov 30, 2023, 6:00am|Updated Nov 30, 2023, 10:34am

Louise Spence, Oncology Clinical Case Manager, at Bupa UK — Louise Spence has been helping people with cancer for almost 30 years (Picture: Supplied)

When patients feel unable to be open with their loved ones during gruelling treatment, Louise Spence steps in.

The qualified cancer nurse has been helping people living – and dying – from the disease come to terms with their diagnosis since 1995, and now works as a oncology clinical case manager.

During her career, she’s spent time working at The Royal Marsden and The Christie in Manchester, which is one of the largest cancer treatment centres in Europe, and since 2005, has channelled her patient-centred care working at Bupa UK.

Louise tells Metro.co.uk: ‘In my career, I’ve spent lots of time with people experiencing cancer, at various stages of their diagnosis and treatment. When patients feel unable to speak to their next of kin about certain subjects, it’s an honour to be there to listen to them, answer their questions, or point them in the direction of others that may be able to help.

‘As you can imagine, some of the topics can be deeply personal, uncovering a range of fears, worries and wisdom, but there’s often recurring themes that unite these kinds of conversations.’

Professionals like Louise give us comfort during some of the hardest moments of our lives, and their experiences can provide a unique insight of what these moments are like.

These are the things she hears most often in her work, from the regrets many end-of-life patients share to the memories that stick with us most.

1. ‘Live in the moment’

‘Being diagnosed with cancer often encourages patients to evaluate what they spend their time worrying on,’ says Louise.

We can all be guilty of sweating the small stuff, ruminating on what might have been and getting anxious about things that haven’t yet happened. It’s often only when we’re faced with something life-changing that we realise the importance of enjoying the present.

Louise recommends taking this advice on regardless of how your health is doing, adding: ‘Is it in the past? Will worrying about it change anything? If the answer is no, it gives patients permission to focus on the here and now, rather than on the unknown.’

2. ‘I wish I’d spent less time working’

According to Louise, a cancer diagnosis can prompt people to ‘reflect on their work life and the amount of time spent on their career.’

She says: ‘This may lead them to wish they’d spent more time doing what they love with their loved ones, rather than working.’

While there’s nothing wrong with loving your work or doing what needs to be done to support your family, some things – whether that’s a child’s school play, date nights with a partner, or just enjoying a cuppa and a chat with parents – are too precious to miss.

3. ‘I wish I’d gone to the doctor sooner’

Research shows that two-thirds of UK adults have chosen to delay or put off making a doctor’s appointment when they needed to go, with a worrying 15% saying they’d done so more than eight times.

Yet this is among the biggest regrets seen among oncology patients, as outcomes can be improved by early diagnosis.

Louise says: ‘There are lots of reasons someone might not go to the doctors about their symptoms. Booking an appointment may not seem like a top priority (for example, they could have care commitments that take up their time), or perhaps they might hope that any new spotted symptoms go away on their own.

‘If you’re worried about any changes to your body, I’d always encourage you to speak to a GP as soon as you can. The sooner you do, the sooner they can be investigated – which may improve the chance of successful treatment, or put your mind at ease if it doesn’t turn out to be cancer.’

4. ‘I knew something was wrong’

It’s also worth advocating for yourself if you don’t feel you’ve got to the bottom of what’s going on first time around.

‘I’ve heard patients express regret at not pushing for their symptoms to be investigated,’ says Louise. ‘If something doesn’t feel right, speak to your GP and get a second opinion, if necessary.’

Nobody knows your body better than you, so don’t ignore persistent warnings.

5. ‘I’m worried about how my treatment will change my appearance’

‘Commonly, patients express concerns about the physical changes their treatment may cause,’ says Louise. ‘They may have fears about how they’ll look, and concerns over how their loved ones may view them. In one instance, a patient said their child told them that they “looked like an alien” – but luckily, they saw the funny side!’

Treatments like chemotherapy could cause you to lose your hair, while certain medications may cause puffiness. Additionally, it can be difficult to go through mastectomy or surgery which alters how you look.

Thankfully, there are a wealth of options to help with body image during and after cancer, from prosthetics to talking therapy. Whether you decide to go down the cosmetic route or learn to love your new self, it’s important to remember that you’re so more than your appearance; people love you for what’s inside and want you to get well.

6. ‘I don’t know who to talk to about how I’m feeling’

Cancer can be lonely, as alongside your own worries you may also be internalising those of the people you care about.

‘Some patients may find it difficult to discuss the specifics of cancer with their loved ones,’ says Louise, who highlights the significance of express your feelings.

She continues: ‘When you’re going through a lot physically, taking the time to care for your mental health might seem like an additional responsibility, but it’s just as important during this time.

‘Alongside talking to patients myself, I’ve recommended additional support, including speaking to nurse specialists and taking up offers of free counselling.’

7. ‘I wish I’d spent more time with my children’

‘This is something I’ve heard more commonly with parents of young children with terminal cancer,’ says Louise.

‘Understandably, parents may have concerns that their children will forget them. They may feel upset that they won’t get to see their child do certain things in the future, along with feeling worried about leaving meaningful things behind for them.’

She suggests things like memory boxes, letters, or cards for landmark future events to help patients feel more connected to their children, both now and in the future.