Four people on what it's really like living with cancer

In the UK, around 393,000 people are diagnosed with cancer each year and every four minutes, someone dies from the disease. According to the World Health Organization (WHO), cancer also leads to the highest disease burden in the UK and cancer research projects also receive more than £399 million annually.

And yet, despite the fact that most people have experience with cancer – either directly or indirectly – there is still little awareness and discussion about the wider reaching impacts, and how to navigate life with and after the disease.

It isn’t just about the diagnosis or prognosis – or even the treatment itself. There’s also the emotional, social and financial implications to negotiate. And it can take its toll not just on the patient, but also carers and loved ones.

Here, four people tell their stories.

Rosanna Connolly, 31, South London

Rosanna Connolly was just 16 years old when she was first diagnosed with acute myeloid leukemia (AML). Despite complaints of regular UTIs, vomiting and extreme fatigue, she says she was dismissed by her GP several times. After her mother called an ambulance, the cancer was even misdiagnosed as swine flu, owing to the global outbreak at the time.

"They would roll their eyes and insinuate I was attention seeking. They just brushed it off with some antibiotics," she tells Yahoo UK.

When doctors finally ran tests and found the cancer, it had become so bad that Rosanna had developed blood clots in her brain that caused multiple strokes and left her in intensive care, fighting for her life. While she recovered, her vision was impaired as a result and she then had to undergo chemo and radiotherapy to treat the cancer.

Although Rosanna was in remission for three years, the cancer returned when she was 20. "I was having regular check-ups and then, when I was getting more and more fatigued and my bloods were coming back abnormal, the consultant advised I have a lumbar puncture. That’s when they discovered it had come back – I was devastated."

The second time round, Rosanna knew what to expect in terms of treatment, but she no longer qualified for the children’s ward. She had previously been put in touch with the charity Teenage Cancer Trust, who had opened up a centre at the Royal Marsden hospital in Sutton where she began treatment.

"They were so good I ended up working for them for a bit," she explains. "They were absolutely incredible – there was a guy called John who was dedicated to making our treatment and stay as comfortable and good as possible. I wasn’t well enough to use it, but they also set up a games and TV room – it was really well-equipped."

One of the most notable experiences Rosanna had while ill was the makeup and hair tutorials she received from a local organisation, who helped her navigate the realities of losing her hair, camouflaging her ulcerated skin and the swelling caused by steroid injections.

"It isn’t so much now, but my hair was a massive part of my identity, and though I wasn’t able to see much after the strokes impaired my vision, they actually had to cover any mirrors to stop me from seeing my reflection."

She adds: "I also received emotional support in the form of therapy. I wasn’t a huge fan of it when I was younger, but in a way it was good, as the doctors are so focused on giving you treatment and physical care, there’s not always much in the way of supporting mental health."

For Rosanna, the main bit of advice she wishes to impart on others in a similar situation is to not see yourself as a victim and try and avoid using the term "my cancer."

"There was a time, after the first bone marrow transplant failed, that I was waiting to see if I could get funding approved for a second round. It was really scary as my immune system was weakened and I had no control over whether or not I received this life-saving treatment, but I had to just have a positive focus," she explains.

"By referring to the disease as 'it', I also helped separate myself from the cancer. I didn't want it to be a part of my life or my future, and the words I used were really important in how I framed it in my own mind."

Given her own experiences with being misdiagnosed, Rosanna also stresses how important it is to stick to your guns and advocate for yourself in the doctor's office – no matter your age. "Unfortunately, it happens a lot and teenagers and young people, especially, are ignored and overlooked."

As well as running her own communications company, Rosanna also publishes a newsletter to help inspire others going through treatment.

Minreet Kaur, 44, West London

Similarly to Rosanna, Minreet's mother, Pritpal, was misdiagnosed with angina before doctors correctly identified it as blood cancer in 2023. "It was heartbreaking. My whole life turned upside down," she says. "My mum is my best friend and we do everything together – gym, swimming, holidays. She's also a huge support."

Although Pritpal's husband lives with her, he is also elderly and retired, meaning Minreet had to become her mother's sole carer and take on a lot of the financial burden.

"I had to scale back on my work as a journalist – which was a career I had changed to and wanted to pursue – in order to look after her," she explains. "It changed my life as well as hers."

In addition to feeling exhausted and worried about money, Minreet also says that because she doesn't have a support network of her own, she struggles with her mental health.

"I have no partner or kids and that's hard. Friends don't understand as they are not in my situation, and what's really difficult is that no one reaches out to do special things for me as a carer – like take me out for lunch, coffee or doing something that would allow me some time off.

"It is so isolating and lonely at times. I get anxiety, I feel low and I suffer in silence. I just feel so scared of losing my mum and that's really hard," she explains.

Minreet feels that if she had more people to turn to, she wouldn't feel so cut-off. "People who are going through this should find some time for themselves and talk to someone, otherwise it builds up inside and it's not healthy," she says. "As an unpaid carer I feel unseen and unheard; I have no career, no work and am stuck in a rut. Carers like me need a break – whether that's a job, holiday or something to help us."

Jamie Keeble, 33, West Yorkshire

When Jamie was diagnosed with testicular cancer he was 24, and shortly after received emergency surgery.

"I had amazing support from the NHS (I did go private) and ongoing support from charities such as Cahonas, a fantastic organisation dedicated to raising awareness about testicular cancer and a great place to go if you want all the facts," he says. "They’re also there to shout about the benefits of education and self-checks."

Although his family and friends were worried, Jamie says they "rallied and never let it show", but he was aware his father "really suffered and took it quite hard."

After a year, Jamie got the all-clear, but then was concerned about starting a family. "Now my wife and I have had our first child, which is an amazing feeling."

Nine years on from the ordeal, Jamie, who is the co-founder of Heck, is on a mission to encourage others to do routine self-checks and help them get early diagnoses.

"In addition to raising awareness and money for charity, we now host regular workplace health checks at our Bedale headquarters. Health checks can save lives and these on-site sessions are available and free to all our employees – and can help prevent people from developing largely preventable diseases such as heart disease, cancer, Type 2 diabetes and liver disease."

Star Freudenberg, 33, London

Although Star's mother presented symptoms of the disease long before, she only discovered it was metastasised cancer two years later – and only told her daughter with just two weeks left to live.

"Adding to complexity, my mother and I didn't have a great relationship to start with," she shares. "Combined with doing a lot of self-healing and self-development, one of my greatest aspirations was to heal our relationship. Knowing that this opportunity was no longer going to be there made it very difficult for me to accept."

When her mother was receiving care in a hospice, she says the experience "taught me that this role to care for her in her last days was an honour and privilege, too. I learned many powerful and impactful life lessons from this experience."

Still, Star feels that the "healthcare system failed her mother", who passed away aged 59. She then made the transition from chartered accountant to the founder of a wellness clinic.

"My father was a plastic surgeon, so I was raised in hospitals most of my childhood. He passed when I was 17 and after losing a second parent, I felt even more motivated to make the transition.

"It really helped put fuel into my fire to get myself out there quicker and help others so that a loved one of theirs, including themselves, wouldn't have to necessarily go through a similar experience."

For those experiencing cancer, palliative care and bereavement, Star recommends empowering yourself with knowledge to support yourself and others – and to not be afraid to get a second opinion.

She also recommends getting financial affairs in place when you or your loved one is still of sound mind, as this can be complicated to navigate.

Finding support for cancer

Personal

Lisa Allen, head of corporate partnerships, events and PR for the Pink Ribbon Foundation, who provide smaller charities and organisations with the critical funding they need to help at grassroots level, says over the 25 years she's been working in the field, one of the things people say when diagnosed with cancer is that their friendship circles dwindle.

She advises loved ones: "Even if you don't know how to deal with someone else's diagnosis or illness, you can help in other ways. For example, dropping them a text to say you're thinking of them, without any expectation of a reply; reaching out to see if they want to meet up for a coffee; helping them with their food shop, etc."

Once the cancer is over, she says it's also important to help them remember they are people in their own right and reintegrate back into social activities. "They're still the same person and that time, for some, can be especially difficult and lonely."

Lisa also urges both patients and carers to look up what local help is available to them. Things like complimentary treatments, discounts or cafe social days can make all the difference.

Professional

If you or a loved one is struggling with the emotional impact of a cancer diagnosis, the Macmillan Support Line is available 8am-8pm every day on 0808 808 00 00. Anyone affected by cancer can call, including carers.

You can also speak to their support team via email or webchat, or join their online community to chat to others going through the same thing.

For those struggling with their mental health, you can visit the British Association for Counselling and Psychotherapy (BACP) to search their directory of registered specialists. You can also speak to your GP about referring you to your local talking therapies organisation or a bereavement counsellor if you have lost a loved one to cancer.

You may also be eligible for government or charity grants, as well as certain benefits. (Getty Images)

Financial

Macmillan also has a work support team who can advise you on things like your rights when it comes to sick leave, working throughout treatment and sustaining yourself when self-employed. They also provide support for those returning to work.

Additionally, you can speak to the Advisory, Conciliation and Attribution Service (Acas) for free, impartial advice if you feel you are being discriminated against in the workplace because you have cancer – which is a protected characteristic and considered a disability under employment law.

People with cancer may be eligible for a grant from the government or charities, if they need financial help.

Government-issued benefits like the Personal Independence Payment (PIP) or the Disability Living Allowance (DLA) may also be available to you, and for carers, you may be entitled to the Carer's Allowance and if you already receive Universal Credit (UC), you may also be eligible for the carer's element, even if you do not qualify for Carer's Allowance. Visit the Gov.uk website here for more information.

Read more about cancer:

• The little-known cancer that’s linked to the gut – and why it’s doubling in the under-50s (The Telegraph, 7-min read)

• Woman's cancer diagnosis after wrong smear results (BBC, 3-min read)

• Seven ways to move on after getting a cancer all-clear (Yahoo Life, 5-min read)