Max and his wife
We caught up with people living with cancer across the country, to find out how the coronavirus pandemic has been affecting them and their families.
Benita: “COVID-19 is making me feel helpless and hopeless”
Benita was diagnosed with breast cancer in August 2018, just after her youngest daughter’s birthday.
“Ophelia had just had her second birthday, and we were playing before bedtime and she jumped on me. The pain led me to find a lump and I knew immediately, deep down, that something was wrong,” says Benita.
Having worked for Cancer Research UK for the last 12 years across multiple roles, she knew the importance of getting her lump checked. Soon enough, she was diagnosed with breast cancer and she also tested positive for a BRCA2 gene mutation, which is associated with an increased risk of breast cancer. Though her consultant put forward a treatment plan, she wanted to investigate her options further.
BRCA gene mutations
Breast cancer is a common cancer and 1 in 7 women develop it during their lifetime in the UK. Researchers think that around 5 – 10% of breast cancers are caused by an inherited faulty gene.
BRCA1 (BReast CAncer gene 1) and BRCA2 (BReast CAncer gene 2) genes normally produce proteins that help repair damage to DNA.
However, harmful mutations in either of these genes increases the risk of developing breast, ovarian or prostate cancers. Specialists estimate that around 70% of women with faults in either BRCA gene will develop breast cancer by the age of 80.
Benita chose to have a double mastectomy with the removal of one lymph node at the end of January 2019. The year that followed was filled with further treatment, including additional surgery and radiotherapy. She had been due to have a hysterectomy in February 2020, but the pandemic began and her operation was delayed.
Prior to the pandemic, Benita had been part of 3 clinical trials focused on abnormalities in the ovaries, preventing breast cancer coming back and removing lymph nodes & life post-surgery. But all 3 have been stopped due to the pandemic.
“Those trials had been like a security blanket for me. I’d been through surgery, had chemo, had radiotherapy and wanted to get on with my life,” she says. “I hope that trials and research would hopefully make cancer a thing of history. I’d do anything so that my children don’t have to go through what I went through.”
I remember that I used to park in the car park at the hospital, a busy clinical lab was visible from the car park. When I parked there recently, the lights were off and no one was inside.
Though the pandemic has given her and her family time to bond, she knows that her cancer journey isn’t finished. Benita has been feeling pain in her back and though she was given drugs to manage it, she feels that virtual appointments just aren’t enough and wants more tests.
“After a year of treatment in 2019, the pandemic has been like going through it all again. I was in the severe risk category and focused on staying safe and not going out to the shops. It was a double whammy,” she says.
“To Cancer Research UK supporters, I’d like to say that your support means the world. Because cancer never sleeps. It hasn’t stopped simply because of the pandemic.”
David: “Dad died on Christmas Day and I had to watch his funeral online”
David was diagnosed with stage 4 bowel cancer in November 2020. Having had Crohn’s disease – a condition that causes inflammation inside the bowel and increases someone’s risk of bowel cancer – for 20 years, he started with constant diarrhoea, blood and intense waves of pain in August.
The tests that followed – including a colonoscopy and biopsies – confirmed that the cancer was in the part of the bowel that joins the rectum. David’s cancer had affected the lymph nodes in the surrounding tissue to an extent that surgeons were unable to operate safely operate.
Due to this and his underlying Crohn’s disease, his consultant advised that he have a surgical procedure to divert the bowel through an opening in the abdomen (known as an ileostomy).
While undergoing his ileostomy, his dad was taken into hospital a few floors below him with COVID-19. The next day, his mum was admitted into the bed next to him.
They were moved into adjacent beds, which was great as my Dad had been admitted to a care home in August 2020 and Mum had seen very little of him and was unable to physically touch him.
Despite being only a few floors above them, David wasn’t allowed to see his parents and was soon discharged from hospital. His dad died on Christmas Day and due to shielding measures, David had to watch his funeral online.
After being discharged from hospital, David decided to start a YouTube channel to document and share his journey ‘from Crohn’s to cancer’.
“My vlogs are unscripted, honest and frank. I aim to cover a variety of key topics, including interviews with my family about how they’ve been impacted, stoma care and challenges, chemo and even some baking and cooking to help relax and deflect from the day to day.”
Kirsty: “The year has felt like a bad dream”
In September 2019, Kirsty was diagnosed with stage 2 non-Hodgkin lymphoma after suffering from a cough for a few months. As a livestock manager in Staffordshire, she’d been working all hours with farm animals – her dream job.
One evening in mid-June, she was unable to breathe and was admitted to A&E, where she underwent a series of tests. Given the all-clear, she was told that she had somehow bruised the cartilage in her ribs and was sent home with anti-inflammatory drugs.
“A month later, I had developed a cough. Putting it down to hay fever I ignored it, got on with my life,” she says. “It was only after the insistence of my family and partner that I decided to go to the doctors to get it checked out, knowing it would be nothing.”
They found that a 6cm growth had appeared in one of her lungs. After seeing different specialists in different hospitals and undergoing many tests, they found that the cancer had spread to her entire lung and around her heart.
“I had expected it was cancer, but the shock still hits you. I found myself crying at random times, trying to put a brave face on for my friends and family,” she says. “After being diagnosed, there’s simply too much information to take in. All your friends and family ask about a million questions to help them understand but you can’t process any of it.”
She soon began chemotherapy and completed it at the end of 2019. She had her PET scan in February, which showed a small anomaly that resulted in a surgery to remove part of her lung in March – as COVID-19 response efforts had begun to sweep the UK. After her surgery, she was told to go home and shield, but she felt isolated and unsure.
“They said I then needed to have a further 4 rounds of chemotherapy and a bone marrow transplant,” she says. “However, COVID-19 – as it has done for many people suffering with cancer – delayed my treatment plan. This meant I was waiting, wondering if my tumour was growing again. Every little unusual symptom or side effect from treatment had me worried my cancer was growing.”
She eventually underwent her chemotherapy, with the last round taking place in mid-July. After more uncertainty and delays, Kirsty was able to have her bone marrow transplant in September.
Since being sent home at the start of October, she’s been self-isolating and unable to see her friends or family. Though many people know about the physical side-effects from the cancer and treatment, she thinks that sometimes people forget about the mental health impacts. “You’re not only dealing with nausea, exhaustion, pains throughout your body, loss of appetite and taste. But having to face all this on your own, while waiting to hear that you are in remission, is challenging. It goes beyond having to put on a brave face.”
Over the last few months, she’s been recovering from the effects of her various treatments. In January 2021, she was able to start back at work. She said that “the year has felt like a bad dream and I can hardly believe that I have been through it. At the age of 27, nothing could have prepared me for how much my life would change.”
Max: “I am very relieved but I am not naïve”
Max was diagnosed with chromic myeloid leukaemia when he was 10 and finished his treatment, which included chemotherapy, radiotherapy and a stem cell transplant, in 2005.
15 years later, he was shocked to receive a letter saying that he was deemed “clinically vulnerable” at the start of the pandemic. “It was an odd feeling to get that first letter as so much has changed since then,” he says. “The letter did make everything feel very real – I have been so aware how I might be prone to catching COVID-19 and have been shielding since.”
Now in 2021, his wife – who works as a hospital physio – found out that anyone who lived with her who was over 70 or clinically vulnerable could apply for a vaccine at the hospital. He quickly applied for that and had his appointment on the 21st of January.
“I avoided public transport to get there so it was an expensive taxi, but everything went really well. Everything was well explained by the doctor about the side effects and I had the jab,” he says.
“I am very relieved to have had it but I am not naïve – I know I still have to be careful, but it is good to know that people like me are being offered it. I was told I should be receiving my second jab within 12 weeks. There are so many steps still go on this road but it feels like one step that we have been able to take in the right direction.”
Thanks to Benita, David, Kirsty and Max for sharing their experiences with our Media Volunteer Liaison team.
If you would like to share your story with us, please visit our website. And if you have questions about cancer, you can talk to our nurses Monday to Friday, 9-5pm, on freephone 0808 800 4040.