Coronavirus reports – Part 6: “The kids being home all the time has been quite a challenge”

We caught up with people living with cancer across the country, to find out how the coronavirus pandemic has affected them and their families.

Jane: “I was worried I might be deprioritised, but thankfully that’s not happened.”

Jane (right) with her family. Credit: June Snowdon Photography

Jane is being treated for incurable ovarian cancer.

At the beginning of the COVID-19 outbreak, Jane was having chemotherapy every three weeks, which continued despite the pandemic. “I’m glad it carried on. But the communications have not been brilliant – I have had to follow up things myself, so it’s been stressful.”

Jane’s doctors have since altered her treatment, as the chemotherapy wasn’t working as well as they’d hoped. “I was told in person. The doctor was wearing a mask, but I knew it was bad news because otherwise it would have been on the phone.”

Jane’s now on a weekly chemotherapy treatment, which she’s conscious means going into the hospital more. “It does add to my COVID-19 risk, but as the cancer is advanced, the benefits outweigh the risk.”

Having visited the hospital a number of times since the COVID-19 pandemic began, Jane has seen how things have evolved during locked. “It was very quiet at first – there were no masks or plastic guards, but there were very few people in the hospital.”

And while the rules have tightened, the hospital is a lot busier, which Jane says can somehow feel more frightening. “You have to think more about distancing.

“It was easier at first, as everyone was dealing with the uncertainty, and everyone felt connected. Now, people are going back to things and it can feel lonely again.”

Jane’s kids are now back at school, which means the house is quieter. But she’s glad the family is getting back to some sense of normality.

And while her treatment has been unaffected so far, the impact of COVID-19 on cancer services is worrying for Jane. “The delays to screening and with people putting off checks, it’s going to lead to more late diagnosis. And for ovarian cancer, which is often diagnosed late, this is such a concern.”

Clinical trials are also extremely important to Jane. “I’ve already been on one trial and hope to be on another. Trials could be the difference between me having an extra year with my children, so I’m so worried to hear about any disruptions. It’s pretty raw for me.”

Sal: “It is so worrying being ill at this time”

Sal (left) was diagnosed with bile duct cancer in 2018.

“Everything was unsettling. I was able to have the main treatment as planned, but it was so concerning about how and where things happen, and if things went wrong.”

Sal was diagnosed with bile duct cancer in 2018, 5 years after being diagnosed with breast cancer. She’s currently having chemotherapy every other week, which has taken its toll. “It’s difficult as there is no time to recover. I am in for infusions for four hours and then carry a pump home for a further 48 hours, which is extremely uncomfortable.”

Despite her treatment continuing, there have been a lot of disruptions during the pandemic. “There was upheaval in the hospital where I was being treated, and it was hard only having updates on the phone with my oncologist. CT scans were moved to different hospitals with unfamiliar staff and procedures.”

“I’ve had infections and been really unwell. It’s so worrying being ill at this time. Without seeing friends and family and receiving that extra support, it just caused further anxiety.”

Sal has been experiencing a number of other side effects as well, including neuropathy and extreme sensitivity to cold. “Even touching the fridge, I can get a shock and my hands go into spasm.” Sal says she’s been existing hour to hour for the last 10 weeks. “My whole body is exhausted. Some days I can go for a 10 min walk, but others I can’t move for two days.”

And while she’s been prescribed medication for the pain, it’s not been enough. “After several weeks, I managed to get acupuncture as an emergency case. It’s frustrating that reflexology, massage and reiki are all closed, to me this is all critical care for cancer patients and practitioners are just as needed as hospital key workers – but Poundland is open! How can I not get chronic pain relief?”

The uncertainty combined with the side effects of treatment have taken its toll on Sal, who’s been having panic attacks. “I’m feeling better now, by searching and doing alternative therapy online. The kids are ok and my husband has been brilliant – he has been doing everything to hold us all together.”

Ashlea: “The kids being home all the time has been quite a challenge”

Ashlea with her daughters.

Ashlea was diagnosed with triple negative breast cancer in May last year. She initially had a lumpectomy and 11 rounds of chemotherapy but has since had surgery to remove both breasts in February to try and prevent her cancer returning.

Ashlea, a Special Educational Needs teacher at Portland Academy, is still recovering from the impact of her surgery, which she had hoped would be the end of her treatment. But she developed a range of infections, which required further surgery.

“I developed necrosis, which left a hole in my chest that required more treatment in hospital during COVID-19, which was a scary experience. I also have lasting side effects from chemotherapy, which leave me very tired at times, so the kids being home all the time has been quite a challenge.”

Despite her teaching experience, Ashlea says she’s found home schooling a challenge. “You’d think being a teacher would make home schooling easy, but it’s definitely not! We have, however, had an amazing time together, they’ve really missed me this past year when I’ve been in and out of hospital, so this time together has been so precious.”

Ashlea has been getting the kids to do some paper maths and England, but mostly they’ve been enjoying new experiences and learning skills like gardening, cooking and how to operate the washing machine, which Ashlea says has come in handy as she struggles to do everyday things.

“My husband Jamie is a key worker and went back to work a few weeks ago, so the kids have had to help with chores as the movement in my arms is limited. The more they do, the better they’re becoming. My six-year-old can get the worktops sparkling!”

And the tasks have helped her eldest son too. “My eldest son is autistic and has struggled being at home with no routine, but being able to give him daily tasks around the house has really helped.

“We can all play a part, no matter how big or small, to lessen the impact of cancer, so I’m proud of the way my children have embraced the challenge and I hope others will do what they can.”

Katie and Tom, a media volunteer liaison manager at Cancer Research UK

Thanks to Jane, Sal and Ashlea 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.