“There is a lot of misinformation out there. People are scared.” Alfred was diagnosed with prostate cancer in 2012.
We caught up with people living with cancer across the country, to find out how the pandemic was affecting them, their families and their treatment.
Jean: “Never have I been so aware of the teamwork to look after people”
Jean getting ready to go to the hospital.
Jean was originally diagnosed with non-Hodgkin lymphoma in July 2006.
She’s had a number of different treatments since, and has just finished 4 rounds of chemotherapy in Southampton, which she started before the virus arrived in the UK.
Initially, her treatment began as planned, but as the coronavirus pandemic worsened it became clear that adjustments would have to be made. She says that COVID-19 has “taken over oncology” at Southampton General Hospital, where Jean usually has her treatment.
“I had my first round of chemo in the General Hospital, but oncology has moved to the Spire Hospital now – I have my 2nd, 3rd and 4th round there.”
The privately-run Spire Southampton Hospital, opposite the General Hospital, has been repurposed to allow some people to get cancer treatment, which has been a welcome change for Jean.
“When I went for the second round, I realised I had been scared going into the General and it felt safer at the Spire. But the staff have had to get used to the new surroundings.” Jean says she noticed an unease amongst staff, “they’re all amazing but it is unsettling for everyone”.
She had also been due to have a longer treatment of rituximab and bendamustine over 6 months, but this has been changed due to COVID-19.
“As bendamustine is known to attack the immune system, my treatment was changed to one day each week for a month using rituximab and no bendamustine, so that my immune system is as strong as possible.”
Outside treatment, Jean is relying on family to get her through the isolation, which she feels is “akin to having had cancer.”
It’s a worrying time. “When I have cancer treatment, the only places I feel safe are in oncology and at home.
“I feel fortunate to be looked at by my professor at the hospital and my husband at home.”
Alfred: “Those appointments are my lifesaver”
Alfred taking his daily exercise.
“There is a lot of misinformation out there. People are scared.” Alfred was diagnosed with advanced prostate cancer in 2012. He was due to have an appointment at Mount Vernon Hospital in Hillingdon in May, but it was cancelled.
“That’s a chronic pain relief appointment, the one for my bloods has been moved too. I will still go in the day before, but that will be in a different part of the building.” Alfred says he’ll likely get the results of the blood tests over the phone instead.
“Those appointments are my lifesaver. Take that away and I have worries.” Alfred’s also concerned for his partner, who works at a hospital. “She’s not in the ward, but she’s still so close and I worry so much.”
And he has changed his routes for his daily exercise too. “I was getting interrupted by coming across people who were not social distancing and I was in danger of getting into too many arguments – I have found a much quieter place to walk now!”
Cory: “I’m going to miss my next treatment cycle – for me it seemed like the right thing to do”
Cory in his garden.
“I went in a couple of weeks ago for treatment. They had asked me the week before if I still wanted to come in and I said that I was pleased that they asked, but I was happy to.” Cory, who was diagnosed in 2015 with Ewing’s sarcoma – a rare type of cancer that mainly affects children and young people – says that the UK-wide lockdown started just after that call.
“It all kicked off that weekend – there was a weird atmosphere on the ward. It’s a sterile environment anyway, but there was a lot of distancing.”
Since then, Cory’s doctors called him to see how he felt about the next cycle.
“I’m going to miss that – for me, realistically, it seemed the right thing to do – it was my decision and I have to be so conscious of the risk factors.
“If I get COVID19, that could be a real issue for me – that could be it.”
Having been on treatment for a long time, Cory felt ok with taking a break in the cycle. He plans to review the decision again for the next round of treatment. “I’m due to have a scan around then so I should have that.”
Beyond the hospital, Cory says that being in isolation “feels like old news”.
“It’s what my life has been like for years, with all the infection control and washing hands. If anything, it’s a relief that there is no pressure to go out – no one is inviting me to be anywhere, so I don’t have to say no at the moment.”
Nicky: “They said I would see them when I turned up in the car park of the cancer centre”
Nicky picking up her latest prescription.
Nicky was diagnosed with incurable breast cancer in 2018. “I’m on oral chemo at the moment and I have monthly bloods.” Nicky talked to her nurse team when the COVID-19 letters started to come out about her next blood test, which was due to be the following week.
“They said they would probably be doing drive-by bloods by then, as they were not letting anyone into the hospital unless they had to.” Nicky got a call the morning of her blood test and an email with more information about where to do. “They said I would see them when I turned up in the car park of the cancer centre.
“I drove in and two of them were there waving – they were in their apron and gloves and told me not to get out of the car. I wound down my window and put my arm out. It took just minutes.”
The nurses then told her to drive to pharmacy, which was in the same carpark. “I pulled up to a hatch and gave my name and my name and date of birth and I was off in 4 minutes!”
Later that week, Nicky got a call to say her bloods were normal. “I usually go into the clinic but had the appointment on the phone.”
Nicky says the temporary set up worked well for her, but she’s due a scan next month and doesn’t know how it will be affected.
“My biggest anxiety is that, as I’m stage 4, a month can make a big difference – a delay of a month can be the difference between life and death.”
She’s particularly worried about the impact coronavirus is having on clinical trials and research. “It’s a big concern. I live in the hope of new treatment lines being created. If that’s held being held up, it could potentially take years off my life.
“But the way I’ve dealt with having stage 4 cancer is that I try not to think too far ahead, instead focusing on the day in front of me.” For now, Nicky’s on oral chemo and feels ok. “I’m taking things week by week. I will deal with next month’s scans next month”
Nicky says it’s been interesting to see how people have reacted to the coronavirus pandemic. “Everyone else is now worrying about germs and infections and washing their hands – that’s how I’ve been living for a long time.”
Katie
Thanks to Jean, Alfred, Cory and Nicky for sharing their experiences. If you would like to share your story with us, please visit our website.
If you have questions about cancer, you can talk to our nurses Monday to Friday, 9-5pm, on freephone 0808 800 4040.