“There is a fear that people are going to die and not get the treatments they need. People are really worried.” – Clare, diagnosed with endometrial cancer in 2013.
We caught up with people living with cancer across the country, to find out how isolation due to the pandemic has been affecting them and their families.
Amber: “It’s a bit of a kick in the teeth”
“I was planning to return to university in September, I have changed my course to do Drama and English Lit as
it is more line with what I want to do, but I am not sure if that will happen now in September with all that is going on.”
Amber was diagnosed with acute lymphoblastic leukaemia in August 2019. During her intensive phase of her treatment, she was in isolation, and had been due to start her maintenance treatment in March 2020 but it was slightly postponed due to a slow recovery.
After the government announced the COVID-19 shielding measures, Amber was advised to continue isolating until mid-June. Despite isolation, she’s still going to hospital appointments.
“I am coming to the hospital quite a bit at the moment. I had to have some blood transfusions recently and also for these tests too. I am collected in a car to take me to and from the hospital. We are given masks to wear, so they are trying to take precautions to reduce the risk.”
She feels as though her experience last year has prepared her for this phase of isolation and is taking time to bounce back from the weight gained during her treatment. Aside from using a FitBit to track her exercise and taking part in online fitness classes, she also understands the importance of mental health.
“After nine months of not being able to do much, it is a bit of a kick in the teeth to have to now self-isolate for another 12 weeks. But in some ways, I guess I am more equipped to deal with this than most people. I think it is really important to look after your mental health during this time. I like to do creative writing and doodling to keep me occupied.”
Thea: “We’re being asked to protect our loved ones”
“I’ve experienced isolation before. But it was very, very different to this. It was very clinical, very scary, and there were no luxuries. I was in a room that was about three metres by three metres. The day I was ‘checked’ into that room, I didn’t know whether I was going to come out of that room. I didn’t know if I would live or die”
Living in Shropshire, Thea was diagnosed with a rare subtype of acute myeloid leukaemia in December 2014. During her treatment, she found herself having to isolate in cramped conditions attached to machines giving her life saving drugs and chemotherapy so – to her – this period of isolation is far better.
“For me, it’s five star, I have the freedom to leave that three metre by three metre room, and take my hours exercise. I have the freedom to make a cup of tea when I want a cup of tea. I have the freedom to make choices.”
Being so close to open green spaces, she’s able to regularly take daily runs with her dog and keeps in touch with friends online, things she was unable to do during her previous isolation. From her perspective, she’s helping her community.
“We’re doing it because we’re protecting our villages, our towns, our counties, our country, our nation. This is a global effort. This isn’t just one person doing something. This is the whole world. Soon we will all be able to live our ‘new normal’ lives again.”
Dylan and Siobhan: “We’re ahead when it comes to isolation”
“The last three and a half years have put us ahead when it comes to isolation. We are used not to having choices and freedom.”
In December 2016, Siobhan’s son Dylan was diagnosed with a type of non-Hodgkin lymphoma known as B-cell
Lymphoblastic lymphoma. Although Dylan’s treatment finished in March, Siobhan says it’s still a stressful time. Dylan’s treatment has left him with no immune system and Siobhan is constantly looking out for any sign of relapse. She’s aware that any exposure to the virus, be it in a public space or at a hospital, could be life-threatening.
“Dylan has been out of the house four times over the whole time, and always just to walk around the block – we are usually back home inside in about seven minutes!”
Despite Dylan’s inability to get out, Siobhan makes use of her daily exercise time to clear her head. She maintains that the biggest difference between this and Dylan’s last experience of isolation is what’s happening in the outside world.
“I am watching people dealing with this current situation and have been fascinated and flabbergasted by people who have not understood the seriousness of it. The lockdown is only going to be temporary for most. But you can’t overstate how important it is to help people like Dylan to get this under control.”
Clare: “Mum has struggled the most”
Clare was diagnosed with endometrial cancer in 2013 and has gone through radiotherapy, chemotherapy and brachytherapy – a form of internal radiation. Even before the government officially announced the lockdown, her doctor phoned her to tell her she needed to shield.
“It’s the 10th week for us now.”
Clare’s friends have been dropping things off at her house and, aside from sneaking out in the early hours of the morning one day to give them Easter treats, she’s been staying at home.
However, it’s not just Clare. Both her mum and her dad, who was given the all clear in 2013 from his own cancer treatment, are having to shield. Clare says that her mum has struggled the most with this experience as “she was the most independent of us”.
Clare’s been spending some of her time at home helping others, by providing online support for people in the cancer community. “There is a fear that people are going to die and not get the treatments they need. People are really worried.”
Thanks to Amber, Thea, Dylan, Siobhan and Clare for sharing their experiences. If you would like to share your story with us, please visit our website. And you can tell us how COVID-19 is impacting your life with cancer through our survey.
If you have questions about cancer, you can talk to our nurses Monday to Friday, 9-5pm, on freephone 0808 800 4040.