Being diagnosed with cancer turns people's lives upside down. From anxiety about what the future might hold to the grim day-to-day realities of being ill and going through treatment, it can be a frightening and often isolating diagnosis to live with.
At the very least, though, most of us would probably expect our friends and family to rally around, offering support at such a challenging time. But what if they don't?
In research carried out by War on Cancer, a social networking app for cancer patients, 65% of respondents said that friends or relatives had disappeared or cut contact after their diagnosis. This heartbreaking phenomenon is known as 'cancer ghosting'.
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"I've always loved being surrounded by friends, going out and doing things with everyone. So for that to stop, and your friends to stop even coming to see you, it's just another hit that you take when you're already going through so much," says 27-year-old executive assistant Georgie Swallow, who was diagnosed with stage four Hodgkin's lymphoma in 2018 and has just finished treatment following a relapse.
"I didn't even realize that this was a thing when I got diagnosed, that I was going to lose friends over it. I really needed people around me who were going to batten down the hatches and go through it with me, so it was absolutely awful to feel like a lot of people just deserted me," she adds.
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They didn't want to be emotionally traumatised by the whole process of watching me deteriorate, and some of them actually admitted that – they were scared for me because they didn't know what the outcome was going to be.
Lydia brain, 27
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Lydia Brain was diagnosed with womb cancer in 2016 and had to undergo a full hysterectomy at just 24 years old. Now 27, she works for gynaecological cancer charity The Eve Appeal, and tells me: "A lot of people I know were ghosted. It's interesting; I think it shows how uncomfortable people feel talking about [cancer]."
For Lydia personally, there's one friend whose actions particularly stand out. "She was a very close friend who I went to university with, so we'd been friends for five or six years and I was also working with her at the time. She didn't cut me out or stop talking to me after my diagnosis, but she was very much in the background and never gave any outward show of support," she says.
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"Pretty much straightaway I noticed that she seemed very uncomfortable talking about the situation, so I never felt like she was there for me. That got more and more apparent until we were barely talking, and then I didn't hear from her at all after I had my hysterectomy. She didn't even text me to ask how I was getting on, so it got to the point where she was just gone," Lydia adds.
Why does this happen? Twenty-five-year-old support worker Yamour Yapici, who had non-Hodgkin's lymphoma four years ago, believes it's sometimes a form of self-protection. "Some of my friends just didn't know how to handle it. They felt quite afraid, so they avoided seeing me because I reminded them of death, and they thought I wasn't going to make it," she explains.
"They didn't want to be emotionally traumatised by the whole process of watching me deteriorate, and some of them actually admitted that – they were scared for me because they didn't know what the outcome was going to be. At the time I was confused and didn't understand it, so I cut out a few friends and don't really speak to them anymore, but it's been four years now and I'm trying to understand why people did what they did," she adds.
Beyond the emotional challenges, Georgie felt some of her friends struggled with the practical impact of her cancer on their social lives. "I wasn't able to drive and my energy levels were often low so I couldn't do certain things – but if they were all going to the pub, I'd still want to be invited, I'd just need someone to pick me up. I kind of got forgotten and left behind," she says.
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"I had a few friends who were really amazing and came round to see me, but a lot who didn't. They slowly started not checking in on me and not inviting me out. I think I just got a bit boring – you know, Georgie can't come out and play, Georgie can't go shopping, I'm not going to drive all the way to see Georgie if she's tired."
For 43-year-old nutritional scientist Toral Shah, the presence of social media in our lives doesn't help matters. She was first diagnosed with breast cancer at the age of 29 and had a recurrence in 2018 but says she was much more acutely aware of being ghosted the second time around. "Fourteen years ago, people weren't doing more than a quick call or text anyway, whereas now we're so attached to our phones and sharing everything on social media," she says.
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Some of my friends just didn't know how to handle it. They felt quite afraid, so they avoided seeing me because I reminded them of death, and they thought I wasn't going to make it.
Yamour Yapici, 25
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"People didn't have Facebook [the first time I was diagnosed], so you didn't know whether they even knew, unless they'd spoken to someone else, and you could almost excuse them not getting in touch. Now the classic one is when you know people are looking at your Instagram stories, but they just never message you," Toral explains. "I think because it's so much easier to be in constant contact, you're much more aware when people aren't."
The flipside, for all these women, is a feeling that cancer showed them who their real friends truly are – like the friend who sent Georgie a motivational card every two weeks before chemo, and the friend who moved both Lydia and her cat into her own home for two weeks to take care of them.
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"Some friends have been super solid, being there just to listen to me rather than trying to fix whatever it is, and making the time to hang out and do normal stuff. Those little things are what I really appreciate, really feeling heard," says Toral.
For Lydia, meeting 'cancer friends' has also made the world of difference. "Until I met cancer friends, no one got it or understood, apart from my two closest friends who came to all my appointments with me. With cancer friends you can say absolutely anything and it's immediately accepted and understood and normal," she explains.
It was this kind of connection that inspired Fabian Bolin, who was diagnosed with leukaemia four years ago, when he was 28, to set up War on Cancer. "After my diagnosis, half of my friends just sort of faded away – in a way it became like a natural filtering process," he says.
"I started a blog, which peaked at around 200,000 readers, and for each post that I wrote I received hundreds of emails from people sharing their own experiences with me. That had a profoundly positive impact on my mental health and I thought, What if we can build an app that allows people to share their stories, find social support and cope with their trauma?"
Besides apps like Fabian's, young adults with cancer can also access support through charity Trekstock, which works with cancer patients in their 20s and 30s. "Your friends are great, if they get it right, but there is no substitute for meeting someone who gets it," says Jemima Reynolds, health programmes lead at Trekstock. The charity runs peer support events up and down the country, as well as an online community and Instagram account where patients can connect with each other.
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You not calling can actually compound the grief and loss they are feeling. Just pick up the phone, even if you get it wrong, just have a conversation and do your best. Your friend with cancer is still the same person they were before.
Jemima Reynolds, Trekstock
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As for how to support a friend with cancer, she says: "The most important thing is that you not calling, as a friend, can actually compound the grief and loss they are feeling. Just pick up the phone, even if you get it wrong, just have a conversation and do your best. Your friend with cancer is still the same person they were before. One day they might be up for going for cocktails, and other times they won't – it's really unpredictable and difficult to navigate, but it's just about adapting to a new land."
On a practical level, Jemima adds, offers of help will always be appreciated, whether it's going with them to chemo appointments, dropping off a food parcel or helping out with housework when they're too exhausted to manage.
More fundamentally though, Yamour says, your friend with cancer just wants some sense of normality. "Friendships are so important when you're going through cancer. When I was really unwell and vulnerable, I didn't want to feel that everyone was pitying me. I just wanted to do normal, fun activities with my friends," she says. "It's about showing you care about that person's feelings, without seeming like you feel sorry for them."
War on Cancer is available to download from the App Store and Google Play store.
Find details of all Trekstock's upcoming events on their website, including Lifting The Lid on Cancer and Friendship, where Georgie will be sharing her experiences.
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