This weekend we interviewed Stewart O’Callaghan, founder of Live Through This – a cancer support and advocacy service for the LGBTIQ+ community.
My name is Stewart O’Callaghan and I have Chronic Myeloid Leukaemia which is abbreviated to CML. I am non-binary, I use they/them and live in London.
How did Live Through This begin?
I was diagnosed three and a half years ago. I had gone through multiple different hospitals, treatment centres and doctors, and along that process had never found an LGBT specific support service. I had been signposted to multiple others that the healthcare providers assumed would align with my identity based on my appearance, but nothing really fit. The only LGBT service that I did find was Walnut, which is an LGBT-specific prostate cancer support group – and they do great work but obviously I don’t fit into that category. I only found them because I was looking for something in person. Because a lot of the forums online that were LGBT specific were dead – there wasn’t any activity. I just wanted to meet people who had a similar experience.
So I went to my local Macmillan centre and I asked them do you have anything? Do you know of anything? And when they didn’t I proposed to them: how about I create something and you guys support me? And I’m so grateful, because not only did the Macmillan staff get involved but so did the cancer staff of the hospital, and we created a working group. We really figured out how this could work and made sure that it was robust and there was a need. We ran focus groups and really hashed out all the details with lots of different oversight to try and set up something that would be purposeful and safe.
So it was born out of necessity then?
Yeah, so the way that I see it personally is that I walk around in the world and now that I have cancer I see cancer images everywhere. Once you’re affected by something you become more attune to the messaging. What I’ve noticed is there are multiple different cancer awareness campaigns but nothing LGBT specific. You never see an LGBT related poster campaign or health message and I find that strange. I also noticed that you have large charities like Macmillan, Maggie’s, Shine and they are considered acceptable to have a wide remit of who attends but in minority community spaces you’re expected to have very niche attendants.
What I wanted to do is to create a looser sense of support where more people could attend so it’s based around sharing lived experiences with each other. The benefit of that is it means all genders can come. All sexualities can come. One of the most healing, restorative friendships I gained out of the group was with a non binary person who was in palliative care and soon to die. Our friendship was so nourishing, but we would’ve never met in any other circumstance; completely different demographics and cancers. So, for me, when I say I get my strength from the community I mean the whole community, not just people that look like me – and that’s what I wanted to create. A space that reflected the whole community that can then signpost and connect with other more specialised care. A space where everyone feels that they are represented and welcome.
How has the pandemic affected Live Through This?
The first thing we noticed was a lot of our plans and projections disappeared. We had an LGBT cancer awareness day planned with over 30 stakeholders. We were going to bring in charities and LGBT services to help people develop their support networks and raise the issue between communities and charities to help create stronger connections. That was supposed to be in April, but we had to cancel that because of Coronavirus. The other thing is that we had different projects in line with NHS funding that had to disappear because it’s no longer priority.
The organisation went into a lockdown a bit earlier than others because of our beneficiaries, because we decided to be proactive with our responsibility. The support had to find a way to go online so we moved it onto zoom, and we’ve managed to retain some people – but we know that a lot of people don’t feel comfortable discussing personal details online. And don’t particularly want to be vulnerable in that space because they’re either not feeling comfortable about it, they’re not tech savvy or it just doesn’t appeal to them. Another thing that’s tricky about running things online is that it has to be safe. We’ve managed to work with Maggie’s to continue to provide a safe service and we have strong policies, meeting rules and password protected rooms.
The other thing that’s also tricky is making people aware that we exist. Previously what we would do is go into cancer centres, meet people personally, tell them about the service, provide them with posters to signpost or we would deliver training to cancer centres to make them more inclusive and aware. Now that we’re unable to go into those spaces, and patients are also unable to go into those spaces it’s hard to access them beyond social media. Social media is a tricky thing to access people through anyway, especially because a large proportion of our beneficiaries, our peer support users, are older. We have had new interest in the time of the pandemic which is good – but we’re definitely seeing it be a younger demographic that is using us at the moment. Those who are older have sort of disappeared for the moment, but we still try in keep in contact to check that they’re okay.
We’re looking forward as well because if this is going to become the new normal we have plans in the works in partnership with Maggie’s to create an online forum so there’s multiple ways to connect online. There will be a permanent space to share posts, have encouragement, find additional video content, but there will also be the option monthly to meet over zoom to have a chat and have that more immediate response if that’s what people want too.
Is it especially difficult given you’re working with a group of high-risk individuals?
Yeah – and I’m also in that risk. Being a person leading the work who is also in the target group – there’s a benefit from it, but it can also be tricky. It’s interesting that in some ways it informs the practice, which is great, and it makes sure that what I’m doing is in line with what should be done. But even then I still defer to my trustees who are of various races, genders and sexualities, and then I also refer to other service users and get their feedback in the wider community. I always check that I’m not speaking from one position. But the other thing that makes it slightly trickier in running an organisation and being in that demographic is that I often have to shield or I have to maintain that distance. It’s a double edged sword in that it can be a benefit to give me a window into the experience of others, because I’m going through it too, but also it can mean going above and beyond is trickier at this point.
What should someone expect when coming to a meeting for the first time?
You need to fill out a little questionnaire first which tells us rough demographics about yourself so that we can check firstly that it’s the right group for you, just in case you don’t have cancer and you have a different thing and we can help signpost you to something more appropriate. After we’ve got those details I send out an email and that gives you the joining instructions and I also check if there’s anything else you want to discuss first, so it gives people an opportunity to introduce themselves to me before they have to introduce themselves to a room. You can then let us know if there’s any accessibility needs or any extra considerations or support you need and if there’s anything I can help signpost you to immediately from the off.
When it comes to the meeting what happens is we all sign in on zoom, and it’s at an evening slot to try and make it more accessible. On the call there’s normally myself and there’s a specialist – a Maggie’s representative – who is trained and aware, alongside whoever else turns up. What happens is there’s usually a small introduction from myself just to kind of check where everybody’s at, check if there’s anything people want to discuss, or anything we don’t want to discuss. Then we sort of let the conversation naturally flow but at the same time I mediate the conversation to make sure it’s safe. The benefit of zoom is that people can choose to not show their face, hide certain details or sign in anonymously. We need your details for safeguarding, but you can sign in anonymously for everyone else. There’s also the option to contact us later for more direct support or a follow up and that can either be done via us or via Maggie’s, we decide who is more appropriate.
Do some people find it scary going to their first meeting?
Definitely – I think it’s really important to remember that it is scary. I think there is this kind of supposition that because it’s online and because it’s easily accessed in regards to signing in that somehow it makes the process of opening up to people easier – and that’s not true. You know, walking into any room where you are asked to authentically be yourself in a vulnerable manner is intimidating. So the important thing to remember in accessing any service, not just ours, is that it’s at your level of comfort and discretion. You only need to share what you feel comfortable sharing, to give as much as you’re willing to give and able to give in that moment. If you just want to come and listen, that’s fine. If you just want to be around other people and say hi, also fine. If you want to just come and tell me about how much you miss your job or how much you don’t want to go back to your job, that’s fine too. It doesn’t have to be specifically LGBT related topics, it’s just a way for us to know that we’re not alone in the system. We’re not forgotten about, and there’s other people out there that have a similar experience to you.
What do LGBTQ communities need to do more of to support those affected by cancer?
So, I think there’s two things off the top of my head. In the community itself; one is to address issues of ableism in general. Make sure that people are being inclusive to people that have health needs or who’re disabled. Make sure that they are making spaces accessible to them. There’s those kind of things like that. Parapride do a lot of really good work around that and we’re in good contact with them. The other thing for the community in general is to manage their own health as well. Attend their screenings, be aware of preventive behaviours, if you’re smoking reduce or quit. Have healthy behaviours so that you’re less inclined to develop cancer. There’s no better time to start looking after your health than today.
The way to help people who are already affected is, if you know somebody in your personal circle is affected by cancer – just ask them. Just ask if they’re okay. I think sometimes a lot of people are scared to ask because they don’t know what to say but if you ask authentically, in my opinion that’s enough because it allows a person to tell you what they need. And I think that in itself opens a door, especially in times like coronavirus where a lot of us have to shield and feel separate from our communities. It means so much when somebody from our community is able to reach out and just check that we’re doing okay. Depending on the levels of your networks and friendships, this can be things like watching movies together online or using Houseparty. For others it can be a simple thing of just a text message to see what’s going on: Do you need anything? Can I drop anything off? For me especially I know that’s been super helpful.
I think it’s just about letting people with cancer know, especially during coronavirus, that the community is still there even if they’re not physically able to access it.
Live Through This, in partnership with Pin Prick, have created Limited Edition Rainbow Cancer Awareness Ribbon Pins. All profits go directly to Live Through This to help them continue their mission of supporting LGBTIQ+ people affected by cancer.