As a queer person with cancer, I felt forgotten by doctors – here's why
When the doctor told me I had chronic myeloid leukaemia (CML) – and it was incurable – I went into a state of shock.
I was just 29 years old. It didn’t make sense, I was young and healthy. How was it that I had cancer?
The diagnosis turned my whole life upside down. I went from being independent, enjoying my job, and travelling, to a life of regular specialist appointments and a complete change in career – all driven by my experience as a queer cancer patient.
My journey with cancer began in 2016.
At the time, I had just moved to Berlin to continue my career as a tattooer. I didn’t really know anyone, but was keen for a new city and challenge.
Around December, I was struck down with food poisoning but after a week, the symptoms still hadn’t resolved. I decided to visit my GP.
He took some blood work and was shocked by the amount of white blood cells. He sent me directly to the emergency room at the nearest hospital. When I was there, we figured out that I’d lost about 10 kilos in weight too. Later, tests also showed that I had an enlarged spleen.
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After a month of different tests, I was finally diagnosed with CML, which is so rare that it makes up less than 1% of all new cancer cases in the UK and is most commonly found in people aged 60 to 65. I felt blind-sided by it all.
Before all of this, I felt relatively healthy. In an odd turn of events, that food poisoning probably saved my life.
I remained in Germany for another six months, but was self-employed, paying private healthcare fees, and was struggling to navigate the healthcare system with my poor level of German.
Although the medical care was great, I was missing the chance to find support with other patients – particularly other people who might be queer and living with or beyond cancer. It was important for me to speak to people from my community, so that I felt less alone in my experience.
Ultimately, I felt returning to the UK would give me the chance to speak to specialists in my own language and might help me access the support I needed. I moved to Brighton because I thought I would find LGBTQ+ specific support there and people who’d understand my situation.
To my surprise, I didn’t find anything suitable, and not for a lack of trying. I had looked online, spoken to cancer clinics and checked centres, but everything was very gendered and restricted.
For example, when I wanted to join an art group, I was told that it was for older women and that I should go and play sports with young men.
On top of that, whenever I had questions about my experience as a queer person with cancer – like how treatment might impact the type of sex I have – there was no information to support me and there was no representation of my community in the spaces I was in.
Being able to be 100% yourself when accessing support is important. A lot of patients – myself included – sometimes ‘go back into the closet’ for their cancer care.
This means you might not be bringing your partners or chosen family to appointments. I have also spoken to many people who fear that coming out might actually make their care worse.
What many don’t understand is that our community has a culture of our own. We have our own nuances, language, shared experiences, and references. The NHS’ goal of ‘personalised care’ should embrace these factors so that we can be our full selves when going through a difficult experience like cancer.
Because my cancer is so rare, I had to travel regularly to London for appointments with my consultant. It has also been difficult to treat and in the six years since I have been diagnosed, I have been on five different attempts at medication, been offered a clinical trial and considered for a bone marrow transplant.
After a year in Brighton, I moved to London to be closer to my consultant because the frequent trains for appointments were becoming tiresome and expensive. At this point, my mental health was in a bad place as I was still trying to come to terms with my diagnosis.
The mobility issues and fatigue from my treatment eventually made me give up my career as a tattooer. Unable to work and struggling with my legs, I was placed in a homelessness hostel provided by the local council.
I would reflect on my life at that point and its stark contrast to when I was happy and healthy in Berlin. I think, for a while, I was frustrated and angry, and was trying to convince myself that I could get back to that point. But I soon realised that the only way to improve my situation was to look forward and build a life around my ‘new normal’.
I decided to revisit my goal to speak to other LGBTQ+ people with cancer. I took this issue to Lindsay Farthing – my hospital’s cancer patient experience manager – who understood and offered to help. With her support, I was able to launch our first LGBTQ+ peer support session for people affected by cancer.
It was liberating to meet other people from my community, from a variety of backgrounds, genders, ages, and cancers, but all there to share their experiences together. For the first time since my diagnosis, I didn’t feel so alone.
What started as a coffee morning quickly snowballed into something that needed more stability and structure so that we could begin to make a real difference.
This is where Live Through This – an LGBTQ+ specialist cancer charity for the UK – was conceived. Instead of just supporting people with difficult experiences, I set out to address the cause of the issues. Through working with healthcare professionals, organisations and other charities, I had a vision for a sector that was more inclusive of LGBTQ+ patients from screening through to living with and beyond cancer.
It’s been cathartic being able to turn my unpleasant experience into a force for good for others. As much as this has been my story, there are countless out there of other people just like me, looking to make a difference.
Wherever I can, I try to open the door for them like it was opened for me.
A great supporter of our work has been the NHS Cancer Alliances around the country, which have helped us to launch campaigns that speak directly to our community.
Two of these are BestForMyChest.com and RemoveTheDoubt.co.uk which aim to improve screening uptake for LGBTQ+ people so that they can receive early diagnoses and have better outcomes.
When I see the campaigns we, as a charity, are able to produce with our colleagues and community, it helps me to realise that things are changing.
True progress is teamwork and it makes me proud that Live Through This can be part of that push forward.
You can find out more about Live Through This here.
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