Sarcoma UK is Wilkinson Cameras' chosen charity for 2025. Marketing Director Alex Wilkinson shares her personal story and explains why this cause means so much to her - and to the wider Wilkinson Cameras team.

I had the idea to write this article to explain why we chose Sarcoma UK as our annual charity this year, and to take the time to explain my personal journey with sarcoma—something I couldn’t do until recently. I just wasn’t ready. It’s ended up being a much longer read than I intended, but I hope you’ll stick with me. I’ve written it as an interview with myself - Alex Wilkinson, Marketing Director for Wilkinson Cameras

PAST: The Road to Diagnosis

When did you first feel like something wasn’t quite right with your health?

This is the funny thing (although let’s be honest, it isn’t funny at all), my diagnosis was purely by accident. I was referred to Urology for a completely unrelated issue and had an ultrasound as part of that process. I remember the sonographer pausing and saying, "Did you know you have a massive fibroid?" I didn’t. But it explained a lot. The bloating, the heavy periods, the uncomfortable fullness in my abdomen - all things I’d chalked up to other causes. Hearing that it was probably a fibroid made everything make sense. At the time, I was oddly relieved.

Were there any early signs or symptoms that, looking back, you now recognise?

Uterine leiomyosarcoma (uLMS) is an incredibly sneaky cancer. It grows quickly, is difficult to detect, and is often mistaken for something benign - like a fibroid. That’s exactly what happened in my case. I didn’t have any symptoms that seemed unusual for someone with fibroids or common gynaecological issues. But in hindsight, my periods were far from normal. I just didn’t realise that at the time and unfortunately, these kinds of symptoms are often overlooked by women.

What was the process like getting a diagnosis?

Slow. Frustrating. Full of uncertainty. I feel incredibly lucky that I was referred for a private consultation via the NHS, which helped reduce my wait time. I also had the means to self-fund a private MRI scan, which was ultimately the scan that flagged a possible malignancy. That changed everything. Once I was back in the NHS system, delays followed - even though I was on a cancer pathway. Eventually, I was referred to The Christie in Manchester for a hysterectomy. I remember thinking, "This can’t really be cancer, can it?" But hearing the name The Christie, a specialist cancer hospital, made things much scarier.

How were you diagnosed?

One of the most horrifying things about uLMS is that it can’t be definitively diagnosed without major surgery. There’s no reliable scan. No safe biopsy. The only way to know is to remove the tumour (in my case via a hysterectomy) and wait for the histology results. I was 37 at the time. I don’t have children. While they weren’t firmly in my plans, they weren’t ruled out either. Losing that possibility was hard. The surgery was a laparotomy - a vertical abdominal cut, not keyhole surgery - and it was far more physically demanding than I expected. I had about two weeks’ notice. That meant being off work for the busiest two months of the year, working in marketing and ecommerce. I had to document my entire role so the team could take over. It was a lot to process and I felt an enormous amount of guilt leaving them under so much pressure. (I must say though, they did amazingly well in my absence and I am eternally grateful for this!)

How did it feel to hear the word “sarcoma” or “leiomyosarcoma” for the first time?

It was about four weeks after my surgery - ten days before Christmas - when I was told the results. I’d convinced myself it wouldn’t be cancer. I felt like a fraud for even being on a cancer ward. When they told me it was LMS, aggressive, and with a high chance of recurrence, I was devastated.  I wasn't mentally prepared for that outcome. The odds of it being LMS are so slim that I really was clinging onto hope that it wasn't, right up until that appointment. My first thoughts were: Who will look after my cats? What will happen to my partner? My parents? My job? But mostly… I don’t want to die. 

What did you know about sarcoma before your diagnosis?

Very little, honestly. I did know that my colleague and friend Sara had passed away from sarcoma in 2020. That was far from comforting. I thought about her a lot during this time. I still do. I wish I had known more about what she was going through, so I could have supported her better. I now realise how frightened she must have been - especially during the pandemic, isolated in hospital, knowing her cancer was terminal. It breaks my heart.

How did you process the reality of having a rare cancer?

At first, I didn’t. I’m the kind of person who copes by researching - I want to understand everything. But the more I read about LMS, the worse it got. Mortality rates. Recurrence rates. They make for grim reading. So I distracted myself. I cooked Christmas dinner for the whole family just days after getting my diagnosis. I threw myself back into work too soon. I was filming a product review video just eight weeks post-op, my partner was carrying all the kit as I wasn't allowed so soon after surgery. Outwardly I looked fine, but I wasn’t. It took 12 months of psychological therapy to get to the point where I could talk openly, never mind write this.

What was your experience of surgery and recovery - physically and emotionally?

Physically, I underestimated it completely. I’m active and independent, so being temporarily floored was frustrating and weird. Emotionally, it was much worse. One of the hardest things is that LMS patients don’t get to ring the bell. There’s no “all clear.” Just “no evidence of disease… for now.” That’s incredibly difficult to live with.

PRESENT: Life After Diagnosis

What does day-to-day life look like now?

It’s been about 18 months since surgery. Thanks to psychological therapy, I’m in a much better place mentally. I can look ahead and make future plans, which once felt impossible. But I still have blood tests, chest X-rays or CT scans, and appointments every 12 weeks. LMS has a high recurrence rate and loves to spread to the lungs, so I’m monitored closely. I don’t mind needles. I’m a human pincushion these days. But I do have issues with claustrophobia. Scans are hard. I can manage them now, but it takes everything.

What are some things people don’t realise about life after cancer treatment?

For high-grade LMS patients, we live in 12-week increments. Every set of results could change everything. The emotional toll affects your whole support network. My family, my partner, my friends - they all wait with me. Something I didn't know about getting a cancer diagnosis is that you get five years of free NHS prescriptions, which is oddly humorous and like a strange booby prize, because I rarely need them - though I appreciate for a lot of cancer patients on active treatment that this is a lifeline.

How has your mindset shifted since your diagnosis?

I care a lot less about what people think. I don’t waste time or energy on things I can’t control. I don’t need to know what my future looks like. I just want to have one.

Have you met others affected by sarcoma?

Not in person, but I’m part of Leiomyosarcoma Research UK, an online community connected to a charity of the same name. At first, I avoided support groups. I didn’t want to connect with people whose futures were so uncertain. But when I was ready, I found comfort and even optimism. There are people living well beyond their diagnosis. That gave me hope. I see people joining the group in the frame of mind I was in 12 months ago and I hope I can offer them a bit of light at the end of the tunnel.

How do you take care of your mental health?

Counselling has been essential and welcomed. I’d recommend it to anyone. I had to wait a while to get some, but it was specific to the cancer experience. I also try to stay active - being outside and being active is so essential for my sanity. And, maybe most importantly, I talk about it now. That helps more than I ever expected. Even if it makes people uncomfortable. No one knows what to say or how to react when you talk about cancer in a very deadpan or honest way. We need to talk about difficult things more, even if sometimes it's uncomfortable.

FUTURE: Looking Ahead with Hope and Realism

What does the future feel like now?

It feels possible. It felt impossible at first. But it’s also fragile. It still feels like it could be taken away from me at any time. Especially every 12 weeks. Facing your own mortality at 37 changes everything. But now I’m 39 and hopeful that I’ll get to celebrate turning 40. Not just with cake, but with real joy and clarity. I can't promise a big party though... I hate being the centre of the spotlight! (Blogs and YouTube videos are different; they're work!)

How do you balance living with ongoing uncertainty?

It’s hard. I work too much. I always have. But I’m trying to find balance. I’m doing more of what brings me joy. Trips away. Seeing friends. Walks, paddleboarding, cycling. You have to actively choose joy when you can’t control the future.

What are your hopes for yourself and others?

More treatments. Better options. More awareness. More funding. I hope the Rare Cancers Bill becomes law. It could be a lifeline for people like me. Rare cancers are underfunded and under-researched. But they’re still devastating.

What does it mean to make future plans again?

It means everything. I’ve even started thinking about learning French. My dream is to live in the Alps one day. Lakes, mountains, peace. That’s my happy place.

Are there any bucket list items you're prioritising?

Flying. I have a big fear of flying. But after facing cancer, I know I can face anything. I want to travel. I want to say yes to the things that scare me.

How do you feel about AI and its role in cancer research?

I’m optimistic. AI is already making breakthroughs in cancer detection and research. But it’s expensive and it needs brilliant minds behind it. That’s where fundraising still plays a crucial role.

Why This Charity, Why This Campaign?

Sarcoma UK is the only UK charity dedicated to sarcoma. It matters to me personally. It matters to Wilkinson Cameras. Not just because of my diagnosis, but because of our former colleague and friend Sara Penwarden. Sara passed away from sarcoma in 2020. She was loved by so many of us. She was a brilliant mentor to me. Five years on, her legacy lives on in our business. Supporting this charity is our way of honouring her too.

What do you want people to know about rare cancers?

They’re often overlooked. They don’t receive the same attention or funding. But people with rare cancers need support even more because of that. We exist. We matter.

What do you hope the Rare Cancers Bill can achieve?

If passed, it could change the future for people with rare cancers. More funding. More innovation. More hope.

If someone remembers just one thing from this, what should it be?

Don’t take the future for granted. That doesn’t mean you need to live every day to the max. That’s unrealistic and exhausting. But be present. Appreciate your people. Let the little things go. Stop worrying about what strangers think of you.

What would you say to someone who thinks cancer is just one disease?

That’s like saying all humans are the same. They’re not. Every cancer is different. Every journey is different.

Why should someone donate to Sarcoma UK - even just a small amount?

Because 11 of us are putting ourselves through a 10K obstacle course. And running is truly awful! But more seriously, imagine if I was your sister, your daughter, your friend. And imagine if the price of a coffee could help buy her more time. Wouldn’t you do it?

Thank you for reading my story. If you’d like to support our fundraiser, please visit our JustGiving page:

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More information:

Sarcoma UK

Leiomyosarcoma Research UK