My name is Emma.
I’m 31 and trying to plan a wedding whilst struggling to beat a very rare and very aggressive cancer. I’ve tried a number of treatments but I’ve run out of options: the only hope I have left is immunotherapy – a treatment that’s seen miraculous results for my cancer, but one that isn’t available on the NHS.
The costs we face for this treatment are terrifying but when the only other option is giving up and dying I’m determined to find a way to keep myself alive. If you’d like to help, you can donate below and I’m so grateful for anything you can give. You can also help make a difference by reading and sharing my story, and helping to raise awareness about the difficulties I’m facing. Thank you so much for your time.
So, back in 2014 I noticed I was getting a bit fat around the middle and felt incredibly tired all the time. Fast approaching my 30th birthday, I assumed this was just the cost of getting older. But by the time my birthday came around my life had been turned upside down.
I was busy with a job I loved, going out with friends and settling down with my lovely boyfriend. Out of nowhere I found myself rapidly admitted into hospital, subject to a series of tests and scans, and surrounded by a lot of very worried-looking doctors. I was rushed into surgery – a 17cm tumour had grown from my ovary, and thankfully the surgeons had been able to remove it. But not long after this came the absolute worst moment of my life.
I was told I didn’t just have ovarian cancer – I had an extremely rare and aggressive strain that came with a “strikingly poor” prognosis. When I Googled the diagnosis (I dare you: Small Cell Carcinoma of The Ovary, Hypercalcemic Type) it said that I’d very likely die within the year.
Those who survived beyond that didn’t fare too much better: it was also highly likely that this cancer would return – out of nowhere – and at alarming speed.
I decided to be an optimist. I would be one of the lucky ones.
My amazing NHS oncology team at The Royal Marsden gave me hope that I might beat this awful disease. After 6 months of tough chemo I felt like crap and had lost all my hair (I called myself Emma the Egg) but came out the other side with a great result: scans showed no evidence of the cancer.
Then came the petrifying reality of the check ups – going back for scans once every 3 months, terrified they’d tell me the cancer had come back. For 17 months it was all good news. My hair grew back (so long Egg), I got fit again (I even did a London to Brighton cycle ride not long after finishing chemo to raise money for The Royal Marsden).
I travelled, I worked, I got engaged to the man I love. I wasn’t going to let the past stop me from having the life that everyone around me was having. I watched as my friends had babies, wondering if maybe - against all odds - we might be able to have one as well. I never took any of it for granted. I was so grateful to have made it.
But out of nowhere I felt ill again. Between the 3-month check ups it had returned, growing very large very quickly – this time in several places. Surgery isn’t an option this time around.
Chemo probably won’t help either – there is a possibility it may have become resistant to it from my previous treatment. I tried a promising new drug trial but the cancer only grew more.
Once again I’m sitting in a hospital bed, hooked up to a drip. I get out some days, but most are spent in here – stuck inside while life outside continues without me. It’s getting harder to be optimistic this time. The dreams that me and my fiancé had are slipping away from us: I don’t think we’ll ever be able to have that baby now. It’s sad, but right now the priority is to concentrate on staying alive.
At the speed this cancer grows, I don’t have long if I don’t get treatment. My last chance of survival is a futuristic-sounding treatment called immunotherapy. This form of treatment is still very new, but seems to be working miracles for some – including a number of girls with the same cancer as me. I’m frequently in touch with a girl in Portugal who, after a couple of years of immunotherapy, has watched her tumours reduce to a point where scans can no longer detect a single trace of the cancer. “Where can I sign up?”
Here comes the catch.
Because I have such a ‘niche’ cancer, this treatment isn’t available to me on the NHS. Despite clear evidence that this treatment might work, the drugs I need are not licensed in the UK for ovarian cancer. Modern research suggests it makes more sense to classify cancers based on the traits of the specific disease, rather than basing it on where in the body the disease originates. Some experts are pushing for change in this regard, but changes like these don’t happen quickly and I simply don’t have time to wait.
If I had skin cancer I’d be getting this treatment for free on the NHS (damn it), but as it isn’t available for my type of cancer I’ve no choice but to pay for the drug.
This treatment costs approximately £114,000 a year. This startling figure is just the cost for the drug and administering it – complications that may cost more are not included. If it wasn’t the only thing that might help me, there’s no way I’d ever consider it.
My parents can help me and they’ve always saved for rainy days, but no one saves for a thunderstorm like this. We were unbelievably lucky to have the funds available to start me off on this treatment straight away. However it’s placing us all under an incredible amount of strain knowing full well how much we need to continue this treatment for as long as may be needed – which may be up to three, maybe four years.
So this is where I am appealing for your help. If we can find enough people who are willing to donate the cost of what they’d spend on a beer or a coffee, we’d have enough to pay for a full course of treatment – the only hope I have of staying alive.
Any and every donation here can make a real difference, helping me get the treatment I need so I can beat this horrible cancer. Even if you can’t afford to spare anything, you can make a big difference just by sharing this page – if enough people read my story perhaps the NHS will consider a new license for this drug, and change the way they currently classify cancers.
With your help to raise awareness, I’d like to think that when people in the future are diagnosed with this cancer, they’ll find that the prognosis that pops up on Google is one that now offers a glimmer of hope.Thank you so much for taking the time to read my story, and offering any help that you can.
Emma & Family
(In the event that we raise excess money, it will be split between The Royal Marsden Cancer Charity, Ovarian cancer research initiatives, and to help others with rare cancer cases that cannot get the treatment they need via the NHS.)