Emma's Last Chance to Beat Cancer
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.)
I’ve been extremely fortunate to have another healthy year in 2018, working pretty much full time, getting on with life and trying to say YES to as much as I can.
I haven’t shared any news since last Christmas because things have remained much the same. The tumours have remained stable, and it’s all down to the immunotherapy that I got at a crucial time, thanks to your help.
The Royal Marsden have spent another year keeping an eye on me and helping many others, providing care, support and hope to cancer patients and families at extremely tough points in their lives. I want to thank them all again for their hard work and ongoing care for us all.
This year, through the amazing Eve Appeal Charity, I was very lucky to meet a team of extremely smart scientists, oncologists and researchers from all over the world, working hard to find out more about how my rare cancer works and how best to tackle it. Had it not been for some of the breakthroughs that this handful of individuals have made in the last few years, I would not have known about or tried my immunotherapy treatment and still be here today. Meeting them was truly like meeting my heroes. Here’s a massive Thank You to them for another year of dedicating their expertise to this rare cancer- without their help there would also be no progress in treating and understanding my disease.
Here’s hoping you had a very merry Christmas or holiday this December and I wish you all a very happy and healthy year ahead. A couple of years ago it seemed almost impossible to think I would be saying; thank you all again for helping me see in 2019.
Emma, Matt and the Houlston family.
And I’ve got it!
Again I’ve got to apologise for not sharing an update before now. Over the past few months, I’ve found it hard to write an update on progress - things have either been slow, or plans seemed to be going a bit sideways. But as the year is almost up, I thought it’s a good time to share some news regardless.
Over the past few months, the picture has remained incredibly positive. Since I last posted news, I’ve continued to feel well. I’m now back at work (almost on a full time basis) and I’m trying my best to live a life full of fun, friends, family and my lovely husband too.
But in recent months my treatment has unfortunately had a bit of a hiccup. After about a year of the infusions, I’ve had to put the immunotherapy on hold for a bit. I’ve been suffering from a few side effects related to the drug that the doctors have got a bit concerned about. I’m very much hoping that these will settle down and in the long-term I will be able to get back on the treatment.
But for now, I’m on a break. This is something that’s hard to live with initially, but I’m beginning to get my head around it.
Immunotherapy is such a new drug, and I’ve discovered it’s tricky to really know what sort of dose is best to give patients. So it seems I’ve reached my limit for the time being and I need a bit of a rest from it. And the doctors expect to see the good effects of the immunotherapy go on working for some time anyway- so I’m trying to take some comfort in that while I get on with life.
The amazing team at The Royal Marsden are still keeping a close eye on me during this stretch and so far the tumours have been behaving themselves and have become small enough that they don’t bother me and I really don’t even know they are there.
I feel incredibly lucky that I’m celebrating another Christmas, in good health, with my family and friends around me.
Still, the words the of the late A.A.Gill ring in my ears regarding immunotherapy. Describing this treatment as having the potential to give:
“More life with your kids, more life with your friends, more life holding hands, more life shared, more life spent on earth - but only if you can pay."
And since he wrote this I’m glad to see that trials are beginning to open up on the NHS for this type of drug to include more people with a wider variety of cancers- so hopefully in the not-too-distant future others in my position won’t need to pay for the drug privately because it will be starting to have a proven track record.
Thankfully because of the kind donations you’ve all made, we’ve been able to afford the treatment so far and should be able to in the future, too. And it has bought me more life. This year alone I’ve seen close friends become parents, heard first words uttered and got to know some of these new, little people. And then there’s been dancing at weddings, wandering along beaches, swimming in the sea (in the UK, in March!), camping in Wales, staring into bonfires, drinking a bit more wine, laying in the sunshine (with a lot of sun cream), celebrating my wedding anniversary and not to mention… another season of Game of Thrones.
And to top it all off- here’s Christmas again.
Having been put through the mill a bit in recent years I have a begun to realise that for all the delight Christmas brings, it can also be an incredibly hard time of year for some people. It can bear a painful reminder that some loved ones are no longer with us. My thoughts are with everyone who finds this season tough. But thank you again for helping to keep my seat filled at our Christmas dinner table this year. I intend to make the absolute most of it.
Merry Christmas everyone and here’s to a happy and healthy 2018!
And a huge thanks to all of the staff at the Marsden who have seen me through the last few months.
Apologies it’s been a while since the last update- it’s mainly because things have been fairly uneventful. But in my book, uneventful is pretty wonderful.
Over the past few months I’ve had small bits of good news that I’ve been unsure about sharing because it wasn’t clear if we were seeing real progress. Cancer treatment is odd and complicated, and just as the dramatic reduction we saw late last year was the result of radiotherapy combined with immunotherapy, I wanted to hold off on sharing any news until I felt more confident that the immunotherapy that you helped fund was actually making a difference on its own.
Now though, I do feel I’ve got a few milestones to share - thank you again for helping me achieve them! I wouldn’t have been able to do it without your help. Large hospital bills have continued to be paid and I’ve still got your funds to see me through the upcoming patch of treatment ahead too- all thanks to you. Myself, my husband, friends, and family couldn’t be more thankful.
Since January, I’ve continued to go into the Royal Marsden every three weeks to have my immunotherapy treatment. Things have been ticking along nicely. I’ve shown slow and steady improvements, and have recently got to the stage where the doctors gave me the thumbs up to finally get away abroad on a deferred honeymoon, while things were looking stable. So - before they changed their minds (and with a little help from our family) - Matt and I got our skates on and got away. As we left London, it dawned on me that we were really going and I found the whole thing to be a bit of a miracle, considering where I had been only a few months ago.
On our return home last week, I went straight to the Royal Marsden for a three month CT scan and thankfully received yet more positive news. The last two CT scans (since my previous update) have shown a continued improvement- the tumours have carried on shrinking and there is no evidence of spread of cancer to anywhere else in my body. The progress is now a lot slower than it was in combination with the radiotherapy (the tumours have shrunk about 2cms in the last 6 months), but it’s the speed of progress I had hoped for- based on the success others have reported with the same treatment and the same type of cancer.
Most importantly of all, I’m feeling well, and finally starting to feel like I’m getting my life back. I’ve been able to get out and start doing some normal things again. And recently, I’ve even been making plans to start going back to work. Something which to me marks such a huge milestone in my progress. I start back next week and cannot wait to slowly welcome even more normality into my life. I’ll obviously continue to return to the Royal Marsden every few weeks for my treatment and other check ups, but one of the wonderful things about this treatment is that it doesn’t take too long to administer. I’ve also been hugely lucky so far to avoid most nasty side-effects - we’re keeping our fingers crossed that this will continue!
So a big thank you again for choosing to support me through this really tough time in my life, and also for helping to make some positive progress in this dark and nasty corner of cancer - there are so few case studies currently out there, and so many of them are bleak and end without hope.
I have met some wonderful people along the way, and my case feels like this could be a bright beginning of a new way of tackling this rare, aggressive form of cancer. The more people like me who continue to do well on this treatment, the better the outlook for the young women of the future who are unlucky enough to also go through it.
I hope in the not-too-distant future I can update you with more good news. I continue to be determined to beat this thing, and with your help I’m really doing my best.
I’d also like to say a huge thank you again to all of the Royal Marsden staff for their ongoing support and hard work- they never cease to amaze me.
Lots of love,
Emma, Matt and the Houlston family.
I thought I’d send you a little update to let you know how the new treatment is going.
Straight after my wedding, back in October, the doctors suggested combining the immunotherapy with a couple of weeks of radiotherapy - and I’m pleased to say that the results were immediately staggering.
At the time I was looking pregnant with large tumours in my abdomen, but after this two week stretch of treatment, things had shrunk right down and I looked much like my old self again. Not only that, but all the side effects that the cancer was causing also began to disappear and I went from feeling like death-warmed-up to almost my old self again. It was as if a magic wand had been waved, it was incredible. A CT scan also confirmed that at this point, the tumours have shrunk by 50% - as far as cancer treatments go that’s an amazing improvement in such a short space of time.
Since the radiotherapy finished up, and I recovered from some of the rather unpleasant side effects that come along with that, I’ve continued on with the infusions of the immunotherapy every few weeks. I generally continue to feel well, and have been lucky to enjoy a very ‘normal’ Christmas- seeing friends and family and eating all sorts of wonderful food and getting out to enjoy life again.
I’m now going to get my head down and get on with the next couple of infusions of treatment as I nervously await another CT scan next month to see if things are still as going in the right direction (with just the immunotherapy treatment tackling things alone now). Wish me luck!
Again, I’d like to thank every single one of you. Things wouldn’t have been the same without your support and messages of encouragement. And I’d also like to say a huge thank you to the wonderful staff at the Royal Marsden hospital who have continued to be so amazing and have got me through it all.
Thanks for giving me Christmas with my family and friends and 2017 to get stuck into now.
Have a very happy new year- let’s hope it’s a good one for us all.
Ok Amanda, maybe you could find someone to donate with you? to make the 5? You could do 2.50 each? Today I'll donate 10 and cover your 3. Positive from a negative. But also maybe Emma take this on board and change the minimum? Hope this is successful for you.
The minimum amount a donor can make to your campaign is $5, €5 or £5 (depending on your campaign's currency). This minimum donation amount is due to the processing fees applied to each donation. For example, GoFundMe deducts 5% on all donations. You need to take this issue up with GoFundMe not Emma xxx lets keep it positive people, so proud of everyone for donating to this cause and raising awareness of this wonderful new treatment xxx
Hi Emma, I'm not sure how to contact you directly so apologies for posting this here. Cancer has, as with so many others, turned my life upside down on too many occasions to count. I've not had the diagnosis myself, but watching your loved ones go through it is terrifying. You're an inspiration and I wish you a successful battle, followed by a long and healthy life. When your battle has been won, and you and your fiancé are ready to walk down the aisle, I'd like to offer my services as a wedding photographer, as a gift to you. No strings attached. If you would like to chat just drop me a message whenever you feel up to it. Sending lots of love to you and your family. Annie x
I think Amanda may have inadvertantly helped with her rather bizarre comment (who on earth would leave such a message for someone who is terminally ill and asking people to help with their last hope?!). I too upped my donation to cover Amanda's shortfall, and reading the comments it seems quite a few of us have! Emma - I wish you all the very best with the treatment. xxx
Emma, Anne & I have known you from birth for the wonderful person you are, and no one can be more deserving of the support you are getting here. As we enter a long, long retirement, we want you at our funerals. Be there (unless you have something better on). To top up our donation, Anne is also organizing a big tea party in support, so I hope we have enough cups! Love & Best wishes to you and Matt. Dave & Anne xxx
Emma our stories our so similar just change a few details and it could have been me. I really hope you get the £ you need and that it works. I also hope they change this stupid system so you no longer have to pay. Also have the most amazing wedding day. I had mine mid treatment and for that day nothing else mattered...it's magical. All my love Katie xxx
My dad died super fast with pancreatic cancer - we had the privilege to be with him when he died - I wish he was still here. Emma I want you to live - Amanda please be quiet about £3 £5 really give it a rest - when you are lying on your bed breathing your last you will realise how you are wasting your time - stop go out breathe the air, eat the apples love Hen x
Amanda Jane Snell How very mean of you. And how mean to also actually comment about your lack of donation here. Don't worry, many others have donated on your behalf. Not for you, but for this very brave woman who should be given every chance of surviving. Wonderful news that the target has been reached and exceeded. Good luck, Emma!