‘At 13 years old he told me he was my lobster’: Heartbreaking words of bride-to-be diagnosed cancer just months after getting back together with her childhood sweetheart
Smiling brightly in photographs, Emmy Collett and Jake Coates look like any other young, attractive couple.
But the pictures hide a devastating truth.
At just 30 years old, Emmy has been diagnosed with a rare form of cancer and may not live much longer than her upcoming wedding.
The couple – childhood sweethearts who drifted apart for university – were overjoyed when they got back together last year, despite Jake working in Sydney and Emmy in London.
They immediately began planning a life together – looking at houses in the captial.
But within six months of them getting back together, the couple received devastating news.
Emmy, who had been plagued with symptoms such as diarrhoea, tiredness and enlarged lymph nodes, was diagnosed with a rare type of thyroid cancer.
Emmy Collett and Jake Coates look like any other young, attractive couple but their smiles mask a tragic reality – that she has terminal cancer which has spread to her spine, lungs, liver and bone
Immediately Jake flew back to the UK to be by her side – and proposed just weeks later.
But their joy was short lived as there was worse news to come.
Just as the pair were due to go on holiday, Emmy was told cancer had already spread to her spine, lungs, liver and bones.
The young primary school teacher, from Luckington, Wiltshire, was told she was riddled with the disease and that she was unlikely to be alive in five years.
Three months later, despite the bleak prognosis, the pair remain unwavering in their optimism and are determined not to let the disease affect their life.
They are still resolutely planning their wedding and honeymoon, and have moved into a house together in Luckington where they hope to find a job they can do together so they aren’t apart from each other in the day.
Now, they also want to raise awareness to this extraordinary rare but deadly condition.
Seeking to fundraise for the Royal Marsden Hospital in London where Emmy is being treated – they plan to cycle 2,000km from London to Copenhagen on a tandem bike.
Here, speaking exclusively to MailOnline, Emmy shares her heartbreaking story…
AT 13 HE TOLD ME I WAS HIS LOBSTER
My ‘school girl crush’ on Jake started almost 20 years ago when we were just 11 years old.
We quickly became ‘childhood sweethearts’ and at 13 he told me that I was ‘his lobster’.
When we were 16 we finally sought the courage to fully admit our feelings for each other and we dated for three years.
Although at university we went our separate ways, we remained close, but it took until October last year, after 10 long years, to rekindle our romance.
Emmy and Jake were childhood sweethearts when at the age of 13 he told Emmy she was his ‘lobster’. The couple, pictured here as teenagers, dated for three years until briefly going their separate ways at university
We had been messaging and that led to a Facetime conversation – and on that we hit it off and realised we still liked each other.
It sounds cheesy but we both knew it was serious.
He was living in Australia working as a doctor at the time and I was living in London working as a primary school teacher.
We negotiated the time difference and Facetimed daily and travelled the short (!!!) distance back and forth.
By the new year we were planning a life together back in the UK; a life we had always dreamed of together was finally coming true.
Unbeknownst to me, Jake had planned to propose to me on a holiday to the Philippines in March.
However it was the day we were due to travel that I received the heartbreaking news that the thyroid cancer had spread and I was advised not to fly.
Jake promptly proposed the next day, in bed with a cup of tea…it was perfect.
Given the circumstances and a new outlook on life we thought ‘why wait’ and I will be walking down the aisle to meet him on September 3rd 2016.
DOCTORS MISDIAGNOSED MY CANCER AS IRRITABLE BOWEL SYNDROME
I have always thought of myself as being an active, fit and healthy person.
I enjoy various sports, going to the gym and have run a couple of marathons in the last three years.
However about 18 months ago I began to experience symptoms which affected me whilst exercising.
WHAT IS MEDULLARY THYROID CANCER?
Medullary thyroid cancer comes from the C-cells of the thyroid.
The thyroid gland is located inside the front of the lower neck and releases hormones regulating growth and development.
Medullary thyroid cancer is a rare form of the disease; between 3 to 12 per cent of thyroid cancers diagnosed n the UK are this type.
The C-cells make a hormone called calcitonin which has a weak effect on bone growth and blood calcium levels.
Medullary thyroid cancer is normally diagnosed by testing levels of calcitonin in blood.
Symptoms include:
- A lump that can be felt through the skin
- Changes to the voice, including increasing hoarseness
- Difficulty swallowing
- Pain in your neck and throat
- Swollen lymph nodes in the neck
The best chance of curing a patient is completely removing the cancer with surgery.
Source: Columbia University Department of Surgery, Mayo Clinic and Cancer Research UK
I felt tired all of the time, had irregular bowel habits which were often painful, and frequently felt quite severe, unexplained muscle aches and pains in my tummy and back.
There was often blood on the toilet paper and it felt like I had glass in my bottom.
Despite being someone who avoids going to the GP, I visited the doctors several times only to be told I probably had IBS, norovirus or perhaps ‘stress’.
I knew it was neither of those things and I certainly never felt stressed.
While competing in last year’s London marathon, training was very difficult due to the pains being more severe and my symptoms deteriorating.
By October 2015 I went to AE again because I had the most violent period. I’ve never seen anything like it.
One week I would have diarrhoea, the next constipation, and I’d have to duck out of lessons when I was teaching.
A couple of times I had accidents and so I went to the doctor and was very passionate and emotional.
I cried and said ‘I’m 30 years old, I’m not a toddler, this isn’t normal.’ I was so tired by this point because I was getting up in the night to go to the loo.
But my case was still not taken particularly seriously by the GP, who said my blood tests were normal and suggested that I come back after Christmas if the symptoms persisted.
I saw another GP who seemed concerned at my medical history, and thought I might have endometriosis, but an ultrasound scan of my abdomen was normal.
I felt totally deflated, like a hypochondriac and I must be imagining it all.
FINDING OUT I HAD CANCER WAS A RELIEF
I didn’t dare go back to the GP for another few months, I felt humiliated because last time I’d been crying.
Jake came to visit in February and noticed that my lymph nodes were very enlarged (I had assumed these were just muscle knots) and he forced me to go back to the GP.
The GP rushed me into AE immediately, where I was referred for an urgent neck biopsy and was given the initial diagnosis of medullary thyroid cancer.
On 22nd March I was officially diagnosed at St. George’s Hospital via a neck biopsy.
It has since been revealed that I have probably had the cancer for potentially two years.
After months of excruciating symptoms being mistaken for IBS, Emmy said it was almost a relief to be diagnosed with cancer after she and Jake suspected it
‘I LOVE EMMY SO MUCH I JUST WISH I COULD TAKE THE CANCER AWAY’
Within six months of getting back together with his childhood sweetheart, Jake Coates, 31, was told she had incurable cancer.
Here, he describes how his bride-to-be is always smiling despite not knowing how long she has left to live..
I’m a doctor and when you’re in medical school they teach you that hard, rubbery lymph nodes is a sign of cancer.
When I felt those knots in Emmy’s neck, my heart sank.
The bottom fell out of my stomach. I couldn’t work it out because at that point the thyroid tests had come back normal.
So I didn’t know where it had spread from.
She had been referred for a biopsy I was happy. I didn’t know whether to come back from Australia then.
The next morning at 5am I flew back.
A week later she developed chest pains.
I had a dark feeling it had spread already but I didn’t want to panic.
It could be nothing, I thought.
I thought ‘maybe its better to go away and enjoy a holiday’. I also thought it might be better for her if she didn’t realise how serious it was.
But I knew I couldn’t get on a plane if she had a clot, so I made Emmy go to the hospital.
Since then, we’ve been hit with bad news every day.
We’ve adopted the ‘why wait’ attitude. I couldn’t go to the Philipines so I brought the ring in bed with me with a cup of tea.
I can’t express how well Emmy’s taken the news, she has taken every bit of information so well.
She’s so brave, she lives every day with these symptoms and she never gets upset.
She’s always smiling, it’s contagious.
She only gets upset if she thinks shes getting other people upset.
I had to fly back to Sydney recently to pack up my stuff and bring it home.
On the plane I thought ‘While we’re both happy and Emmy is healthy there’s no point being sad – otherwise we’d be sad all the time.
Our humour has become dark – but that’s our way of remaining positive.
I just love Emmy so much and I wish more than anything I could take the cancer away.
Although it sounds absurd, it was almost a relief receiving the diagnosis.
By the time they told me I’d been mentally prepared because Jake thought it might be cancer.
I was quite chilled about it, I thought ‘I’m still going on holiday – I can just have the cancer cut out.’
Jake immediately flew back from Australia to be by my side and I quite simply don’t know what I would have done without him from this point.
I felt I could fight and treat the illness. The worst feeling was knowing something was wrong but not being able to do anything about it.
On 22nd March I was diagnosed with medullary thyroid cancer at St George’s Hospital via a neck biopsy.
Jake immediately flew back from Australia to be by my side and I quite simply don’t know what I would have done without him from this point.
MY BODY WAS RIDDLED WITH THE DISEASE
Despite the diagnosis, I remained positive, unaware the cancer had spread and was determined to go on holiday to the Philippines with my lobster.
On 31st March, the day we were due to fly, I developed severe chest pain in the night.
I’d had chest pain before so I wanted to get on the plane, but Jake insisted we went to the hospital.
They did an ECG and an X-ray – but Jake said we wouldn’t leave until they did a CT scan.
We were then left for hours in a room and nobody told us what was going on.
We said ‘We’re leaving – we’re going on holiday’ because nobody gave us any information.
That was when they got an oncologist to come downstairs and they sat us in a room and told me the cancer had already spread into my spine, lungs, liver and bones – it was incurable.
The chest pain was due to a fractured rib caused by the cancer. It was so bad they advised me not to fly.
We rang my mum, my dad and my sister Sophie straight away. They were all really upset.
That was the hardest, it was really tough.
We couldn’t go to the Philippines so we went to Salcombe to chill and relax and try not to think about it for a few days.
But the hospital didn’t call us with more information so we spent a lot of time trying to get hold of the right people.
BEGINNING TREATMENT
After an agonising wait, we were invited to attend a multi-disciplinary team meeting at St George’s Hospital.
Here it was explained to us that my long-standing bowel problems were due to the extremely high level of the hormone, calcitonin, secreted from the cancer cells.
Jake intended to propose to Emmy while on holiday in the Philippines but the day they were due to fly, she was given the devastating diagnosis. Jake proposed a day later and the couple are now planning their wedding
An average person has a calcitonin level of less than 10, whereas mine at this point was almost at 12,000.
I was needing to empty my bowel every 15 minutes day and night which was having a severe impact on my quality of life.
I felt extremely fatigued, had a fissured and blistered anus, was losing weight and my periods were erractic.
After this meeting my case was transferred to the Royal Marsden Hospital.
BLEAK PROGNOSIS
My case is particularly rare, with only 300 cases in the UK over the last 12 years and I am one of the youngest ever reported.
They have therefore taken my DNA to continue to investigate in the labs any future treatments that could possibly become available, I even have my very own little lab mouse.
There is only currently one form of treatment for this type of cancer; a daily oral chemotherapy drug called Vandetanib which did not even exist five years ago, and although this drug cannot cure the disease there is a good chance that it may slow it down.
Although I will be on this medication life long, my prognosis is still rather dire.
I have stage 4 disease meaning I have a 20 per cent chance of living five years.
However I remain optimistic, that with all of the research being undertaken by the Royal Marsden, that there is still lots of hope for new drugs and treatment in the future.
People ask me how I cope with the emotional side of having cancer.
And maybe I’m naive or burying my head in the sand, but I’m happy and not thinking about it.
I’m with Jake, I feel grateful we’re back together. There’s nothing we can do about the cancer so we might as well enjoy our time together.
The only thing that makes me upset is how much its having an impact on people I love. They’re so sad, I feel guilty about that.
I HAD TO GIVE UP MY DREAM OF HAVING CHILDREN
Soon after being diagnosed, I was told it is not possible for me to ever carry a baby – my body couldn’t nourish a child.
This news for me was almost more devastating than the actual diagnosis as being a mummy is all I have ever wanted.
I love children; I’m a primary school teacher and I used to do child protection social work, so I took the news very hard.
We delayed beginning chemotherapy so I could have fertility treatment; my eggs were harvested; Jake’s little swimmers were extracted.
Fortunately, we were able to freeze nine embryos which potentially could be used with a surrogate in the future.
Now, they’ve started me on a chemotherapy drug and the hope is that I will become stable enough that maybe I could raise a child with a surrogate.
The longest living patient has been on it for three years. I started it four days ago, with antibiotics because it makes my skin explode.
YOU CAN STILL HAVE CANCER AND LIVE AN EXCITING LIFE
I’m so passionate about raising awareness now is because of all of the trials and tribulations I encountered prior to being given the diagnosis.
I find it quite scary how long I had lived with it completely unaware and being made to feel like I was going totally bonkers.
If only I could have caught it earlier, things could be very different now.
The couple are riding 1,200 miles from London to Copenhagen to raise money for The Royal Marsden who are treating Emmy and to raise awareness of her cancer symptoms
I’m raising money for The Royal Marsden because they’ve been so brilliant. The nurse Tara, calls me every day.
And I want to raise awareness of the symptoms because if my cancer had been detected earlier I could have been in a very different place.
So we’re doing the bike ride – 1,200 miles from London to Copenhagen – via Amsterdam and Brussels.
I think it’ll be good for me to do it because it will keep me active and that will help my immune system.
I want to show people you can have cancer and still be active and live an exciting life.
And Jake is super fit – he’s run ultra marathons – and he’s at the front. So if I get tired, he’ll just have to peddle harder.
I’M HAPPIER THAN EVER BECAUSE I’M SURROUNDED BY LOVE
Although all of this news has been a shock and challenging at times, it has also made me realise how important and precious every day is and to enjoy and treasure every moment.
I want to say a ‘mahoosive’ thank you to everyone for such tremendous support and kindness.
Believe it or not I am happier than ever. Love truly is the best drug and I have been totally smothered in it.
‘Believe it or not I am happier than ever. Love truly is the best drug and I have been totally smothered in it’
I told my friends, I don’t want to be seen as a sick person and I don’t want a sick person’s hen party.
We’re planning the wedding now and that gives my family something to focus on. People talk about how stressful weddings are but t’s all been quite free of stress.
The first dress I found was the one I wanted, we’re having it at my mum and dad’s house, Jake’s brother has organised a band. Everyone’s doing so much for us.
Now Jake’s given up medicine and we’ve moved into a house together we’re going to think of a job we can both do.
The idea of going to work separately and being apart all day is horrible to us, so we want to find something we can do together, something that we both love and makes us happy.
But first – we’re planning our honeymoon. In my head were going to the Phillipines because we never got to go there.
It is true that you never know what is around the corner. I feel so positive and so blessed.
I have never had such a boost to live every day to the full – to smile, to love and to be kind.
I’m genuinely so happy Jake and I are back together – I forget I have cancer.
For more information, visit Emmy and Jake’s website: http://ejtandemonium.com/