ONLY a few months ago, Joshua Sealy was a happy 20-year-old engineering student with his whole life ahead of him.
So when he started getting shoulder pain, mum Janice thought it couldn’t be anything more than his heavy college bag.
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GPs initially blamed sciatica or a slipped disc and prescribed strong painkillers. But when Joshua struggled to hold his wee, a sign he was warned to look out for, he was scanned.
“We thought they were going to confirm a slipped disc,” says Janice, 63, tells Sun Health.
“But instead, a doctor told us: ‘I’m really sorry. It’s bad news. He’s got cancer.’
“Both of us were completely shocked. We’d walked into hospital believing my son had a back problem, suddenly, at just 20 years old, he had cancer.
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“At first, when I asked how long we might have with him, I was told it could be months or it could be years.”
When treatment failed in the summer, and scans showed Joshua’s cancer had spread, he made Janice promise that she would fight to get him another cancer treatment.
“He told me ‘I don’t want to die yet,’” says Janice. “So, I promised him I would do everything I could.”
When Janice made the promise, she was told Joshua might have around eight months left.
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But last week, she was told she could be looking at just weeks left with her beloved son.
“I can’t begin to describe what hearing those words felt like,” says Janice.
“I would give anything to swap places with him, but I can’t.
“My son isn’t ready t die. He’s coming home for palliative care but I won’t give up, I simply can’t.
“If Joshua still has fight in him, so do I.”
Until his clear cell sarcoma cancer diagnosis – a cancer that affects the soft tissue – Joshua had dreams just like every young person his age.
Joshua, who was diagnosed with autism in primary school and attends Brockenhurst College, Hampshire, says: “I’m just an average guy.
“I’ve got autism and everything, but I really wanted to do my course and I liked it a lot.
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“I wanted to make friends at college and I did. I wanted to have some fun, but now I won’t get the chance, sadly.
“Going back to college isn’t going to happen. That and all my dreams have been crushed. They’ve been shattered and erased.
“I haven’t been able to recover fully emotionally, but I’m trying. I’m trying to push forward. I’m trying my best.”
Joshua’s shoulder pain started in February of this year.
“I assumed he’d hurt himself carrying a really heavy bag to college,” says Janice.
Janice took Joshua to the GP, and tried ibuprofen, which didn’t seem to work. Weeks later, Joshua started getting pain in his back.
“He has a really high pain threshold, so when he was saying it hurt, I knew he was being serious,” says Janice.
“Again, we went to the GP and were told he’d probably pulled something and should take paracetamol and ibuprofen.
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What is clear cell carcinoma?
Clear cell sarcoma (CCS) is a rare type of cancer.
It often starts near tendons, which are the cords that join muscles to bones.
You might notice a lump in places like your arms, legs, feet or ankles.
Sometimes it can appear in other parts of the body too, such as the stomach or intestines.
Symptoms of CCS depend on where the lump is growing in the body and how large it is. People often notice:
- A lump that does not go away
- Pain near the lump
- Losing weight without trying
- Feeling very tired
Source: Sarcoma UK
“But I knew my son, and the fact that he was telling me how much it hurt worried me.”
The pain became so bad that he started missing college, despite being prescribed stronger painkillers.
Janice and Joshua went back to the doctor and this time were told Joshua probably had sciatica and possibly a slipped disc.
“The GP we saw warned me that if Joshua started losing control of his bladder or bowels, we should go straight to A&E because it could mean something was pressing on his nerves,” says Janice.
“A few days later, Joshua told me that sometimes when he needed a wee, it would start coming before he could reach the toilet.
“I called the doctor again and this time we were sent to A&E. That was May 25 – the last time Joshua was at home.”
A biopsy was sent to Royal Marsden, which led to devastating news that Joshua had clear cell sarcoma.
The symptoms of the rare cancer, which tends to occur in people in their twenties and thirties, include a lump, pain near the lump, losing weight and feeling tired.
The cancer starts in the soft tissues around the tendons, muscles and fascia, and a lump may be found at the arms, legs, feet and ankles.
Around 4,300 people are diagnosed with soft tissue sarcoma each year in England.
Janice says: “I’d never even heard of it, but the specialist said it was extremely rare, very aggressive and that Joshua probably hadn’t had it for longer than 12 months.
“I asked the question no mother ever imagines having to ask about her child – whether Joshua could be cured.
“The consultant said no. Our only options were treatments that might slow it down – but either way, Joshua would die.
“I burst into tears – it honestly felt like the world was ending.”
Joshua says hearing that his cancer was terminal left him feeling shattered and broken. But incredibly, his biggest fear isn’t for himself.
“I’m more worried about my mum than me,” he says.
“She cares about me a lot and I care about her a lot. I’m more worried about how she’ll be when I’m not around.”
Janice says: “His autism means it can take him longer to process things.
“Initially, he was almost reassuring the consultant, telling him: ‘It’s fine. Don’t worry’. But I remember thinking, ‘You haven’t understood yet’.”
Joshua says he wants to be at home to die and his big sister Molly, 25, started a GoFundMe page to try and get the garage converted into a bedroom for him.
But now, the family are determined to bring him home to celebrate an early Christmas later this month.
Molly’s fundraiser has reached £3,600 so far, but selfless Joshua has been thinking about his mum having the money.
“I’m really worried about how Mum will be when I’m not around,” says Joshua.
“If I don’t use this money, she could just use it for rainy day fund. I’m trying to keep her safe.”
Janice says Joshua doesn’t eat much and has lost 2st in weight.
“He says it’s as if his body has simply switched off,” she says.
“His muscles have become weak and he is exhausted.”
Janice says her son sleeps a lot now, but even that upsets him because every hour suddenly matters.
“He tells me he’s ‘wasting time’ when he’s asleep,” says Janice.
While her son is facing the impossible, he says cancer has taught him one enormous lesson.
“Time is so much more precious than you think it is,” he says.
“Especially when you’re not able to do much with the time that’s remaining.”
Last month, Joshua asked Janice to make a promise she thought at the time she could keep.
“He said to me, ‘I need you to promise me that you’re going to get me another treatment because I don’t want to die yet’,” she says.
“The consultants have said he can’t have a feeding tube because it won’t agree with him, and he’s to weak currently to be able to access any more treatment that might prolong his life.
“It feels like a vicious circle and one I’m powerless to change.
“Until he tells me he doesn’t want to fight anymore, I’m going to keep fighting beside him.”
Joshua gives advice to others, saying: “Appreciate your parents.
“A lot of the time, unlike me, you’re going to outlive them.
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“Spend as much time with them as you possibly can, even if it’s inconvenient at the time.”
You can donate to Joshua’s GoFundMe here.