Swansea man Jak Howell first noticed he had an itchy spot on his lower back about a year ago - but he didn't think much of it as it simply felt like an insect bite. Sadly, he found out a few weeks later that it was melanoma.
"On my lower back, I had a spot and it started getting really itchy!" he said "I thought it was just a bite, so I ignored it. Then I was in the shower and I scratched it and it bled, it was bleeding quite a bit. I asked my mum what she thought about it and she said 'that's not right' and said I should go to the GP. I was in such a state of denial, but I emailed photos to the GP - the appointments were by email during the pandemic - and they told me to go straight to hospital."
At Singleton Hospital in Swansea, doctors made a 2cm incision on Jak's back and sent it off to be assessed - and later phoned him to say they found a melanoma. He was just 21 years old when he received his diagnosis. "It's been an absolute whirlwind," he said. "I've been back and forth to the doctors."
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Since then, Jak has had several rounds of immunotherapy as well as major surgery on his back. He's also heard from doctors that his cancer has spread to lymphnodes above his groin, so has to undergo further gruelling treatment over the next six months.
But Jak, now 22, is facing his condition head-on. "I'm half-way through the year of treatment, it's not been great but I'm always trying to stay positive," he said. "I start a new treatment on Monday.
"Typically, people find out they have melanoma when they're at stages one or two, but I was diagnosed at stage three advanced, now I'm borderline stage 3/4. But I'm staying positive about it, I have to!"
Jak, from Sketty, says he's had amazing support from his mum, dad, friends and colleagues, as well as from cancer support charities Young Lives vs Cancer and the Teenage Cancer Trust. "A year ago, I was thrown straight in the deep-end. I was having to go to appointments by myself as pandemic rules meant you couldn't take anyone with you. It was really hard, there was so much information [I couldn't take it all in]," he said. "But Young Lives vs Cancer and the Teenage Cancer Trust were amazing. They've given me crazy amounts of support. They've text and called me all the way through [my treatment]."
Last year, Young Lives vs Cancer and the Teenager Cancer Trust came together to launch the #Hand2Hold campaign to raise awareness of the experiences of 16 to 25-year-olds who were receiving news that they had cancer, attending appointments or facing treatment for cancer by themselves.
Reflecting on the campaign, which Jak praised to WalesOnline, Jak said: "I think getting that diagnosis was a lot harder over the phone because it didn’t feel like real life. The first phone call I had, I was at work. I remember going outside on my phone and it just all hit me at once. I was nervous and I was shaking, I remember going red in the face and tears and I thought ‘calm yourself down, go back into work’ and I think now looking back it was a really silly thing to do.
"I had to go in for surgery on my own which was just horrendous, I was so frightened. My mum was worrying like mad and she was sat outside in the car – it was really really cold and she was sat in the car and she didn’t want to keep the car on to waste the petrol with the heating on. I kept telling her ‘go home, keep in the warm’ but she didn’t, she stayed outside she was persistent about staying outside. I was really frightened and I kept saying ‘is there any chance I could have my mum?’
"One time I was in A&E and I remember looking around and there was a young girl and she had a bandage wrapped round her knee, she was sat between her mum and her dad and I remember thinking ‘it’s nice she can have that comfort round her to get her by’ but then in your head you question ‘why can’t I have that comfort, why have I got to do all this on my own?’"
When he's not working in a local pub or attending doctors and hospital appointments, Jak spends his time supporting young people facing mental health challenges. "I'm really passionate about supporting young people with their mental health," he said. "I'm looking to set up a campaign to help them."
Asked what his advice is for anyone that is concerned about a spot on their body, or something that seems a bit untoward, he added: "My advice is just go straight to your doctor! Even if you think it's the stupidest thing, just go and see them. If it is cancer or something, there's lots of people to support you."
Two years since the pandemic began, some young people are still facing cancer alone
Associate director at Young Lives vs Cancer, Helen Gravestock said: "For many, life may seem to be getting back to some sort of normality, yet young people with cancer up and down the UK continue to go to hospital alone. The picture may have improved across the UK since the toughest restrictions last year but there are still young people hearing they have cancer, going for treatment and follow-up appointments without a hand to hold. It’s not right.
“The picture is inconsistent for young people across the UK, while one young person may have a parent or friend by their side, another is alone. We believe every young person should receive age appropriate care when facing cancer, which includes having someone by their side”
Chief nurse at Teenage Cancer Trust, Dr Louise Soanes added: "No young people should fall through the gaps. It is worrying that visiting restrictions vary from hospital to hospital, as this means some young people will have a worse experience in treatment than others.
“Having cancer treatment, receiving a diagnosis, and responding to treatment, is an incredibly scary and isolating experience for most people, doing this alone makes this worse.
“Receiving information on their diagnosis or treatment plan without another person there to listen in, young people must reshare and explain complex information with family members, friends, or a partner, whilst still trying to process what they have just been told.
“Young people should be empowered and ensure they don’t go through treatment alone. That’s why, together with Young Lives vs Cancer, we want all young people, where safe and possible, have crucial loved ones with them and a hand to hold, particularly during some of the most challenging times of their life.”
Young Lives vs Cancer and the Teenage Cancer Trust aim to support young people with cancer throughout the process of their diagnosis and treatment, especially if they're going through it all alone. Their guidance has been shared among NHS Trusts but is also available directly from the charities. To find out more about their Hand2Hold campaign, visit: www.younglivesvscancer.org.uk or www.teenagecancertrust.org
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