I now have 11 tumours and this challenge will have to be me last. I just want more time

I now have 11 tumours and this challenge will have to be me last. I just want more time
Former WRU commercial chief Craig Maxwell has raised a fortune for others since being told he was going to die, but he refuses to spend a penny of that cash on the drug that will give him more time. Now, a panel will decide within days whether to fund the treatment he can't get on the NHS
Craig Maxwell and family deliver the match ball at the Wales v France match.
(Image: Huw Evans Picture Agency Ltd )
In the days leading up to Cardiff hosting its first European final in over a decade, former Welsh Rugby Union commercial director Craig Maxwell will be in the midst of another epic fundraising challenge.
Over five days, Maxwell and his team will row 72 miles from Tenby to Cardiff ahead of the Champions Cup final between Northampton and Bordeaux, looking to raise more money for vital cancer research. It's the latest in a series of remarkable challenges by Craig to raise money, having been diagnosed with incurable and inoperable lung cancer back in September 2022.
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Maxwell, who also worked as the chief commercial officer for the Six Nations, has thrown himself into fund-raising as he looks to leave a legacy that his wife, Tracey, and two children, Isla and Zack, can be proud of.
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Since his diagnosis, Maxwell has completed the London Marathon, cycled from Cardiff to Paris and, last year, he walked the entire 780-mile Wales Coastal Path in just 26 days, delivering the match ball ahead of Wales' Six Nations clash with France.
In doing so, he has raised around £1.6m, while the latest challenge has already seen £71,000 donated in the first week alone - a number that, even now, he admits he struggles to get his head around. However, the scale of his latest challenge is something else.
"It's the toughest by far," Maxwell told WalesOnline. "When I was diagnosed in 2022, I had three tumours.
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"I've now got 11 tumours. What we do every time new tumours arrive, we change my drugs to stop them growing any further. I'm effectively in a race against time.
"I'm on treatment to slow down the spread and give me as long as I can with my family. None of the treatments are trying to cure me, it's just trying to give me more time.
"Since January, I've been having chemotherapy. I'm on two different types of chemotherapy and a new drug called Amivantamab, which I've had to buy as you can't get it through the NHS.
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"That's cost us nearly £22,000 to buy this drug. We've applied now for funding because we can't afford to continue paying for it and we've proven that it works.
"But these three drugs together, the toxicity on them is really strong. After chemotherapy, I literally spend days in bed. I can't do anything.
"I've got terrible skin rashes from the treatment. My skin has open sores on it, and in my hair, my mouth and my nose. I get a lot of fatigue. Trying to train to be rowing for six hours a day, for five days in a row, whilst going through chemotherapy has been really hard.
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"But it's also kept me going and got me out of bed during a really difficult time. Knowing I've got to do this has helped me and not allowed me to feel sorry for myself. That's why it's the hardest challenge, because physically I'm dealing with all the side effects as well."
Former WRU commercial director Craig Maxwell will row 72 miles from Tenby to Cardiff to raise money for a cancer charity
(Image: Craig Maxwell )
The diagnosis came as a shock to Maxwell nearly three years ago. Back when he was 40, he was diagnosed with a rare genetic form of lung cancer, which had also spread to his bones.
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It would have been easy to crumble in the face of such news, yet Maxwell, who previously held ambitions to one day be the WRU's CEO, has focused his energy on creating change.
As profound a choice as that is, it isn't an easy path by any means when it comes to both Maxwell and his family coping with the situation. He admits that there's no "one size fits all" way of dealing with it.
"I dealt by this by going out and doing challenges," he says. "That's not necessarily the right or only way to deal with it.
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"Each challenge has got harder for me. As my cancer has got worse, and I've gone from three tumours to 11, it's got harder. Daily life has got harder.
"After this challenge, I'm probably going to have to stop the challenges and just focus on how we can do other bits of fundraising. This will have to be my last one as it's getting tougher.
"It's hard. Your life changes completely.
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"Not just my direct family, but my friends as well. We have really hard weeks and really good weeks. You've just got to stay close together, support each other and do the best you can. It's really difficult.
"When you're 40-years-old and being told you've got limited time with your young children, you truly realise what matters. Spending that time with your family and friends, telling them how much you love them, having those quality moments with your children.
"I've got to try and fit in 20 years of parenting into probably 24 months. How can I fit in that much parenting in that short a space of time? The only way I can think of is by role-modelling, letting my kids not see me be defeated the best I can - which is difficult at times - and make the best use of the time I've got.
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"So when they're older and dealing with the tough things life throws at them, they know their dad didn't get beaten at his hardest time and they're made of the same stuff. Role-modelling that to them is the most important thing I can do at this stage.
"That's been my drive behind these charity events and making sure that the next family don't have to go through these challenges. If we help that journey even in the slightest, then we've had huge success. They're the two drivers for me. I don't intend on going anywhere.
"I'm going to fight this until the last minute. My dream is to get both of my children to 18. If I could do that, I'd be a medical miracle. But that's what I want to do. That's unlikely, but it's my ambition."
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The importance of family is also why Maxwell's rowing challenge will culminate with another family affected by cancer, who will take the Champions Cup match ball from Maxwell and deliver it to the Principality Stadium.
The family, who currently have a family member receiving treatment at Velindre, have three young children roughly the same as Maxwell's.
"It's the most important part for me," he added. "A year ago when I did the walk around Wales, Me, Tracey, Isla and Zach had that moment where we walked the ball out ahead of the France game.
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"It's a moment we'll never forget - especially the children.
"I hope I can create something similar for the other family who are going through a similar challenge as well. That'll be an amazing experience for them during the difficult time they're going through."
Craig Maxwell and his supporters previously walked and cycled 708 miles around Wales to raise money for Velindre
(Image: UGC )
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As the toughest challenge to date, next week promises to be an arduous one for Maxwell. However, there is another factor that makes next week so crucial.
A new drug, which isn't available on the NHS, has reduced some of Maxwell's tumours, but, to date, he has had to fund it himself - with the Velindre nurses having undergone separate training for the drug. With the costs set to be around £100,000 to keep using the drug, he has applied to a Individual Patient Funding Request panel for funding.
He's due to find out from the panel next week, towards the start of his rowing challenge. The hope is that, should he get approval, other patients in Wales will benefit in the future.
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"I am funding the drug myself at the moment," he explains. "We've applied to a panel for funding.
"The drug is working. It's halved all the tumours in size. We've applied for funding. We find out on May 20, at the start of the row, if they'll fund it. If they don't, I've got to find £100,000 to stay on the drug.
"In terms of my own treatment, it's a critical moment on whether I stay on this drug. I made a commitment to when this charity was set up that none of the funds go towards my personal treatment. I stand by that. We need help funding the drug, now we've proven it works."
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One thing is certain ahead of next week's challenge - the rugby community, as it has done previously, will rally once more around Maxwell.
He admits he can't put into words how the sport that he worked in for so long has responded. An OBE and a special recognition award alongside Kevin Sinfield at the Sports Industry Awards will be things that his children will be able to look back on and "hopefully that will make them proud".
But the support of the rugby community has been just as touching. "Anything I need, they've kept in touch," he adds.
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"Former players have contacted me. EPCR, Six Nations, the RFU and the WRU have all supported me. It's been unbelievable.
"It's huge. One of the ones that touched me the most is when Ken Owens retired, he did his retirement dinner and nominated our charity. He donated a huge sum to our charity. That was overwhelming that Ken and Carys chose to do that. It's amazing."
To donate ahead of Craig Maxwell's Coastal Row Challenge, you can visit https://the-maxwell-family-fund.justgiving-sites.com

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