Race for life - Jane Tomlinson

Published on Friday 11 July 2008 14:40

Jane Tomlinson died after an inspirational fight against cancer, raising money and breaking records along the way. Now, nearly a year after her death, her husband Mike talks about how he has found the courage to go on and follow in her footsteps

WHEN Jane Tomlinson, the amateur athlete and charity fundraiser, died of cancer at the age of 43 on September 3 last year, Britain lost a heroine. Her husband Mike lost much more – his wife, the mother of their three children, the woman with whom he went to gigs and to Mass and to the pub, with whom he argued and laughed, and for whom he cared during the astonishing last seven years of her life. He had watched in awe and fear as Jane put her ailing body through a series of physical challenges, almost masochistic in their difficulty, none more so than her final great event – a cycle ride across America, from San Francisco to New York. She completed it one year before she died, while suffering from a weakened heart, recovering from a broken pelvis and with the disease having spread from her bones to her liver.

I met her twice. The last occasion was in June 2006, when we went out cycling together on the busy roads round her home near Leeds while she trained for the journey across America. By that time, she had already lived about five years longer than doctors had expected; indeed, she seemed to outrun death with such ease and flair that when I heard her life had ended it was a real shock. She gave the impression that she might go on forever, and even now it's an odd feeling to write about her in the past tense. I want to write 'is', not 'was'.

Ten months to the day since Jane died, Mike Tomlinson opens his front door and asks me in. In grey jeans and a long-sleeved T-shirt, his body is slender and boyish, though the deep lines on his face give away both his age – 47 – and something of what he has been through. He has lost almost two stone since his wife passed away. He ran the London Marathon within that period, but the real reason for his dramatic weight loss is a mix of nervous energy and a frantic schedule that causes him to miss a lot of meals. Mike is up at six every morning, making sure his 11-year-old son Steven gets ready for school. He works full-time in the IT department of a bank, and is also chief executive of both the cancer charity Jane's Appeal, which has so far raised nearly 2 million, and the Leeds 10k race. Added to that, he is working on a book about the American bike ride, and is involved in lobbying the government to end the so-called 'postcode lottery' on medical trials which meant Jane had to travel from Leeds to Nottingham to get access to the drugs she needed. In a typical day he will have several meetings after work and get to bed, exhausted, some time after midnight.

"It has been a really full-on year," he says. "Part of me knows that's grief-avoidance. But if I stop, will I just fall to pieces? I haven't booked a holiday this summer because part of my brain is saying that if I stop for two weeks it might just hit me." He hasn't yet done anything with Jane's clothes, or gone through the 5,000 cards he received when she died, or sorted out the probate on her estate.

The house is being cleaned, so Mike decides it would be better to talk in a nearby hotel and drives us over. I wonder, though, whether he is also keen to be interviewed there because he knows that he will be better able to keep his composure in public. In Yorkshire, especially, the Tomlinsons are well known, and Mike has been very publicly bereaved. He is keen, therefore, to maintain his dignity. Though his eyes are pinkish, and his voice and hands have a slight tremor, he doesn't cry while we talk. He has two bands on the ring finger of his left hand – his gold wedding ring and the silver ring Jane gave him in 2001 when they renewed their vows. It's engraved with the words, 'On and on and on'.

In the car, he tells me he's been so busy he has had no time to train for his charity bike ride from John O' Groats to Land's End. Jane cycled the route in 2003, and he and his 20-year-old daughter Rebecca, his middle child, are revisiting it. "The primary aim is not to raise money," he says, "though we'd love to raise as much as we can. It's a family tribute to Jane, really – a personal journey to remember her." He expects the 1,400-mile ride will be intense and "very tough on the backside". He thinks he will feel a strong connection to Jane during the journey and that it will present his first real opportunity to mourn her.

I ask what the last ten months have been like. He says he has good periods and bad, and had hoped that by this point his recovery would have been more advanced than it is. In February, on what would have been Jane's 44th birthday, he felt very low so went out for an 18-mile run; physical exhaustion keeps the demons at bay. "Some people get on with their lives much quicker than I have," he says. "I'm still very much in love with Jane and I miss her like hell."

Jane was diagnosed with incurable metastatic breast cancer in August 2000, and was told that she might only have a few months to live, so Mike had seven years to get used to the idea that his wife was going to die. Did that mental preparedness make a difference in the end? "No, I don't think it did. I knew I was going to be on my own, and I knew I was going to be looking after Steven, but you can't prepare for the loss and the sadness. I've not done too badly, but there are times when I think I've let myself down and I've not been as good a dad to Steven as I should have been. It's partly just because I've been too busy. But, also, Jane was such a big character, such a big person in terms of presence and charisma, that there's a huge gap."

The first time I interviewed Jane, she told me how much her religious faith helped her cope with dying. She didn't pray for a miracle cure but for the ability to deal with the situation. She took comfort in the idea of the Virgin Mary, another mother, looking down on her; in tough moments during her challenges, when she was in real pain and distress, she pictured her father and grandmother watching from heaven. Mike is also Catholic, but I always had the impression that his religious belief, by comparison, was on something of a shoogly peg. He laughs at the expression and confirms this. "I'm not Jane and I'm not comfortable with all aspects of faith," he says. "I'm a lot more sceptical."

Does he believe in an afterlife? "Only in the sense that I'm a bit worried that when I get there Jane's going to bollock me for the way I've been behaving since she died."

Jane did believe in life after death, and Mike took great comfort in the strength of her belief. "Her faith in God was exactly the same at the moment of death as it was seven years previously." He also took solace in one important message she had for him. "I can't understand why anyone would like me, so for Jane to say, before she died, that her love for me was immense was a massive, massive thing. It was a huge comfort to me, that." He isn't being disingenuous about not understanding why anyone would like him; he seems to have quite low self-esteem. "I've always felt she could have done a lot better than me," he laughs. "She'd probably have said that herself."

She was a very straight-talking woman. The two memoirs she and Mike wrote together don't shy away from recounting the sweary fights they had; the books are very honest portraits of their relationship. "Our marriage was solid all the way through," says Mike, "but Jane was an explosive character, very feisty. You couldn't live with her and not expect it to be combustible at times. But in all the time I knew her, we never went to bed on an argument."

One compelling aspect of Jane's story is that she was the classic dichotomy – an ordinary person who did extraordinary things. She didn't revel in that, though. She wanted to be ordinary. Journalists like me were always keen to portray her as a symbol of human resilience, but she resisted that and insisted she was a normal person. Mike was always much more at ease with the media and public interest. He would talk up her achievements, she would talk them down. When I spoke to her before the ride across America, I brought up the difficulties of the route – the dustbowl sandstorms, the frying-pan heat, the mountains that can bring on altitude sickness. She just laughed off the risk. What I didn't know at that time, because Jane and Mike kept it from me and from every other journalist, was that the cancer had spread to her liver, that she was recovering from a broken pelvis, and that, six months before, she had been given a year to live.

"Jane never wanted to be famous, and she felt that if she was honest and said exactly what was wrong with her and where she was with her disease, her public profile would go up another level," Mike explains. The Tomlinsons did try to stay as private as possible. They wouldn't talk about anything to do with their lives before Jane's first cancer diagnosis in 1990. Even now, Mike refuses to tell me in which year they married as it would be breaking that rule.

The 4,214-mile ride across America was the last and most famous of Jane's challenges, but she had achieved a great deal before that. She ran marathons in New York and London, cycled with her brother on a tandem from Rome to Leeds. In 2004 she was the first terminally ill person to complete the Florida Ironman: it took her less than 16 hours to finish a 2.4-mile swim, 112-mile bike ride and finally a marathon. She was criticised sometimes in the press for spending valuable time away from her family doing these things, but in fact Mike and her children loved to see her compete and succeed. He knew how dangerous these events could be, aware for instance that the cancer had weakened Jane's bones to the extent that they could easily break and leave her a paraplegic, but the only time he really wanted her to abandon a challenge was the final American trip. The physical cost was visible on her body (she lost a quarter of her weight) and he could see how much she was hurting. Jane had started taking morphine for the pain, even though she and Mike had agreed that if her condition ever worsened to the point where she had to take that drug they would quit the event.

"I think I asked Jane to pull out of the American ride four times," he says. "The arguments were quite heated and we had a complete difference of opinion. Jane would rather have died than give up. Her view was 'I'm either going to finish or I'm going to be in hospital and I might never get home again.' She was never going to stop."

What was it like for him to watch her cycle off, against his wishes, possibly to her death? "It was Jane's life. I couldn't tell her not to do it. But I have to say, when it comes to guts, I haven't met anyone with a tenth of what she had. I don't know a single person who would set out on a ride knowing they could die, and accept it."

Mike was very anxious about the risks to his wife's health, but he also steered her towards challenges, suggesting new routes and so on. In December 2005, when they were told that Jane might only have one more year left, Mike asked the doctor what were the chances of her cycling across America. "Jane was never more alive than when she was on the start line of an event," he explains, when asked about this contradiction. "She became a different person. For about six or seven weeks before we went to America for the bike ride, she was desperately ill and in a lot of pain, mainly because of her pelvis. We got to underneath the Golden Gate Bridge and we weren't sure if she was going to set off or not, but there was just this sparkle in her eyes." He breaks off and falls silent for a time, visualising that moment.

"Here was someone who was in the final stages of their disease and – bang! – it was as if someone had turned a light on in her head, and suddenly the whole essence of being alive is encapsulated in her in this moment she sets off." He shakes his head. "I can't explain it. I can't explain how the day before she looked dreadful and couldn't get a hundred yards up the road on her bike, and then the next day all this adrenaline and positive energy makes her go, almost, 'I'm not ill any more. I'm going to do this.' You had to witness it to believe it."

Though Mike was closer to Jane than anyone, he was also – just like the rest of us – an awestruck spectator. Yet he had a ringside seat and was able to better understand her motivations. "I think the training helped her strengthen her body to deal with the rigours of chemotherapy. The challenges made her life more complete and made her a happier person. I think they gave her the opportunity to stay alive a lot longer. My feeling was that once she stopped, she would stop living."

The couple had always planned that when Jane went into her final decline that they would close the doors on the world and experience those last months in complete privacy, and that was how it turned out. Three weeks after Jane returned to Leeds from America, she became a grandmother. Her eldest daughter Suzanne gave birth to a baby girl, Emily. "Family was the most important thing in Jane's life," Mike says, "so having that time to spend with Emily and being able to see Suzanne as a mum was probably the most enjoyable part of her last year."

Six weeks before she died, she ran a fun run with Steven, managing a mile and a half in 15 minutes. Jane went into a hospice before she died to get treatment for the pain and she and the family decided it would be best if she stayed there. She was someone who loved to succeed; in the end, did she feel the disease had beaten her? "No," says Mike. "She didn't feel defeated by the cancer at all. She didn't feel sorry for herself and she didn't feel sad to be dying. Never once, not to the very end, was there an ounce of self-pity. No sense of 'why is this happening to me?'. She was just extremely happy with who she'd been in life, extremely happy with me, which I don't understand, and extremely happy to have had three great kids. She felt her life was complete. She didn't live as long as she'd wanted to, but she'd had a wonderful life."

Three years ago I asked Mike whether he ever wished he could swap places with Jane, take on her sickness if she could be healthy. He said he wished for that all the time. Jane interrupted him and said she wouldn't swap. What about now, though? "Yeah," he nods, "if I could switch now and Jane could be alive and I was dead, I would do it. Partly because I think Jane was a better parent than I am. Her judgement calls are a lot better."

During her long illness, Mike worried about how he was going to cope with raising the children, especially Steven who was only three when she was given her terminal diagnosis. So how is he coping with the parenting? "I've had to learn that if we have an exchange of views, I make sure that I apologise or make the first steps towards a compromise. Before, if I had fallen out with Suzanne, Jane would moderate both of us. We haven't got that now, so I've learned to make the first move and not leave it too long. We get it sorted within half an hour. But I need to make some changes in my life to make more time for Steven. He's 11 now, and in five years he probably won't want to spend any time with me, but at the moment he does. So I need to make sure he's priority number one, two and three. He's very well adjusted. He's working hard at school. He's an extremely pleasant young man."

It's very clear that Mike is coping with his loss by throwing himself into work, setting achievable goals, rather like Jane did, as a distraction from the darkness. He seems happy and excited while talking about his ambitions for the Leeds 10k, how he wants to increase the number of participants from 11,000 to 30,000, and about how keen he is to raise more than 2 million for the Jane's Appeal charity. What about in your own future, though, I ask. What is it you want from life?

"I just want to be happy," he says. "I'd like to be much more at peace with myself than I am at the moment. You know you asked if we would swap places? If I knew I was definitely going to meet Jane again, I'd quite happily go now."

He points across the room. "If that door was the end of my life and Jane was on the other side of it, I'd just leave now. I wouldn't even think about it."

That sounds very sad. Mike doesn't really want to die though, or leave his children behind. He just misses his wife. He was with his father when he died, and says he felt privileged to share that with him. Does he feel similarly about those final hours with Jane? Sometimes, during the interview, he has paused for a long time before replying to my questions. This time, however, he doesn't hesitate.

"I feel privileged that I spent any time with Jane at all," he says, "whether that was the first moment I met her, or her last moment."

WHEELS KEEP TURNING

Mike and Rebecca Tomlinson started their John O' Groats to Land's End ride on Friday (July 11). They will cycle around 60 miles each day and the Scottish leg of their route is as follows:

Today

Lairg to Inverness

Monday

Inverness to Tomintoul

Tuesday

Tomintoul to Blairgowrie

Wednesday

Blairgowrie to Edinburgh

Thursday

Edinburgh to Hawick

Friday

Hawick to Carlisle

They are expected to arrive at Land's End on August 1. For more information or to make a donation, see www.janesappeal.com.