Cancer and My life

'If it's my time to die, I would say, thank you God for what you gave me'

Four years ago Jane Tomlinson was told she had bone cancer and would die within six months. From running three London marathons to cycling across Europe, she's done a lot of living since then. This is her extraordinary story

Tim Adams
Sunday May 16, 2004
The Observer

To hear Jane Tomlinson and her brother Luke talk you could be forgiven for thinking that this was a just a cycling holiday. Like any road trip, it's fuelled mostly by running jokes:


about bad weather and dodgy hotels, dismal toilets and skimpy breakfasts, the joys of trying to wash and dry underwear overnight. It's fun, all this, but you have to remind yourself from time to time that theirs is also a truly incredible journey.
When I caught up with them on Tuesday, Jane and Luke were sitting outside a little roadside hotel in Alassio, a resort in the north-west corner of Italy. It was day 10 of their tandem ride from Rome to home (in Leeds) and they had clocked up more than 500 miles. They gave me an account of the story so far, dwelling a bit on the unseasonable conditions, the times they have leaned the bike at a 45 degree angle into the crosswind, how they have got wet most mornings and wetter most afternoons. How they've seen thunder and lightning, hail and snow.

They tell me about the best of times: their first glimpse of the duomo in Florence, or the morning they got to the top of one climb just as the massed rainbow peloton of the Giro D'Italia, the big national bike race, swept through the valley below, a magical sight. They also recount how they have triumphed so far over the worst: on the longest day yet, nine and a half hours on the bike, they climbed 9,000 feet over the course of 70 miles from the sea to the snow line at the ski resort of San Stefano d'Aveto.

The one struggle they don't mention, however, is the one that makes all the other obstacles seem like no obstacle at all. In fact, it's more than an hour after I've met them - when I'm asking Luke how well the tandem balances on the steep uphill gradients - that he mentions in passing how 'it's sometimes a bit tricky as Jane can't stand up in the saddle to pedal because of the secondary cancer sites in her legs.'

Those closest to Jane Tomlinson have probably become familiar with this kind of observation, but its implications do not lose the power to amaze. Before I'd gone out to see her, I'd talked to her husband, Mike, who is back at home with their seven-year-old son and younger teenage daughter (the elder is away at university) and he'd told me about some of the milestones on Jane's long journey to Italy.

It had all really begun, he said, nearly four years ago when Jane was diagnosed terminally ill with cancer in her bones and the doctors gave her around six months to live. Before that she had never really done any sport or gone far on a bike, but she was asked to do a sponsored 5km run in aid of cancer research. 'And being Jane she did not want to be seen as someone who would just walk the course. She wanted to do it as fast as she could.'

Mike set out to train with his wife and the first time they ran she got to the end of their road and was gasping for air and doubled up. Three weeks later, though, she ran the 5,000 metres in well under half an hour. And her husband thought: 'How the hell did you manage that?' He's been thinking pretty much the same thing ever since.


Despite and because of her illness Jane got it into her head that she would do the London marathon for charity next. 'To be honest that first time, we thought she would be dead by April, and we couldn't really see her running it,' Mike explained. He and their three children talked about the race to keep Mum going over Christmas. 'It became like a family joke in a way.' But Jane did run it, and once she had done one, she wanted to go faster. Though the cancer continued to spread she has completed two more marathons. And her ambition culminated last year when she completed an 'Iron Man' event that combined a 1.9km swim and a 90km bike ride with a half marathon - run in 1 hour 57 minutes - at the end. Jane had not that long been off chemotherapy, Mike says, 'so you are just thinking: "How on earth..?"'

I'm thinking this, too, while I sit with Jane outside the hotel in Italy. Perhaps it is because it's spring, or perhaps it is the knowledge of what she is putting herself through, but Alassio seems all about life. There is the thick scent of orange blossom in the air, the old men are out on the pier swapping stories and twitching fishing lines, mothers and babies play in the soft sand at the shoreline. Jane is drinking it all in. I watch her do one of the live broadcasts to the news crew from Sky that is following her progress. She talks brightly of the miles behind her, and those still to come, of the challenge she is most looking forward to - the ascent of Mont Ventoux, the most feared climb in the Tour de France - all the time animated and modest and precise.

She's lost weight so far on the ride, to the extent that there is nothing of her, really. She has brought with her in her pannier one pair of 'going out' trousers to change into, but she is forever having to hitch them up, tugging to tighten the waistband. She and Luke stash as many bread rolls and hard-boiled eggs from the breakfast table as they can carry for lunch. They dine out on pasta and pizza at night. But however much she eats, she can't seem to eat enough, she says.

Jane came off chemotherapy for the last time in mid-January. It was her third course, and this time a very high-toxicity regime of drugs that systematically destroyed her immune system to try to knock out the cancer cells. It was not successful. For this journey she is taking nothing much more stringent than a cod liver oil capsule at breakfast, though she is also on a warfarin drip to keep her blood thin. The thought of just being here seems enough to keep her going, and it was that thought, she says, that got her through the worst of the chemo, too.

'From October to February when I was really very poorly I'd be thinking, this is where I'll be on such and such a day in May,' she explains to me. 'I've found it's easier to look forward to something outside of normal life, an adventure, than to fix on something that really matters to you. I could not have managed for example to look forward to getting my daughter through her GCSEs knowing all the time that I might not be there. But with this, it's like a dream. It's not real.'

The urge to do this particular trip began when she saw a TV documentary years ago. 'It wasn't a brilliant programme,' she says, 'but it had a big effect on me. It showed this family who fostered children and who cycled through France with some of the children they had taken in, all with panniers on their bikes. It just looked wonderful.'

After that film she and Mike decided to foster children themselves: 'We did respite care for two children with complex medical needs for about five years until I got very poorly again.' It was at that point that Jane remembered the other part of the programme, the cycling tour. 'My brother had a tandem, so he and I set off on a three-night trip in the Yorkshire Dales. This was two and a half years ago, and of course it rained all the time then, too,' she says. 'We enjoyed it, and I wondered if he fancied doing anything longer, to raise money for charity: and that's how John O'Groats to Land's End came about, which we did last year. And then we decided we wanted to do just one more.'

Jane and Luke are the sixth and seventh children of a family of 10, five brothers and five sisters. They have always been close, and her illness has brought them closer. 'Luke's probably helped me more than anyone in the family - and they have all been great - just with some good solid advice. Giving me information about the illness and about treatments.'

Luke is the senior charge nurse in the Accident and Emergency department at Jimmy's hospital in Leeds, so he's seen some things. He's as Yorkshire as you like, too, so he doesn't gush, but his sister's courage, as well as the half-million pounds she has so far raised for charity, is clearly a source of profound pride. Jane and Luke aren't cruising on the bike. They spin along at about 17 miles an hour, and they have had it up near 45mph on some of the descents. A couple of times they have attached themselves to the back of serious cycling clubs out on a 50k, and had a smile about how unhappy the young Italian racers have been in finding they could not shake off a tandem loaded up with kit and riding for a cancer charity. Feeling the tiredness in his own legs, in Alassio, Luke wonders how Jane keeps going. 'Sometimes,' he tells me later that night, 'I just haven't the faintest idea where she gets the strength from.'

Jane herself puts it down to the fact that she is both very stubborn, and very lucky. 'I was first diagnosed with breast cancer when I was 26,' she says, when I ask. 'I'm 40 now, so I've lived with that fact for most of my adult life. I had a recurrence at 29. And then the other four years ago, when I was told it had spread to my bones and my lungs. There's a level of pain all the time, of course, and sometimes it can get very distressing, but I see it as part of my life. I mean, what am I going to do: sit in a chair and be sad? Tell people my leg hurts? There's still life to be lived. I'd rather get on with it.'

On Wednesday, Jane and Luke were getting ready to cycle to Monte Carlo. By the end of the evening before, Jane had looked drained and pale, though she didn't say much about it, except that maybe she wouldn't mind eating soon, and perhaps she would get an early night. In the morning, though, she was bright and excited, leading the conversation at breakfast, anxious for any gossip she missed. She wanted to make sure she got her Sky bulletin done on time: it's important to her partly because her son Steven watches on the telly at home, seeing Mummy before he goes to school, and she worries if they are behind schedule, hoping it won't make him late.

They were cycling to Monaco on the fast coast road. She imagined the motorists would be as much of a problem as the hills, but she has learned to give as good as she gets from drivers who squeeze them into the hard shoulder. Before she set off Jane showed me the two-armed gesticulation in the Italian manner that she has perfected from the back of the tandem, a performance, she remarked, that tends to frighten off even the most truculent of Ligurian lorry drivers.

I took the train down the coast, and on the way read some of Lance Arm strong's book, It's Not About the Bike, his story of how he recovered from testicular cancer to win the first of his five Tours de France. Some of it, Jane found quite inspirational (while at the same time smiling and suggesting 'he can sound a bit of a selfish prick, too'). She does not allow herself much optimism, but 'if anything could make me believe in a miracle it would be Lance Armstrong, because when you read how poorly he was, he shouldn't be here.' Even so, she says, 'I don't hope for a cure, I just hope for a good quality of life, and I hope that when it becomes time for me to stop making the effort to still be around, I can let go.'

There are bits of Armstrong's book that might just explain a little why there is something about climbing steep hills on a bike that might in itself be attractive to someone like Jane. Partly, according to Armstrong, it's about letting your body know who you are, what you might be capable of. But more than that it's about time. I underline one or two sentences where he explains this: just as moments never seem so intense as when you are flying down a mountain on two wheels, so going the other way, time seems to stand still: 'A minute suddenly seems like an hour when you are pedalling uphill.'

When I stop underlining, I finish listening to the tape recording I had made with Mike, Jane's husband. He's talking about the night they found out that things could not get any worse. 'When Jane was diagnosed, by which I mean when she was told she was going to die, we were told quite late in the evening,' he says. 'A breast care nurse I knew very well, a lovely straight-speaking Yorkshire woman, asked me if I would like a cup of tea. I said no actually I'd rather be with Jane. And she said: "Let me put it another way: you are coming into my office now for a cup of tea." So I went in and she sat at the other side of the desk. "What you have to get into your head," she said, "is that Jane is going to die. There is no cure. Don't be thinking that someone will save her. And once you have got your head around that, you will be able to move forward with your life." To be honest that is how it is. This is not like Lance Armstrong where the chemotherapy reversed his testicular cancer. For a woman like Jane with secondary metastatic bone cancer there is no cure.'

Given this fact, Mike of course had some misgivings about Jane spending five weeks of the time she has left cycling through France. Some of this had to do with his usual fears about the strain she is putting on her body, particularly her spine, which, weakened by the cancer, could break. Mostly, though, it is the fact that she will be away from the family. 'We sat down a lot and talked about it, and part of her, of course, wants to spend every last minute she has with her seven-year-old boy and her teenage daughters. But weighed against that was the good she could do, the money she could raise, and the example she could set to other people in her position. No one is going to say how long Jane has to live now. The disease is a lot more advanced than it was four years ago. There are more sites and she is getting more pain from the sites. But in the end she felt she had set her heart on this and she wanted to do it.'

I wondered if, knowing Jane and her disease as intimately as he does, he believed the endurance tests actually helped with the cancer.

'Jane will say no,' he said, 'because she does not want other cancer patients to believe they can save themselves by running a marathon or riding a bike. But in her case at least I would certainly say she is better when she is training. Last weekend she was in Rome and two journalists who saw her set off rang me up on the Sunday night and said that they were concerned that Jane was not well enough even to start to cycle. Every day since then, she has told me the bone pain has reduced. Whether that is because she is distracted from it by the ride, or whether it is to do with endorphins she is producing, I don't think anyone knows.'

Mike and the rest of the family have not joined Jane on her trip, partly because they haven't the money, and partly because they do not want to disrupt the children too much. It must, I suggested, be a hard thing for him to sit with his son every morning watching Jane's progress on television. How much did Steven understand?

'Well,' Mike said, 'he knows that Mum's going to die. We joke that we'll have a two-seater, a Ferrari, after Jane's gone, though of course he knows we could never afford one. But he certainly knows that at some point soon there will only be us. He'll say: "Daddy and I will do so-and-so after Mummy has gone." But whether he understands the implications of that, who knows?'

Jane and Luke reach Monte Carlo in the early afternoon, and, for a change, just before the heavens open. They are quite light-headed from the ride, which has mostly been beside the sea. Jane says her gesticulations proved invaluable on the roads. In the thick traffic on the way into town they have also had, what she calls one or two 'Jane moments'. Recognising her from her TV bulletins a few ex-pats have ambushed her to give her a hug, or pressed a few euros into her hand for the charity. She is both amused and a bit embarrassed by the attention.

When she has sorted herself and the bike out we sit down for a coffee. Outside, Monte Carlo is preparing for next week's Grand Prix, and the big yachts are manoeuvring themselves in the harbour. I mention to her the fact of Mike's misgivings about her trip, wonder if she still has doubts she is doing the right thing?

Of course, she says, all the time. 'But more than anything else I felt that this would be the last year that we could raise funds in this way. It's intrusive and I don't have a lot of time left with my family. But I'm doing this because we could and because there was media interest, and I felt that with that we could maximise the amount of money we could raise. After this, though, no, I think I've well and truly done my bit.' She smiles. 'Also, although I'm away for five weeks, the thought of these weeks has got me through six months that I might not otherwise have got through. It's a pay-off, if you like.'

I say that watching her over the last couple of days, it's been almost impossible to think of her as terminally ill, and I wonder if that idea ever properly sinks in to her either?

'Not really, because the whole thing is surreal,' she says. 'The fact of living and knowing that you are not going to live much longer, you never get used to that. It's an odd thing to live without thoughts of a future. I'm a radiographer in the children's unit at the Leeds General Infirmary, for example. I work hard, but I'm not going to get to a higher level than I am now, however hard I work, or however much I might deserve it, because time is against me. Or: Mike and I always planned to move to the Dales when the children left home. I'd quite like to do it now, but the upheaval would be a nonsense if I'm dead next year. The lack of ability to plan, to have dreams really, that's the hardest thing.'

In a way, given that she is always so cheerful, so determined, it's a relief when Jane cries a bit, which she does now, as she looks out of the window at all the commotion outside, the gendarmes whistling at big articulated vehicles.

'It's just I have this feeling,' she says, 'this strong feeling all the while: I'm a Mum and my job's not done. I've never aspired to some highfalutin career, but I wanted more than anything to be there to see my family grow up. I've got a seven-year-old son, and I've got two nearly grown-up daughters, one of them has got a fiancé and I'm highly unlikely to see her married, I won't get to be there when Steven gets into high school, I won't be there with Mike.'

She wipes her eyes, collects herself, apologises. 'It's just sometimes there's no point in doing the happy-clappy thing I do to cameras all the time, because my life's not like that. People have come to expect me to be this immensely positive person, but I'm just the same as everyone else, I sometimes get scared, I sometimes think things are shitty, I sometimes feel extremely poorly, and if I want to bawl my eyes out I will.' Though, she admits, finding a way to smile, she probably won't very often.

But how, I wonder again, does she find the strength to hold herself together?

'Partly, she says, 'it's because I genuinely feel very lucky. When I was first told I was going to die my son was only three, and I could not bear the idea that he would not remember me. We all want to pass on a bit of ourselves into our children's lives, something that they can hold on to I suppose. So I feel I have been blessed in that now he'll know a bit about who I was. At 36, I felt very much that I was too young to die, that I hadn't done enough, now at 40 I feel I have done more than a lot of people do in a lifetime. So if it's my time this year, I would say thank you, God, for what you gave me. These precious four years. I mean,' she says, grinning, 'how many other Yorkshire lasses do you know that can say they have cycled to Monte Carlo this afternoon?'

I agree I don't know any.

'And how many on Monday evening will be able to say they have got up Mont Ventoux on the back of a tandem? Won't that be the most wonderful feeling?'

And after that, how far does she let herself look into the future?

'Well,' she says, 'after Mont Ventoux, I'm just hoping it's going to feel like freewheeling all the way home.'

· Jane's chosen charities are: Sparks, a charity dedicated to medical research into conditions affecting babies and young children, Macmillan Cancer Relief and two local charities - the Paediatric Acute Services at Leeds Teaching Hospital NHS Trust and Hannah House, a care home in Rothwell, Leeds. Donate online via www.janesappeal.com;