Regulars Relative Values

The blogger, student and cystic fibrosis sufferer Tor Tremlett, 23, and her mother, Chris, 58, on the agonising wait for a heart-lung transplant, tough love, and Tor’s determination to get all she can out of her life

Every day, I watch my daughter struggle to stay alive
Chris: When you go on the
heart-lung transplant list you’re given a year to live, 18 months tops. Tor’s waited three and a half years now. I’ve woken up every morning hoping this will be the day we get the phone call. It’s the only thing that gets us through. But it’s a complex feeling. You know that for Tor to live, someone else will lose their child, yet will have found the generosity and strength of spirit to donate their organs. Tor was diagnosed with cystic fibrosis (CF) at two and a half, but she was a sickly baby before that. When I eventually got a hospital referral, I steamed the letter open and saw the doctor had written: “Neurotic mother”. On the third visit, Tor had a cough and a test revealed CF. I knew it must be bad because they all started being kind to us. They said she’d have a shortened life expectancy and I thought, “Maybe she won’t be collecting her pension.” Then they said, “early twenties”. That hit me hard. I cried and cried, and Rob, Tor’s dad, who always takes things in his stride, crashed the car on his way to work. CF causes a build-up of mucus in the lungs and digestive system, which we have to dislodge with daily physio, and Tor takes around 80 pills a day. We used to call them her “growing seeds”. For the first few years she was so well I thought, “They’ve made a mistake.” I didn’t want to mix with people whose children had CF, but I did have one friend who had two boys — they’ve both died now. This is how it is for Tor; she sees friends falling away. At about 16, Tor’s lung function seriously deteriorated, though she tried hard to hide it. She’d be at school early so she could climb the 8 She does get very, very angry and she has to let it out somehow. She’d go doolally if she didn’t. I’ve always thought of myself as quite a weak person, but I know now I’m not. My mum lives three doors down, and Tor has two older sisters. They’re in and out of the house all the time, but they don’t understand the intensity of our relationship. Nobody could. We have lots of very bad days when I don’t know how we’ll carry on, but if she’s down, I’m up, and vice versa. She takes it out on me, she cries and throws things, and I’ll take it out on Rob when he walks in. Her sisters shy away from it. It’s hard for them to see her suffering. They think: “Why wasn’t it one of us?” They suffer too. I don’t have their children to stay in case we get the call in the middle of the night. My priority is always Tor. She’s so frail, yet so feisty. The hopelessness we feel sometimes is overwhelming, but she won’t give in, so I won’t either. I’m convinced she will get her transplant. I don’t want anything for myself, I just want Tor to take a breath without struggling. But every day she fades a little more. When I kiss her goodnight and turn out the light, I can’t bear to think of the thoughts she must be having. I stand for a while looking at her — she’s so beautiful — and I think: “No. I can’t lose you yet.”

stairs and get her breath back before anyone saw her. Walking home she was like a little old lady, sitting on the wall every minute. She now has less than 20% lung function and I am utterly in awe of her determination to keep going. She has a non-invasive ventilator and an overnight feed, which she does herself — pushing a tube up her nose and down her throat every night — because she’s had to drastically increase her weight to stay on the transplant list. It sounds simple, but you can’t imagine the battle it’s been. Every day I do her physio, and I wash her and dress her — things no young person wants their mum to do. On a bad day there isn’t time for anything else. Tor has a beautiful voice and she’s passionate about musical theatre — she must have seen Phantom of the Opera 40 times. But now she can’t walk as far as the car. I gave up my job as a teaching assistant in July because I don’t like leaving her.

Tor: I feel my life’s been turned

on its head. I should have fled the nest years ago and be forging a career for myself by now, but I’m more dependent on Mum than ever. Each day I need her a little bit more. The simplest task — talking, washing, brushing my hair — leaves me gasping for breath. Today I thought, “I’ll wear the red dress.

It makes me look less pale.” Then I changed my mind, but I didn’t have the strength to get it off. My health changes daily, sometimes hourly. Most days I am exhausted and achy from morning to night. Mum knows instinctively what I need; she’s always trying to think up tiny ways to make me feel better. We manage my treatment regime together. Actually staying on the transplant list has been the hardest battle of my life, because I need to be well, and at an optimum weight. When I was told I’d have to have the nasogastric tube, I cried and cried. But Mum convinced me I could do it. She massages my aches and pains, paints my toenails

Far left: Chris with Tor as a baby, before she was diagnosed with cystic fibrosis. Today (left) at their home in Romford

T/C

‘Though there’s lots of crying there’s lots of laughter too. Our humour is pretty black. You have to laugh, or you’d be crying all the time’
pretty colours, makes my favourite meals when I have no appetite — which is most of the time — and calms me down when I’m in a state. But also all the mental strength I have, I get from her. Waiting for a transplant, every day’s a whirlwind of emotions. I’m quite a crier, especially when I can’t catch my breath, and my chest and back feel broken from the effort. It’s impossible to live under this kind of pressure without getting depressed and sad and angry. I’m embarrassed to say it’s Mum who takes the brunt of my moods. We have a bit of a shout, don’t talk for a while, bang things around. But just as it’s the little things that make us argue, it’s the little things that keep us going. If The Apprentice and Desperate Housewives are on TV, it’s a good day! Shopping online makes us very happy, or people responding to my tweets and blog. I talk to Mum about everything, and though there’s lots of crying, there’s lots of laughter too. Our humour is pretty black. You have to laugh or you’d be crying all the time. My childhood was dominated by CF, yet I felt pretty normal. Knowing all that time that this is how I’d end up must have been a terrible burden for Mum. The deterioration has been so fast. It seems unbelievable that four years ago I could walk out of the front door without a wheelchair or oxygen. I’m doing an OU degree

and I’ve lost count of the times I’ve thrown my books about and threatened to quit. Mum keeps telling me I can and will do it — she knows I’m too stubborn to give up. And I’ve ended up passing with distinction, so I’m on my way to a first-class degree. Sometimes I need a bit of tough love to make me use the little time I have effectively. The most extraordinary thing about Mum is the way she always puts me first, and it hurts that I can’t do things in return. She honestly wants nothing more from life than for me to get my transplant. She broke her arm a couple of years ago and her only concern was how she would do my percussion physio. She managed with her left hand in the end. She’s completely selfless. She’s given up all kinds of things, from her job — that really upset me, because she loved it — to seeing family and friends. Because if I can’t go, she won’t go either. We have a moan, she bashes about in the kitchen, then we talk about all the things we’ll do when I get my transplant. The hardest thing for both of us is when friends who are also on the list die. It brings home to me how fragile my life is and I hate telling Mum because it hurts her too. But however scared I am, I know I’m not going through this alone. When things are at their worst, we come together rather than fall apart. And when one feels there’s no hope, the other is there to say: “You can and you must carry on.” s Follow Tor’s blog at tor-pastthepoint ofnoreturn.blogspot.com. For organ donation, visit organdonation.nhs.uk Interviews by Caroline Scott. Photograph: Ophelia Wynne 9