In 2007, my sister Leah was diagnosed with bowel cancer. She's had major surgery twice, two courses of chemotherapy, radiotherapy, a temporary (now reversed) ileostomy and additional drug treatment. Three years on, she has an inoperable tumour in her liver and has just started a third course of chemotherapy. The cumulative side effects from the various cocktails of drugs have resulted in many other physical problems. An appeal to Hertfordshire Primary Care Trust for funding a new treatment was declined the first time round and again more recently following a review. Among their reasons they say that they do not feel there is any "individual exceptionality" in this case. We are still unsure what this actually means. While not a cure, this treatment would certainly give Leah a longer life. An appeal takes place on 11 August, with new evidence and the support of various professionals.
Leah is 53. She is divorced with three children and currently single. Until recently she worked for the NHS, and now relies on it for her healthcare. People comment on how well Leah looks. Admittedly, she wears her cancer with grace, but it seems that for people to accept her situation she must resemble a cancer patient as portrayed by a bad television actor. While the professionals do all they can to prolong her life, our family and her friends do what we can to ensure she is mentally and physically in a good place. The impact of her health has affected us all and, as she is my only sibling, I find myself in a place I never expected to be, thinking about life without my sister and, more importantly, thinking about life with her.
When Leah was diagnosed my heart skipped a beat. I knew too much about cancer. My wife, Stella Duffy, had breast cancer 10 years ago, and various relatives and friends have had different types of the disease. It's not something I ever considered adding to my biography: "Knows too much about cancer." It's a whole new language I share with too many people. I've come to realise that the place of siblings in illness is frequently overlooked. We are not the partners of, or the parents of, or the children of, and often our relationship is not valued as highly. I'm not sure having more than one sibling makes a difference – not all brothers and sisters are friends, or share what we do, but Leah is my only one. I have known her since the day I was born, she is party to the past intricacies and present realities of our family life.
With life-threatening illness comes the urgency to say it all and do it all. And along with that is the need to protect your loved one, find any "cure" you can, Google until the letters on the keyboard fade, search for alternative treatments, never mind the cost if it guarantees that they will survive. Hard as I try, I am aware that I can never guarantee the good health of anyone.
Leah and I couldn't be more different. She's a wonderful mother and I am a cool auntie. I regret not having kids (we tried), so we could be parents and Leah – and Stella's siblings – could be aunts and uncles. I sometimes wonder why her and not me; she has children and often society values those who are parents over those of us who are child-free/-less. Then again, Leah has children to pass herself and her stories on to. Stella's and my stories pass down to anyone who cares to listen.
Our relationship has not always been smooth, we've had some turbulent times. Fortunately we straightened things out a long time before Leah's initial diagnosis, I'm not one for keeping things quietly tucked away. My impatience drives everyone mad, not least my sister's collective of medical practitioners, who sigh when they see me approach with notebook in hand. And I'm glad I'm that way, because as far as I can tell, the sick person doesn't want to ask the scary questions. That's my job. And it is a job, a project, keeping Leah alive, keeping her going. In many ways I have stepped into that place reserved for a partner. I go to the important meetings, sit with her for hours waiting for blood test results before she can have chemotherapy, sharing scan results, which is a sickening time for us all. And I've become adept at nagging two superb specialist nurses at Barnet hospital and the Royal Free, who deserve medals.
While we are emotionally close, we are geographically miles apart at opposite ends of London. The distances I have travelled over the last three years for appointments and various treatments between three hospitals in three different boroughs are extensive, exhausting and time-consuming. I'm fortunate that Leah has good friends and children who take her to meetings and treatments when I cannot, or just because they want to. Our parents, in their early 80s, often want to be more involved than Leah wishes – because, let's face it, no parent imagines their child having a life-threatening illness, with the possibility of an early death. Yet they look after her extraordinarily well and do what they do best (alongside giving us a great deal of love) – cook, shop and make us laugh, while also being heartbroken at their daughter's state of health.
Occasionally guilt slips in when I find myself enjoying life, looking ahead to my possibilities and making plans while Leah can make few. When she called after receiving her latest scan result, which a friend had taken her to get, while being utterly saddened for her I was also excited at the new wallpaper that had just gone up in our living room.
I try to look at what we have, rather than what we might not have, because whenever that day is, in a year or 10, I cannot prepare or predict how I will be. There are conversations still to come, a few days at the Eden Project with our parents – a belated 80th present for our mum. We've just had a fantastic, impromptu time in Barcelona, which was on Leah's list of cities to visit. Taking her during chemo would be too risky and I didn't want to wait for the right time, as that may never come. I couldn't bear it if she died and hadn't made that journey; this was something I could do.
As soon as she had a date for chemo, I asked if it was feasible to postpone by a week, and her oncologist encouraged us to go. As I had a few days working from home, I knew I could manage my time, so I booked.
It's a city I've visited several times, so Leah took charge of what to see – this was her time away to focus on something other than her health. I was slightly nervous about going away with my sister. We haven't been on holiday together since we were about 15, and I was also scared in case she became ill. It turned out to be an incredibly vital time for us both. I grew accustomed to the art of patience (impatience is one of my worst traits).
I probably walked Leah too far, but all that did was show her how much she could achieve, though she did tire more quickly. I learned to be slower, more considered – no bad thing. My friends cooked us dinner, we sat by the sea and on a tourist bus, holding on to our hats in 31C heat while our eyes feasted on colourful architecture. But the highlights for me were watching Leah walk around Park Guell and Casa Batlló, furiously taking pictures, a permanent smile on her face, as she studied every millimetre of mosaic. She came alive and there were moments where we forgot she was sick, and both glimpsed pre-cancer Leah. This was an absolute joy.
I believe that positive things emerge from troubled times. Being ill has definitely made Leah braver – what is there to be scared of now? Except being in pain and the ultimate, death, which she says she is not worried about. Some months ago, she excitedly told me she went out with a new growth of hair and no wig, which boosted her confidence. It has reinforced in me what I learned 10 years ago: that life is precious and the cliche that good health is the most important thing is utterly true. I value mine more than ever.
In terms of Leah's children (Gal, 24, Eyal, 22, Adam, 19) and our parents (Esther and Jack), I now feel like the one who needs to be on top of everything. Her illness has shifted the family dynamics and my status as the younger sister. I am the one who must listen, learn, take down, remember, pass on and, under no circumstances, forget.
Leah and I speak every day: four, five times or more. Mostly she is on good form, occasionally she has had enough – the thought that this may well be how she spends her life, on and off chemotherapy, is not appealing. She knows there are people worse off and she knows she is alive, and while the doctors offer her treatment our hope is prolonged.
At our uncle's funeral recently, I said a few words. My sister said, "When I die, will you say something about me?" Standing by the graveside on a hot, May morning, with stunning red rose bushes in bloom and a stunning view, my sister burst into tears and said, "That'll be me next." I can say it won't, and I dearly hope it won't, but I can't guarantee it.
Illness has brought us closer, encouraged us to discuss subjects most people steer away from, such as whether she wants her married name or our family name on her headstone. She has opted for the latter. Some people think this too morbid, but I want to have talked to Leah about everything before she dies, and she wants to talk to me. Most people don't get the chance and I don't want to catch myself saying, I wish I'd said or asked or explained, or apologised. She is neither terminal nor in remission; recent CT results show her inoperable tumour has grown by 1cm and there are several new lesions, all contained within her liver.
In my fantasy world, my parents magically never die, my sister and Stella keep going. In my real world, I know that an inoperable tumour on her liver is not good. She may live for three or 30 years. I'm going for the latter, because I want her to be around when my parents are not, to remember and laugh and cry and grow old together. To share the Hebrew, Arabic and Hindi words of our family vocabulary. Only having one sibling means there are just the two of us to reminisce and reflect about our childhood, all those moments that only we were party to, especially when it involves stories about our parents. Being the one who has to keep the history alive feels impossible at times and very responsible. Right now there are two versions of our history. I'm not ready for there to be only one.
