Thursday 6 October 2011

Helena's story featured in Prima Magazine

We all feel her light and love in our hearts

Annika Ostman, 27, a broadcast journalist from London, had expected to share a lifetime with her beloved sister Helena when she was cruelly snatched away.

July 9. My sister Helena’s birthday: the date indelibly etched on the calendar in my mind. The eldest of us three girls who had always been so close – the bossy, beautiful big sister I looked up to as a child, and adored as an adult. But when our family came together on 9 July 2010 it was to bury our dear girl, on what should have been her 30 birthday.


Eighteen months earlier, Helena - bright and fluent in four languages - had taken a job with the EU commission in Nairobi, calling me every day to update me on her progress. Along with the reports of the situation with pirates in Somalia, were her worried health bulletins. Since arriving in Kenya, she had been suffering with back pain and abdominal cramps. But, as an apparently healthy 29 year old, doctors put it down to stress – and her body adapting to Africa.

So when, one evening, she phoned to say she thought she was dying, I was startled by her fear. The pain was making it impossible for her to think about or do anything. Unable to eat and sleep, she’d resorted to taking hot baths through the nights to try and alleviate the agony, but nothing was helping and she was losing weight rapidly. I’ve since learnt that one of the hardest things about pancreatic cancer is that it often has no clear symptoms other than extreme pain. All I knew then was that wasn’t like Helena to be dramatic, and I was very worried.

Our mother Anne, 54, was so concerned that she travelled to Africa, and when she saw how thin and frail Helena was she knew immediately it was something serious. They went to another doctor who ran an ultra sound and some blood tests. He managed to diagnose her within a day.

Helena was remarkably calm as she explained: “I have cancer”. She was relieved to have a diagnosis at last, but my middle sister Cecilia and I went into freefall. Helena had pancreatic cancer – incredibly rare in someone so young – and our reaction was one of disbelief and despair.

The doctor recommended she return to Europe as soon as possible, and during treatment in Brussels (where the EU had helped find a specialist medical team) it became clear that Helena was not going to survive this ordeal. Her diagnosis (by now we knew it was stage 4), meant she had just a 1 per cent chance of survival. Hearing the grim statistics I broke down in pieces at the thought of losing Helena, and feeling powerless to do anything.

But Helena was strong, unerringly opinionated and fiercely stubborn – and she was obstinately optimistic that she would pull through. A vaccine had been developed which helps strengthen the immune system and can attack tumour cells. It wasn’t yet available but maybe it would become so in time for Helena to benefit. We all shared her hope.

It helped that the chemotherapy treatment she did receive, although not curative, did make her symptoms much better; and in February 2010, we three girls and our dad Anders went on a skiing holiday to Zermatt, Switzerland, a little town we’d loved when we were children, and one of Helena’s favourite places in the world. With hindsight I think this was a pilgrimage she wanted to make before her time was up.

My heart danced with joy as I saw her gliding down the slopes, still the brilliant skier I’d always admired. But, after the trip, her condition deteriorated rapidly. She lost weight and struggled to cope with the abdominal pain. The painkillers were not having the same effect, and we all moved to London where she could be closer to her old uni friends – and also had the hope of the vaccine…

But it was soon clear that Helena was too poorly to try the vaccine, and in early June, she was admitted to a private hospital in Wimbledon. I think we all knew that Helena was dying, but none of us said so and Helena didn’t talk about it. She didn’t make a will, or draw up plans for her funeral as some people do when they feel their life ebbing away. But, while we all just talked about how much we loved each other, friends of hers later admitted she had occasionally confided that she didn’t know how much longer she had. Just days as it turned out.

Typically it was Helena who kept everyone else strong right to the very end – even insisting on taking us all out to a restaurant for a proper dress up dinner one night. She put on red lipstick for the occasion and ordered for us all in fluent Italian.

It wasn’t until the last three days that she couldn’t speak or move. We sat there, talking to her, holding her hands, washing her, changing her sheets, dabbing at her mouth as it was cracking with blood. She seemed at peace (they say liver failure is a painless way to go). But for us it was total hell to sit there and watch as it became more and more difficult for her to breathe, knowing there was nothing we could do. It felt like she was trying to still fight but her body was giving up.

As she fought so bravely for every single last breath we sang some songs and talked about all we had done together. We slept at the hospital and didn’t leave for the whole last week.


When she passed away in the early morning in her sleep on the 17th of June 2010, we were all there in the room with her. Somehow it seemed appropriate the funeral was on her 30th birthday, as it was always going to be her special day anyway. We even had strawberry cake to eat after the ceremony – something Helena had always insisted on for her birthdays.

Our sadness was – still is – immeasurable. More than eight in 10 cases of pancreatic cancer in the UK occur in people aged 60 and over, and it is notoriously hard to diagnose, but the fact that it is so unexpected in a young woman is no reason for doctors not to look for it. I can’t help feeling that, had Helena’s symptoms been recognised earlier, there would have been a chance we would have celebrated that birthday with her, and many more to follow.

Now we have to accept that we’ll continue our days without Helena next to us, and I wish every day we’d had more time together - but I have also learned to be grateful for all we had.

BOX: The ‘Cinderella’ cancer
Around 7700 people in the UK are diagnosed with pancreatic cancer every year – only three per cent of them surviving beyond five years, and many dying within months or weeks of diagnosis. Sadly this Cinderella cancer attracts just 1.6 per cent of all research funding. For more information contact the Pancreatic Cancer Research Fund at www.pcrf.org.uk, or call 020 8360 1119.