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, or call 020 8360 1119.

Thursday, 1 September 2011

A project in memory of Helena

Health Research in Jeopardy from Annika Ostman on Vimeo.

For the past year I have been pursuing an MA degree in broadcast journalism at City University, and as a final requirement for our degree we have to produce a short news documentary. I decided early on that I wanted to do something in honour of Helena. It wasn't easy to focus on a subject so close to my heart but I also wanted to do something that I could feel Helena would be proud of.

The report was produced, written, filmed and edited by me, but a special thanks must be mentioned to Cecilia Ostman and Mimi Flemming who helped me with the filming for a few of the interviews. Please read the short blurb below and then press the play button on the screen above to view the report. Let me know what you think!

Cancer patients miss out on new trials due to excessive regulation

A new medical trial for a vaccine which treats pancreatic cancer has been launched in the UK. This form of cancer has the lowest survival rate of all common cancers. The trial will recruit almost a hundred patients in the UK. But researchers say thousands of cancer patients are missing out on these kinds of new trials due to excessive regulation.

Reporter, Annika Ostman, has been looking at what’s going on

Friday, 17 June 2011

One year ago

It is hard to believe that it is one year since our dear Helena left us. Like the shadow that danced from the candle I lit for her last night, her spirit fluttered away during the early morning hours of this summers day last year. Our lives came to a standstill but somehow the world hasn't stopped spinning.

We decided to pay tribute to Helena's memory with a trip to Rye, the little quite village in the English countryside that we stayed in last May. With the heavens pouring down with rain, we travelled out on the train and were filled with comforting yet hard memories of our time there last year.

As soon as we got into the town we walked up the little cobbled streets, seeking out the darling antique shop that Helena just loved and I wrote about last year. But when we turned the corner I noticed immediately that the shop had changed from its old shabby chic exterior to some fancy new ladies dress shop. The lovely old man who ran the shop had retired and somehow it felt fitting that this little gem had withdrawn from the world, just like our beautiful Helena.

We filled the rest of the day with lunch at the quaint Mermaid Inn, lit candles in the old cathedral, and took a taxi out to Great Knelle farm. This was the place where we spent our last few days outside the hospital with Helena and she really cherished it, always saying in the hospital that she couldn't wait to travel back out to the farm and the little lambs. Now we were back and the life at the farm felt the same, but we were there without Helena clinging gently onto our arms.

With time it seems one has to accept that we continue our days without Helena next to us, but I know we all feel her light and love in our hearts. I wish everyday we had gotten more time together, but I have also learned to be grateful for all we had. You are so very missed Helena and still so very loved. That will never change.

Cecilia and Helena at Great Knelle Farm

Wednesday, 15 June 2011

Guest Post: Anne Ostman -Linden Flowers to Helena

The Linden trees are blooming. Their sweet but not heavy smell lies over Clapham Common and somehow it reminds me of you. On my early morning walks up there I have had my alone time with you. 

You know how I have talked to you and sometimes asked you for advice and in the wind your presence has been so real. I’m going to miss my walks up there with you, meeting all the kids on their way to school and watching the dogs chasing each other over the wide open field.

It is time for us to leave the house; it is time for me to leave London. On Friday it is a year since you left us. Or did you really? Because somehow that feeling that I was so scared of losing is still there, you are with us my darling, but not in the way we had wanted it to be. We should have lived in this nice house all together. It did not happen that way, everything turned out the way nobody wanted it to. 

But we have had a nice time here at 17 Parma Crescent. Your friends have been taking good care of us and we sometimes of them. We have passed your old place on our way in to Sloan Square and it is as if we have followed in your foot steps here, lived your London life.

On Friday we are going down to Rye. We think it is a nice thing to do; go for a quiet walk around the lovely little city as we used to walk around with you. Visit the little antique shop even though we are not going to buy anything (we have too many things as it is). We will have lunch at the little pub and hopefully we can get a taxi to take us out to Great Knell Farm.

You liked it there, with the baby lambs and the horses. We all liked it there, but it was cold. I could have stayed there for ever, I wanted life to stop there, stop as it was, all of us together and you smiling over the strawberry cake and bubbly on my birthday. 

So darling this is it from London, next time I will be at Gotland and I will have been able to visit your grave. I have not seen the head stone and I have not planted that rose yet. I will, and you know I will make sure to pick one that smells as nice as the Linden flowers at Clapham Common.

I will for always love you and your sisters, you are all three of you so very special, not only to me but to so many people, and I will for ever be grateful for having had the opportunity to share my life with you.
With all my love and a big thank you to the three of you,

Helena and Anne at Borough Market, London
Annika, Anne and Helena at the Tate Modern
Helena and Anne at a restaurant in London
Cecilia and Helena on a London bus on their way to her farewell party

Wednesday, 11 May 2011

Guest Post: Monica Antoine

Memories of Helena in Nairobi

Part 1- Helena at the Swedish School in Nairobi
Helena was my pupil during her second and third schoolyear in the Swedish School in Nairobi. For me it seems as if  it was more than two schoolyears though, maybe because we had such a good connection and "understanding" of each other. She was the pupil you dream of having when you decide to become a teacher; always trying to do her best, smiling - and of course, always in a pretty dress.
Monica with her class in Nairobi (Helena-second from left)
With great help from Anne and older pupils this group of children performed the most fantastic plays, such as "De förtrollade prinsessorna" (The Enchated Princesses) where Helena and her best friend Manuela were the two witches. As Anne wrote earlier, all the costumes were made from beautiful materials bought in Biashara Street in Nairobi.
The princes and the witches of The Enchanted Princesses
But it is not only from the school I remember Helena. My husband Jean and I were lucky to have Helena, Cecilia and Annika visiting us many times and once they came in a "luciatÄg" (Lucia Train).
Helena, Cecilia, and Annika in a Luciatag
At one occasion "the girls" even spent a couple of nights at our house in Lavington, as Anne and Anders for different reasons were not at home. Then suddenly, the second evening, Helena complained about pain in her stomach and it turned out to be her appendix. What a worrying time it was, as the doctor wanted to operate straight away! But luckily Anders came back the next day and Helenas operation was successful. From that time in Lavington we will also always remember Annika's nickname chuki, which Jean gave her, as we called one of our Jack Russel dogs "Chuki". Now we have a lovely Chuki nr 2, so we are always reminded of the girls. 
Helena at school 
In the years that followed, I only met Helena a couple of times, as she was studing in different places. But one day I learned that Helenas first posting for the EU was going to be in Nairobi. I was very happy about that and was looking forward to seeing her again.

Part 2-Helena working in Nairobi
Helena came to Nairobi full of enthusiasm to work, to look for a house and so on. Jean and I picked her up one Sunday for lunch - now in our home in Karen. We all talked and thought about the time we spent at the Swedish School and all the wonderful other times in Lavington.

Helena found a charming old english-stylied house to move into- again in Lavington. This is not easy these days, as most houses of this type have been pulled down and the plots turned into apartmentblocks, esspecially in Lavington.
Helena and Monica in front of Helena's house in Lavington
Then one morning in September 2009 Helena called me and asked if I could accompany her to Nairobi Hospital for a Colonoscopy test. Of course I could and I was even proud that Helena had asked me! Just like when she was little she spent the night in our home and we had a nice evening in front of the fire. How difficult it was to realise then that in a months time Helena would quickly be off for treatments in Europe.

I will always cherish the memory of Helena as my pupil and also having had the pleasure of knowing her as a successful and beautiful woman.

Helena, Monica, & Cecilia at the school in Nairobi

May 2011
Monica Antoine

Saturday, 30 April 2011

Arriving in London

This time last year, almost to the day, I set off to London from DC to be with Helena. The ash cloud that sent Europe into turmoil miraculously cleared a day before and I made the journey across the atlantic with three large suitcases. I couldn't wait to be with Helena, for good this time.

When I arrived in London early the next morning I found Helena in her pyjamas, having just woken up.  Strapped around her little waist was a blue bag that held her newest chemo treatment, a sign that things had gotten worse since I saw her just a month before.

But most noticeable was her smile and delight in my arrival. I still remember the warm hug she gave me and the chipper tone of her voice as she exclaimed how good it was to have me there.

The next few days were a whirlwind as we set about the task of finding a more permanent place for all of us to stay, to pick up a new blonde wig for Helena, to refill prescriptions and to send Anne and Cecilia off to Kenya to pack up Helena's house.  When they left Helena and I had a few days to ourselves in London before moving out to the house in the countryside that I finally managed to find for us.

They were not easy days. Helena was in a lot of pain and very tired, and I felt a great a responsibility to ensure she was comfortable and entertained. I worked my way through a new cookbook for cancer patients to help her to cope with some of her side effects, and I ran around getting any little thing she wanted.

Yet, the strongest memory of our days together in London is a little outing we made to the Fortnum & Mason department store in Piccadilly. Helena wanted to get a hamper for her friends upcoming wedding so we took the bus downtown with her clutching my arm with determination.

We walked all along the aisle of the beautiful food court, choosing each item for the hamper with care. When we were pleased with our selection we sat down in their beautiful conservatory for a little afternoon tea. With a hint of oysters filling the air Helena told me all about their possible health dangers and we sipped our elderflower presse with sophistication.

It was just a small outing but today it reminds me of some of the many qualities Helena exuded: determination, generosity, and sophistication, and I will always cherish these memories from London together, remembering that with the hardship there was always a beautiful day. 

Sunday, 20 March 2011

Battersea Park

With the sun shining and many flowers now in early bloom, I was inspired to make my way to Battersea park yesterday with Anne and our friend Stina. Whenever I go the park I can't help but think of Helena and all the hours she spent in this beautiful park on the south side of the river Thames.

Helena lived around the corner from Battersea Park when she was in London between 2004 and 2006. She would head there on weekend mornings for a little jog, delighting male passersby with her speed and rosy-cheeks-endurance. I had the pleasure of going with her a few times, but I was always a few steps behind her, watching her blond hair bounce while breathing heavily and not looking half as sprightly as Helena.

There were also the times she would head to Battersea Park to attend the British Military Fitness training sessions. I am not sure how many she made it, but who would have thought that a glamorous girl like Helena even went once?!

Oh Helena, how I miss you and the many ways you could always surprise us!