Bride invites stem cell donor who saved her life to her wedding

As Helen Eragona prepared to marry the love of her life, she knew that a few years ago such a ceremony would have been unthinkable.

Monday, 19th December 2016, 5:12 pm
Updated Thursday, 29th December 2016, 2:12 pm
Helen and Raff Eragona, right, on their wedding day with stem cell donor Ben Potts, left. Picture: Jeremy Abrahams

A shock diagnosis of Hodgkin’s lymphoma when she was just 27 set her on a four-year journey marked by endless hospital visits and a gruelling chemotherapy regime. By her side through it all was Raff, her partner of 13 years, who she met while working at the MTV Europe Awards in Leith.

As the Newhaven couple said their vows in September in front of guests at Wedderburn Castle, in the Borders, they knew there was a special guest in the audience, without whom the ceremony might never have taken place.

Helen’s stem cell donor Ben Potts, 27, had travelled all the way from Maidstone, in Kent, to watch the couple get married, after a vial of his cells helped Helen beat her cancer.

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Helen and Raff Eragona

Helen, 33, said: “When you have your stem cell transplant you can send your donor an anonymous thank you card. I did not expect anything back but I got a card back to say, ‘I’m glad it well’.

“It was quite overwhelming when I met him for the first time. It seemed completely fitting that he would be at the wedding because had it not been for him, we wouldn’t have been there at all.”

Helen first realised that something might be wrong when she found a lump under her arm in August 2010.

She had been feeling a bit tired but she initially thought it was nothing as she was working flat out at the Edinburgh Festival.

Helen and Raff Eragona

However her GP immediately referred her for tests and within days her life was turned upside down when doctors discovered cancer in her white blood cells.

It was at this point that the couple found Maggie’s.

The centre at the Western General Hospital has offered extraordinary support to thousands of cancer patients and their families since it opened its doors in 1996.

The Evening News has joined forces with Maggie’s and dedicated fundraiser Lisa Stephenson for the “Buy a Brick” appeal, which aims to fund a £1.2m extension for the centre.

The support Maggie’s gave to Helen and Raff was so important to them that they decided to place the centre at the very heart of their special day by asking centre head Andy Anderson to be the celebrant.

Helen said: “Whoever was performing it, we wanted them to know us. It made sense that it would be Andy because he is the person who knows us in a completely different way to our friends and family, and is the one person who can calm us down in any situation.

“It made total sense and he was amazing.”

Maggie’s has been a constant presence in Helen and Raff’s lives since the diagnosis, where they have found comfort, advice and friendship from the staff and other visitors.

Raff, a professional singer, said: “I think I was initially put off by it because of this idea it might be like counselling.

“I didn’t think I really wanted to talk about it but Maggie’s is very different to what I imagined it would be like.

“They are so knowledgeable about what you are going through.

“The doctors don’t have time to go into detail. They have got facts and they are very specific about that but they don’t have a great deal of time to talk through it with you. Maggie’s does.

“It was just so warm and welcoming to walk into the building. It’s like a sanctuary.”

When Helen had her first stem cell transplant in 2011, staff at Maggie’s were able to explain how the treatment worked and to calm her nerves over the procedure.

They even introduced her to a woman who had undergone a transplant 15 years beforehand, so Helen could find out what the operation would be like.

Helen said: “When you are going through cancer in your 20s, not many of your peers know how to talk to you about that because they have not gone through it.

“Maybe they know an older relative but it is different. They feel a bit uncomfortable because they don’t know much about it.

“Coming to a place where the staff understand and there were other cancer patients here who know what you are going through. I remember talking to some people here, saying ‘What does nausea actually feel like? What does chemotherapy actually feel like?’”

Initially it seemed like Helen’s transplant had been successful and the cancer had gone away.

But 18 months later she developed a cough and doctors gave her the unthinkable news that the cancer had returned.

The rounds of chemotherapy started up again but this time Helen was told she needed a donor stem cell transplant, as the previous operations had used her own cells.

The charity Anthony Nolan found her a donor on their register and in March 2014, Helen underwent another stem cell transplant at the Beatson Centre in Glasgow.

The procedure went well and she was soon able to start rebuilding her life, and getting back to the job in arts marketing which she loved.

Although the cancer is gone and Helen’s prognosis is good, she still sought solace at Maggie’s.

She said: “I found the aftermath really hard. You feel like you don’t trust your body, you don’t trust anything.

“Once you finish treatment, you get a lot of people saying, ‘Oh you must feel you are the luckiest person in the world. You must be so relieved’.

“I was but I was also petrified it might come back. Because it did before.

“You don’t want to say that to other people because you don’t want to sound like you are just moaning.

“But Maggie’s is a place where it is okay to say those things.”

It also became a place to share their good news, such as when they got engaged in America last year.

Raff said: “When you have cancer you can’t imagine the reality of a year’s time being normal.

“Because you know that in a year that normal won’t be what it was before, because all this has happened. You do have a new normal even when you are over the treatment.

“The new normal is not all bad. A lot of really positive things happened to us because of the diagnosis, including a lot of the people we met at Maggie’s who we are actually really close to.”

Going through all the treatment and recovery has brought the couple closer together.

He said: “It’s a very unique thing that you go through together.

“It feeds into your life afterwards. When things do go a bit wrong, you kind of have to try and remember how lucky we are to be able to argue about what we want to watch on TV.”

Being a part of Helen and Raff’s wedding was an honour for Maggie’s Edinburgh centre head Andy Anderson.

He said: “I have never been asked to something like that before. It was quite overwhelming and I was happy to be asked to do something so personal and special for them.

“Obviously I got to know them both extremely well through all of Helen’s diagnoses and treatment, so as a result of that they asked me to take part.

“It was an incredibly fun experience and a very beautiful thing to be a part of.”

Andy also met Helen’s stem cell donor Ben at the wedding, which was the first time he had ever met a donor after working as an oncology nurse for many years.

He said: “Realistically, if it hadn’t been for him then the wedding might never have happened.

“Being able to witness Helen’s mum and dad meeting him for the first time was truly unforgettable.”