Sarah’s book of hope

MY friend Sarah Boland had a dream: to get a book published.

A feisty and beautiful Cork woman, she worked with the BBC in London and was a popular blogger.

But Sarah died last year, just months before her book was published.

Growing up in Bishopstown on the outskirts of Cork city, Sarah went to Mount Mercy College before going on to study English and Geography in UCC.

She moved to Scotland to do a Masters in Multimedia Technology at Napier University where, in 2001, she met her future life partner, Robin Figueirado, from Bermuda.

Robin recalls how they got together: “Sarah and I met not long after 9/11. We were also in the same hall of residence, so we helped each other with class work and soon the initial spark between us turned into something greater.

After graduation, Sarah landed a great job with the BBC in research and development in Surrey, producing live broadcasts for BBC Weather.

“Although we never married, we talked about ‘getting on with it soon’. The English language leaves me with the very unsatisfactory words ‘partner’ or ‘girl friend’ — neither of which seem to cover the relationship we had, so now I sometimes refer to her as ‘my late wife’ for simplicity. We used to celebrate an anniversary every Oct 31 because we ‘hooked up’ at a Halloween party in 2001. Sadly, Sarah passed away one day shy of our 10th anniversary, so Halloween will always be full of bittersweet memories for me.”

Sarah was a typically healthy woman and even ran the London Marathon in 2008. The first symptoms of her illness came in November 2009 when she developed mouth ulcers, making it extraordinarily painful for her to eat. Then, in April 2010, Sarah was diagnosed with a rare, aggressive form of lymphoma — NK/T Cell.

To help her communicate with family and friends during treatment, she started writing a blog. She found it very therapeutic — it was basically a bedside diary of the trials and tribulations she faced on her long and difficult journey.

In one entry from last year, she tried to explain to her British friends a term familiar to us Irish: “’Tá tuirseach an domhain orm’ is a phrase that in the Irish language describes tiredness. It means ‘I am very, very tired’, but it directly translates as ‘the tiredness of the world is on me’. Yeah, like the entire world. What can I say, we Irish like to dramatise things. We also like to sometimes play the martyr, so are happy to bear the tiredness of the whole world (as in 6,697,254,041 people) on our shoulders. But today, when I was trying to get out of bed, it did actually feel like the entire population of 195 countries was standing on me, nailing my duvet to my bed.”

Sarah found people struggled with knowing what to say to her because she had cancer.

“They don’t know what to say, so they avoid you and then feel guilty,” she blogged.

“This could all be avoided if only we told you what we wanted, but we don’t. So, I want to start a list of tips from cancer patients which will help people avoid this communication cliff edge. I have started with a few points, but I want to get as many cancer patients to contribute.

My idea is to publish a guide so that carers and friends would finally know what to say to someone with cancer.”

Robin remembers it was around this time that her thoughts also turned to writing a book for children living with cancer and facing radiotherapy.

In the book, Jack’s Radio Mission, a little boy is going through radiotherapy. The title is a play on the radiotherapy treatment — with little Jack using his mind to take him on adventures in the big scary world of medical machines. When he sees the MRI machine, he imagines himself in space, flying his spaceship and blasting asteroids with lasers. The idea is to get children looking beyond the unpleasant world of x-rays and medical procedures and finding a fantasy world that can make it all easier.

The book is published through the online self-publishing service lulu.com. Robin says he had never heard of the site, until a former BBC colleague of Sarah’s — Katie Wall, who is also responsible for the beautiful illustrations in the book — suggested it.

Sarah finished the text at the end of last summer and Katie worked throughout the autumn to finish off the pages. It’s a big consolation to both Katie and Robin that Sarah got to see the book almost complete before she died.

“After Sarah passed away I worked with Katie to finalise it,” says Robin. “It’s printed on demand so it can be ordered in single copies. All profits will go towards leukaemia and lymphoma research, and in a few weeks the book will also be available to buy through Amazon, though the charity will get very little profit as a result of those sales, due to Amazon’s markup, so we are really encouraging people to get it through lulu.com.

“It’s €11.55, but whenever there is a discount deal available I post it on our Facebook page. If someone wants a bulk order, they can contact me directly as I can probably get it printed for less. My main focus is on getting this book into the hands of kids that are going through this terrible ordeal.”

Despite the distraction of working on the book, Robin admits that life without Sarah is very challenging. “It can be very difficult at times. I often use the analogy of a physical wound: even though it’s healing, it can be very painful and will leave a big scar that I will carry forever. That said, staying busy keeps me from focussing on it and I draw strength from positive pursuits. I am organising a bike ride from London to Cork to raise money for Leukaemia and Lymphoma Research — we should arrive in Cork in early June. Have a few Murphy’s ready please! I also have a fantastic group of friends and family that have supported me through all of this, which has taught me a lot about the importance of the people in your life.”

Cancer may have robbed us of a wonderful person like Sarah, but there is some solace in knowing that we can hear her lovely voice through the pages of Jack’s Radio Mission.

* The book is available on: www.lulu.com/spotlight/figgs. For more information see www.facebook.com/jacksradiomission or Sarah’s blog, which is still at www.sazbol.co.uk