Daisy, diagnosed as a teenager, is one of the uncommonly occurring cases of MDS in young people. Although Daisy was successfully treated with Bone Marrow Transplant few years ago, her journey with cancer hasn’t ended there. She decided to use her experience for the benefit of other young people suffering from cancer in UK and now works as Fundraising Manager for CLIC Sargent Charity - UK’s leading cancer charity for children and young people.
“I was always focussed on the end result and simply did not allow myself to accept that this was an illness – and indeed a treatment – which could kill me. (…) I think it is far more important for young sufferers of any illness to look towards the future, if they can, even when it is hard.”
Daisy Turner – MDS experience
Daisy, diagnosed as a teenager, is one of the uncommonly occurring cases of MDS in young people. Although Daisy was successfully treated with Bone Marrow Transplant few years ago, her journey with MDS hasn’t ended there. She decided to use her experience for the benefit of other young people suffering from cancer in UK and now works as Fundraising Manager for CLIC Sargent Charity - UK’s leading cancer charity for children and young people.
We would like to share the story of this exceptionally brave and inspirational young lady.
Please click here to read the interview with Daisy Turner, published on the Platform505 website on 29th January 2015 -also available below:
“It is always inspiring to talk to young people but when you meet Daisy, there is something so special about her, her winning smile and those dark penetrating eyes that invite you to learn more about her extraordinary life. Mature beyond her years, Daisy has experienced the dark side of life but has come through the other end – and now she wants to help other youngsters to realise and believe that they too can survive their cancer.
Tell Me About Your Early Childhood?
I was born and raised in Ipswich to two fantastic parents. I’m an only child but was always surrounded by other children as my mum had a continual open-house policy which in turn meant I shared whatever I had.
What Were Your First Symptoms And How Old Were You At The Time Of Discovery?
If I really think back, the signs that something wasn’t quite right appeared when I continued to suffer from verrucas, warts and mouth ulcers from the age of about 10 or 11. The symptoms which alerted our GP manifested when I was 15. I suffered from low immunity – not uncommon for teenagers – I would fall asleep as soon as I had the opportunity – again, not uncommon – this would most frequently be at school, in the middle of lessons. It was only when the GP sent me for blood tests, following another bout of antibiotics for an infection which failed to shift, that it was suggested there might be something wrong with my blood. After extensive analysis, further tests and lumber punctures, I was informed I had a rare condition called Myelodysplasia, a condition normally associated with people in their 70’s.
This Must Have Come As A Devastating Blow To A 16 Year Old Who Is In The Throws Of Teenage Life And Planning Out A Career – How Did You Cope?
In truth, it was a relief to know there was a reason behind my symptoms. It did of course come as a blow to discover that I was not invincible – contrary to my peers. I was devastated when my kind haematologist Prof Mufti gently told me I would not be going to Peru; a trip I had been fundraising for a year with fellow students at Colchester Sixth Form College. I was very fortunate to have manageable symptoms for almost three years before I would require serious intervention. I made sure that until the time came, I would do the same thing as all my friends, such as doing a ski season, planning for university, partying and travelling. I didn’t feel sick and I certainly didn’t want anyone to think I was sick.
I received my cord cell transplant during my gap year which was then extended to two years. I was in an isolation ward and was treated alongside adults. Unlike other forms of cancer treatment, contact with others is very much discouraged during the six weeks of treatment surrounding a bone marrow transplant. This can be extremely lonely but I was rarely without my boyfriend, my mum, or my dad by my side – without them, I don’t know if I would have coped. I cannot imagine how those without support from friends or family would get through it.
How Aware Were You Of The Gravity Of Your Illness?
I was always focussed on the end result and simply did not allow myself to accept that this was an illness – and indeed a treatment – which could kill me. It was a shock to be told that risk of death is significant for bone marrow transplant. Signing a form to permit the treatment to take place was, in light of this knowledge, both necessary and terrifying. Only on the days when I felt completely out of control of my own life – feeling nauseous and spending hours in a waiting room – did the seriousness of my condition get me down. I think it is far more important for young sufferers of any illness to look towards the future, if they can, even when it is hard.
TCT Has Helped To Increase Public Awareness Of Teenage Cancer And The Need To Provide Teenagers With Surroundings Suitable For People Of Their Age; Have You Noticed An Improvement In This Area Since You Were Hospitalised?
Huge changes have taken place in the last few years and I understand that the facilities for young people have vastly improved. There is still a very long way to go towards providing age appropriate spaces for cancer patients. The biggest improvements are in the online services for young people, making the most of social networking. CLIC Sargent has a specific young people’s Facebook group where those dealing with cancer can connect with one another.
I don’t consider myself brave at all, I simply didn’t accept that what was happening could possibly kill me. It was never an option not to cope and I always believe that no matter how tough things might seem, there is always someone who is worse off, which is a terribly sad fact. I was so fortunate in so many ways: I had ground-breaking treatment; impeccable care and the support of a financially stable and loving family along with amazing friends to keep my spirits up.
What Were Your Lowest Points?
Just the times when the recovery seemed very slow and out of my control. Times when friends’ lives seemed so different to mine. To be honest, I was fortunate that these were only brief wobbles and I was always given so much support from those around me.
I think many people find it difficult once they are on the road to recovery because you forget just what it is to feel normal and go about your life without being burdened by sickness. Equally, freedom from symptoms can also be terrifying.
Who Has Been Your Constant Source Of Inspiration?
A dear family friend had recently overcome breast cancer just as I was about to start my treatment. Though it was tough, she didn’t accept that it was going to impinge on her life in any way and this was undoubtedly an inspiration to me.
From my diagnosis onwards I had two incredible doctors willing me get well and whom I trusted implicitly, Professor Mufti and Dr Du Vivier. These two incredible individuals formed an almost comedy double act and their vast experience told me I should follow every bit of advice they could offer.
Has MDS Prevented You From Doing Anything E.G. Travel, Sport Etc?
Prior to my cord cell transplant, various infections and low immunity meant that I couldn’t travel to Peru or Hawaii – both were school trips. Now of course, there is nothing to hold me back apart from time and money.
I am the Fundraising Manager for Norfolk and Suffolk and I have the pleasure of working with individuals and businesses, supporting their fundraising activities as well as carrying out national campaigns such as Wig Wednesday (a key campaign in which we are encouraging schools, businesses and individuals to show solidarity, raise awareness and funds for children and young people with cancer on May 20th) and the Big Bucket Collection. No two days are the same and my plans can change entirely from a single phone call. A large part of my role involves raising awareness of CLIC Sargent’s work and the impact childhood cancer has on communities. One day I might be giving a talk to a primary school about the work CLIC Sargent does; the next I could be meeting with a local business, advising them on how they can integrate worthwhile fundraising for CLIC Sargent into their PR strategy. I love my job because I get to meet some truly inspirational people who have overcome unbelievable tragedy and still wish to do good and make the world better for other children, young people and families.
Perhaps An Obvious Question, But What Made You Want To Go Into The Charitable Sector Other Than To Help Others Like Yourself?
I’ve always wanted to be part of an organisation that has a very positive effect on people’s lives and I soon realised that this was quite rare in the commercial sector. I didn’t believe I could ever sell something – a product, service or an idea – that I didn’t believe in. I’ve found that working in the third sector offers so many opportunities for a varied role. Working for a cause I am passionate about is incredibly rewarding.
What Could The Government Do To Improve Cancer Treatment For Young People?
Ensure that there is sufficient funding to support young people suffering the long term effects of cancer, including fertility treatment. Long term survivorship support is integral to building a strong future; we still don’t know all the far-reaching affects, emotional and physical, of cancer and its treatment and we must ensure that those young people aren’t left behind. More and more young people are surviving cancer which is amazing, but they mustn’t be stigmatised in the work place or alienated by their peers. Raising awareness is perhaps the most crucial component for improving cancer treatment for young people.
What Has Been Your Greatest Challenge?
Enjoying a meal outPresenting an academic paper to a room full of professors and philosophy undergraduates at a philosophy conference last year. I hadn’t even finished writing the paper before I was told I had been chosen to present it at the annual conference in Sheffield. Though I love philosophy and academia, I’ve never considered myself a true academic and I always have a fear, even now when I am taking to a room full of schoolchildren, that someone in the room will stand up and call me a fraud and I’ll be rumbled.
What Motivates You?
I don’t have one single motivation: every day is a bonus and I’m excited to live it.
What Do You Do To Relax?
Like everyone else, I love to binge on Netflix: Orange is the New Black is our current drug of choice. I relax most when I’m with friends and we can really laugh and dance into the small hours.
What Is Your Favourite Saying?
If had the opportunity I would love to pursue a masters on Nietzsche – one of my favourites is: “We love life, not because we are used to living, but because we are used to loving. There is always some madness in love, but there is also always some reason in madness.”
Which Celebrity Would Your Rate As Being A True Inspiration To Young People?
There are very few whom I would actually rate as being a good inspiration while courting the media at the same time but I do love Lena Dunham; she’s got a lot to offer to our selfie-obsessed generation. Malala Yousafzai is of course incredible and the most brilliant advocate for education, but I’m not sure she would like to be considered a celebrity.
What Challenges Have You Set Yourself?
To take risks and not simply continue with something just because it is easy or comfortable.
What Do You Most Look Forward To In The Future?
I have so much to look forward, such as my boyfriend and I buying and restoring our next home, wherever that may be. I’d still love to make it to Peru one day.
It was a pleasure talking to this confident, attractive young woman who, I have no doubt, is bound to go places – both physically and with her career. We can learn a lot from Daisy’s courage and determination and she truly is an inspiration to other young cancer sufferers.”
Nina - Founder and Chairman of Platform505, 29th january 2015
Platform505 is a website providing inspiration, thought and discussion to women who take an active part in life and have something to say. It was set up in June 2012 with a vision for it to become the most respected on-line site and voice for The Thinking Woman. Please click here to see their website.