1. So Sissy, 2016 is a special anniversary year for you, would you like to tell us why?
"I was diagnosed with acute lymphoblastic leukaemia 20 years ago in April 1996 when I was just 3 and had treatment until 1998."
2. You were very little, have you got any memories at all of that time?
"I remember the importance of my family, my dad and sister used to come and have breakfast with me every morning and even though my mum had 9 month old Arthur and 5 year old Florence she spent most of her time with me. I remember one time when she couldn’t be there and she sent my Granny instead, I was so distraught that I bit my Granny so hard that she actually bled.
I remember the kindness of all of the doctors and nurses, especially the anaesthetist who used to tell me the story of the three pigs; I was always asleep before the third pig…still don’t know what happened to the pig!
I was a naughty patient and refused to take anything orally and on one occasion I even pulled out my Hickman line!
I remember the isolation because back then you were kept in isolation for 3 months at a time during treatment. There was one main nurse called Kat and to this day we’re still friends, she even came to Disneyland with us to look after me- I remember the green card we got to skip the queues, it was the best thing!
I remember wanting my hair to grow back pink, I’d chosen these wigs to wear when I lost my hair.
I had a little nurse’s uniform that I used to wear and the nurses made me a badge which said “Senior Staff Nurse Bridge “on it!
They were all so kind. At the time it seemed like it was all about me, but when I look back from a nurse’s perspective I can see that actually it was all about the family."
3. Can you remember what it was like when your treatment finished?
"This is going to sound really selfish, but when you’re ill everything is about you, so not being ill and having to go to primary school where you are one of just 30 kids is a real shock, especially as I missed reception. I was used to having an adult look after me all of the time; the one teacher was looking after 30.
It also seemed a really loud environment, for most of my time through treatment I wasn’t allowed in public places and only really had one friend when I was in hospital who was the daughter of one of my nurses."
4. So how much have things changed since you were treated 20 years ago?
"If you’re an ALL patient now you don’t have to spend months on end in hospital, and you can continue to live as normal a life as possible. Usually a week in hospital at the beginning and then the rest of the treatment as a day out-patient.
It means life can often continue, going to school, having friends.
The rules 20 years ago were strict no fresh fruit everything had to be cooked- my favourite foods were tomatoes on toast and brown hoola hoops- and strangely they still are!
Research has really made the difference there is a much better understanding of the biology of the disease, 20 years ago probably every child was over treated, now the treatment is personalised, gentler and has fewer side effects. With this better understanding comes more support and an improved health care environment."
The work of Bloodwise funding research and providing information and support has been fundamental to these changes.
5. You’ve got quite a well- known neighbour?
"Yes. Alastair Campbell."
6. What kind of neighbour is he?
"He’s great apart from when he decides to play his bagpipes in the early morning and wakes us up, but at least he gets rid of spiders in the house for us!"
7. And we met because of him, when he ran the London Marathon in 2003, he got you in to fundraising didn’t he?
"Yes he ran the London Marathon in 2003 and he and I did all of the press by Tower Bridge, he raised £750k and even got a cheque from George Bush! We also did the Junior Great North Run and attended the premier of the Calendar Girls film, I modelled for the Alternative Hair Show too- we’ve met lots of amazing people and it’s been wonderful to help raise money for the research that meant my leukaemia could be treated."
8. So Sissy what’s the legacy of that time as a leukaemia patient?
"Well my brother recently had his appendix removed and we discovered that my photos are still used in a guide about Hickman lines. And we still have close friendships with the doctors and nurse that helped us through those tough times, especially Nick Goulden and Kat.
I also trained as a children’s nurse, partly inspired by an addiction to casualty I have to admit, but mainly because the nurses who looked after me so inspired me and were so important to making some happy times and they were just so kind. But I have to say that I still get emotional when I see parents going to meet the doctor to find out for the first time that their child has leukaemia, because I know what lies ahead for them and although it’s so much better these days, it’s a very sad and frightening time."
9. So what matters to you now Sissy?
"I love to travel and explore, I really appreciate my freedom.
At some level I still feel different from my friends, at our age they are quite willing to take risks and be daring, for me I’m just grateful for being here, my life’s already been too risky and I don’t want to go there again.
And my family matters to me most of all after all that we have been through we are super close, I can feel that in the room here today."
Sissy was speaking to Cathy at our London Impact Day - one of five regional events we're holding across the UK bringing people together to talk about blood cancer and what we can do to help make a difference to the lives of patients and their families.
Find out more about childhoood leukaemia
Read more about people's experiences with blood cancer