About this time two years ago, my friend Sue Chambers began work on a charity cookbook for ADSHG. The thought was that the recipes would be mostly gluten and/or dairy free and low sugar, for those among us who have dietary issues and other conditions alongside Addison’s. The idea was that we would seek recipes from both our members and “names” from within the health sector. It was as much about raising awareness of the condition as about a financially viable recipe book.
Awareness-raising as a goal
At the time Sue was recovering from chemotherapy, which she underwent for triple negative breast cancer. Her lowered immune resistance from the chemotherapy meant she could no longer take public transport with any confidence and could not return to work as an early years consultant, so she felt a bit stuck at home.The cookery book was a project that other trustees had contemplated previously, but had not managed to bring to fruition. Sue is a keen cook and has many published articles, books and research projects for the Early Years sector. She was able to bring a personal passion to it, as well as the background experience to see it through to publication. Like everything else she commits to, Sue threw herself into the task. She fired off multiple eloquent requests via email, pursuing ambulance trust chief executives, dieticians and endocrinologists with links to ADSHG. She also took the time to trial various recipes at home, to make sure they could be adapted as gluten free.
Just after Christmas at the end of 2015, Sue and I were chatting about the book and we had a lightbulb moment; we would see if we could get some celebrity chefs to give us their favourite recipes to use in the book. This would make the book more marketable and intriguing. Sue did the lion’s share. Altogether, I believe she sent around 2000 emails, including one to each of the political party leaders in the UK! We emailed publishers, TV companies, restaurants, fan clubs, direct message tweeted and variously pursued several celebs in the UK, Ireland and worldwide for their input. It was always such a buzz when we got a response. Most of the celebs who responded were curious to hear about Addison’s, many of them retweeting to their followers about the condition. We had already achieved one goal so far – awareness raising!
A passion for children’s needs
Sue is passionate about children’s health and welfare and wanted to provide healthy recipes for children and babies. She approached her friend and former colleague June O’Sullivan MBE (CEO of London Early Years Foundation), who is also a member of the Children’s Food Trust, as well as Ashford and St Peter’s Hospital dieticians who she had personal contacts with, to contribute ideas for healthy, easy to prepare, inexpensive recipe ideas. LEYF also provided many photos of children growing, cooking and eating food. Sue didn’t want the book to be “worthy”. She wanted it to be quirky and fun and found lots of funny quotes to include.
By about June 2016 Sue had collated and tested more than enough recipes and had spent considerable time formatting her growing collection to develop the book. She then set about the arduous task of looking for a publisher – to no avail. She planned to self-publish, but the cost was prohibitive.
Then on 31 August 2016, Sue was told by the doctors that she had developed myelodysplasia, a form of leukaemia. Just hours later she and her husband, Alan, watched a tragic accident unfold in the river in front of her house. A teenage boy got into difficulty trying to swim across the river and drowned. Alan had sonar on his boat and assisted Surrey Fire and Rescue Service to locate the boy’s body. It came to light that Surrey Fire and Rescue Service didn’t have sonar equipment and if Alan hadn’t helped, it may have taken days to locate the body. Sue surged into action again and crowd-funded enough money to equip four Surrey Fire and Rescue Service boats, not just with sonar, but also rescue equipment.
Sue successfully pushed to get the law changed to better co-ordinate river emergencies in the hope that in future the emphasis would be on rescue rather than the recovery of bodies.
In January this year, having felt increasingly unwell for a few months, she had a series of blood tests and a bone marrow biopsy which showed that Sue’s myelodysplasia had transformed into Acute Myeloid Leukaemia. Leukaemia caused by chemotherapy (in Sue’s case the treatment she received for her breast cancer) is incurable and terminal, with a projected life expectancy of around 6 months.
Friends rally round
Knowing the book was almost at a stage to self-publish, Noel Hawks and I thought it would be a fitting legacy to Sue if we could in any way help her to get it published. When Sue’s neighbour Edwin Genet learnt about the publishing costs, he swept to the rescue! Edwin ever so generously wrote a cheque to cover the up-front costs for Sue to self-publish the book.
I travelled over from Ireland at Easter 2017 to see Sue. Noel, Anna, Sue, Alan, another friend with Addison’s (also called Sue) and I spent a lovely afternoon on Alan’s boat. We didn’t dare stop anywhere, as Sue’s neutrophils were dangerously low and anyone in a crowd with an infection could be potentially lethal to her. After the poignant but idyllic boat trip, we further discussed the book layout. Noel had the brainwave that the book should be ring-bound like the A to Z. We discussed the possibility of a launch, but by that time Sue was too weak to travel to central London. We hoped it would be ready for the ADSHG’s 2017 AGM on 24 June.
The week before the AGM, the book was back from the publishers. Sue was nominated to receive a lifelong achievement award at an Early Years conference for her work in early years but was too ill to attend the awards ceremony in London. At least the cookery book was ready for sale!
Sue was blue-lighted to hospital three days after the Early years conference with neutropoenic sepsis. I feared the worst. I thought she had just held on and survived long enough to see her book published. However, after 8 days in isolation with IV antibiotics she was discharged from hospital, having rallied around. Although terminally ill, she remains in good spirits and is as well as can be expected.
We were diagnosed with Addison’s on the same day back in 2011. Sue is my soulmate, my rock, my inspiration and the best thing to come from me having Addison’s disease. I am beyond proud to call her my friend.
PS from Noel
Compared to Sue’s incredible efforts in getting this wonderful recipe book together, ably assisted by Rachel, my input was minimal. However, having done all the really hard work, Sue was unsure how to get the book printed and published and had been scared off by the terms, conditions and exorbitant prices demanded by so called ‘vanity’ publishers. That is companies who print books that aspiring authors are unable to get published but want copies to give to their friends and family, known as vanity projects. Sue’s book is more important than that and deserved better treatment.
I have worked closely with a local firm, Catford Print, on a number of music industry book projects over the past few years and they took over the printing and publishing in their customary friendly and efficient fashion. They are also reasonably priced! My wife, Anna, thought it was hilarious that I was helping with a recipe book as I struggle to co-ordinate tea and two slices of toast at the same time. Sue sent me the manuscript and I proof read it. I thought I was careful but Sue went through afterwards and was so painstaking that my approach looked slapdash.
I was delighted to be able to help in a small way and the finished product looks amazing. I was more than proud to work with Sue and Rachel on the book which stands as a testament to Sue’s indomitable spirit and the value of true friendship.
During her period of service as a volunteer and then an elected trustee, Sue Chambers also played a major role in bringing the ADSHG’s employers’ leaflet to completion. She contributed to improving ambulance awareness through her correspondence with the South East Coast Ambulance service, as reported in back newsletters. Her 3-year term as a trustee formally ended at the June 2017 AGM. Sue’s drive and commitment during the years since her Addison’s diagnosis in 2011 will remain a lasting and inspiring legacy for others.
This article was first published in the September 2017 edition of the ADSHG newsletter.