In April last year, my life changed forever. I took a call at 5pm, and by 10.30pm that evening was having the operation – a double-lung transplant – that would save my life.
Six months before this I had been living what would be deemed a relatively normal life. Age 27, I lived in London, did the nine-to-five (never really five…) in an office and spent the rest of my time spending most of my hard-earned salary on food and recipe books (over 200).
The difference between me and “normal”, though, was that I have Cystic fibrosis (CF), a genetic condition I was born with. Diagnosed at two years old, I was lucky in that I lived through most of my childhood without too many major consequences. This luck continued through university, two ski seasons and my first years' in London. I had jobs where even my employers didn’t know I was juggling the health issues.
Sadly, as is the nature of CF, over time the illness started to take its toll and two years ago my quality of life declined to a point that it was decided that the only option remaining was a lung transplant.
The shocking reality in the UK at the moment is that, due to the lack of organ donors and the current opt-in system, many people wait years for lung, and other, transplants, and thousands die while waiting.
In February 2017 my health declined. I was unable to breathe without the support of an oxygen tank and was admitted to hospital. My lungs, so full of infection they were no longer able to fight, were giving up on me. It took almost three months of intensive treatment in hospital, during which time I was deemed too ill even for the transplant operation. With no other options left I moved back to my family home, with oxygen and huge amounts of medical paraphernalia to keep me alive.
Incredibly, though, I became just well enough to relist. This was on a Monday, and by the Friday I got my call. I was being given a second chance at life, thanks to my donor and their family, and I will forever live in their debt.
After such a huge operation, your life changes immeasurably in so many ways. I was still in intensive care when I was first visited by the dietician team. Hooked up to what seemed like hundreds of machines, I was informed that, along with no longer being able to eat rare steak, there was a double-page sheet of foods that I would now have to avoid.
No blue cheese, rare meat or runny eggs; no raw fish or rice that wasn’t freshly cooked – which meant sushi was off the menu, as were deli-counter purchases and shop-bought sandwiches
Some of the items – real ale, for example – weren’t things that I was particularly worried about missing out on – but there were plenty of things I most definitely knew I would. No blue cheese, rare meat or runny eggs; no raw fish or rice that wasn’t freshly cooked – which meant sushi was off the menu, as were deli-counter purchases and shop-bought sandwiches. Lunch, if I made it back to work, was no longer going to be that easy dash to Pret or Itsu. In addition, I was told to wash fruit and veg, even if they were to be cooked, and avoid being exposed to foods which still had remnants of soil on them.
It was going to mean a huge shift in my cooking and shopping habits, as well as my eating routine. As someone who loved food, I mourned the freedom I used to have to eat anything and everything without worry. With my reduced immune system I was now within the “at risk” group of the population, and these guidelines were all about trying to reduce these risks and any possible food poisoning. There is no guarantee that I would become ill by eating the no-go foods, but the risk is significantly higher and if caught those “normal” infections could do significantly more damage. These same rules apply to those who have cancer and are undergoing chemotherapy; those with Crohn’s disease, Rheumatoid arthritis and many other autoimmune diseases.
Initially, I headed to the internet for a solution. I wanted to find some inspiration and some reassurance from real people who were in the same situation. I found nothing but, not one to sit around, I decided that I might be able to do something positive to help – and so the Now What Can I Eat? cookbook was born.
My idea is to fill a book with recipes that people who are immunosuppressed can cook from; a book that friends and family can use without any concern. It will use only list-approved ingredients and incorporate all the necessary preparation steps. I also want to raise money to say thank you to both hospitals, Papworth Hospital and The Royal Brompton Hospital, who treated me.
I’ve managed to persuade a number of chefs, restaurant and foodies to get involved, as well as the specialist dietician team at Papworth who will provide the medical knowledge.
The response has been hugely positive. As it stands we have a whole host of amazing contributors, from chefs including Gizzi Erskine, Paul Ainsworth, Tommy Banks and Mark Hix to restaurants like Leon, Burger and Lobster, and Honey and Co, to name a few, and some well-known foodies such as Tess Ward, Alice Liveing, Lily Vanilli. The hope being that anyone can open the book and find something within its pages that they want to eat or cook or enjoy. Sadly, although larger publishers showed interest, none were able to take it forward, so we’ve had to consider other options to make this book a reality.
And so that is where we are at now, trying to raise the funds to get the printing press rolling. I have launched a Kickstarter campaign, with the hope that with the support of the public, businesses, influencers…anyone… this book can become a reality and help some of those thousands of people who are constrained by this diet to enjoy food.
For more information please visit Now What Can I Eats’ Kickstarter campaign. Campaign ends 20 May and all donations welcome.