I was asked to an event at City Hall in Cardiff by the CF Trust this week, to provide my usual context for the evening’s fundraising efforts.
The night was truly astonishing, raising over £10,000 for the Trust in an economy where people just don’t have spare cash lying around. What’s more it was from ordinary people affected or touched by CF and not a room full of the high and mighty of Cardiff or millionaire businessmen.
I was privileged to be there and to meet some truly remarkable people. I also gave a speech, which received the best reception of any talk, speech or presentation I’ve ever done. I was truly humbled by the reaction.
I don’t speak from notes, but thanks to the ever-wonderful K who supported me last night, here’s a (rough) transcript of the speech:
“Hello, thanks for having me here tonight. I’m here to tell you that CF is rubbish. That’s pretty much my job.
I have to say this is much better than my only other visit to Cardiff, which was rubbish. I think that had more to do with Southampton losing 1-0 to Arsenal in the FA Cup final at the Millenium Stadium than the city itself – turns out it’s a lovely place when football isn’t involved.
As I said, I’m here this evening to provide a bit of context for tonight’s event, to talk about what life with CF is really like and why it’s so important that you give as generously as you can this evening. I can see you all thinking “he looks pretty well for a sick person”, but I’m only this well because someone took the decision to allow me a second chance at life after they had lost theirs.
I used to do a lot of these talks when I was ill and it was so much easier. I’d drag myself up onto the stage, lumbering my oxygen cylinder behind me, nasal specs in my nose, probably struggle to actually get up onto the stage and just have to stand here looking like death and say, “It’s rubbish”. Everyone sitting out there where you are would look up and me and think, ‘Wow – that looks rubbish,” and my job would be done. Now it’s a little trickier.
I was diagnosed with CF at 18 months, which is pretty late by today’s standards. It’s thanks to the pressure from the CF Trust, CF is now tested routinely through the heel-prick test at birth, which makes a huge difference in allowing early intervention. I went through 18 months of hell which, luckily, I don’t remember, but my parents do. They had no idea what was wrong with me and anything they tried to do was almost certainly the wrong thing because of that.
Once diagnosed, I lived fairly well for the first part of my life – right through my teens to my early 20’s things went pretty well and stayed pretty stable. Things really starting going badly in my 20’s when I got stuck in Texas.
You may think that getting stuck in Texas isn’t that bad, and you’d be right, it’s not. But the reason I was stuck there was because I’d had a very small lung collapse. It sounds very big and scary, but this wasn’t one of those full-blown collapses with tubes being stuck in and all that TV medical stuff, it was much smaller and less impressive than that.
The trouble with lung collapses, though, is that the doctors tell you if you do get on a plane to fly home, there’s a very high chance it will go completely and – at 30,000 feet – I’d more than likely die. So I kind of figured that not flying made sense.
The trouble with staying in Texas, though, was that you have to pay for your healthcare, especially if your insurance company tries to claim that a collapsed lung is a pre-existing condition. This meant I had to go with out my regular preventative antibiotic courses that were designed to keep me as well as I could.
I went to Texas for two weeks over New Year and came back at the end of April, by which time the infections had scarred my lungs so much further than they were already, I started a steady and fairly rapid decline. It’s not fair to blame it all on Texas, my lungs had been declining for a while, the trip just sped things up. The following winter I had one of the hardest conversations I’ve ever had with my doctors, where they essentially told me I had two years to live if I didn’t get a transplant.
The next two-and-a-half years that I waited were the hardest two-and-a-half years of my life. I – and my family – ended up living from event to event in my life. At the time I got my transplant, it was November and we had all been looking forward to Christmas, although it seemed a long way off. New Year was only a week later, but that seemed even further. My brother’s birthday is at the end of January and I know my family were trying to work out whether or organize a party at home so I could be there or a party at the pub because they knew I wasn’t going to be with them.
Obviously, it all ended happily for me. But I’m here to tell you that transplant isn’t a magic bullet. Yes, I’m better than I’ve ever been in my life: I feel amazing, I can do things I’d never dreamed of doing. But it comes with downsides. I’ve just been diagnosed as diabetic because the anti-rejection drugs I take to stop my body attacking the new lungs have fried and destroyed my pancreas. I know that eventually, the same will probably happen to my kidneys. I wouldn’t change it for the world, but I’m aware that the CF Trust can help stop people going through what I’ve been through.
When I was put on the transplant list, I was told that there was a 50% chance of me getting a transplant, otherwise I would die. That’s quite a stark statistic if you think about it. In fact, I remember vividly a very close friend of mine getting her transplant about nine months before me and I was doing a speech shortly afterwards at another charity event. I was speaking without notes, as I usually do, and I suddenly found myself telling the crowd, “Because Emily’s had her transplant, statistically, that means I won’t”. And that’s the reality I faced.
Since I’ve had my transplant, I’ve lost four very close friends who were waiting for transplants, and that’s hard. Just six months after my transplant, while I was preparing to celebrate my 26th birthday – a birthday my family and I never thought I’d see – about a week before, my friend Sam died.
I’m not here to tell you all to sign the organ donor register – although I will tell you, now, that you should. I’m here to tell you that the work the CF Trust is doing will help make sure that no one has to go through what I’ve been through.
If the research the CF Trust is doing works, no one like me will have to wait two-and-a-half years for a transplant; no one will need a transplant. No one will have to watch their friends die like I have. No parents will have to watch their children die. If you dig deep tonight and do whatever you can to contribute, we can help the CF Trust make sure that we can stop people losing their loved ones.
I’m going to leave you to it now, but there’s an auction coming up. There’s an auction later on and I want you all to bid for things – even if you’re petrified you’ll win it – I want you all to bid to push those prices up. Empty the change from your pockets into the pots on your table.
You’re here to have fun and enjoy your evening, so go to the bar, get some more beers in, enjoy the band, have a giggle, but just remember that you have the power tonight to help make sure no one has to endure what I and too many of my friends have been through.
Thank you, have a great night.”