Jo's Blog - "I think of the hospital as my second home. I call it my ‘South Kensington pad’ " I’ve been a patient at Royal Brompton for nearly 30 years. I have cystic fibrosis and CF-related diabetes. I think of the hospital – and particularly Foulis ward – as my second home. I call it my ‘South Kensington pad’ – not a bad place for a second residence! For me, it’s a place where there’s a high chance, when I first walk along the corridor of the Fulham Road wing, from the Dove Street entrance, I’ll hear singing; either from the porter or the phlebotomist. It’s also a place where, as soon as I arrive, I feel safe. Singing and safety: you can’t ask much more than that from a hospital. And critically, I’m made to feel that I’m not just an NHS number; I’m an individual, known well by my CF team, with my care needs expertly and compassionately met. I was transferred to Royal Brompton for my adult care, soon after my 18th birthday and just months after major surgery for meconium ileus equivalent – the return of the blocked bowel I’d been born with. I’d been under the care of UCH as a child, along with my sister, Kate, who was just 17 months older than me. I was born with meconium ileus, one of the most common symptoms of CF. When I was born, Kate had yet to be diagnosed. ‘Failure to thrive’ was the term given, until my diagnosis led to her being tested. She, too, had CF. When I first moved to Royal Brompton, I didn’t need in-patient care for another four years. For Kate, it was another story. Over the next 10 years, she spent weeks, eventually months, on Foulis ward as her health deteriorated. That’s when Foulis became like home. The nurses – some of whom still work there today – were friends. And it was Foulis where, in April 1999, Kate died. The heart and lung transplant she was on the waiting list for didn’t come in time. That was the day the Brompton and Foulis ward took a place in my heart that will never be lost. When you lose your sister to the same disease as you it’s terrifying. Kate was 28 when she died; I was 26. The staff who cared for her were incredible – one nurse is now ward sister and someone I always seek out when I’m admitted. There’s a bond that’s still strong. She makes me feel everything will be ok. When the news broke on March 23rd that cystic fibrosis (and diabetes) was classed as one of the ‘serious health conditions’ that meant we were ‘extremely vulnerable’ if we developed Coronavirus, it felt like everything was anything but ok. For the week prior to that announcement, I’d already been self-isolating, but my husband had still been doing our supermarket shop and collecting my medicines from the chemist. I’d felt incredibly anxious about him doing that, but we weren’t set up for anything else. Once full social shielding was advised, I began to feel slightly safer and less fearful about catching the virus. As the weeks went on I felt helpless. I wanted to do something to feel I was helping the frontline NHS staff that were working so tirelessly for all of us, and putting their own lives at risk in the process. When I read about the London Marathon launching its 2.6 challenge for Sunday 26th April – the day that would have been the London Marathon – it dawned on me I could do something, however small. The aim of the alternative fundraising event was for people to do some form of exercise for either 2.6 minutes, 26 minutes or to use the 2.6 as a distance to hit. The aim was to raise money for the charities that would be losing out on funding they’d normally receive from the London Marathon. I’ve had to use oxygen for walking and exercise – known as ambulatory oxygen – since November 2017. My aerobic exercise tolerance is low, but I can do things for 2.6 minutes, and I knew if I did multiple things throughout the day I’d feel like I’d done something useful. It was settled; I was going to raise money for Royal Brompton and Harefield Hospitals Charity. Deciding what to do was easy. My main form of exercise, pre-Coronavirus, is my weekly Latin and Ballroom dance lesson, with my husband, Gavin. Yes, I dance with a 1.75kg oxygen cylinder on my back! When I discovered a while back that one of my CF nurses was taking tango lessons, I wanted to talk ochos and ganchos with him, not airway clearance and antibiotics! Gavin and I have been learning for 11 years, and we love it, but half the time our teacher, Maxine, must despair as we launch into a dance asking, ‘Which foot do we start on again?’ I settled on committing to 26 Cuban breaks – a cha cha step and 26 triple-jive basic steps. All easy to do in a small space. I decided to add another form of exercise that I practise at home to my challenge: hula hooping. The longest I’ve ever managed to hula for in one go is around 15 minutes so, although I committed to hula-hooping for a total of 26 minutes, I knew it would need to be done in a few separate sessions. Lastly, I committed to 26 plies in ballet barre, another exercise class I had enjoyed pre-lockdown. In a moment of madness, I chucked in a combination of 26 forward rolls and cartwheels – many moons ago I used to be a gymnast, and even took it up again in my early 40s, only to have to stop it once my oxygen tubing and cylinder posed too much of a hazard. Settling on my fundraising target of £262 (to tie in with the name of the challenge) I told friends and family by setting up both a Facebook fundraiser and a JustGiving page. Donations began coming in – there was no backing out now. And then there was a hiccup. My only trip out of my house during lockdown had been a dramatic, unexpected, and certainly an unwanted one, as I was blue-lighted by ambulance to resus at my local hospital. For some, still unknown, reason, I’d gone into SVT (supraventricular tachycardia) – my heart rate topping 183 beats per minute. Nine hours later, having witnessed doctors and nurses in full PPE along with superb care and teamwork (with a consultation with my CF team at the Brompton) I was safely home again, the Coronavirus swabs that were required before discharge was allowed winging their way to a lab for testing. Post-resus, my blood pressure had decided to play up, too – with several episodes of it dropping so low that all colour drained from my face leaving me ghost-like white, dizzy, faint and nauseous. On the advice of my CF team, I booked a phone appointment with my GP surgery and, after mentioning my planned day of physical activity, was advised to only carry out the tasks where I remained upright! Announcing this change to the friends and family who’d already donated, one friend suggested that her competitive-level gymnast daughter, Freya, would perform the forward rolls and cartwheels for me. Another friend then suggested we turn the day into a ‘Team Willacy’ challenge with people doing whatever took their fancy as part of my fundraising effort. And that’s how the hot, happy 2.6 challenge day evolved. A day of sunshine, friendships, teamwork, exercise, endorphins and group support, all culminating in raising £2524.80.I achieved my 26 minutes of hula-hooping in just three sessions, I danced my cha cha and jive steps in my garden, donning my sparkly silver dance shoes and shorts – a strange combination but I’m sure the mercury hit 26.2 degrees centigrade to boot! I managed 26 step-ups and 26 thigh-burning plies with leg kicks from ballet barre. Gav and I threw in a full jive dance for good measure then Gav finished the day with a 2.62 mile run! My ‘team’ excelled themselves. Friends from aged six (Seth and his cartwheels) to age 70-odd (my fabulous friends from our dance class) did their thing. My dance teacher, Maxine, who could motivate a snuggle of sloths (yes, I did have to google the collective noun for sloths!), got her entire dance school, Apton Dance, from kids to adults, dancing. I was beyond moved – and yet everyone was thanking me for getting them moving and having fun for a day in lockdown. Every day, bar one has been a bit dull in comparison. The 2.6 challenge day will forever remain a highlight of my lockdown. It did me good. And the other day of excitement? The day my Nuvoair arrived from the physio department at the Brompton to allow me to test my lung function at home. That might not sound terribly exciting, but since December last year, I’ve been on a Managed Access Programme (MAP) for Compassionate Use for Trikafta, one of the life-saving drugs for CF. The drug that’s still yet to be licensed here in the UK. When I started on Trikafta, my lung function was 34%. In fact, my LF had been under 40% for the last 10 years. In January – the last time I had an outpatients appointment – my LF had increased to 41%. I was over the moon. So, once I’d set up my Nuvoair, I attempted my first lung function test in five months. I had thought it might be a little down, not being able to get outside of my garden to exercise since mid March. When the percentage popped up on the screen, I could not believe my eyes. My lung function had increased to 52%, a figure I’ve not had since 1995. It was a lockdown feeling that will take some beating. In fact, it’s thanks to Trikafta, I believe, and how well I feel (I hope I’m not tempting fate) that I’ve felt as relaxed as I have throughout this period. Now, as lockdown continues for those of us with ‘serious health conditions’, I still think about the consultants, nurses and physios from my CF team daily, worried for how stressful and exhausting their work must be right now. I have one hope – that their resilience is as strong as I’ve always believed it to be and that they’ll all still be there when I and others with CF at the Brompton, can return to my second home to thank them for getting us through this.