One new horizon

This afternoon I had my first post-hospital virtual clinic. Normally this would have happened on the ward, a few weeks after discharge. But Covid-19 temporarily shuttered the CF clinic at my hospital, the Royal Brompton and Harefield, and all but the most essential contacts were put on hold as the Brompton became one of the elite frontlines in the fight against coronavirus.

All in all, the experience was a good one: a clinic visit that would normally have taken a couple of hours, plus the same again in travel, was all done and dusted in around 20 minutes. Almost as soon as it was over, the hospital pharmacy called to confirm my prescriptions: these would arrive in the post in the next couple of days. The cherry on the cake – no long wait at pharmacy either! Here’s hoping that innovations like this, which were being researched but have have been fast-tracked by the pandemic, can become part of standard clinical care, not only for CF but other chronic conditions too.

But the really big news was that my doctor said I could go out once more. Not to the shops, or to travel, or to work; just into the open air. I have to take every precaution, and I must stress that this advice should not be interpreted as wider guidance for anyone else on the vulnerable list; everyone’s case will be different. But in my doctor’s judgement the risk is negligible in an open space, and the benefits to my well-being far outweigh that. In fact, she said, I should go out.

I had asked in hope, much more than expectation, and I had asked for an honest answer, laying the ground for a no, even wishing for one. Part of me didn’t want to know it was OK. At home I’m safe, and there’s no risk assessment to make. Having the option to go out again would require decisions, would complicate things.

But instead the answer I got was, ‘Go outside. Get some vitamin D. See the sky.’ Of course, I need to be careful. I should go somewhere open, away from people. Don’t talk to anyone, stay more than 2 metres away from people. Wear a mask if I have to go past a group of people. Get a T-shirt, suggested my sister-in-law, with the words ‘Stay the Fuck Back’.

I’m going to walk down to the Thames, I reason, along the path to the Barrier. I’ll go early in the morning. The day before, Liz can do a dry run to see what conditions are like, I suggest, saying everything I can to show I am treating this unexpected possibility with appropriate care. The main areas of concern will be the junction at the end of our road, by the station; and crossing the Woolwich Road.

When I’d finished the video call I hung up and took a breath. I went upstairs to Liz and, half-whispering, as though it was too fragile to be spoken out loud, I told her the news. As she hugged me, tears welled up. I hadn’t expected such a strong reaction in myself. I’ve been handling lockdown pretty well, I think, but I realised I had been bottling up more than I knew. Something rushed in, the taste of a different air, a coolness, a memory, and it all caught up with me. Quickly we made plans. I hedged at first, tried to avoid this new reality. But we soon started dreaming of a day – not long away – when my family could show me all the secret places they have been visiting these last few weeks.

For now, I’m just taking one walk, on my own, down to our grubby, unloved stretch of river, with its weeds, its disused piers and its dusty scrap metal yards. It will probably blow my mind.

Sent to hospital – by Symkevi!

[NB this post was begun around ten days ago, while I was still in hospital. I’m out now, and have been for a few days. I haven’t bothered to change the tenses though.]

I’m back in hospital. I’ve got an IV line in my arm, a ventilation machine by my bed and an antibiotic drip that comes round three times a day. I’m supervised by physios, dieticians, nurses, doctors and pharmacists. When I get out, I’ll have been here a week and half, and then there’ll be few more days at home with the antibiotics.

Yet my position isn’t as bad as it sounds. Normally when I’ve been here I’ve been ill – chest infections catching up on me, that sort of thing. This time I’m here because I’m doing quite well. The treatment is much the same, though, like a modern-day version of that scene with the doctor in Blackadder 2: leeches for everything.

The author (r)

Two months ago I started on a new CF drug called Symkevi, a relative of Orkambi, which was approved for use on the NHS last October after a long campaign by the CF Trust, MPs (in particular Ian Austin and Sarah Wollaston), and CF patients and parents. The day of the news was one of huge celebration. Unexpectedly, I was in Ibiza when I heard the news. Away from Pixar films I don’t cry much, as a rule, but I did that day. A lot.

With several thousand eligible CF patients in England in the line to start the drug, rollout of Symkevi was slow and steady. (According to Twitter some cystics are still not through the process.) I started on 21 January. The medication arrived at my door the day before, and I unboxed it with the same sense of wonder and excitement I used to get tearing the cellophane wrappers off CDs on the tube home from teenage trips to Soho record shops. I played with the clever cardboard packaging. I took in the design. I read every word on the box. I took the first tablet at 9am the next day – sunshine yellow for the morning dose, cool blue for the evening – with awe and trepidation. To be granted something that you have desired for so long; into which thousands of people have invested money, time, brilliance, ingenuity and real blood; that your loved ones hope and believe will transform you; and that you cannot be sure will even work. All the while, scrutinizing everything your body is doing, to an information-warping degree.

The response from my body was almost immediate. Hours after that first tablet I had a spell of dizziness and nausea just as I set out to collect my son from school. Strange, I thought. Did Peter Parker feel the same thing when the radioactive spider DNA started to work through his body? In the following days, the headaches began, and a general sense that I was coming down with something. My cough got worse, and more productive. Over the first weekend I had to cancel appointments, including a Riot Ensemble Trustees meeting, because I felt so washed out. Yet I wasn’t worried. I knew that this was all relatively normal. Symkevi works on such a fundamental, cellular level that it inevitably comes with a range of side effects, from headaches to insomnia to bowel trouble to liver function. What I was experiencing was normal.

I drew great strength from the online CF community. One of the upsides of so many of us starting on the same drug at roughly the same time is that people were reporting their symptoms and side effects on a daily basis, sharing tips and advice. Was what I was feeling normal? A few minutes on Twitter confirmed that yes, it was. As I went through those first days, I took great encouragement from things like @NormalLife’s Symkevi diary of his first week on the drug. I empathised with Kate Eveling’s anxieties. I scoured the #symkevi hashtag for every snippet of information or perspective I could find as though it was the morning after seeing a life-changing gig.

After that first weekend, the side effects calmed down a lot. I had a few days when I felt really good. The headaches and the productive cough were still there, but in between I felt better than usual. It felt like the last day of a heavy cold: when you’re not out of the woods, but you can feel the virus leaving you. I went back to my Couch to 5K programme. After a winter away from running I started back at the beginning, but I was excited to see what difference Symkevi was making to my aerobic fitness. In the event, I felt almost no different. Hard to tell any effect at all; but I was so out of shape anyway, I told myself, maybe that was asking too much.

Gradually, though, I became less and less aware of any benefits to Symkevi at all. After three weeks I was still feeling under the weather, and I’d picked up a mild cold as well, which wasn’t helping. Nevertheless, I went to my regular clinic appointment on 18 February – my first since starting Symkevi – in an optimistic frame of mind. Even before I’d started I’d posted an unusually good lung function result (64% of expected FEV1), and I had good hopes for improving on that, or at least maintaining that high. When I was weighed and was found to have put on an unprecedented 4 kilos since December, a mad part of me even saw 70% as a possibility just over the horizon, somewhere I’ve not been since my early 20s.

What I wasn’t prepared for was a drop. Certainly not a big one. Of three tests, the best I could blow was a measly 55%. My overall lung capacity also fell off a cliff, from 88% expected in December to 65%. These were numbers that would ring alarm bells, I felt sure. I waited for my consultant with dread.

I love Dr J. I have had several consultants in my time at the Brompton, and he is one of a few I trust absolutely. This is important. When I explained my disappointment he wasn’t fazed, and I was enormously reassured. (Three weeks later and I am still drawing on his reaction.) It’s not unusual, he said, for people’s lung functions to dip after starting Symkevi. Really? I thought.  No one is talking about this on Twitter. Everything there is sunshine and light and 10% bumps in lung function. Yep. Because the way Symkevi works is that it loosens all the mucous that is stuck to your airway walls. In my case, there is a lot of it, and it is sticky. It’s attached to my airways like concrete render, with such a tenacity that you almost don’t notice it having an effect at all. (At least superficially.) What Symkevi has done, in my understanding, is take a jackhammer to all that render, and now it’s swilling around all over the place, getting in the way. Hence the increased level of obstruction showing up on my spirometry.

Lung function is not the only measure we can use, said Dr J. It’s not even the most important one – which was news to me! He pulled up the x-ray I had had done that afternoon. For the first time in a very long time, it showed noticeable improvements. Even my untrained eye could see: the right upper lobe was markedly clearer, and overall there was a sense that the thick spidery whiteness that covered the rest of the picture was a layer or two thinner. This was very encouraging.

So, said Dr J., how about we bring you in for a few days? Since the Symkevi is doing its job loosening everything in your airways, how about you come onto the ward for some intensive physio, to make the most of this moment? OK, I said, I see the logic. Presumably I won’t need an IV while I’m there? Oh no, we’ll put a line in anyway. Might as well get some antibiotics in you as well, to help the effort. But I’ll be able to come home? Yes, after a few days.

And that is why I’m back, on Foulis Ward, surrounded by equipment. Symkevi is working well: let’s step on the accelerator and give it all we can.

Always on brand

Update since drafting the above: I’m now back home. I came back in a taxi on Friday, four days ago, scrunching an alcohol wipe in my hands all the way. Being in hospital while the coronavirus outbreak spread everywhere outside was frightening. But I’m home, I’m staying home, and I feel relatively safe. I feel lucky in a way: a week later, and I would have been terrified to make that journey. And at least this way I’ve been put into the best possible shape for whatever there is to come. I’m going to be home for the next few weeks at least with lots more time to write. For the time being, this blog may become as much a diary of that time as it is a place for me to share thoughts on contemporary music. No doubt it will be a bit of both, and me being me they will leach into one another anyway.

Take care everyone, and speak to you soon.