Saturday 18 February 2023

Windy Legs

Strumming my pain with his fingers
Killling me softly - Fugees

Another myeloma melodrama

On 16th December we were booked to fly to St Lucia for a Christmas holiday - compensation for having had our summer restricted by my plasmacytomas and the side effects of my treatment. I was a little nervous about getting on a plane because I have felt so consistently dodgy over recent months. But nothing had changed in the last few weeks, so we set off on our holiday as planned. By the second day there I was feeling less good. By the fourth I resorted to calling the doctor. When she measured my blood oxygen and it was only 84% (it’s supposed to be >95%), I knew I was in trouble. So off I went to the hospital for oxygen support.

Marisa and the boys attempted to continue the holiday while I took up residence in the hospital. Initially, I hoped to recover in time for our journey home. But it was soon clear I was getting worse not better - requiring more and more oxygen. So we struck an alternative plan. Marisa and the boys would return to London as scheduled. Meanwhile, my Dad (the big hero of this story), would come out to join me. When he arrived, he and I decided pretty quickly that we needed to get me off St Lucia urgently, before I got any worse, and that this would require an air ambulance. A little research told us that (a) an air ambulance direct to the uk would not be possible - it’s too far for a small plane - so the first stop would be Miami, and that (b) organising the whole journey home would be complicated and it would take some time to put it all in place. Therefore the best strategy in the short term would be to just get to Miami, where I could be in a better hospital while we sorted out the rest of our plan.

Slightly to my surprise, and much to my relief, our travel insurance company was quick to accept liability. I had feared that, upon reviewing my full medical history they’d say I was uninsurable and find a way to weasel out of liability. Instead, they merely asked what channel I had purchased the insurance through, because the medical declaration I’d been required to complete was superficial in comparison to the questions they’d have asked if I’d bought from them direct. They implied they’d have asked more screening questions about my myeloma status, and by implication probably not have offered to insure me. I explained that I had used a price comparison site. I can only assume that in their enthusiasm to compete in the price comparison market, insurers have collectively oversimplified the screening process. I knew when I bought the insurance that they hadn’t asked me particularly pertinent questions. But importantly for us, I had answered truthfully the few questions they had asked. So the insurance company agreed they would foot the bill. The alternative would have been disastrous. If you’ve ever considered travelling uninsured, or buying insurance without declaring your medical history, let this story be a warning. I don’t know exactly what my repatriation cost, but I estimate it must be in the region of half a million pounds. To see why, read on.

The air ambulance company said they couldn’t transport someone with my oxygen needs unless I was put on a ventilator. So the next day I was sedated and intubated, and I don’t remember much of the next parts of the journey. We flew to Florida - Fort Lauderdale, rather than Miami, and checked me in to ICU in a proper world class hospital. Thank goodness, because at this point my symptoms took a severe turn for the worse. I had flu as well as pneumonia and a couple of other infections opportunistically joining for the ride in my failing lungs and my defunct immune system. I also developed emphysema, which made further flying impossible. We were stuck - Dad and me, but I was completely out of it on sedation drugs - for three weeks. My Dad had to live a daily routine of hospital visits and conversations with doctors, and fill the rest of his time alone, as I was in no state to provide company. He was focused solely on the question of when - indeed if - I would be well enough for them to move me, and whether the air ambulance would be available when we needed it. My sister, who lives in South America, flew up to keep my Dad company. Marisa attempted to return to “normal” work and school routines with the boys. I just tried my best not to die. In some ways I had the easy role at this stage as I was largely unaware of what was going on. I don’t know how Dad, or Marisa, or my kids or my Mum, coped - the stress and anxiety must have been overwhelming. I was in “acute respiratory distress” (ARDS), which is often fatal, and the doctors described my situation as “very critical”. My lungs were full of phlegm and gunk and simply unable to provide oxygen to my body.

After three weeks and a couple of false starts, things had finally calmed down enough to get me in to an air ambulance for the journey back to London. The infections were under control and the emphysema had cleared. We were able to fly. “We” being a team of three pilots, two doctors, a nurse and me. There wasn’t even space for my Dad - he had to go to Miami International and get on the next commercial flight. Because it was a small plane, and because my residual traces of emphysema required us to travel at low altitude, the journey had to be made in a series of hops. Florida-Maine-Newfoundland-Shannon-London. All rather glam, but I was oblivious.

They brought me from the airport to Kings by ambulance, and straight in to the ICU. The NHS has a different attitude to sedation, and uses less drugs, so I returned to consciousness within hours of arriving at Kings. But the drama wasn’t over. I stayed on the ventilator in Kings ICU for a few days, then had it removed, and then had to have it put back in. By the time it came out for the last time I had been in hospital for six weeks, and immobile for most of that time. I had a couple of very nasty pressure sores on my back and derriere, and had lost an enormous amount of muscle and movement. I could do nothing more than waggle my index finger. The rest of my body lacked sensation or any ability to move at all.

Plus the legacy of heavy American sedation was becoming clear. (The NHS consultants were horrified to see quite what had been administered to keep me under.) My eyesight was blurred. I couldn’t concentrate or follow a conversation. I had visual hallucinations, and - worst of all - I had a series of delusions which seemed very real to me. For a while I thought the hospital was in China because I could see a panda in a hammock in the corner of the room. Then I worked out that half the hospital was a film set and half the staff were actors - but you couldn’t tell which half. Apparently I got agitated about dogs in the wards, spent a while racing F1 in my bed, and shouted inappropriate things. I must have been a nightmare to treat, sometimes accusing the nurses of being actors and refusing their requests. I pulled my feeding tube out… and so on. And through all this I was confused, trying to work out what was real and to understand the narrative of my experience.

Apparently delirium is quite common if you’ve been out of it for a long time, and in ICU for a long time. The brain has had far too long with little stimulus from the real world, and has wandered off into its own fantasies. For example, hospitals worry about patients in bed getting blood clots in their legs, and for a long while I had a pair of things that looked like electric powered velcro leg warmers, which periodically apply pressure up and down the leg. It’s a weird sensation. My sedated brain interpreted this as a hurricane swirling round my ankles, and I had a lot of dreams where the atmosphere was divided in two layers. Below the knee was a howling gale, above was calm. Hence the sensation of living in a world of windy legs (that’s win-dee not wine-dee). And the boundaries between dream, fantasy and reality were totally blurred. I didn’t know whether or when I was experiencing reality. I could give you more examples, some of them quite macabre and creepy, but other people’s dreams are never interesting - so just take my word for it that my perception was distorted, confusing, mad, for several weeks.

My head had finally cleared by the time I came off the ventilator, but by then, after so long without moving, my final ordeal was, and is, to regain physical ability. It’s a slow linear process, gradually being able to do more and pushing myself to the edge of my ability in order to, over time, extend myself. As of today I can walk short distances with a zimmer, which is remarkable progress, really, from barely being able to move at all three weeks ago. (My situation is pretty similar to that of someone who had severe covid but survived.) I’ve finally been discharged from hospital after 59 nights (not that I was counting, or anything), but I’m a long way yet to get back to normal. I have a hospital bed to sleep on in the front room as I can’t get up the stairs, and a special chair, which I’m only allowed to sit in for short periods anyway, to try to give my pressure sores a chance to heal. I will have daily visits from a carer for at least the next four weeks to help me wash and dress, and regular physio to get me up the stairs and to support me as I relearn how to do practical things like use the kitchen. So, “normal” won’t come until at least April.

Quite the drama eh? Nearly nine weeks in hospitals, two air ambulance journeys, lost a quarter of my body mass, several points where I was perilously close to not pulling through, and now an extraordinary long slow recovery. And all because the elranatamab has wiped out my immunity. What all this means for treatment, going forward, is something we can only think about when I’ve recovered some more. But the good news is that right now my myeloma is undetectable. It’s a wonder drug, but one with a wicked sting in its tail. In the short term my ambition is to be able to wash myself standing up in the shower, and to be able to climb the stairs and sleep in my own bed. You learn to appreciate the basics when you are deprived of them for so long. Personal highlights in recent weeks have included my first glass of water after weeks of nil-by-mouth and fluids by IV; and my first trip to the toilet, after weeks of commodes, bedpans, and - in ICU - simply fouling myself in bed and having to be cleaned by the nurse. When you’ve reached the point of nothing, then the basics - the stuff we all take for granted - take on a whole new value.

Myeloma: never a dull moment.