Thursday 30 March 2023


Out here in the perimeter there are no stars
Stoned Immaculate - Jim Morrison / The Doors

Sorry, this is a rather long post. And excuse me if it is alarming or disturbing to read! Better out than in

Back in ICU, shortly after I came to, when I knew my head had cleared and I was no longer nuts; I made two sweeping claims about my experience and prognosis. Firstly, I was pretty confident that my mental health would be robust enough to avoid developing post traumatic stress (PTSD) - even though it affects somewhere between a fifth and a third of ICU survivors, and my ICU experience was much longer and probably more traumatic than ‘average’ (whatever that might mean in this context). And secondly, I dismissed the significance of the whole episode, pointing out that while it might seem a big deal to everyone else, it was - for me - just another in the long line of myeloma melodramas. Over time, I’m revising both those opinions.

Firstly, although I’m a long way from PTSD, I have definitely experienced an amount of anxiety, which is a component of PTSD. It’s new to me. My mental health is not something I worry about much. I’ve struggled, at times, with stress, but I’m not used to feeling anxious. But right now, each time I push physical boundaries - walking a significant distance, doing an amount of exercise, my first trip back to hospital, my first trips out to the shops - I can feel physical anxiety, my pulse accelerating and my breathing becoming faster and shallower. The breathing in particular is an unsurprising legacy from when I was in respiratory distress. I’m having to learn to consciously manage my breathing - longer, slower, deeper - and with it the accompanying mildly panicky hyper-alert feeling. I’m finding an increased need for both mindfulness and meditation.

Secondly, it is true in one sense that this is just a.n.other myeloma episode. Myeloma melodramas are unrelenting and unpredictable, and they involve a repeating cycle of periods of illness, pain and treatment, followed by rehabilitation and recovery. The last few months fits that pattern. But in another sense, this is very different indeed. I’ve found myself searching out other testimonials of ICU survivors, in order to make more sense of my own. ICU-survival is not just a new neighbourhood in myelomaville. It is a different place, populated by different people with different issues. I’ve joined another of the “clubs you wish you hadn’t joined”, and what I’m dealing with now is Post Intensive Care Syndrome (PICS): a combination of physical, cognitive and psychological problems experienced as a legacy of having spent time in ICU.

Physically, the hole I’m in is deeper than the ones I’ve found myself in previously, so recuperation has been more challenging. Compared to a stem cell transplant, this is harder. That said, I’m making remarkable progress and feeing pretty chipper. My legs are still weak, and my feet swell because my leg muscles aren’t sufficiently pumping the blood back up out of them. I did - eventually, after 5 weeks - get a visit from a physio, and I have a good routine to build up my muscles. I’m pretty confident now taking trips out of the house, and my fatigue seems to be back to normal-for-me, which is very manageable. It’s been physically challenging, coming back from the day when I could do no more than waggle a finger, but it’s a job mostly done. My pressure sores improve too - only one still needs nursing care, and although it has a while to go, it is healing. The district nurses no longer call, and my carer visits cease as of tomorrow. I’m trying to arrange to have the hospital bed uplifted. I’m optimistic that my consultant will assess me fit to restart wonder drug treatment, at my next appointment in two weeks time.

Cognitively, I’m aware I’m a little slow. I’m also aware of a few very specific deficits. I’m suddenly very poor at locating sounds. In hospital I struggled to tell whether it was my machines which were beeping, or those of a neighbouring patient. And I still find it difficult to work out what direction noise is coming from. I also seem to have a lot of trouble sequencing the past - I struggle to remember if things happened yesterday, or last week. I have to manually count days to work out how long it was since I was discharged, for example. It’s weird and annoying, and i suspect it would make me somewhat unreliable, if my schedule were any more complicated than it is, since I have not much idea what’s happening when, unless I look in the diary. I’m hoping these little issues will resolve over time. From what I’ve read, there’s a good chance they will.

And psychologically? The more I’ve reflected on the delirium I experienced, the more profound and unsettling I’ve found it. Listening to others tell their stories, has helped me realise that I had a lot more delirious thoughts and experiences, over a longer period of time. They’re still surfacing in my memory. And I’ve concluded it’s wrong to describe them as “dreams” because they don’t behave like dreams. Dream fade quite rapidly, but these do not. These are memories, it’s just they’re memories of things that didn’t happen. Or at least, of things that didn’t happen as I remember them. Let’s call them madmories. I gave the example, in a previous post, of the “windy legs” experiences I had, triggered by the muscle massaging contraptions on my legs. I’ve realised subsequently that I have madmories involving all sorts of things I must have experienced while sedated, including all sorts of ICU routines: being “repositioned”, being washed, having my sheets changed, and so on. Other more ominous stimuli include the device with which they used to force me to cough up phlegm. And then there’s the restraints that were used on my legs, and also - I now suspect - on my arms. Sometimes sedated people try to pull out the ventilator - which would obviously be a horrific thing to do. And so agitated patients have to be restrained. Did this ever happen to me? My madmories would suggest it did.

I have a number of madmories involving flights, with special sections of the plane for people with respiratory weakness and involving convoluted and frightening experiences with border control where I was required to undergo a range of extreme versions of covid swab-type tests. (Maybe that's my madmory of having a feeding tube inserted?) Some of the flight madmories are really quite exotic, including trips across West Africa reviewing filming locations for TV show commissions, putting down in a sequence of airports in different countries. Was this my brain’s attempt to make sense of the air ambulance back to London?

Many of my madmories involve specific locations, showing I clearly had some understanding of where I was - my journey and the various hospitals and wards in which I stayed. When I was initially sedated I was expecting to be transferred to Miami. Despite the sedation, I must have been aware of the change of destination, as I have a madmory explicitly set in Fort Lauderdale, about trying to escape from hospital, impeded by leg restraints and overzealous nurses. Another madmory is located in an evangelical temple, a huge granite faux-classical monstrosity on the side of a Florida boulevard… your guess is as good as mine as to what inspired that one.

There are madmories of strange other patients, of disembodied characters in the walls and furniture, of bad-actor (in both senses) nurses… all of which I’m pretty confident have some basis in real people. And I’ve mentioned previously the hospital-as-tv-set / medics-as-actors and physiotherapy-in-China madmory universes. I know I answered “China” at one point when they did the “what’s your name? where are we?” routine of questions. At the time it was intensely real. My Chinese madmories mostly share specific details with one ICU ward, down to details of paint colours on the walls, and the locations of sharps bins. And yet they are embellished with jungle walks in the rain (at a time when I couldn’t walk), to reach the remote primary school that, for some reason, was the place we had to go to, for my physiotherapy.

Many of these delirious strands interweave. The ‘TV’ stuff is prominent in the flying madmories and later on in my experience at Kings. The same freaky other patients recur, travelling with me like some psychotic, schizophrenic voices. The sequence of movements by which a pair of nurses change the bedsheets under an immobile patient have featured for me as scenes in hospital-drama tv (both serious and spoof), where I’m the actor playing the patient. They’ve also featured as a form of repeated restraint, where every time I’m about to get out of bed, a team or nurses arrive, quickly put me through the changes, and finish by locking down my legs.

Anything that disturbed my awareness was, I think, a likely source of madmories. I was constantly plugged into IV drips, ECG electrodes, feeding tubes and the ventilator. I know I was particularly irritated by the thing on my finger measuring blood oxygen. In my madmories it sometimes attached my finger to other things in the room and I found myself struggling to disconnect. At one stage it was attached to the back of Marisa's head - the cord somehow becoming part of her hair. Sometimes there were wires and strings all over the place attaching things together all round the room, and it all depended on my finger. I'm sure, in my agitation, I spent plenty of time trying to take the thing off, and having the attendant nurse push it back on my finger. All the time, my brain was trying, it a lunatic way, to make sense of it.

I’ll spare you the details of the madmories I have associated with having a catheter…suffice it to say such madmories exist. And plenty more, to do with all sorts of intrusions and insults endured as a patient in ICU.

It’s unsettling and it leaves me wondering - worrying - quite what an ordeal I went through. I’m no longer confident that I slept through the worst of it. I think I experienced most of it - the endless awfulness, the imprisoning immobility, the weird repetitive routines of ICU - in a state of total confusion, momentarily making “sense” of what was happening to me before losing it again in the fog. I said in a recent post that “other people’s dreams are never interesting”, and yet here I am giving you chapter and verse about mine. Except they’re not dreams. And - as always with Dialm - they’re here with a purpose: partly therapeutic for me, partly to help my friends understand me, and partly on the off chance that someone else who has been through ICU might find this post and feel a little comforted about their own delusions. I’ve certainly taken some comfort, of late, in the stories of others I’ve found online

Potentially useful resources:
ICU Steps Charity supporting survivors and their families
ICU Delirium Some patient testimonials
A Waking Nightmare Short video of patients and medics experiences

Despite all this... I'm well. It would take more than a little psychosis to stop me! Off to Sussex for the Easter break, and can't wait.

Monday 13 March 2023


Yes I've been black, but when I come back you'll know
Rehab - Amy Winehouse

The pace of my recovery is increasing

Three weeks at home, and I'm making remarkable progress. The one upside of this episode is that when I set myself goals, I mostly find I get there quicker than I anticipate. It's only seven weeks ago I could do no more than waggle my index finger. Now I can climb the stairs. As a consequence domestic life is getting easier. I am sleeping in my own bed. I can use the shower instead of just having a flannel wash. I can eat at the dinner table with my family. Meaningful milestones.

Being a hospital veteran, I also start each day by taking my own 'obs': temperature, blood pressure and oxygen saturation. The last of these being particularly important if I'm going to get an early warning of any future respiratory problems. And I promised myself, when I was stuck in ICU, that I would create space in my life for a little more self love. So, I'm enjoying adding moisturiser and fragrance to my morning routine. It all contributes to improving my life, and family life, Here's a mugshot to show the moisturiser routine is paying dividends...

I feel I know the NHS better than most. As well as being a regular in the haematology department and the clinical trials unit, over the years I’ve seen urologists, pulmonologists, cardiologists, orthopaedists, and several types of neurologist. I’ve had chemotherapy and radiotherapy. I've had stem cell harvests and stem cell transplants. I’ve had day surgery and in-patient surgery, and had ambulatory care as well. I’ve had planned hospital stays and unplanned hospital stays. I’ve spent many weeks in ICU. In total I've slept in 6 different wards at Kings College Hospital (and a few more, as you'll be aware, somewhat further afield). I’ve had umpteen MRIs, CTs, PET scans, X-rays, bone scans, biopsies and blood tests.

Most of my care has been in hospital, and most of it is top class. The admin can be frustrating, and it often involves too much waiting, but mostly it works ... However ... The process of discharge into community care has been a new experience for me. Verdict? Appalling. Disorganised. Unreliable. Palmed off from one contact point to another. Put on one waiting list, and on reaching the top, finding myself referred on to someone else, who simply puts me on another waiting list. Kafka-esque. Through-The-Looking-Glass-esque. It has really dented my opinion of the NHS. Since I came home, I’ve pretty much had to fend for myself. It took over a week to get a district nurse to visit, despite them agreeing my pressure sores need to be seen by a nurse every second day. And I'm still yet to see either a physio or an occupational therapist.

In fact the structure of the physio teams seems to demonstrate all the worst aspects of the NHS. We all know the NHS is stretched but this is about structure as much as resource. Each ICU ward in Kings has a team of four physiotherapists, but the four haematology wards share one physiotherapist between them. Out here in the community, I've been directed to no less than three different physio teams (all with cryptic names) none of which seem capable of actually turning up at all. So as one moves from ICU -> ward -> home, the physiotherapy service simply withers away. I'm having to make up a physio routine of my own.

As part of my personal routine, having conquered the stairs, the next logical step (boom boom) is to venture outside. I had a hospital appointment on Friday, which was my first time out of the house and since then I've been on two walks to the park. I don't get much further than the park gate, so far, but merely being outside is a thrill. I've barely seen the outside world in almost three months.

The hospital update is that my consultant thinks I should restart wonder drug treatment next month. Which raised the issue of ongoing side effects and ongoing infection vulnerability. I'll find out, soon enough what side effects I'm left with, now that I'm infection free, and without all the other complications I was dealing with in the autumn (e.g. radiotherapy). Maybe it won't be so bad. Fingers crossed. And they're proposing to put me on monthly immunoglobulin infusions - donated antibodies, basically - which might reduce the infection risk a bit. Hopefully, the warmer weather will help too. Ultimately, the Dr thinks I'll relapse if we don't continue to treat - and whatever problems I might have, they'd all be worse if my myeloma was active. For now it continues undetectable. Hurrah!

It has been lovely catching up with so many people I hadn't seen for ages. Thanks for the visits. I hope to be capable of "going out" relatively soon now. And special thanks to the team of people who have been cooking food for us - it's one sure-fire way to really help.