Timeline
For possibly three years I was seriously ill without knowing why or how. I only found out what has caused it in December 2021.
Just to be clear. I was treated for cancer in 2018. I started to become unwell in other ways in 2019, but did not have a clear diagnosis, or appropriate treatment plan until December 2021. Unfortunately the immunotherapy treatment for cancer (which was successful) had caused me to suffer a type of TB infection which affected most parts of my body, and brain. This created a good deal of distress and confusion. In the first posting in this blog, this was expressed through the feelings and language I used then before I found out what was wrong. I have therefore left some of what I originally wrote unchanged.
Here is what I wrote a year ago
I woke up one day in 2020 in a hospital bed. I think I’d woken up in some way before, possibly a number of times, but I wasn’t sure. I found that I had lost some teeth. My arms, legs, chest and shoulders were very thin and my skin was wrinkled in ways I couldn’t remember seeing before. What else? My head felt shrunken, my hair was thin and brittle, I had a catheter to drain urine into a large plastic bag hooked onto the bed. I had a large cut on my left arm, and eczema on the back of my right hand, into which a canula had been inserted. Part of my face, and some fingers felt completely numb, and the tips of my toes hurt.
What had happened to me?
As I went on to say: ‘I knew my name, so apparently I hadn’t had a catastrophic stroke or brain haemorrhage. But I couldn’t remember where I lived, my address, or what my home looked like either from the outside or inside. I knew I was married, though I had no memory of whether or how supportive my wife was or had been. I did have many memories of events, people and places, which I somehow knew were illusory. I’m pretty sure that I knew very quickly that some of these memories were of hallucinations’.
‘I was hot and very thirsty, I was fatigued and weak, and what was left of my muscles ached. I knew I was in a large hospital but didn’t understand why nurses and medics were dressed so strangely and why they wore face masks and full-face visors. Some patients were shouting or moaning in distress and I realised that I felt lonely, vulnerable and rather scare’.
‘This is now about 7 months on from when I woke up for good in hospital, and though I still can’t be sure what happened when or that I had ‘properly’ woken up back then, as far as I can tell little of what I’m writing here is fiction. Yes, getting your tenses right is tricky when you’ve had delirium, seizures, and hallucinations … especially when your condition impairs your consciousness, cognition, and memory and makes your brain invent false worlds and stories.’
So what was the condition?
This is unchanged: ‘Sorry to be annoying but the truth is that we still don’t know, not really, not properly. While I was in the large general hospital I was told that I had non epileptic seizure disorder; my wife was told the same. But a few months after discharge a senior neurologist from the hospital explained to us that that this diagnosis had been wrong. In his view I had developed seizures as a result of fevers caused by one or more infections. Neither he nor we know what bacteria, viruses or indeed fungi were ultimately responsible. So what seems to have happened is that something (or more than one thing) had made me very ill from early 2020 onwards.
‘Yet I have no recollection of being able to talk to the medics about the shock that I felt about finding myself in hospital in such a poor state, nor about my fears that the condition might have life changing consequences, nor indeed about how I ended up in hospital for three and a half months. I now know that many hospital doctors worked hard to find out what was wrong, and arranged loads of tests and different treatments to help me recover. But I still feel scarred by the experience of having been ill, hospitalised three times while more or less unconscious, and then bundled out of hospital with drugs but no discharge plan and with no single medic in charge of coordinating my care’.
So what are the other important points?
There is almost certainly too little attention paid to introducing people to their hospital ward or unit. In my case for example I ended up in four different wards over time, and because of my illness, it was difficult for me to understand or appreciate why I was there, and what the medics were going to do and why. In one ward I was quite scared for a few days because some of the other patients appeared to be disinhibited and mentally unwell. Finding oneself in hospital can be traumatic after all, and it’s important for patients to feel safe in the broadest sense.
Secondly, particularly in these Covid times when visitors aren’t normally allowed, patients are in danger of being more vulnerable than usual and dehumanised too. In my case this resulted in me desperately wanting to see greenery and ‘normal’ everyday human life; I was also in great need of hearing non-medical conversations. Yes, I know that all of the shiny machines with their gauges and tubes were used to help me in some degree, but it also made me feel small, something in a bed that needed to be operated upon. Unintentional dehumanising factors included some rather fearsome procedures (regular injections around your middle anyone?), the unexplained taking of blood, and having canulas stuck into your hand, sometimes by masked people whose name and function you don’t know.
Then, depressingly, there is hospital food, or what passes for food. I found that mealtimes were very important because not only do they relieve the boredom and lack of stimulation in hospitals (I actually looked forward to being wheeled to other wards and departments for tests!), they also represent a promise of better health through good nutrition. But extraordinarily the food wasn’t good, it was sometimes actually inedible, and sometimes you got a different meal from the one you ordered, for example. Like too many people, I suffered from malnutrition in hospital and it impeded my recovery.
A fourth beef has to be the divide between different healthcare specialisms – why on earth does it still seem so hard to make holistic treatment and care a reality?
Above all I want to ask politicians and health professionals whether it is acceptable for a person, in this case me, to leave hospital with anaemia, gut problems, open pressure ulcers, serious muscle wastage and more, even when some of these weren’t down to my illness or condition. Doctors, thank you for helping me when I was so ill, but surely you can’t be content with this state of affairs.
And another thing…
In April 2021 I managed to see my, very experienced, dentist after a tooth had broken. She was appalled at the state of my teeth and gums. She questioned me closely until, after some time, she asked me whether I’d taken any anti-epilepsy drugs. I said yes, and she replied that it was well known among dentists that these drugs caused swollen and bleeding gums, and tooth loss!
So I checked, and it’s true that many anti-convulsants cause gingival hyperplasia. Yet I know that I asked medics and nurses repeatedly why my gums were sore and bleeding and why some teeth were missing, and I know also that I never had an explanation or any advice. Now, some eight and a half months after I was first put on this drug (in hospital, while semi-conscious) I finally know what had happened to my mouth.
Once again no doctor had as much as mentioned this to me…
Yes I know that I was being treated for infections, fevers, delirium and seizures, but really could no doctor or nurse in the hospital or the community take my teeth and oral health seriously? Don’t they matter?
Instead I’d been left on my own for months in a sea of unknowing, wondering what the hell had happened to me…(original words).
“You may not control all the events that happen to you, but you can decide not to be reduced by them.” – Maya Angelou
