News & views Members' blogs Of danger, bereavement, an erroneous terminal diagnosis and near-death in Brazil A blog by Diana Rose. I don’t often write personal stories and am not even sure why I am writing this – some kind of provisional settling of accounts maybe. And it’s not a good subject for a New Year but we don’t control time. The story starts on 2nd December, 2016. I was in Australia working but a couple of forwarded emails convinced me that someone had put themselves in such danger I had better return early and try to resolve it. I left Sydney in 36 degrees of summer an arrived in London in a zero winter freeze. I sorted the problem – the details do not matter. The following Sunday I received a phone call from my sister in Scotland saying my mother had been hospitalised. This was not new. She had two serious and numerous short (too short) admissions for COPD. I caught a plane the next morning to find her agitated and upset at the quite unbelievable ways my family up there were behaving. The consultant said he would discharge her to my sister’s care and I told him in no uncertain terms why he could do no such thing. Asking if I was the eldest, he said “you take Power of Attorney now, and I will keep her here”. First obstacle – I have been sectioned several times and did not know if I counted as ‘of sound mind’. I called my psychiatrist and she reassured me all was fine. I did not know it but this was to be her final illness. I spent Christmas on the phone to doctors of varying levels of seniority, lawyers, social services and support workers and sundry other folks. If Scottish social care is better than English, I did not see it nor can I imagine anything worse. My Mum had capacity – completely – but there is a lot to do with this responsibility. I mobilised a lot of manic energy to do this – it was risky. My Scottish family refused to talk to me with one long and careful text which I sent my sister receiving the response “Fuck off!”. We visited throughout the end of December and January. She was moved to a Rehabilitation Hospital – and never left it. I have a sister in Australia and she was due to visit on 13th February but was too late. I have a brother who is a BSL user and as her family was the only thing that mattered to my mother, we had inter-continental, bilingual family summits to try to persuade my Scottish sister just to lie and say everything was fine between all of us. My niece was bullying me online but for one day only my sister pretended. Mum died on 28th January 2017. That date is my brother’s birthday and his wife’s birthday and their 28thwedding anniversary and Mum was born in 1928 and dad’s birthday was 28th July. I’m not superstitious but they are. When it was clear she was failing, the consultant asked her what she wanted him to do. “Anything and everything short of what will put you in jail.” Clear and even with a sense of humour to the end. My Mum had a hard life – she was in service – but she did everything without complaint. “I just did what was expected”. That was an awful lot and she did it for an alcoholic bully of a man- a major reason why I became a feminist. But she was strong and always bounced back– did she model that for me? At the end she said “I never thought I was anything special” and the idea that someone nearly 90 years old could say that was heart breaking. The funeral was predictably awful and I have not been back. This took its toll, more than I realised, and a few weeks later I developed extreme pain – of the ‘medically unexplained symptom” variety for which the RCPsych counsels CBT and since I also had a psychiatric diagnosis there was a distinct tendency to believe I was making it up. But I had tests – many of them outsourced to private companies. I saw my GP for the results and she announced I had stage 4 breast cancer in the thoracic spine (I did have breast cancer in 1991). The median survival rate is 10 months. I have escaped death by the skin of my teeth several times but this was the real thing. The worst part was telling other people. My partner was at work and I texted we needed to speak. Ten minutes between meetings then I caught the bus to Camberwell. I had an argument with an idiot neuroscientist but did not tell him I was under sentence of death – just another bout of bolshie Diana. I won the argument – in my view. I told one colleague and they were so shocked. But then there were friends who just crumbled in front of me and that was dreadful – “I thought you would be here forever” said one in tears. And another had just been through a year of cancer treatment with her partner. A week later I had another symptom and my GP sent me to A&E where I was admitted. People visited and were wonderful – even trying to cheer each other up with dark humour. The palliative care team came round and prescribed huge amounts of morphine with kind but fairly meaningless words. I have no psychological effects from morphine!! I was there for a week and they re-did all the scans and then sent me home with the palliative toolkit. On the Monday I told my head of department and we decided I would tell the team on the Wednesday. And then on Tuesday the hospital called and said – it has been a mistake! There is something on your spine but it’s benign and has been there for ten years. I became temporarily psychotic, paranoid and guilty because I had ‘lied’ about my imminent death. Almost like a broken promise. It all had to be undone. Of course it was not my fault but a ruined NHS that forces GPs to send people for scans to private companies who have no access to medical records. But I felt culpable. And if not indestructible, certainly confused. My GP was hypervigilant and kept sending me to A&E with potentially lethal blood results. Some other things happened to mess with my head including an egotistical psychologist at a conference mimicking someone’s voices – exactly the ones I hear. And then began the terrors, the nameless dread in the middle of the night, the flashbacks and visions. I would wake in a sweat convinced something dreadful was going to happen but had no idea what it would be. My partner had bought me a nightdress during the hospital admission and I was assailed by images of my mother writhing in pain wearing it – pink and blue and dying. I heard that psychologist’s voice telling me to jump out the window. Should I be alive or dead, was I mad or bad? My psychiatrist said you have PTSD and that did make sense but did not stop it all. I tried on the NHS and through personal networks and charities to find a psychotherapist. They had all closed their waiting lists. Rich or poor, London in 2017 was very distressed. After 4 months, I found someone but she did not anticipate what this would be. Because there is yet more. We had cancelled a (work) trip to Brazil in April and it was rearranged for November. But the original pain that had prompted those tests had not gone and I was also feeling very ill. After a conference in Cork, I passed out in Heathrow airport. The paramedic wanted to take me to A&E but I said you must be kidding – bipolar and medically unexplained pain! But we boarded that plane to Brazil and arrived in Sao Paulo early November 19th.It was a struggle but then we went next to Rio and after three days I had had enough. I went for a walk, down to the beach, and did some not very clever things. I remember three young women from the Favelas dancing around me and told them to go away and decided to go back to the hotel. And that is the last I remember for 5 days. Everything else is pieced together from what others have told me but the gaps are huge. A guy from the favela called the hotel and by the time my partner arrived there were two men with sub-machine guns, quite who they belonged to was unclear. Then a terrifying (not for me) ride in an ambulance to the Public Hospital during which I apparently had a cardiac arrest (CPR is violent – I have a cracked rib) and then straight to the reddest of the red rooms. Eventually, my distraught partner called a friend – they would tell him nothing and nobody spoke English. The friend arrived with a doctor he knew who bustled his way in and then after a while came and told Nik and his friend that I was too unstable to be moved and everybody was to meet again in the morning. I arrived at the private hospital at 14.59 (said so on my name bracelet along with my mother’s name) and was put in intensive care. I was intubated and, for those in the know, had a Glasgow score of 3. They ran a lot of tests and the results were alarming though I was in a coma so knew nothing. Pulmonary embolisms in 5 out of the 8 lobes you have in your lungs, pneumonia, blood poisoning and some other infections and my heart had stopped I the ambulance (some symbolism there). And so anaemic they wanted to give me blood products. But no brain damage – a bloody miracle. I was fed through a tube and tubes took over every conceivable bodily function. I think they call it life support. On the Wednesday, apparently, I opened my eyes. And started to spout a lot of incoherent nonsense. I variously thought I was in Camden, Amsterdam (I’d left my favourite boots in a cabin so says I), Sydney and Somalia. Delirium is common apparently and they wanted to give me quetiapine. This was avoided thanks to my partner having my psychiatrist’s mobile (!) so I had a tiny dose of olanzapine for 5 days. But the delirium did persist – I’d frequently be having a conversation with someone only to discover there was nobody there. The day they stepped me down to semi-intensive care I texted my partner that they had moved me during the night – nope! So I stayed in the semi-intensive room for another two weeks. For the first, every medicine, anticoagulant, antibiotics, electrolytes, whatever were delivered through a complicated contraption with various valves to be opened depending on what was to go with what. Nik slept on a sofa in the room sometimes but it was bloody uncomfortable. And they woke me (and so him) at 4.30am to take bloods every morning so the results would be ready for the doctor. And a portable chest x-ray every second day to examine the clots. I lost two weeks. Soon after, I was to lose myself. Brazil is keen on testing everything – second only to USA one radiographer told me. So I have a suitcase full of scans, x-rays, CDs, blood results to give to the UK doctors who will have to pick this up. The doctors were great. My ‘co-ordinating’ doctor (like a GP and everyone in hospital must have one), did not speak English well but spoke French and we had slightly mystical conversations about mind and body quite late into the night. She had an interesting take on ‘bipolar’ as she looked at the scars on my arms and talked about the tension between the will to live and to simultaneously self-destruct. A ‘maladie’ she said, but neither somatic nor psychic. The cardio-thoracic doctor was more business-like, visited early, sounded my chest and said a few words which became progressively more reassuring. So yes, we came back (again!) with a medical repatriation which involves being escorted by a doctor door-to-door. Ajay slept more than I did once he was satisfied with the oxygen machine. We were met at Heathrow by a blue van discreetly marked ‘ambulance’ but no blue lights this time. Yes, and things called back my mother’s last weeks. I was put on a nebuliser as she had been and it did feel the strangest role-reversal to be on the other side of the nebuliser. I have rubbish veins and my arms were covered with bruises from the daily taking of blood. Her arms were all bruised too. And she was very, very skinny and I lost 6 kilos so also had arms like sticks. The medical care was good – the food was awful! So that’s it for 2017. Of course many other things happened, I even learned some things about the ‘user movement’ in Brazil, and at home in the UK many people have had and are having it far worse than me. The university insurance covered it all – and I’d be bankrupt otherwise. And yet, recovering (if that’s what I am doing) is in some ways more difficult than being at death’s door. Low immunity means hard-to-treat infections with medicines that make you want to throw up (at Christmas?). Breathing is hard and I am not using my little breathing gadgets enough and in Rio I could walk along the beach but in London round the block and I have to lie down. Being ‘better’ seems a bit like the end of the rainbow. I wonder what 2018 holds. And I wonder when I actually will die, to put it bluntly. Twice I nearly have by suicide and this is getting ridiculous. Written 15/1/18 17/1/18 I lose it. I am a ghost. I left myself on the street in Rio and she will never come back. Worse, I am the undead wandering the banks of the river Styx as Chiron will not ferry me to the underworld and peace. I was not born with a silver spoon in my mouth. I’m getting better? – voices laugh, guffaw, won’t stop. telling me dead is better than undead and as I am a ghost anyway I’d better finally put an end to this charade that I survived. I am evil, I will kill babies and on and on and gargoyles haunt my dreams and wake me up. Somewhere I drank 150mls of liquid morphine together with lots of benzos. Didn’t even lose consciousness – awake for 48 hours, some of it in the ED which we finally secretly escaped from. I go – except ‘I’ don’t know what this pronoun refers to – certainly not a human being. Inhuman?Unhuman?Undead. But this spectre goes to a crisis house, acute care not perfect but the precise opposite of an acute ward which would certainly have been under section. Slowly the crisis house, my wonderful partner and wonderful friends put me back together a little. I spend the first anniversary of my mother’s death in that crisis house. Grim. I write something really nasty on my sister’s FaceBook timeline (see, I’m evil) and go to Hampstead Heath in a last attempt to reverse time and put the future behind me. 3/02/18 I was discharged from the crisis house Monday. I am 20% ghost and the rest goodness knows what but looking like a human. I start work – gradually – on Monday. ‘I’ will never be the same again. La volonte de survivre – so said my coordinating doctor in Brazil. I wonder.Maisaussi de destruire le soi.