PATIENT POWER?

`PATIENT POWER?

Suddenly I am awake. I look at my watch, it is five am. I feel very ill. I lurch from bed, stand, make a small tight circle and fall to the ground. I must get an ambulance. Down the stairs on my backside I grab the phone sit on the floor, talk. A woman asks if I can open the front door. I can and do, she stays talking to me until two men arrive with a stretcher and cart me off. They mutter ‘stroke’ I mutter ‘brain tumour’. I am in among the blankets when I vomit. I hear myself cursing and weeping about how ill I am. Me, the stoic. They put a plastic mask on my face. The mask scratches along my face as I am removed from the ambulance. I protest, the guys say they didn’t do it on purpose. I am vomiting again and face down on a trolley, and then I am in a neurological ward covered in bits of elastoplast and wires. Now I am required to perform tricks with nose touching and leg pricking then more nose touching and cross eyed fumbling. I must eat they say, nice bright nurses, an assortment of doctors all interested in my welfare. I am told that I will have a scan within 48 hours to find out whether I have a tumour.

All change now, I am in another ward and nil by mouth. I want to contact friends. My dog is in the house alone. Too busy, says the nurse. I try to text but am cross eyed, I get a cleaner to find the number for me on my mobile, I speak to my friends, they are with me within the hour. I give them the house keys. I sleep. I am awake, I ask for food, I am nil by mouth. I ask the nurses to contact my partner. They are too busy but will do it later. I sleep and it is morning now – too early to phone people the nurses say. Nurses enter and leave my field of vision. An old lady rings for a commode, calls out, a desperate voice. It is too late, the nurses change her bed. I ask if I can wash, I dip my right hand in the bowl of water, it is tepid, I put both hands in, the water is warm. My right hand no longer feels heat. I sleep and when I wake there is a woman in white at the end of my bed. (She  is a pharmacist, but I neither know nor care who or what she is.) I tell her I am starving and that my next of kin has not been contacted. Within a few minutes contact has been established with the outside world and I have a cup of tea. In this ward all urgency for a scan is on hold as nurses fleet foot past. I fell off my perch on Thursday and clearly I should have chosen another day. Weekends, all therapies stop. I am on no medication. A wonderful nurse hoists me into a bath, I realise the lack of sensation involves my entire right side.

Monday, my fifth day here, visitors and doctors arrive at roughly the same time as a porter with trolley. Scan now. I am delighted. I will know what is wrong with me. I chat to a friendly porter. We arrive at scan. A jug of beige gloop is presented, in the hand of nurse. ‘So we can see your bowel clearly.’ She says brightly. 'I’m for a brain scan.’ Her face goes through doubt to belief. She withdraws gloop. Back to ward. Doctor and acolytes talk about me, nobody addresses me.

‘Atrophy of the brain.’ He mentions en passant. He hasn’t looked at me. ‘Do what?’ I say. ’Yes?’ He says coolly – all acolyte heads turn to me then back to him. ‘Did you say I have atrophy of the brain.’ ‘No, I didn’t  mention atrophy of the brain.’ I am speechless. My friend, who is visiting, mouths to me: ‘He did.’ We nod to each other, we are not mad. ‘Why is she not on aspirin?’  says the big man. He sweeps into the distance with entourage. I invest in the tiny TV and telephone that is attached to my bed. I am given aspirin. I am moved to another ward.

In the new ward, where there are no plugs for TV an elderly lady, surrounded by plastic bags, sits on a chair. She sighs and smiles at me. ‘Been waiting since ten this morning.’ It is four fifteen. ‘What for?’ ‘I’m going to the rehab ward.’ She tells me this is the acute stroke ward. So, I had a stroke did I?  Second day in this ward I am spotted by a consultant from the neuro ward. He will hurry my scan. I am moved to a single room.

Next day, the eighth. I am wheeled down to have a scan. I have missed my turn. Porters take an hour to fetch me. I ask how long. I am told that I am lucky to get a scan at all, most stroke patients don’t. I ask why. The young nurse tells, breathlessly, that only yesterday the scan was in use for a nineteen year old boy involved in a traffic accident. I tell her that in my opinion all 19 year old boy racers should be culled summarily thus freeing up the scan for the old, who by their nature don’t have time to wait. A joke? Her face is delicious. I have a terrifying scan.

My third consultant  tells me I have no tumour. Relief is brief. I can’t walk and see no prospect of doing so, ever again. I try to walk, fall. I make friends with the tea lady

I’ve been here two weeks and the bed manager sweeps in to tell me I am off today to rehab hospital. ‘Get your stuff together!’ she marks me off on her clip board. ‘They’ve a bed for you and they won’t keep it.’ ‘I shan’t be taking it.’ I want to be consulted before they shift me like an errant Zimmer frame. Punishment? I am left alone all day in my room. The tea lady remembers me. My friend arrives with my washing. Verbose nurse leaps into action. Addresses him as my son. In words of few syllables very clearly. I am neither his mother nor an idiot he says. Next day the registrar asks me if I will go to the rehab hospital. Of course I will. Once more, left to my own devices I practise falling over.

Space, air, an internet connection, African nurses, some of the advantages of rehab. I am wheeled to the breakfast table. I join five patients at the table. Twenty minutes later no sign of food. I am told this is usual. After we eat we wait a further ten minutes to be wheeled back. Day 2 I discover capacity to wheel self. Day 3 I find I am able to walk if I hold on to a wheelchair. I appropriate one for my use. Day 4 I am sent to physiotherapy and given a ‘walker’. I had a Horner Pica stroke, says the Physio woman. Oh! I look it up on the net. Not helpful. But I am glad to have a name for it.

At evening meal we are accompanied by a Max Bygraves tape of  WW1 songs. Chomp to Roll out the Barrel, chew to Tipperary. I complain and the music stops, my fellow patients express relief. I enquire why they had said nothing. ‘Mustn’t grumble!’ but they do. They complain to each other continually, a low key, undirected whinge. 

My love of pints of tea in the morning is directly responsible for some of the speed of my recovery, and anger of course. How dare my body do this to me? I loathe the dependency on other people for the most trivial of my needs. My first long haul walk is to the kitchen; my second is to the shower. I am tested by the occupational therapist. Can I make a cup of tea? I can and I qualify to be sent home. I am amazed to discover that many of the nurses appreciated my input and hug me goodbye affectionately, I am touched. Off I go in a hospital car with an unnecessarily cheerful boy who sings along to radio 1 all the way home.