Stroke Diary

In June 2012 I suffered a stroke (CVA). Here is what happened and how I experienced it.

Early June 2012

I notice some blood in my urine. My GP confirms that I have haematuria and refers me to St George's Hospital, Tooting, for urological investigation. At the same time she advises me to discontinue Warfarin (an anticoagulant that I have been taking daily for seven years to protect me against the possibility of strokes). She thinks that the bleeding in my bladder may be a side effect of the medication.

Several days later I consult my cardiologist, since a full year has now passed since he carried out a 'catheter ablation' to restore my heart to its proper rhythm (I had been suffering from atrial fibrillation, i.e. chaotic disturbance in the heart's rhythm.) On the basis of a 24-hour ECG he determines that my heart is now in the correct sinus rhythm, and has been for a year. However he reports that I have bradycardia (my pulse is too slow), with second-degree heart block. I need an artificial pacemaker, which he plans to implant within a few weeks. He confirms that I can discontinue Warfarin.

18 June

The hospital had called me today for the urological investigations. Three types of test were planned: ultrasound, x-ray, and cystoscopy (visualizing the interior of the bladder). The first two take place as intended; but the consultant is not available to do the cystoscopy. I return home to await a new appointment.

20 June

Early in the morning I drive my civil partner Gabriel to Gatwick airport. He is flying to Montserrat (where he was born, and where we have a house) to help celebrate his uncle's hundredth birthday. He plans to return in three weeks.

In the evening I had arranged to meet two friends for dinner in Croydon. We have our meal together in a Spanish restaurant. Afterwards I walk them back to West Croydon station for their journey home and head back towards Church St to catch my tram home.

Suddenly I find that I can't hold my evening paper properly in my left hand and let it fall. A moment later my left leg won't do what I want. It collapses beneath me and I fall down. The tram driver calls an ambulance.

The ambulance speeds me to St George's hospital, where there is a special Stroke Unit to deal with stroke emergencies. I am admitted to hospital and am given urgent antithrombotic treatment.

Medical personnel ask me a series of questions. Name? (Yes, I can say it.) What medications are you taking? (I can name them correctly.) Have you any medical conditions? (Yes: bradycardia and second-degree heart block.) Age? (Consternation! I can't say, I've forgotten how old I am. All the same, I reason to myself, I know what year it is and I know what year I was born, so I can easily work it out. But my brain will not, cannot, do the maths. I don't know my age and I can't work it out.)

Later I remember that I am 73.

The next morning I take my diary and manage to find my next-door neighbour's phone number. (She has a key to our house, and feeds the cat when we're away.) I ask a nurse to phone her and tell her what has happened. The nurse does so, and hands the phone to me so that I can talk to my neighbour directly. (At this time my speech is slurred but intelligible.) I have an idea: I ask my neighbour to go to the computer in my study and do a status update on Facebook for me. (I know my computer is running and that I am logged in to FB.) She does this, signing the message with her own name and contact details.

I am John's neighbour - he asked me to let all know he is in William Drummond Ward St Georges Hospital Tooting having had a stroke yesterday. He is talking but has weakness on left side. I do not have any contact information for Gabriel who is in the West indies - so I hope this will reach him soon. My ansaphone is ...

Since I have difficulty swallowing, the doctors insert a nasogastric tube to feed and water me through. There is also a cannula in my arm dripping some medication or other into me.

The next day, with the help of a Speech and Language therapist, I learn how to swallow sips of water and eat spoonfuls of soft food.

22 June

In the evening I am transported by ambulance to another hospital, St Helier. It too has a specialist stroke unit. Patients who live in Merton (as I do) or Sutton are supposed to be treated there, whilst St George's is for those from Wandsworth.

At St Helier I am given a private room, which has the advantage of privacy but the disadvantage that the nurses can't always keep their eyes on me to check that everything is OK.

My first two days at St Helier are a Saturday and a Sunday. At weekends the doctors and therapists do not work (though the nurses do). I feel some discomfort in my abdomen, but there's no one to hand to see what the reason might be.

25 June

It's Monday, and everything starts again. A doctor examines my belly and concludes that I have gone into urinary retention. She inserts a catheter through my penis to relieve my swollen bladder. The catheter connects to a urine bag hanging at the side of my bed. So now I'm connected to two tubes: the catheter and the drip.

I am wheeled down to x-ray (always connected to my tubes) for CT scans of my head, chest, and legs.

26 June

The doctor in charge of the stroke unit tells me the x-ray findings. She confirms that I have suffered a stroke caused by a blood clot that had reached my brain. Furthermore I have a deep-vein thrombosis in my right leg and (dangerously!) a pulmonary embolism (a clot on the lungs). Heparin is pumped in through my arm drip.

My 'nephew' Kevin comes to visit me in hospital. (He's really Gabriel's nephew, but he has called me 'uncle' since he was a small boy.) At my request he brings me pyjamas, slippers, toothbrush, toothpaste and spongebag, towel, and clean clothes, my electric razor and — very important — the charger for my mobile. Kevin moves into our house for a few days, to attend to various urgent matters and to be able to reach the hospital more easily (because he lives in a distant part of London).

27 June

The consultant decides that I should have a filter installed in my lower vena cava, to trap any possible fragments of clot from the DVT. I am taken back to x-ray for the procedure. Anticoagulation continues with the heparin drip.

I speak on my mobile with Gabriel in Montserrat. He tells me about the centenary celebrations. He wants to change his flight home so that he can be with me as soon as possible.

While I am in St Helier I'm visited by all four of my nephews, both my brothers, various other family members (including Gabriel's relatives), three or four university colleagues and assorted other friends. These visits give me a great psychological boost. It's not just that they interrupt the tedium of a long hospital stay, but they constitute invaluable social support. I'm fortunate to have so many loving relatives, colleagues and friends. I also receive a welcome mini-torrent of get-well-soon cards.

2 July

With the physios' help I manage three steps. From now on I can transfer unassisted from my bed to my armchair and back. Now I am able to use a commode.

Kevin brings me my laptop. The hospital does offer connectivity, but not free of charge. I purchase a week's broadband and pay by credit card. But I find the connection (that's you, Wi-Fi Spark) intermittent, unreliable and sometimes glacially slow. Nevertheless I manage to write a short article (in phonetic transcription!) and upload it to my phonetic blog. I also manage a four-language status update for FB. I'm showing people, and myself, that my language skills are not seriously impaired.

4 July

I can now walk around my room (not freely, though, because I'm still connected to the catheter and the drip). In the evening I'm moved out of my private room into an ordinary ward with other patients.

Four times a day the nurses check my blood pressure, my pulse rate and the oxygen saturation in my blood. From time to time they take blood samples for the path lab, so often in fact that the veins in my arms become so bruised that it can be difficult to find a usable vein.

5 July

My catheter is taken out. With the physios I do various balance exercises with the aim of improving my walking.

Gabriel gets back from the Caribbean and comes to see me in hospital. Great!

6 July

I find that I cannot urinate (cannot initiate the flow). The doctors recatheterize me. (This new catheter will remain in place for several weeks, until my cystoscopy in mid-August.)

I do exercises involving catching and throwing a ball.

9 and 10 July

More occupational therapy: I climb two or three steps of a staircase, walk zigzagging round obstacles, walk carrying a tray, and make tea in a special mini-kitchen (= get a cup from the cupboard, find a teabag, fill an electric kettle at the tap, switch it on, pour boiling water onto the teabag in the cup, stir with a teaspoon, throw away the used teabag, take a bottle of milk from the fridge and add some to the tea, put everything back tidily).

The consultant attaches a small tap to the end of my catheter, so that I can use an ordinary toilet and no longer need a urine bag. The heparin drip in my arm is removed. From now on I will be injecting myself twice daily with heparin, so as to maintain the protection against possible thrombosis. And from now on I can move around freely, no longer tied down by drips and catheters.

My cardiologist comes to discuss how soon he can implant my pacemaker. But I also have urological work outstanding (cystoscopy, possible prostate op), Which should be done first, cardiology or urology?

12 July

I am discharged from hospital. I say my goodbyes and thank the doctors and nurses of the Stroke Unit. I am taken in a wheelchair to the main entrance of the hospital, where Gabriel is waiting with the car to drive me home.

13 July

An occupational therapist visits, to check that I can move around the house freely, get up and down the stairs and reach and use the loo. Everything is OK.

Then a hospital administrator rings to ask whether I was satisfied with my stay. My only serious complaint concerns the ignorance of two nurses, who both gave me incorrect instructions on the self-injection of (subcutaneous) heparin: they wrongly imagined that the same rules applied as with intravenous injections, involving expelling air from the syringe before inserting it. Fortunately I knew better, having injected heparin on a previous occasion (you are specifically warned, in writing, not to expel the air), so was able to ignore their faulty advice.

16 July

From today onwards I have regular home visits from physiotherapists, occupational therapists, and a speech and language therapist. Together they constitute the Early Supported Discharge Team for the hospital. Every day they make me do exercises aimed at restoring my balance and giving me confidence in walking, restoring feeling and strength to my left hand, and generally returning me to the same physical state as before the stroke.

Today I do balancing exercises and manage to have a shower unassisted.

18 July

It's four weeks since my stroke. I walk half a mile accompanied by a therapist.

20 July

Gabriel drives me to an appointment with the urologist, who examines my prostate and plans to do a cystoscopy (bladder examination), but the latter will have to wait until after my pacemaker has been implanted.

21 July

Gabriel drives me to the supermarket, where we do our weekly grocery shopping together. No problems.

23 July

The occupational therapist gives me various exercises aimed at strengthening my left hand: picking up paperclips or coins from the table, stacking coins, using clothespegs, touching my nose with each finger in turn, threading paperclips together, operating the shift and Ctrl keys of my computer properly, identifying by feeling alone unseen objects in a bag (teaspoon, screwdriver, soft toy, wooden spoon, metal file, eggcup...).

25 July

I walk unaccompanied to the doctor's surgery and back again (about a mile).

26 July

I do up my shoelaces. Triumph!

I restart warfarin, to prepare myself for the pacemaker implantation next week.

29 July

A fellow-member of Windmilers, my running club, gives me a lift up to Wimbledon Common, where we hold our Sunday morning social runs. I greet all my friends there and walk (not run!) rather more than a mile.

1 August

I go back to hospital for the pacemaker implantation. This requires an overnight stay. The hospital is in central London, and Gabriel and I get there and back by public transport. The crowded tube is a little unnerving, but I manage.

A Korean acupuncturist contacts me out of the blue offering "eastern therapy" in exchange for a return air ticket, accommodation and subsistence. But I don't believe in acupuncture, moxibustion, and similar traditional but unscientific therapies. I trust western, scientific, evidence-based medicine. So no, thanks.

4 August

The pacemaker is working fine but has left me with a sore upper left chest (where the wound is). I must restrict the movement of my left arm and shoulder for a month.

The physio declares that her work with me is done, because now I can walk perfectly well. The SLT says the same, because my speech is fine. I'm left just with the occupational therapist, who will continue to make daily visits for a few weeks, working on my weak and clumsy left hand.

10 August

Another day in hospital. At last the cystoscopy is performed. It shows that I indeed need a prostate op (TURP), which we schedule for the second half of September. Meanwhile I shall still have to wear the catheter.

12 August

So where does that leave me, just over seven weeks since the stroke? They say that those who suffer a stroke fall into three groups: one third die immediately or within a week or two; one third survive, but with severe handicaps ('deficits'); and the remaining third gradually recover all their mental and physical functions. Fortunately, I am in this third group. My stroke proves to have been a relatively mild one. I can talk, I can walk, and my left hand is gradually improving. I hope and expect that in a few months I shall be able to live as normal, doing everything I did before.

P.S. January 2013

I'm glad to be able to report that in November I was able to carry out a planned lecture tour in Japan and China. This involved 12-hour flights in each direction, public lectures in three universities, and a three-hour teaching seminar, all of which I was able to manage satisfactorily.