Cavernous Angioma

This is what I wrote eight years ago:

I started cycling at the end of August 2008 as part of my drive to lose weight, get fit and get healthy. And I loved it. On October 4th 2008 I went for a 50 mile ride, with a break in the middle, but when I got home, after I'd parked my bike I slipped, fell back on the steps and banged the back of my head which led to intraparenchymal bleeding in the front left lobe of the brain. After a week in hospital for various tests I was allowed home, but because I suffered a loss of memory for the 24 hours before my accident I am not allowed to drive for at least six months. In consequence I now cycle to work every day, a journey of sixteen miles, so I am getting fitter ready for my birthday challenge. 
I have never been bothered about celebrating birthdays, but I am keen to do something for my 60th that helps others, and raising money for medical research grabs me as ideal. Soon I might need to take advantage of that research. 

31/12/2008 I saw my neurologist Dr Harrower yesterday teatime. Really nice and pretty reassuring. I have my MRI scan next Monday: they'll be checking for an 'A.M.V.' a sort of bad connection in brain between artery and vein, which should be easier to spot now the blood has cleared. I still think it was a cyclist's bonk, but they don't know about them, so I'll give hime some stuff from wikipedia when I'm back there. Also discussed the white patches in my brain, of which I have more than my expected share for my age. Good news: he really encouraged me to keep up my exercising, all the cycling, running and weights. Says keeping fit and blood pressure and cholesterol low are the best things I can do. Great! 

5/01/2009 Off to the hospital this morning. Blood test first, to check on the pronounced vein on right temple. Then the MRI scan. Stripped off to hospital gown, then lay on narrow table and was rolled head first into the dark tube—very rebirthing! Forty minutes of whines, bangs and vibrations. They forgot to turn the music on, which was a blessing, as I escaped local radio. I enjoyed relaxing in there with the headphones on. Then back to work, where I phoned the surgery and got the results of my cholesterol test: 5.3. They say it's ok, but it's actually borderline high. Blood pressure to be tested every year or so. 

15/01/2009 Came home from work on Friday 9th January to find a letter from the DVLA saying I can drive again. Wednesday night drove for the first time, having cycled home from work. Went to South West Road Runners again, and again with Dave's group, the second level, and had no problems keeping up, so was pleased with my fitness and stamina. Am still trying to get a place in Sunday's 10k 'First Chance'.

19/01/2009 So I'm not out of the wood yet on this one. I got home from work to find a letter from my excellent neurologist, marathon-running Dr Harrower, saying that 'I had the opportunity to discuss the scan [the MRI scan I had a fortnight ago] at our disciplinary team meeting.' The team decided 'it would seem that you had a slight malformation in the blood vessels in the area where you had the haemorrhage.' This is known as an AVM (arteriovenous malformation). So now it is being referred to the neurovascular team at Plymouth, and they will decide if anything needs to be done. 

11/02/2009 Well, the last week started ok, with a run on Wednesday evening with South West Road Runners which really pushed me: I think it was about 8 miles at 8.2mph. And it was wet, dark and miserable. Thursday I went up to London for a book launch, dinner with the Freud family (lots of them) and an invitation from Lucien Freud's daughter Jane to sit for a sculpture - how could I refuse such flattery? Friday I spent the morning at the British Museum, and in the afternoon went for a swim at the Oasis Leisure Centre near the hotel, to do my usual forty lengths. What happened next I don't remember, but do now know what happened. I went back to my hotel for a shower, and had some kind of seizure, so that I repeatedly rang Brana's mobile telling her that I didn't know where I was and that I was confused. She called an ambulance (from Devon) and called our son to go to the hotel immediately. I was taken to the University College Hospital near Euston with another brain haemorrhage and stayed there till Monday evening undergoing various tests. I was allowed to leave the hospital on Monday evening, and I was allowed to leave London yesterday (Tuesday) to return home to Devon. 
I rang my neurologist last night but he is on leave for a week. This morning I saw my GP. So no driving licence again, a lot of worry, but at least I am allowed to continue running and cycling etc. I got home from the doctor's and on his advice ordered some medical ID tags in case I have another episode. Then the post came, with a letter from the consultant neuroradiologist in Plymouth and a covering letter from the consultant neurologist in Exeter. Now they say I don't have a cerebral AVM but a cavernoma, i.e. a rasberry-like formation in my brain rather than a tangle of capillaries, and a reference to the fact that I have small vessel disease... 
Plymouth also said that they wouldn't contemplate treating my cavernoma: 'It is in a relatively non-eloquent area of brain and would have a small re-haemorrhage risk.' That was written on January 27th, just a week before my latest haemorrhage.

Some of my MRI Scans from 2009:

A vertical sectionl MRI scan of my head; my cavernoma can be seen faintly at ten past the hour. 

A cross-section MRI scan of my head, with my cavernoma showing clearly as the dark blob. Scans are shown from below, so in fact my cavernoma is on the left. Imagine my lying down with the soles of my feet in front of your face.

An enlargement showing my cavernoma. Cavernomas ooze blood slowly, why is why they show as dark images.

Cavernoma Alliance UK

It was in June, 2009 that I attended my first Cavernoma Alliance UK international forum at the Grange Hotel in Southampton Row, London. It was in consequence of this that I volunteered to become a trustee of the charity, attending meetings at the National Hospital for Neurology and Neurosurgery in Queen Square. Those must have been early days for CAUK, as I see that I was member 167. There are now over 1500 members.

My Third and Last Seizure

I had one further seizure whilst cycling in Brittany in September, 2013, and fell heavily whilst on my bike. I know from my sports watch that I got up immediately, and carried on cycling back to my accommodation, but in a very confused state. I broke no bones, but I had a very large haematoma on my right side that took over six months to disappear.

The evening after the seizure and fall.

The considerable swelling can be seen here

I returned to photograph the spot where I fell, just after turning off a much larger road.

Back home the large haematoma is very visible, even though the swelling had gone down.

Activities with Cavernoma Alliance UK

I stayed a trustee of Cavernoma Alliance UK for a few years, and was extremely briefly its chair, to enable it to move on and grow considerably, with the help of lottery funding.
One activity of which I was proud was the establishment of workshops, activities and residential weekends for young people with a cavernoma. It seems that the children enjoyed having me as a role model, as, despite being in my 60s, I was naughty, like many of them. In addition, I was fearless about cavernomas themselves, hence my workshops which were aimed at helping young people understand a little about the brain, and to accept their cavernomas. Many parents said after the workshops that it was the first time that their children had been allowed and encouraged to discuss and share about their cavernomas and their experiences. It was this way that we met Lee Smith, father of Zane, who became incredibly active in his work for children with a cavernoma, successfully fundraising for Cavernoma Alliance, but particularly for Caverfamilies.

These are five videos of myself at our first residential weekend for cavernoma families:
Frank Gent talks about cavernomas at the first residential family weekend

These are eleven videos of adults talking about surgery and cavernomas:
Adults and cavernoma surgery

And here are twenty-one videos of parents and children talking about cavernomas:
Parents and children talk about living with cavernomas

All these videos were recorded by Michael Noonan during the weekend.
A video about the cavernoma experience from the CAUK website I appear at 47:49 to talk about my cavernoma.

A Scrapbook of My Activities with Cavernoma Alliance UK

The National Hospital for Neurology and Neurosurgery in Queen Square.

On the Board

At a CAUK board meeting at Queen Square with Dr Toma.

At a House of Commons reception.

Representing CAUK with Ian Stuart and Alison Garwood at a consultants' conference.

Myself with Ian Stuart in the Old Boardroom at Queen Square, before one of our events.

Families and Children

Brana addresses family members at a meeting in the Old Board Room at Queen Square.

Learning about our Brains and Cavernomas

Cavernoma cakes, with raspberry and blackberry sweets to represent cavernomas in the brain.

We took over the chapel at Queen Square for our young people's activities.

A representative of the Roald Dahl Marvellous Children's Charity who happened to see our activities and consequently kindly funded further activities.

Myself leading activities for young people in the chapel.

With Brana and Ian eating at our first Family Day in London, after a visit to the Sea Life London Aquarium.

Enjoying our lunch together. On the right is Lee Smith, father of Zane, and a keen supporter and fundraiser for CAUK's activities.

The First Family Residential Weekend

The first Cavernoma family weekend at Butlins, Skegness.

It was at Butlins that the video interviews took place, with the participants' permission.

As for my cavernous angioma, I realised quite early that I was relatively fortunate, as my symptoms were comparatively benign, and this allowed me to contribute actively to Cavernoma Alliance UK. The worst consequence, which did not really affect me at all, was the loss of my driving licence. Family and friends say that there has been some change in my personality, and that I have the classic symptoms, albeit mild, of a frontal lobe injury, namely disinhibition, risk-taking and inappropriate behaviour, but my neurologist would argue against that. But then most neurologists argue that none of the symptoms from which people with a cavernoma suffer should be attributed to their cavernoma. I think this is where people with a cavernoma would beg to differ.

More recently, now that I am dying from acute myelomonocytic leukaemia, having a cavernoma that has bled has given me the hope that my death might be fairly quick and straightforward: 38% of people with my condition die from some kind of cerebral haemorrhage.

http://www.bloodjournal.org/content/126/23/3318

Canadian Hospice Site

Running

I was never into sport. I hated team sport. I hated competitive sport. I did manage to get away with doing long jumps and triple jumps at school but missed Sports Day. I got no kick from any of that stuff. Playing Rugby League at school was a torment: I never knew what was going on. However, towards the end of my Rugby League ordeal there were two consecutive Wednesday afternoons when I managed to grab the ball and run. Fellow players were so amazed that they stopped and watched me. I didn't run again for over forty years, until my nephew Joseph was staying with us in about 2008 and as a joke we had a short race. I think I might have managed one hundred metres. I was curious though, and about the same time my son was running, often getting up at daylight whilst at home with us, and going for a run up over the hills through Fordton to Whitestone. Soon after I started running in the morning too, doing a three mile loop through Fordton past Hookway. I would feel radiant afterwards. I went back to Trieste in the summer and, even though quite overweight (I'd reached 16 stone, over 100 kilos) I would run along the Strada Napoleonica from Opicina. On my return to Exeter I joined the Exeter Road Runners, running from the Exeter Arena around Exeter, and after a shower I would cycle the ten miles back to Crediton, or sometimes walk to the bus station and catch a bus.

I made good friends at the running club, in particular nurses from the dialysis unit at the hospital, with whom I would then run on a Sunday morning, continuing this practice for several years. 

Exeter

Just after Xmas, in January 2009, I ran my first race, the club's First Chance 10k, for which I received my first medal and a towel that I still use, but I completed the race in 48 minutes 39 seconds, which encouraged me. I came 198th in a field of 486 runners.

Brighton

This encouraged me to enter other races, with the support of my friends from the Dialysis Unit. This was the Sussex beacon Half marathon which took place in Brighton on 22nd February, 2009. We all went down as a family and stayed at the Travelodge. Unfortunately on 6th February, whilst in London, I had my second major seizure whilst staying in the Travelodge near Centre Point, and spent a week in hospital in London. I took a risk and decided to continue with my entry—after all, I'd already paid my entry and no refund was possible for our hotel room. I did complete the race, and was very pleased with my time of 1 hour, 46 minutes 25 seconds—and I had no problems with my health. However, because of my two seizures I always had to mark my running number with a large cross, rather like a leper.

Brighton Half Marathon, 22/2/2009: 1:46:25

Taunton

My next race was my greatest success, the Taunton Half Marathon on 5th April, 2009. I was surprised and pleased to complete this in 1 hour, 39 minutes and 53 seconds. Beating the 100 minute barrier was a great surprise. What I liked about running was that I was competing against myself.

Yeovil

I followed this Half Marathon with the Yeovil 10k 'Easter Bunny' on 13th April, 2009. Although I completed the course in nominally 48 minutes 39 seconds, this race was not accurately timed: there were no electronic counters, just a gun at the beginning, and it took quite a while to get to the starting point. Still, it was marginally better than my first 10k.

Exeter

A few weeks later I entered the Great West Run, the Exeter Half Marathon. This was a more difficult course, hillier, and a warmer day. However, my time was only 66 seconds slower.

Manchester

In May I went up to Manchester to visit my parents, and ran the Great Manchester Run, a 10k race, on May 17th. Buses seemed to have vanished from Cheetham Hill Road that Sunday morning, so I ended up walking all the way to central Manchester for the start of the race. I did improve my time though, completing this 10k in 44 minutes 35 seconds. I remember that there was a near miss when a runner stopped suddenly dead in his tracks immediately in front of me almost causing a pile up of runners. I narrowly escaped having a tumble and finished the course.

 Torquay

 A month later I ran the Torquay Half Marathon. This was on 21st June, 2009, a hot and sultry Sunday, with quite a few hills, but kind people spraying us with hosepipes from their gardens. With a time of 1 hour, 50 minutes 54 seconds, this was eleven minutes slower than Taunton, reflecting the course and the heat.

Paris

I had a break from running over the summer, when Half Marathons don't take place anyway because it's often too warm, but cycled instead from London to Paris, as a means of celebrating my 60th birthday. I practised and prepared for this by going for long cycle rides around Devon on a Sunday, travelling via Eggesford to Barnstaple, then returning via Bideford and Torrington. Then in the week of my birthday I set off for London with my bike, stayed the night in Blackheath, then left together with many other riders raising money for charity, and raising our own self-esteem. I quickly made friends with Jack Powell, and also with Clive Ward, and we have stayed friends ever since. I celebrated my birthday whilst on the ride, and my fellow cyclists were mostly very kind about it, though one did have a dig, feeling that I should have kept quiet about it. My real friends were much more supportive, and it showed.

The entry to Paris on the last day of the ride.

My birthday welcome, with Clive Ward.

The 'Last of the Summer Wine' team.

One of our regular stops for food and drink. Although not the fastest, me and my fellow team members (we called ourselves 'Last of the Summer Wine') were often amongst the first to arrive because we were good plodders.

Roadside break at a café.

With Clive Ward.

With Clive Ward and Dave.

That's Jack Powell on the left, whilst I am over on the right.

A pause before we entered Paris.

Riding up the Champs Elysées.

Our final goal: the Tour Eiffel.

Bristol

Nottingham

London

My last race of 2009 was the Royal Parks Half Marathon in London on 11th October, 2009, which I completed 1 hour, 45 minutes 20 seconds. After this entry prices for races started to increase considerably, so I stopped entering races, but I carried on running on Sunday mornings with my friends, Rob, Cathy and Sue. They still come round to see me after a Sunday morning run if it happens to be in Crediton, and have come to see me in hospital too.