Wednesday, 31 March 2010

A Mile In Their Shoes

On the 21st March Polly, Sam and Matty ran the Sports Relief Mile along the Embankment in London. It was something of a last minute affair, Polly only having signed up a couple of days before hand, so she only committed to raising £50 for the charity. They all ran the mile with ease, circumnavigating Eddie Izzard (who was running yet another full marathon), and completing it in about 10 minutes. (Polly insists they could have run it faster but there were too many baby buggies in the way.)

Thank you to everyone who sponsored the three of them, we really appreciate your kindness, generosity and support The money goes to support important projects here in the UK and in some of the poorest countries in the world. You can find out more at and if you would like to retrospectively sponsor Polly and the boys you can at . I am delighted to announce that the total raised so far by the three of them is £380. . . so far.

Until next time.

Wednesday, 24 March 2010

Laser Death Pizza Extravaganza

I have been to hell and it is in Croydon. All right, perhaps I exaggerate, but not a lot. On Saturday we had Matty's 10th birthday party which was held at the Laser Quest franchise in the Colonnades on The Purley Way. From the outside the building looks like a rather bland office block but inside it is designed to resemble a Mississippi steamboat, I kid you not. The steamboat illusion does not pass deep inspection and is soon revealed to be mostly a front for an extremely noisy amusement arcade replete with the latest shoot-'em-up games called things like Zombie Killer 4 and Death Jungle Zone 3. Each game comes with at least one machine gun and absolutely no volume control. Interspersed with the death dealing mayhem machines were driving games that gave very little consideration to the highway code called Death Racer VII or Mission Road Kill X or such like. Also dotted around the Stygian hall were several non-working pool and air-hockey tables serving primarily as surfaces for teenagers to lounge against and as anti-wheelchair obstacles. The thermostat was set to 'boil blood' level but they economised by having the lighting set at a level that required an infra-red night scope to see more than a few murky feet. Along one side of the arcade was the Laser Quest zone where groups of identical looking pre-teens loitered whilst awaiting their turn to dispense laser justice upon each other.

Matty and his micro-army of 9 laser armed friends vanished into the kill-zone to enact Armageddon while I hunted vainly for a cup of coffee. Eventually I took refuge in the party room we had reserved and was at last able to have a conversation that did not require shouting over the death throes of machine gunned zombies. After an hour or so Matty's army retired from the battlefield to devour hot-dogs and relive successful ambushes. Oh to be 10 again.

On Monday it was Matty's actual birthday and we took him (and Sam, obviously) out for tea. You put your taste-buds in the lap of the gods when you let a 10-year-old choose the restaurant you dine in, so it was with a sense of 'it could have been worse' that I trundled into Pizza Hut. I am not a huge fan of Pizza Hut so I was pleasantly surprised to find on the menu some relatively interesting looking Tuscani style pizzas. I settled on the Pollo Portobello with the “thinnest, lightest, crispiest pizza base” and “recipes inspired from the heart of Italy.” Perfecto! Unfortunately Matty had been swayed by the advertising that induced him to try a pizza surrounded by “a ring of 28 individual doughy bites bursting with cheese.“ Such a divine culinary experience only comes with pizzas the size of truck tyres and so he pleaded with me to share a vast meat-feast deep pan pizza. I closed my menu with a small sigh and said that I'd be delighted to share. It was his birthday after all and considering the years of pleasure he has given me it was a tiny sacrifice. As he sat, grinning from ear to ear, chewing on peperoni flavoured stringy bits, he thanked us for taking him out to 'a posh restaurant'. Is it any wonder I love him?

PS - Only have the ring of 28 individual doughy bites bursting with cheese if you enjoy cheesy flavoured chewing gum.

Until next time.

Monday, 15 March 2010

Spring Is Springing

I feel a little as though I am coming out of hibernation. As the weather improves and the temperature slowly climbs I have been able to get out a little more. My mother came to visit and Polly and I took her for lunch at the local garden centre (rock n roll, hey). Then at the weekend I went to collect Sam from a party and also chased the boys around the park on the their bikes. (This took a while because Sam can only ride in a straight line and crashes dramatically at the slightest curve.)

Both Polly and I are benefiting from me having the new BiPap mask. So far the alarm has not gone off once since my return from the Brompton. Getting a good nights sleep has had a reinvigorating effect; Polly has taken up running again. She has been looking through catalogues and trying to fathom which running outfit will not emphasize her bottom.

I am pleased to report that my regular carer, Kolapo, has returned to work. He is much recovered from his injured back but is not going to be working 7 days a week any more. While he has been away we have had a series of other carers visiting. One of these was a very nice man called Balham. At the end of his stint with us Polly did what she had been dreading doing all week, as Balham departed she bid him farewell and wished him a good week saying, “Goodnight, Mitcham!”

Until next time.

Saturday, 6 March 2010

The Boy In The Bubble

On Wednesday I was finally admitted to the Royal Brompton Hospital in London for them to try and address the problems I've been having with my blood gasses and with the BiPap alarm going off umpteen times a night. I was poked and prodded by a doctor who also (on the second attempt) took blood and analysed it. My CO2 levels are too high and as a result my blood is turning acidic, which is not as cool as it sounds. Time to take action before I turn into a blood-burning super-villain.

I was given a room on Foulis ward with an en suite bathroom. Unfortunately the en suite bathroom was not wheelchair accessible. Not a problem I was assured, and a commode was wheeled in. Deep deep joy. The room came with a fully working TV and, to my relief, wi-fi internet connectivity. It was also alarmingly chilly. Polly closed the open window.

The Brompton is a great hospital but no hospital is ideally suited to my needs. Three nurses spent nearly an hour getting me into bed that night. It was then that it was realised that the radiator wasn't working. Nurses piled blankets on me until I could no longer move at all. It was a very long, very cold night.

When at last the morning came I was sleep deprived and shivering and not in the mood for what was to come. Four nurses took another hour to get me up, hoisted to the commode, discovered (I already knew this but it was a revelation to the nurses) that I cannot balance on a commode, and finally transferred to my wheelchair. I'll spare you the details of the indignity of the saga of getting my trousers on. Suffice to say that in the end we did it my way.

Later we got to the heart of the reason I was there. Steve, the ventilator man, came to experiment on me. The problem, it appeared, was that the pressurised air was leaking, thus I was not getting the full benefit of the BiPap and also that the alarm was going off to alert me to this fact. The solution was a new mask. Steve was very excited, he had a radical new product to try. “It's a bit unusual,” he warned me. It was. Imagine a diving helmet crossed with a bin-liner held on to your head by padded straps that pass under your armpits to stop it blowing off. When I tried it, sitting in my wheelchair, it was an interesting experience, rather like being in your own person bubble (albeit a noisy one). Polly said I looked like Sandy the squirrel from Sponge Bob Squarepants. The problem started when they wanted me to try it lying down. When Steve came to fit it, with me balancing on the bed, I freaked out. The bubble became that plastic bag your mother told you not to put over your head when you were a child. I couldn't breathe, which considering its purpose was pretty ironic.

Next we tried a mask which fitted into my mouth like a scuba divers breathing apparatus. This time the problem was that if you tried to speak or swallow the air was blasted under pressure into your stomach which blew up like a balloon. I lasted about 15 seconds.

Finally Steve produced a variation of the nasal mask I already use. Bingo. I agreed to give this one a go that night. I was told a sleep study had been arranged for Saturday night to assess how effective the mask was going to be. The thought of another 3 nights of mobile hoists and commodes was too much. I begged Steve to bump me up the list and he surveyed my room and took mercy on me. He said he would slip me onto the end of the list for that nights tests.

Getting to bed that night was a debacle.. The nurses were brilliant but I was exhausted and nothing went quite right. It seemed to take hours and I was at the point of taking out a contract on the life of whoever designed the mobile hoist I was being swung around on like a human conker. When, eventually, I was lying in approximately the right position, a technician came in and attached a probe to my earlobe. At least someone had come and mended the radiator and I only needed four blankets. The new mask worked beautifully though and the BiPap alarm didn't go off once.

In the morning two nurses came to get me up. Half an hour later they went to get two more. Much much later the consultant came in with the results of the sleep test. (You know you are getting old when even the senior consultants look like they are fresh out of school.) I held my breath (so to speak) as he held up a print out and pointed to various lines tracing across the page. O2 saturation was at 100% all night. More significantly my CO2 levels remained consistently low throughout. “This,“ said the consultant, “is about as good as it gets. Excellent. You should begin to feel the effects over the next few days.” And with that I was released back into the wild.

When Polly had come to visit me the previous day she had stopped in the corridor to stare briefly at one of the other patients. When she came into my room she said, “Isn't that. . . You know. . . Oh, thingumajig from that show. 1970s. . . American. Very famous.” I peeked out of my room and, do you know what, she was right. It was thingamy from that cop show. He was in a private room and got to drink coffee from a cafetiere rather than the instant muck I was served. From then on I couldn't get that gooey song he sang out of my head.

I'm home now and have just had a good nights sleep. The BiPap alarm didn't go off once. Result.

Until next time. . .

Monday, 1 March 2010

Cometh The Man

A few weeks ago we were assessed by a surveyor who came and told we have a condensation problem in out flat. We were aware of this because we had spotted the patch of black mold growing in the corner of our bedroom and behind various wardrobes. The surveyor, a nice woman, surveyed the BiPap, the electric bed, the air-mattress, the hoist, the wheelchair, the battery charger, the cough-assist machine and nebuliser, and explained that we have too much equipment in too small a space. The air, she said, could not circulate and we need more space. We are not, she said, adequately housed. Contact your MP (Member of Parliament), she advised. And, having exhausted other avenues and being very suggestible, that is exactly what we did.

To that end, last week, we were visited by Tom Brake, Liberal Democrat Member of Parliament for Carshalton and Wallington at home. He came and drank a cup of tea, declined a plate of biscuits, discussed the forthcoming general election and listened attentively while we explained the situation. We showed him a folder full of letters from medical type people saying we need more space. We presented to him two growing children. We told him of some the problems we face on a day-to-day basis. We explained how the cramped conditions made it difficult for carers to work safely and how they had to squeeze past the end of the bed to perform their duties. Tom nodded in all the right places and said that although he could make no promises he would see what he could do.

A few days later Tom sent us a letter summarizing our meeting. He asked us to grant authorisation to someone on the council to access our files and in addition to following up on our request for rehousing and, in the short term, a suitable hoist. made this rather surreal recommendation -

“allocation of carers who are small enough to squeeze into the currently very confined space.”

This is a splendid example of parliamentary lateral thinking. We don't really need larger accommodation we just need smaller people. Brilliant. It seems an odd thing to focus on but that's probably why I've never sought public office, I just don't have that capacity for problem solving.

Obviously I will keep you informed of any progress. I'll also let you know if I see any signs of carer shrinkage.

Until next time.