Chariots of Lycra

May 1 2012

The last two weeks have seen the introduction of a major step in Camille’s rehabilitation as well as me being able to face up to some ghosts from three years ago by once again taking on the London Marathon.  To top it all off we had a very spotty, special birthday to arrange.


This week Camille turned five; an event that we never imagined would happen back in 2009 when faced with the very narrow possibilities facing Camille. I seem to be saying this sort of thing a lot, it was the same with her fourth birthday and with her first day at school; so I guess in many ways everything seems incredibly positive. Which it is; Camille is bright, more energetic than she has been in three years and growing in confidence. Hayley and I will never see it as simplistic as this view, as we know how incredibly complicated this illness can be.


The morning of Camille’s birthday was pretty hectic with Camille bum-shuffling down the stairs with excited expectation as to what presents she may receive. Of course, she had been with us at Toys r Us when we procured every single one of them, but hey, the mystique was not lost on Camille. As Camille, ably assisted by Lucia, began to unwrap her presents, a notable spot was identified by the ever vigilant Hayley. With Lucia’s chicken pox now resigned to the odd sporadic scab we were aware that Camille was at risk. That spot was closely followed by another and then another; Camille had fallen to the chicken pox on her birthday. Her party was scheduled for three days later and we had no idea what to do. It wasn’t until lunchtime that we noticed that Jude was also popping up with angry looking blisters. It was going to be a pretty rotten week.


We decided to press on with the party and just notify all the parents of the invitees of Camille’s illness just in case someone had an issue with being exposed to the pox. The party went ahead and all but a handful couldn’t make it, generally because they had also come down with the pox. We hired Stef and Nonsense to entertain the kids and she did such a wonderful job, the only thing we wanted confirmation of was that Camille had enjoyed herself like the other children in attendance. Hayley did make the mistake of asking Camille when she was tired and grouchy whether the party was a success; the answer was short and shrift “NO!” Best ask her again in the morning.


I mentioned at the beginning of this post that Camille has been introduced with something new into her daily routine. As of this week, Camille is required to have an injection to top-up her growth hormone levels which were decimated from the radiotherapy on and around the Pituitary Gland area. We started by giving Camille the injection just before bedtime. The needle is basically an epi-pen, similar to what a diabetic would use to inject insulin, but even the thought of this prick was enough to have Camille stewing about the process for hours before and when she actually had the injection it traumatised her for some time afterwards. So, we decided to try it whilst she was asleep. As I’ve mentioned before, Hayley and I have tried the pens, so we know what it feels like and we know that she would hardly feel anything, especially if she doesn’t know it is coming. So far it has proved pretty successful, one night she was a little disturbed by it all but generally we have got the injection in without any bother. So all we need to do is to keep this up for twelve more years before the retest her and we are problem free.


A couple of weeks ago I wrote the fundraising blog for a change of scenery. The blog was detailing my build-up to the London Marathon on the 22nd April. I mentioned that I had ran three years ago, just weeks before Camille’s diagnosis, for another charity. I discussed how, although it was great cause, I didn’t have the same connection as I now do to Camille’s Appeal, for obvious reasons.


Hayley, her brother and I arrived in London a good time the morning of the race and we headed over towards Greenwich. They hopped off the tube at Canary Wharf to sniff out a cooked breakfast while I continued the journey over to London Bridge then down to Blackheath. I’d decided that I wouldn’t overload myself with fluid this time; back in 2009 when I ran, I was having to stop every five miles to queue for a rather smelly and steamy portaloo. I stood in the middle of the preparation area filming short snippets to upload directly to the website, but the upload speeds were so slow and my battery was getting sucked into the ether, so I decided to leave that for another day and focus on the live tracker on the website instead.


I looked around the heath and everywhere I looked there were people limbering up, not one of them had a fancy dress costume on. I looked down at the sumo suit rolled neatly underneath my right arm and wondered when I might be brave enough to put the damn thing on. I was wobbling a bit as it happens, but when I heard the MC mention a guy wearing just a leopard skin mankini, I had no problems getting the suit on and ready for inflation. As soon as the suit was on people started coming up to me asking for a photograph and just as a runner was departing post-photo another Camille’s Appeal runner, Caroline Swan, came over to say hello. I don’t know how she knew it was me!


I made my way to the starting section, a long way back from the start line and waited for the off. When the crowd began to surge forward for the start I clicked the button to inflate and away we went. The area around Blackheath is quite busy with well wishes and I was getting quite a kick out of people shouting out my name or “SUMO!” but the fatigue set in early. The sumo style headwear that I was sporting was capturing all of the heat emanating from my head and I was dripping with sweat within the first mile. I soon decided to hold the headwear to allow my head to feel the cool London breeze.


The first eleven miles went extremely well. When I approached the Bermondsey area just after the ten mile mark I noticed my colleague Marco standing at the side of the course with a camera the size of a small pony. I felt bad that I hadn’t stopped for a chat but I knew Hayley was just around the corner and two stops in half a mile would be pure indulgence and not good for my ever tightening muscles. By the time I reached Hayley, just after the eleven mile mark, I was feeling the heat. Although it wasn’t the hottest day ever, the sun was consistently beating down on the runners and that suit began to feel like tin foil wrapped around a dried up old chicken breast. I stripped down for a minute or two (or five) and rearranged my battery pack, phone etc.


Just around the corner is the magnificent sight of Tower Bridge and then the tumultuous welcome of the crowds along the Highway. That’s where I felt the pinch. My calves all of a sudden felt like someone behind me had a pair of pliers and were squeezing as hard as they could. The right leg was far worse than the left but either way I knew I was going to struggle getting around. I got to eighteen miles running like Herr Flick from the Allo’ Allo’ sitcom and then out of the murky distance I saw a green gazebo with people (mainly women I will say) rubbing down the legs of cramp afflicted victims. I was drawn like a moth to blowtorch and limped up to the tent with a look of pure dejection. I have to say that the rubdown of my right calf could only be described as heavenly; I mean she gave it some teddy but it enabled me to move on in complete peace. The relief was short lived and I spent the final six miles in and out of physio tents. At one point I was positioned next to my nemesis, the Womble.


All in all it was pretty tough and as I cantered down Birdcage Walk towards Buckingham Palace, five and a half hours was ticking by. I looked up to see the Womble a hundred yards ahead of me, 2009 flashing back in front of my eyes. I had to beat our furry friend this time, it wasn’t an option to lose a second time to a guy dressed in a Womble outfit. So, like the opening scene from Baywatch, I set off into full stride, one step after the other I pushed and pushed until I caught the Womble and crossed the line ahead of him. I hadn’t realised that watching at home was my father and Camille, watching my last minute battle with the Womble. Of course they had no idea what was going on, after all, the battle was all in my head.