"Blood Runneth Over"

Biro drawing (by me) of my hand (and all injecting paraphernalia) and in the act of shooting up. (Thursday, March 1st 1979...8yrs 36 days old)



Why won't this child of ours stop fucking crying? Crying all the bloody time! Every time I pick the bastard thing up it cries! Non-fucking stop! People stare at me in the street God dammit...as if I'm hurting the boy deliberately! I'm not! I just don't know what to do anymore! The other one...the girl...she doesn't cry! She is as good as gold. Just lies there...like a little new born bird, just fallen from her safe and warm nest. You know what has happened don't you? The boy has taken all the tears that these twins were handed at birth two years ago and has decided to keep them all for himself! His Twin is in serious danger from drowning in his painful tears.

What am I doing wrong? We need to take him somewhere right? The Doctors? They may be able to tell us what is happening...what is wrong with him...fix him...make him better perhaps?

Well, Mr & Mrs Tolmie, we have done some tests on Jason and they tell us that he has severe Haemophilia "A". He is bleeding internally into his joints and this is what has caused him to cry out all the time. He must have been in some quite considerable pain. He will need to be treated for the rest of his life by way of injection directly into his bloodstream. A number of small blood transfusions, if & when needed, that we will administer for him here at the......are you all right Mr Tolmie?

My God! My Son is going to die......bleed to death! What did I do to deserve this? I am a good man! Why me? Why us?? Why him!?!

Please don't worry too much Mr Tolmie. These fabulous life saving injections I told you about are absolutely the right thing for him now and will begin to make things for your Son and indeed you and your Wife much more tolerable. It isn't a cure, but it will go some way to prevent Jason from bleeding too much into his joints. In fact, he will no doubt be able to lead a very normal & productive life. There are absolutely no reasons why he shouldn't be able to live just like any other boy of his age.

That was 34 years ago in the year of 1973. That was my Dad...feeling sick that his Son might not be normal...that he might not live beyond the age of ten! My Mum was fine with it more or less. She is stronger than my Dad. My Mum is like me. Strong!

I was treated, cared for & injected at Hammersmith Hospital, London, from the time I was diagnosed in 1973...just two years after I was born along with my twin Sister Nicola, until my Dad had me transferred to the Royal Free Hospital in Hampstead, London around 1976, because the doctors at Hammersmith couldn't even find a vein for nine injections out of ten! My Mum & Dad were fed up with seeing me being held down by several doctors at a time whilst they tried to find a suitable vein in which to administer the vital life saving Factor VIII.
We can teach you to do the injections at home Mr Tolmie. It's a very straight forward procedure...here, take this orange and pretend it is your Sons little arm. Go on, it is just like skin.
Oranges indeed! Give me my Son's arm! I shall do it into his bloody arm!

Eventually, after we had been at the RFH for a while he was taught properly and on real veins (mine) and not a selection of fruit...and then when I was about nine years old I injected myself. I was getting fed up with my dads tobacco stained fingers and their discoloured uncut nails from years of electro plating, as sharp as an eagles talons scratching my soft skin as he pulled it back to tighten the vein so the needle would go in better. He never missed, but I wanted to be a grown up and inject myself. I have been doing it myself & at home ever since. I am still treated & cared for at the brilliant Royal Free Hospital...but a few times during all the care and treatment...I was given some very bad news!

Before the injections in the safety of my own bedroom there were hundreds of trips in speeding ambulances to the Royal Free Hospital, my second home, in the black of night. Sirens screaming! Red lights ignored! I was in agony! I was quiet. I was lonely. I was tired. I was scared. I was still in my pyjamas for goodness sakes! Clutching my arm, rocking it gently back & forth like a baby in agony! Stroking the ever so tight skin, ballooned from swelling, with the fingertips of my other hand...my good hand. I even told the driver which way to go sometimes when he got lost. Accident & Emergency waiting rooms full to the brim with face slashed drunks, escorted by burly Policemen. Blood stains on the walls...blood stains on the floor. I tried to hide from it all. Sitting still like a statue, trying with all my might to disappear into the plastic chairs...trying to count the ceiling lights reflected onto the surface of the grimy bandage strewn waiting room floor. Desperately doing my best not to make eye contact with the blood soaked maniac sitting directly opposite! The orange squash vending machine made my mouth water as people came and went with their drinks. I was too shy to speak...even to my dad. Three or four times a week in the middle of the night (my Mum took me in the day and my dad at night) three or four hours each time...waiting...waiting! I wanted to be at home in bed...or dead! Anywhere but here!

My Mum & Dad got used to all that shit pretty quick, as did I, what with talk of blood...talk of pain...talk of hospital appointments...talk of special schools in Alton, Hampshire...talk of this...talk of that...But not much talk of the things that normal, healthy boys get up to! You mustn't ride a BMX...no motorbikes...no climbing trees...no physical education at school...no bloody nothing! Just stay in doors and stick needles into yourself everyday. Did I listen to them? A little yes...just a little;)
As long as they both looked after me well and made sure I didn't fall over too many times...and injected me with this life saving blood whenever I had a 'Bleed'...yeah, I was pretty much wrapped in cotton wool as a kid. After all, I needed protecting right? I needed that kind of treatment didn't I? To make me all better right?

Make me all better? Things couldn't have gone more bloody wrong!

You see, in the intervening years since I was diagnosed with severe Haemophilia 'A' and today, I was treated with this miracle drug called Factor VIII. It came in various forms...liquid plasma from human blood in a bag (Cryoprecipitate)...a small hard block of 'Dried Factor VIII Fraction' in a large glass bottle...and more recently, a loose kind of powder, apparently a synthetic form of Factor VIII (Helixate NexGen & Bayer Kogenate...both recombinant products) made to act exactly the same as natural Factor VIII, in a tiny glass bottle. I am sure there were more kinds of Factor VIII that I was given, but I am afraid I don't remember them.
All good stuff right? All designed to help...to protect...to save lives!

Ok, it seems to have saved my life...as I don't seem to have died! But I did feel dead for a while! A long while in fact! Why you may ask? Ok, I'll tell you. You see, I was injecting this stuff...gallons of this wonder drug and little did I know, it wasn't as wonderful as one was led to believe! You see it had 'Stuff' in it that was bad! Viruses of all sorts...viruses no one knew were hiding there. Quite well hidden as it turns out! They did well to find me though! Definitely two that I know of...that I have been told about, maybe three of the filthy little bastards! Perhaps even more than that!

I don't know the in's & out's of all these viruses that were given to me. That ain't my job! There are people working all over the world to see that this job is carried out correctly. But, it seems someone wasn't doing their job very well one day...one month...one year... one decade! Of course 'They' won't admit to that will they! It wasn't me...It wasn't anything to do with us! Have a word with so and so & if you don't get any luck there, then try somewhere else! But it wasn't us! Now piss off...& die already! So we can forget that this ever happened! Go back to playing doctors again!

Yeah! Tell me about it sunshine!

So, then along came my Hepatitis C...a very long time ago, Probably when I took in my first injection of Factor VIII. I must have known about it! I knew something wasn't quite right! They had three or four Doctors trying to hold me still whilst they pushed the stuff inside of me! Not just the once, but numerous times over the first several years after being diagnosed with Haemophilia. Then when I was infected, something else must have registered and I just let them do it. Put it inside me. Fill me up...make my pain go away...take away the terrible swelling...make me all better again...save my life, remember?
Of course, I didn't really know what was happening! But someone must have right? You don't inject into little boys & girls veins without knowing what you were actually injecting! You wouldn't do that to your own children would you?
But they did to me and my friends, and my friends friends! Some of my friends are dead already! Buried...cremated...rotten in the ground! Gone! What happened there eh? What killed them? I got the same shit as them! Why ain't I dead? Why ain't they still alive? When will it be my turn in the ground? My turn to rot! My turn to disappear.

I didn't find out about the Hep C that I was given until around 1996 or so. I can't remember exactly...I suppose I could find out from the hospital, but what would the use be? After all, I had other things on my mind to prevent me from thinking about the Hep C. It was called HIV! I got it the exact same way as the dreaded Hep C! A prisoner & his cell mate gives blood...gets paid for it...tells his neighbour...gives more blood...more money...blood sent away to a lab...pretty packaging...fancy labels...But not clean! Definitely NOT clean! Give it to them funny bleeder types! Give it to them right where it hurts! They won't notice! No one gives a shit about them!

Then one sunny morning, I was on my way up to the Royal Free hospital to attend a regular haemophilia appointment. I was asked to enter this small windowless room & sit down. I had been in there loads of times in the past. A picture that I drew for Mrs Miller, my haemophilia social worker, was hung on the wall...a boy on a bicycle. My Mum was by my side all the while. A TV and video recorder sat at one of the room. And a little video camera screwed into the wall high in one corner.

"Do you mind if we record this?" They asked.

Of course I didn't think anything of it. I was sitting with my Mum, and two seasoned professionals in the medical world. I was 16 years old and had the rest of my life ahead of me. I was enjoying college, I was good at it, even had a girl called Becky in my class who was interested in me! I had never had a girlfriend before and the prospect of being with someone in that way was terrifying, but exciting too. I was and still am still quite shy! It took me three months to say yes to her!
So there I was in this tiny, cold, very quiet room. There was a soft toy sitting on a chair in the corner. Surely not for me! I was 16 years old in 1987. I don't want soft toys! Give me a computer magazine instead...Or a piece of paper to doodle on! Or at the very least a biro so I can draw on the back of my hand.
I didn't hear most of what was said. I very rarely took in much of anything my Doctors told me over the years. What I did hear though was; "Jason. You have HIV" "And You have had it for the last two years".

They explained to me what it meant, but I just sat there and wanted to get back on the train home and look at the graffiti on the railway embankments. I was deeply shocked on the inside...stunned maybe...but strangely calm on the face of it...as was my mum.

What the fuck! I didn't want to die, I didn't want to get ill, I didn't want to have to say good-bye to my family & friends, standing around my hospital bed, crying their eye-balls out......snot dripping all over my skinny, AIDS riddled legs & arms! And what about Christmas? It was September and I couldn't see the next Christmas! I couldn't wash my hands in the sink, because of the ad on the TV. My Mum, although she doesn't remember saying it now, had already killed and buried me in her sleep she said......so she didn't have to think about it.
I went quiet and probably looked at the floor. Trying not to blink, so everything would eventually go white! As the lines in my black corduroy trousers merged into one dark fuzzy mess, I remember my eyes stung as they dried out from not blinking! The trip home was a blank...as were the next several years to be honest!

My college course soon waved goodbye to me when Becky & I eventually went out with each other, We both got booted out for not attending. Becky merged into a girl called Jac and she eventually merged into my best friend, then it was just me and my viruses, hospital appointments, AZT drug trials & other HIV related drugs trials, my joint pain and a sentence of death that seemed to come at me from every direction & in slow motion! Not so much living...but just alive! Cycling, kayaking, becoming addicted to my pain killers, not working and not much else! Weeks turned into months, months turned into years and years turned into my last girlfriend Claire. She came along out of the blue, made me feel a whole lot better about things for a while and then kind of disappeared into the blue too. We still speak occasionally, as do Becky and I. But there I was with my viruses again, and my cycling, kayaking, keeping fit, pain in my joints, more hospital appointments, being with my family, staying as healthy as I possibly can. It is very hard work, but I am determined to out live every other virus infected person through contaminated blood products on the planet!

Then one day, after years of Royal Free Hospital Hepatitis specialists saying to me that I might want to think about treating my Hep C, and me saying 'Yeah, I'll think about it.', and on reaching home duly sweeping the whole sordid memory from my mind - I was told that I should stop thinking about it and jolly well start asap!
I knew nothing about Hep C just then, except that it will kill you if you leave it too long or treat your liver like shit. Well, I had had it for over 30 years by this stage, but I had been looking after my liver as far as avoiding cigarettes & alcohol were concerned, however, my pain killers & HIV drugs were probably causing just as much damage!
So back in February 2006 I began! With hardly any information...I was given literature on the subject of Hep C & possible side effects over the previous few years, but all this went straight in the bin, with the attitude that I was looking after myself as well as I possibly could and no amount of leaflets were going to help me!
Before I knew it I had started 48wks of Interferon/Ribavirin treatment and had a pretty good time as it happens. I had heard that it can and does cause all sorts of nasty side effects for most people taking it. But I was one of the very lucky few to have had a great time so to speak.
It seemed to have done the trick too...I was undetectable at twelve weeks and again at 48 weeks...My six month post treatment 'SVR' blood test was taken in July 2007. The virus has gone! Hopefully. I have all but forgotten about my Hep C! My HIV is well hidden also because of the drugs that I take for it seem to be working too.

Things couldn't be better for me right now. I'm fit, healthy and more or less happy too. Actually, I haven't felt so alive in an absolute age!
But that don't make everything alright by any means!!! For instance...why the hell wasn't I told of my HIV status when I was first diagnosed with it? Why did my Doctors tell me two whole years after they found out? Were they absolutely sure that I wasn't pissing away my viruses into some poor girls body? Not to mention my bloody family & I, who were at risk all through those two years! Did they have someone spying on us? Making sure I wasn't leaking blood over everybody & everything? I don't think so! So who knows why they didn't tell me that I had a life threatening virus as soon as they first discovered I had it! I remember them telling me that it was because they didn't think I was old enough to understand what it meant! What the fuck! Since when did I come across to them as a complete retard back when I was fourteen! They always used to tell me how intelligent & sensible I was.

Again, I was lucky as were my family and friends also! But as with everything in life...your luck will eventually run out sometime right? Like all the poor bleeders, some of whom were my friends, who have already died from these very same viruses that I have given host to over the last 30 odd years!

Answers please!!!



Jason Paul Tolmie


P.s. This year is the twenty year anniversary since I started taking medications for my HIV...everyday, twice a day for twenty years. Can you hear me rattling?






(C) JPT 2007.........

"My Kayaking for October 2007"

Jac rhymes with kayak...sort of;)


...so what better opportunity to stick another pic of my best mate Jac in my kayaking post. I promise that for November's kayaking post, I will have a pic, or better still a video clip of me doing a roll using just my hands.

As you can see, I'm not getting too much kayaking done now the weather has taken a turn for the worst. Not really an excuse at all, but it's my excuse;)
Ian has been trying to get me to go to a purpose built white water kayaking venue an hour or so up the M1 in Nene. I tried to get in there but they said I haven't enough white water experience and can't go in without a three star instructor with me and will have to book myself in for some WW sessions. So this is what I will do eventually. Looks like fun in there.



Thursday 4th October 2007 @ 21:00pm, No Lee or Ian but James was back after a long spell away...he thought he'd lost his ability to roll but did one on his first attempt, my ankle (left) was all back to 'normal' and Owen & I played tag.

Sunday 14th October 2007 @ 17:10pm, Twickenham to Richmond and back against the current both ways on the Thames, 1hr 7mins paddling, warm and no wind, although the water was freezing on my feet as I launched by St Mary's Church, temp 17, wind 4. I found seven tennis balls:)

Thursday 18th October 2007 @ 21:00PM, Lee, Ian, James etc, ankle felt like shit, Ealing Pool.

Thursday 25th October 2007 @ 21:00pm, Ealing, 90 mins, Ian (Lee had a cold), during the last five minutes I did my first ever roll using just my hands!




Jason






(C) JPT 2007.........3189.57 miles.

"My Cycling for October 2007"

Me in Richmond Park (RP) during October 2007.


Ouch!! Back on the crutches again! At the time of posting this (07.11.07) I am stuck indoors recovering from a fall on my bike last night, half way around a ten mile loop of Leith Hill in the Surrey Hills...in the pitch blackness of night! I did have lights, but what with it being autumn and what with all the leaves covering up the trail, I failed to see a ten inch deep puddle of mud and as soon as I went into it I stopped dead and didn't unclip my foot from my pedal in time and went over quite heavily onto my right knee slap bang onto the only rock for half a mile;)
It hurt like hell for a good 30 seconds, but I had to carry on. I brushed myself down and continued with the remaining five miles with a very sore knee! All the while knowing that I should get home asap for some much needed F8...which I did.

So now I'm stuck indoors wondering just when I will be able to go back out on my bike. I'm at the 3189.57 miles mark out of my goal for the year of 3600. I better get my skates on eh;)
Plus, it looks like my Thursday nights kayaking session tomorrow will be spent in my flat!! Anything good on telly?



Tuesday 2nd October 2007 @ 18:00pm, RPx2 & 3 quarters, 27.35 miles, av 12.8, max 27.4 mph, clear & sunny then dark & cool, 2hrs 7mins. Total 2972.52 miles...(2579.1 miles since Cateye)

Friday 5th October 2007 @ 15:30pm, 13.86 miles, av 13.3, max 26 mph, RPx1, 1hr 2mins, clear and sunny, I got stung by something on the way round!, wind 7, temp 18. Total 2986.38 miles...(2593 miles since Cateye)

Monday 8th October 2007 @ 20:30pm, RPx1, 12.46 miles, 58mins, av 12.9, max 24.6 mph, dark & mild, dry, saw two badgers, right ankle really hurt and felt very vulnerable! Total 2998.84 miles...(2605.4 miles since Cateye)

Wednesday 10th October 2007 @ 16:00pm, 21.20 miles, RPx2, dry & mild, av 12.8, max 27.4 mph, right ankle hurts still, 1hr 39mins. Total 3020.04 miles...(2626.6 miles since Cateye)

Friday 12th October 2007 @ 19:15pm, 22.73 miles, Lee, BP & RPx1, Dark and warm, no wind, av 12.3, max 24.3 mph, 1hr 51mins, right ankle still feels like shit, wind 2, temp 17. Total 3042.77 miles...(2649.4 miles since Cateye)

Monday 15th October 2007 @ 12:00pm, Phil, HH & LH, 12 miles, av 8.4, max 26.8 mph, 1hr 25mins pedaling, ankles felt ok, warm & sunny, temp 17, wind 10. Total 3054.77 miles...(2661.4 miles since Cateye)

Tuesday 16th October 2007 @ 20:00pm, Swinley Forest, Bracknell, Lee, James, Paul & Michael (James' mates), 8.12 miles, av 7.2, max 18.6 mph, 1hr 7mins pedaling, mild but very wet and slippery!, dark too, I fell off a few times and grazed my right knee and inside right shin, finished ride at 22:10pm. Total 3062.89 miles...(2669.5 miles since Cateye)

Friday 19th October 2007 @ 19:20pm, BP, RP, Lee, 20.67 miles, av 12.3, max 24.2 mph, 1hr 41mins pedaling, dark, clear and quite cold, my toes were frozen!, temp 9 (felt like 2), wind 3. Total 3083.56 miles...(2690.2 miles since Cateye)

Sunday 21st October 2007 @ 15:00pm, HH, LH, 18.72 miles, av 9.2, max 27.3 mph, 2hrs 2mins pedaling, bright and sunny, mildish, very busy up there with other mountain bikers, ankles felt ok, temp 13, wind 4. Total 3102.28 miles...(2708.9 miles since Cateye)

Tuesday 23rd October 2007 @ 19:30pm, RP, 14.23 miles, (new leg covers) av 12.6, max 24.5 mph, 1hr 8mins pedaling, cool & dry, dark. Total 3116.51 miles...(2723.1 miles since Cateye)

Friday 26th October 2007 @ 19:00pm, RP, 14.21 miles, av 13, max 23.7 mph, 1hr 5mins pedaling,, cool & dry, dark, temp, 10, wind 4. Total 3131.72 miles...(2737.3 miles since Cateye)

Sunday 28th October 2007 @ 19:00pm, RP, 12.50 miles, av 12.8, max 22.2 mph, 58 mins pedaling, dark & pouring with rain, windy and mild. Total 3143.22 miles...(2749.8 miles Cateye)

Tuesday 30th October 2007 @ 20:00pm, LH, Lee, James & Paul, 10.03 miles, av 6.9, max 29.2 mph, 1hr 27 mins pedaling, dark & clear, cool, I forgot to bring my lights and borrowed one of Lee's...I couldn't see a bleeding thing!! Total 3153.25 miles...(2759.9 miles Cateye)



Jason








(C) JPT 2007.........3189.57 miles.

"I Want to Hold My Hand"

My left hand today (Friday). It is the hand that feeds me, that I punch with, that I grip best with...throw darts with, flip-off with (as in swear), scratch with, inject with, pick my nose with. It is the first hand to hit the ground when I fall off my bike. It is the hand that pulls my seat belt over my body. It is the hand that does absolutely everything for me when I have a bad bleed in my right elbow. It is the hand that changes gear in my car. It is the hand that holds me up when I switch my suspension on and off with my right hand on my bike. It is the hand that tips my HIV & pain killer tablets into my mouth everyday. It is the hand that I will save you with if you ever fall into an icy lake. It is the hand that I will hold your hand with if you let me...



"It is dark and it is cold and everyone is sick and abominably uncomfortable with life"


...but I still do what I do best, which is hold on tight and shut my eyes (for the most part) and hope for the best.
What with a mouthful (literally) of very painful ulcers over the last week or so (almost gone now after a few Thalidomide tablets) and aching ankle joints, I had just about had enough until I thought how much worse off things could be...and most probably will be one day.
I sometimes wonder what would happen to me if I stopped all my HIV medications. Whether I would stay well or instead go on to develop full blown AIDS! It has been exactly twenty years since I first started my HIV medications and have been strictly taking them daily every single day since, more or less without fail! Not (as I learned from my HIV doctors) an easy feat to keep up to say the least. I've been on several HIV drug trials throughout the years and I have been through a few medication changes too (due to side effects or them not working as well as they'd hoped for) and here I am, still alive and still taking the drugs. Also, just for the record, I stopped taking my twice daily Aciclovir (Zovirax in tablet form) drugs to prevent me from getting cold sores. I stopped just over a week ago to see what would happen. I haven't had any cold sores yet! The reason that I decided to stop with them was because they aren't too good for your liver and well, without them my liver will thank me right? I haven't told my HIV doctors, but will do when I visit them next week. I think they'd prefer it if I wasn't taking them anyhow.

What am I going on about? I'm not so sure myself to be honest. Just thought of writing something and this is all I could think of. Plus, I wanted to tell everyone that I did my first ever roll in a kayak on Thursday using just my hands (no paddle or float). It was during the very last five minutes of my ninety minute session over at Ealing Pool. After an hour and twenty five minutes of just fucking around and doing regular rolls and stuff, Ian comes up to me and said to try a hand roll. I've tried before and failed on every attempt and just thought I'd fail again, but I thought what the hell and tried. I threw my paddle over to the side and capsized. After three attempts I did one and then another and another! They came to me as quickly as that! The proof of the pudding will be whether I can still do them next week. We shall see, but I am feeling pretty confident. Cheers Ian.

It'll be Christmas soon, then Summer will be here again.


"I Love the dark and I Love the cold, but I don't so much care for sickness and feeling abominably uncomfortable with life"



Jason

P.s. Congratulations to UC achieving "SVR" recently. You da woman! xx








(C) JPT 2007.........3131.72 miles.

"My Kayaking For September 2007"

Jac (My bestest friend) @ The Buffalo Bar in Islington to see "William".



As you can see, not a lot of kayaking during the month of September. The main reason being that I have been doing loads of cycling and have been more or less relying on my Thursday night pool sessions in Ealing to do a bit. Plus I missed one session in Sept due to the fact that I couldn't walk! I wanted so much to go but was in far too much pain!
I don't even have a photo related to kayaking to post with it, so I thought I'd stick another pic of my best friend Jac up as this is what I did last time...besides, I think she looks far much better than I do;) Apology's for the fact that the photo wasn't even taken in September. I took it on 9.10.07 (Jac's Birthday) when we went gigging.


Thursday 6th September 2007 @ 21:00pm, I managed to get Jac to come along and promised that I wouldn't tip her in;), The pool was very packed with other boats which is unusual and made the whole experience a little disappointing, Jac got out early and sat on the side watching, if the pool was more quiet she'd have had a much better time. It was her first ever time in kayak too. I hope she goes again:)

Thursday 13th September 2007 @ 21:00pm, Ealing Pool, Lee & Ian, 1hr 30mins, no Jac this time...don't suppose we'll ever see her there again bless her little cotton socks;)

Thursday 20th September 2007 @ 21:00, Ealing pool, 1hr 30mins, Ian, Lee had cold, Ian has new boat, I was using a pair of hand paddles from the states tonight and found them to be quite good fun. So easy to roll with them...I think they were a little too big really and could do with a smaller pair. Ian's ankle is getting better and hopefully he will be able to come cycling with us again.



Jason








(C) JPT 2007

"My Cycling For September 2007"

Me during my 100k marathon in Ruthin 16.08.07



Another month and another cycling post...yipee! Looks like I passed the 3000 mile mark for the year and I'm beginning to wonder if I will manage the 3600 by the time this year is up on December 31st? 550 odd miles in two & a half months? You betcha!!! Although I have been cycling and stuff, both my ankles have been playing up whether it be walking or cycling or just sitting in doors doing not a lot of anything! Walking though mainly causes the pain. I'm more or less ok cycling just as long as I don't put my feet down at traffic lights or at gates into RP etc, ie; impossible! But I still do it because...because I can.

So, what else have I been doing? I had meself a fibroscan at my haemophilia centre in Hampstead the other week and got a score of 9.6. They were happy with it, so I am too. I wasn't expecting the scan, nor did I particularly want one, but I had it anyway because...because I can.

Jac & I went up the hill...actually, we went up to North London on Tuesday to see a live band called "William". It was her birthday too. We had a great time although we nearly missed the last train back to Waterloo and then nearly missing the last train back to Twickenham too!
Again, Jac fell in Love with the lead singer Gavin and got me to take a photo of them together. Good band! He sings without his shoes because...because he can.

What else, what else, what else? Oh, yes, I went to Preston to this years Haemophilia Society AGM. I'd never been to one before and I gotta admit that if certain other haemophiliacs weren't there, I'd probably not bothered going. Ros was there as were Matt and another typeIII vWd Helen. She is pretty cool as she is a fellow Blakes 7 fan and she has a vein in her arm that vibrates! Now if that ain't cool, then what is?

Anyway, here are the stats for last months cycling;


Sunday 2nd September 2007 @ 12pm, Phil, RPx1 and a half, 17.43 miles, sunny and warm, dry, av 11.6, max 32mph, 1hr 30mins, temp 20, wind 14. Total 2727.95 miles...(2334.5 miles since Cateye)

Wednesday 5th September 2007 @ 17:00pm, RPx2 with small diversion to Jac's work to say hello and pump her back tyre up, warm and sunny, 25.36miles, av 13.2, max 28mph, 1hr 55mins. Total 2753.31 miles...(2359.9 miles since Cateye)

Friday 7th September 2007 @ 18:00pm, 19.83 miles, RPx1 and diversion to Mums for dinner in garden, sunny the dark, warm, dry, av 13.4, max 27.1 mph, 1hr 29mins, temp 22, wind 5. Total 2773.14 miles...(2379.7 miles since Cateye)

Sunday 9th September 2007 @ 12:30pm, Phil, HH & LH, 21.73 miles, 2hrs 31mins, warm, sunny & dry, Phil crashed a few times including one on BKB...he's fine I might add!, av 8.6, max 34.2 mph, temp 24, wind 7. Total 2794.87 miles...(2401.4 miles since Cateye)

Wednesday 12th September 2007 @ 18:00pm, RP on the road, 17.97 miles, warm, dry & sunny, 1hr 14mins, av 14.6, max 36.8 mph, temp 21, wind 4. Total 2812.84 miles...(2419.4 miles since Cateye)

Friday 14th September 2007 @ 18:00pm, BP, 10.17 miles, av 14.8, max 22.9 mph, 41 mins, dry/dusk, temp 19, wind 5. Total 2823.01 miles...(2429.6 miles since Cateye)

Sunday 16th September 2007 @ 09:30, Ruthin North Wales, Lee, Phil, Merida MTB Mountain Bike Marathon Series Final, Lee & Phil both did 50k and I did 100k, 58.04 miles, av 8.2, max 35.3 mph, 8hrs out and 7hrs pedaling in total, finished @ 17:25, sun, strong winds with clouds and rain later...see blog entry for 21st September to read about the ride. Total 2881.05 miles...(2487.6 miles since Cateye)

Sunday 23rd September 2007 @ 12:40, Home to Central London (Hovis "Freewheel" Bike Event) via A3 & Vauxhaull Bridge (going)/Waterloo Bridge (coming back), 40.58 miles, av 12, max 30.4 mph, mostly sunny and very windy coming back, 3hrs 22mins pedaling...back home at 5pm, temp 21, wind 14. Total 2921.63 miles...(2528.2 miles since Cateye)

Sunday 30th September 2007 @ 17:00, Lee, out for a little ride to see how my ankle was after three days of agony!, BP & RP, 23.54 miles, av 13.8, max 26.7 mph, 1hr 42mins, mild and bright, ankle was fine in the end and feels like it is 'back to normal'...thank goodness!, temp 16, wind 9. Total 2945.17 miles...(2551.7 miles since Cateye)



Jason








(C) JPT 2007.........3042.77 miles

"When The Vein Blows"

Alone but not lonely...

The quivering beast that finds it's peace
By lying low a while, until finding a feast
...Red veins that blow so fine and right, I seen it all tonight,
Blue veins that hide from fright, I saw it all that night,
So close to Curtis, so far from Deirdre,
The distance don't matter for neither can hear me
Tarmac invites plane to visit hard, water laps up against garage door whilst warm hands sleep on my thigh!

Not quite right, but I'm not pushing it away!



Jason


Happy Birthday Jac xx








(C) JPT 2007.........

"Walking Trivialities"

South Bank last Sunday during my London ride...the graffiti was more fun than the ride;)


God! I'm so bored! It's raining in my head, in my ankle and it's raining outside (it was at the time of writing this sentence;)! Fuck it! Fuck it! Fuck it!
Where the sticky shit did that bastard bleed come from? Was it a bleed? I'm not really sure? It didn't swell up like a bleed, like they used to do when I was younger. Like a balloon filled with boiling blood sticking out the side of my ankle joint! More of a bone thing going on. A deep, deep down feeling right in the center of my ankle joint! As my friend Ros so perfectly described recently - Just like a poisonous bone eating worm was living in there - very nasty! Very good description Mrs C.

It all started last Wednesday night. I had been out to London to see a film. Hardly any walking at all. Just a little between trains and to and from my car from the station. Done it a thousand times with and without pain. Been caught out before but all was well again by the morning after a few thousand units of Factor VIII. But not this time!

I got off the train at Twickenham and started to walk up the stairs to the road to take the short walk across the railway bridge to Waitrose carpark where my car was and there the pain started. Nothing unusual about that. It often hurts just after I have been sitting still for a while. Got to get the joint moving a little before it sorts itself out. Ros'll tell you the same.
So I thought nothing of it and adjusted my walking style to help relieve the pain that I was feeling and continued through the ticket machines and out onto the pavement and over the bridge.
Halfway across the bridge and I was walking like I had been shot in the foot by a lone sniper atop Waitrose! Bam!! All of a sudden the remainder of the very short walk back to the car became a ten minute pain filled struggle where each step made me grimace in agony! Not long to go now, just another few hundred yards and I will be with my car, back home, back with my precious factor VIII.

Little did I imagine that it would last the entire evening, all the way through the night and all through the next two days! Christ on a bike! That first night I didn't sleep a wink, couldn't find a single pain-free spot to put my stupid foot! I downed 10 strong pain killers during the night and they had no effect whatsoever! I'm surprised I didn't do meself a mischief with that amount of PK's! Very silly looking back, but at the time I wasn't thinking straight. I can understand how people can accidentally overdose when they're in so much pain.

Besides the pain I was in, I was also rather concerned that I had a permanent injury that was just not going to go away! I had visions of crawling around on my knees to the kitchen and bathroom for the rest of eternity (one day was enough!). My knees stung when I lowered myself into a hot bath on Thursday night due to carpet burns! (first Thursday night kayaking session I have missed since I started going nearer the beginning of the year). I got Lee to come around with my Mums crutches that she used recently for a knee replacement and used those until the ankle miraculously sorted itself out on Sunday morning (today). I tried to walk on it with the aid of the crutches on Saturday night to see if it was alright to do so and it kind of felt ok.

Then on Sunday morning the bastard was all more or less back to normal. What a relief!! I was worried I had buggered it once and for all! It's bound to happen one day, I just know it! Looking back, I think it was my ankles way of telling me that I had used it too much over the last few weeks and to calm down a little. I might not have been out for many rides over the last two weeks, but the few rides that I did do were very long and hard and something was going to give right? Sunday before last I did my 100k off-road marathon thing up in North Wales and then nothing until the next Sunday (last) when I took a lonely trip into central London to be part of the "Hovis Freewheel" ride where several miles of London's most popular streets were closed to all traffic except bikes. 38,000 bikes attended the event and all I can say to describe it is that it was THE largest bicycle jam in the entire world!! The weather was good but the wind was a right fucker coming back home into Kingston along the A3. I decided to cycle the whole way (40 odd miles) from my flat to the event and back again and to be honest with you, I don't really think I had recovered properly from the marathon a week before.

Will I learn from my experience? I really do hope so! But probably not.



Jason


P.s. Way to go Amp's...SVR girl:)








(C) JPT 2007.........2945.17 miles.

"Merida MTB Marathon Series Final 2007 in Ruthin"

Bleed? I ain't got time to bleed!


So how did my recent MTB marathon go up in the beautiful hills of North Wales?...Ruthin and the surrounding area to be precise. Well, it went very well indeed. The weather was good after fears of pouring rain and 10hrs+ in the saddle with light fading fast as the mud made for an ultra slow ride! And also fears of the marathon even being cancelled because of an outbreak of Foot & Mouth that is going on here in the UK at the moment. Instead we were all told to bring clean bikes and footwear, especially if you're from the affected part of the country (as were I, Lee & Phil) and we had to roll our bike wheels and walk through a shallow trough of disinfectant to kill any germs we might be carrying. In fact, all 1000+ riders had to squeeze through the exact same trough before we took our bikes out into the North Wales hills between 09:30-10:00. It was the biggest traffic jam (with bikes) that I have ever seen! Of course everyone wanted to get away as quickly as possible to be in for a chance of achieving a good time.
We were camped on the grounds of Ruthin Rugby Club for the Saturday night (15th) and the ride started the following morning. After a decent sleep in a half decent tent and under a cloudless night that contained what looked like the entire solar systems alloted amount of stars we got our bikes & Camelbak's ready in gorgeous sunshine and downed some tasty porridge and sliced banana. This final leg of the "Merida MTB Marathon Series 2007" was the first that Lee & I have ever done. Phil had done one last year and this is where I first heard of the Merida event (Merida make mountain bikes). There were four routes on offer at the Ruthin event; 25k, 50k, 75k and 100k. I thought I'd do the 100k if the weather was good enough and if not the 75k but the weather was good, albeit very windy on some of the more exposed parts of the route. The wind was so strong at times that I had to pedal to get down a decent! But at least it was dry and warmish.
The three of us set off together through the pretty streets of Ruthin and up into the hills. My goodness! The hills were long and steep and hard going! I had to push my bike more than once they were that steep! If only I had another gear I kept saying to myself. A slightly larger cog on the back and a slightly smaller ring on the front and I'd have pedaled near enough the whole lot I reckon.
The sun shone for a few hours but then decided to go all overcast and windy! We soon found our own paces and I wouldn't see Lee & Phil again until I reached the finish line some 7hrs later, by which time they already finished & had washed their bikes, showered and were sat in the van waiting for me to arrive. They had both decided to do the 50k ride and when didn't see me at the finish, they knew straight away that I was on for the 100k. They completed their ride in 6hrs and crossed the line within two minutes of each other. I however took an extra 2hrs and crossed the line all alone after a mental 5k wet decent into Ruthin village. My hands were sore from gripping my handle bars and pulling in the brake levers. I had almost no strength left in my hands and right arm by the end! My legs had also had enough and my bike needed a good wash, not to mention me!
It was a thoroughly rewarding ride. I went at my own pace the whole time and even after the relentless wind, a puncture after 90 mins and an uphill fall where I couldn't un-clip my feet from the pedals and whacked my right shoulder & head on the ground (hence the bloody nose...the ground hit my helmet, the helmet pushed down into my glasses and my glasses cut into the bridge of my nose) I still managed a pretty good time. I made all the deadlines before you got diverted to make sure you weren't stranded out in the middle of nowhere in the dark. I was wonderfully exhausted by the time I reached the finish line and picked up my event t-shirt for finishing, had my FVIII and went home still with bloody nose and dirty bike!

The event was very well organized with several feeding stations along the 100k route, most of which I just picked up a fresh banana, had a little stretch and continued along my way. I was on a mission and really didn't want to stop at all. Each feeding station had water, bananas, biscuits and energy bars on offer and first aid too. The whole course was marshaled also. Each one would cheer you on and encourage you to keep going. And also, each one who noticed my bloody nose asked if I was ok. They really did a brilliant job. The entire route was very well sign posted. It is amazing just how quickly 1000+ mountain bikers spread out over a 60 mile course! I found myself alone for a fair bit of the ride...just me and Elvis and my aching joints. And that is just what they did too...ache. I can't have been happier for the way my joints behaved leading up to, during and after the ride!

I can't wait for the next ride! Next year I shall try and do all of the Merida events that are held. That'd be a nice challenge to achieve...even more so if I can do the 100k route in all of them!

Anyway, Wednesday saw another inquiry come and go. And again I went along to show my support and meet up with friends who have also been affected. I still don't really know what to make of it all. The evidence seems to be along the same themes with every inquiry and nothing as far as I can see has really stuck out and smacked me in the nose. Yes, there are terrible stories of haemophiliac Sons dying of aids and stories of how Factor VIII was made and distributed back in the day, but is there anything that can secure exactly what we are asking for? I don't rightly know. I'm not even sure what it is we are asking for anymore? I'm just happy to see and spend a little time with my old/new vWd/haemophiliac friends once a month or so:) I also invited along my friend Debbie to this one.
There will be more inquiries to come we have been informed, but as of Wednesday no dates set.

I need to get out on my bike again! My legs feel as if they haven't pedaled for weeks and it's only been four days! I have just been so busy I suppose since Monday..., well Monday & Tuesday was spent recovering from Sunday and Wednesday to a certain degree also (I nodded off about 18 times during the inquiry...Ros had to keep poking me to wake me up;) and maybe even Thursday if I am honest and yesterday (Thursday) was spent up London again with Debbie to see a show called "Stomp" which was superb! If it's in a city near you, then go see it! You will want to bang anything & everything...including the kitchen sink (if you know what I mean;) when you get home. And then Thursday evening was spent in the pool kayaking. Plus Elvis' rear cassette has come loose and needs sorting! Silly Elvis!



Jason








(C) JPT 2007.........2881.05 miles.