"My Mate Factor VIII"

Me yesterday on Pitch Hill with a very clean Elvis...and look!, I've got my ruck-sack on back to front and I lost my Hep C Badge that was punned to it too! What a wally!



Firstly let me wish my best mate Lee a very happy birthday for Friday just gone. He turned a whopping 36 years old on that day. I've known him for nigh on 26 years and you couldn't even dream of finding a nicer buddy such as Lee has been to me! Cheers dude and thanks Nicola & Evie too for the wonderful BBQ in your new garden. Also hello to Pam (Lee's Mum) who was there too who might be reading this Blog for the very first time.

Right, so on to my Factor VIII level test results...again! This second lot (taken on the 1st August) of doing without F8 for a full 6 days produced some just as interesting results as the last time. This time I went to 4% after absolutely no F8 for 6 days when I am supposed to be less than 1% considering I am a severe haemophiliac! But no! I am 4%. Not 5% like I was last time a few weeks ago...and not less than 1% like I must have been when I was diagnosed back in 1973...but 4%. So...they want to do it all over again a third time in a few months time to see if it changes again. I reckon that the rate I am giving away my bloody blood I shall have less bloody blood in me than a blood bank that has just been bloody robbed!
They (My docs) said that your original haemophilia diagnoses can actually improve as you get older. The normal range for a normal normal person is between 50% and 150% Factor VIII. Maybe by the time I am old and grey (around the 360yrs mark) I shall be a Haemophiliac no longer. Will I become a Moderate to severe as time goes on or shall I remain a severe for as long as I live no matter what my Factor VIII levels are? I was born a severe...therefore I shall die a severe! So up yours ugly!!

Christ! You should have seen the needle they stuck in my vein! And it was a vein I have never ever used in the whole of my bleeding life ever in the whole wide world...ever!! It was just three inches short off the height, length & width of an actual London Underground train! But fortunately not as blunt and as slow;) And did it suck the blood out too! When I cut myself shaving later on when I was back home I bled water! They bloody took it all!

Ok, the weekend. Saturday was spent down on a small section of the South Downs Way just outside Worthing on the South Coast where my friend Matthew lives. He's the creator/founder of the website Blood, Sweat & Tyres. He raises money for the Haemophilia Society by riding bikes over long distances with other riders who are willing to ride along with him and raise a little money on the way. He's the chap and his mate Phil (among others) who I am riding with next weekend across the North Downs Way.

Phil (left) & Matthew on the South Downs Way Saturday.

Matthew, Phil & I did 35 miles in total on what has to be one of the best days weather wise this summer (see photo above). The sun shone the whole time, the route Matthew choose was very scenic and was a very pleasant ride indeed. It was kind of a small taster of what to expect maybe next weekend during our 100 plus miler across the North Downs Way from Dover to Dorking. There will be seven of us riding and an eighth man (My mate Lee) who'll be driving the support vehicle. All seems to be going according to plan and the ride should be hard but very rewarding. I can't wait!

Next comes Sunday (yesterday) and I went for my second ride of the weekend this time with Lee. And instead of the SDW we headed for a small section of the NDW and did 10 miles around Pitch & Holmbury Hills. And what a complete contrast in the weather! Just half a mile into our ride the heavens opened and completely and utterly drenched us and our hills! The trees were next to useless at being umbrellas so we headed off back to the car and almost went home because we were so wet but the rain stopped and the sun kinda came out again and off we went and did another nine and a half miles through water logged single track where the roots are as slippery as eels and the mud was as brown as dark chocolate ice cream! I fell off twice at very slow speeds because I couldn't get my feet out of my pedals quick enough. I blame it on the eels! We had a bite to eat by Peaslake Village and watched the other mountain bikers come and go covered head to toe in mud and water as were we. We did in fact end up having a great time and a good laugh too. I certainly didn't look as clean as I do in the photo at the top of post.

Oh...remember I said I went to see The Eighties MatchBox B-Line Disaster late last month? Well, I went again last Tuesday in London. I took an old friend who used to live down my Mums road in Twickenham as I knew he would like them. Another great live band experience! Very loud & atmospheric! This time I recorded the whole gig on my digital camera and have been uploading it onto YouTube the last several days. If you go to this link; http://www.youtube.com/TheMightyC you'll see all my videos in one place. Check out the gig at London's The Scala. The quality seems to be worse on YouTube than it is on my Mac. I think the uploading process downsizes the file size and therefore the picture quality too. But it's still ok. The highlight of the night was when I stole a poster advertising the gig from one of the inside doors directing us to the stage area. I missed out last time in Brighton as I waited until I came out and well, it was gone! Also right at the end of last Tuesdays gig, Guy (singer in the band) threw some bottles of water over and into the crowd and one of them landed right at my feet. And being the sad case that I am...I picked it up and still got it in my kitchen.




Jason


Happy Birthday to Claire (15th) & Becky (11th) too:)xXx






(C) JPT 2007.........2426.98 miles.

"The (un) Infected"

Heart Shaped Moss that I found on the entrance into Teddington Lock over looking the River Thames the day before I got my SVR results (18.07.07) I was out cycling and had a rest and a think and a contemplate before I went back home just around the corner.



Oh yes! The uninfected will keep going on about it won't they. I must remember to remember that I'm not totally uninfected am I, & my Hep C could come back...couldn't it? I must try and remember that. Did I just say that? Oh Yes, I did;)
You know what I mean though don't you. My Hep C is still up in viral heaven, heavily indulged in some sort of sordid sex act no doubt with someone else's recently gotten rid of Hep C. I can just imagine them both right now, entwined together like a couple of horny slugs, with a sign on the wall saying "HIV virus welcome" (You never know, maybe one day eh). They're not bothered about their previous owners in the very least! They're far too stupid to care about us anymore.
As a result of my good result, I have found (as I new I would) that my cycling OCD has more or less gone away and although I am feeling quite tired these last few weeks during my rides I am still doing the miles. 30 on Monday and another 30 Wednesday afternoon and yet another 30 miles yesterday afternoon. Talking of cycling, maybe someone can help me...Warrior Woman? A few times now whilst riding around RP I have almost collided with a few runners coming from the opposite direction on the Tamsin Trail. What happened was that as I was going along minding me own business, listening to me moosic on't i-pod and also minding to stay on the left hand side of the track (just like you would on the roads here in the UK) these runners were on their right and seemed surprised that I didn't move over for them and instead carried on as I thought I ought to. I wasn't going too fast and could see that they could see me and anyway, they didn't like it and right at the last minute jumped out of my way and shouted something. I didn't say a word as I really don't know what the score is for a shared public footpaths/trails. Is it the same as on public roads, like I had thought? If it is then they should be on their left too right? Maybe they don't drive cars and don't have a clue what side to be on (but then do many car drivers either?). Most cyclists stay on their left and so do some runners...but most people just walk/run/cycle wherever the hell they want! I won't be the one crying when my bar end pierces someones soft belly or tangles up with another cyclist (believe me, it has nearly happened on more than one occasion!) and we both end up on the gravel apologizing to each other with me shouting "Stay away from my blood dude! You really don't want to get involved!";)

Also yesterday I was up at the RFH having an MOT on my joints, in particular my right elbow (also known as my 'Glass Elbow' and my 'Broken Wing') and both my ankles. My physiotherapist (Paul) drew some marks onto a sheet of paper that had an outline of my entire body on (back & front) and began to mark it with a biro where I was having problems. He also moved and pulled and twisted (firmly but very comfortably I might add) all my joints and came to the conclusion that both my ankles and my right elbow are indeed fucked and booked me in for another visit in two weeks time. He also X-Ray'd my left ankle as it has been playing up quite a bit whilst walking. He thinks there might be something rough or sticking out where the two bones rub together. Hopefully the X-Ray will show us what there is and maybe what can be done...if anything. I told him about all the cycling I do and kayaking and not once did he say that I shouldn't (which is good). Actually, even if he had I would have said 'Up-yours' and walked out...No bike...No Jae...Simple!

I had a great (last) weekend away in Kidderminster & Shrewsbury with a whole bunch of people from the Hep C forum which Joan had wonderfully organized. Ros & her Hubby Ade put me up for a couple of nights at their Kidderminster home and fed me & bathed me and watered me too:) Then on the Saturday we drove to Shrewsbury and met up with Joan and her Hubby Steve and loads of others too who are either on tx or have been on tx. And what a great bunch of people they are too. The weather was great and the food was also very tasty...especially Ros's flapjacks:)

Anyway, enough about that. What about my dreams? Have you noticed in the last several months that there has been a distinct lack of dreams in my blog? I thought you did. Ever since I finished my treatment for Hep C my vivid and highly detailed dreams have dried up terribly and left me with just tiny bits and bobs...even straight after waking from my dreams I can't remember them much at all! For instance; I had a few dreams the night before the night before last that I almost certainly would have remembered in much more detail previously. My bike gets stolen from a railway station, I look for it, find it and stick a scalpel into the young man that took it! In another one the same night I dreamed that a very good friend of mine got their Hep C back. But where are the details? And what's happened to my poetry? Where has it all gone? I do have a few dreams saved that I never posted whilst I was on tx. The one about the freeze dried vagina's (which I like) and another about a little boy who gets crushed under the wheels of a very big lorry (which I don't) and another where I come face to face with a green (and very sexy) woman swimming in this flood (which was also green) just outside my front room window (I like that one too).
Oh, one thing I do remember is that when I found my bike the wheels were all loose and wouldn't spin properly and just a little more gross is that when I stuck the scalpel into the Man's body I could feel it digging & picking into his bones!

And another thing. I have to do that study again where I do without Factor VIII for 72hrs to determine what my Factor VIII levels are because my results came back at around the 5% mark (I'm supposed to be less than 1%). What does this mean? Am I a moderate to severe (or even mild?) haemophiliac all of a sudden? I'm sure they think I didn't do my bit and stay away from the Factor during those 72hrs. I assure you my droogs that I did.
So back I go on Tuesday next week to have more blood sucked out from my leech-like vein and a whole weekend without any Factor whatsoever. Must remember to take it easy when I'm out up in the Surrey Hills on Sunday with Phil from 'Blood, Sweat & Tyres';)
And on Tuesday night I am up at The Scala in Kings Cross to see The Eighties Matchbox B-Line Disaster' again:) Jac's on holiday in Portugal for that week so I have to find someone else to go with me who doesn't mind getting kicked in the head by crowd surfers or going deaf even!

Check out the video for their new EP 'In The Garden' in this link;

http://www.youtube.com/watch?v=o5ELJfSbm58

I Love this band!



P.s. If a bucket is too much, then a milk bottle will do;)




Jason








(C) JPT 2007.........2348.60 miles.

"Drunk on the Blood"

Jac & I at an Eighties Matchbox B-Line Disaster gig @ The Barfly in Brighton, 25.07.07.



Still don't know exactly what to think about my new health status except that I am 'well happy' and 'well relieved' that I won't be dying a Hep C related death any time soon. Otherwise business as usual...me arm kills me, me ankles kill me, still swallowing mouthfuls of Lovely tablets everyday with plenty of cycling and kayaking and not really a whole lot else besides. Ooh, I did go see a live band on Wednesday and attended another hearing for the public inquiry in Westminster just hours before the gig and I have given a fair bit of blood too (Thursday in fact) in a study that my doctors are carrying out up at the RFH called "Determinants of thrombin generation in Haemophilia: Does this associate with phenotype?". Sounds good eh? I'm not entirely sure what it means either, although I was given some literature to read and did indeed read it, but I still don't really know what it is for except it has something to do with my Factor VIII levels. I know I should probably take more notice of and show more interest in all things blood, especially when it is about my blood, but to be truthful I don't really want to become a doctor or an expert on the red stuff...not even a semi-expert...not even a mild one. I think I will leave all blood related things to the wonderful doctors at the RFH. I didn't even get a tube of Smarties for all the blood that they scoffed!

So, another public inquiry came and went (on Wednesday afternoon) and was dare I say it rather boring. Maybe I missed something, I'm pretty sure I did as I was nodding off to the gentle voice of Professor Ian M Franklin of Transfusion Medicine, University of Glasgow and National Medical & Scientific Director of the Scottish National Blood Transfusion Service. The social part of the hearings, where likewise infected people get together before or after and, well, basically socialize...this is the part that I enjoy and look forward to the most. Jac & I met up with Ros and Matt (fellow bleeders and infected...both are clear of Hep C but only Matt & I have HIV) a couple hours before the inquiry and sat in a smoke-free pub (pure bliss:) right under Big Ben in Westminster and spoke about all things HIV, Hep C, Haemophilia, Von Willies, blood, painful joints and how Lovely the fish & chips were that was sat in front of each of us. It was a very short hearing (1hr 30mins) and was held from 2pm. Are they running out of people to invite along? Were the panel busy with more 'important' things in the morning? Who knows? It was Jac's first time there and although it could and has been more interesting she still found it so. But she thinks they are wasting their time & money and the whole thing is pointless. We'll see.

Then came the gig in Brighton, on the same day as the inquiry. The band Jac & I went to see are called "The Eighties Matchbox B-Line Disaster". They're a Brighton band so the crowd were pretty much up for a bit of matchbox mayhem...and matchbox mayhem was what they got too! What a complete bunch of fucking nutters! Look them up on YouTube and see what you think. You will not like them I guarantee it! I however think they are the dogs bollocks! Jac likes them too and knows what they're like but what happened on Wednesday night was pretty mental and an experience to behold. She said she'd never seen anything like it! The place was tiny (The Barfly) and the band and the crowd were only divided by a foot high step, some speakers and a little bit of shoulder height metal fencing to either side of the stage. If I wanted to tug Guy McKnight's (possessed lead singer & according to people that have met him a thoroughly nice chap) snazzy little neck tie I could have. Jac & I were right at the front by the fence and two very big speakers stacked on top of one another. The three support bands that were on before were soon forgotten about and the whole place seemed to move forward nine feet in anticipation of the bands arrival. Guys first dive into the crowd (there was a lot of diving) was to the brilliant track "Mister Mental". He clambered up the floor speakers on the stage and leaped onto the fence where I was standing and whilst bent over up against the low black ceiling of the venue, glitter covered eyes briefly scouring the crowd for someone to land on he dived right into the crowd still singing until he was pushed around on a see of sweaty hands for a few seconds before he disappeared in amongst the crowd! This happened during almost every track, just feet away from Jac & I. Exhilarating stuff indeed! I filmed a tiny bit of the dive I just described...it should be at the bottom of the post with a few more clips.

God knows what was going through Guys mind as he stood there between tracks seemingly unaware of where he was, saliva freely dribbling out of his open mouth, down his shirt and onto the floor. His eyes were wild like a rabid dog and his chin, body & limbs shivered as if half the world's alcoholic population were taking a giant chemical filled piss right onto his grave! His silk neck tie was either beginning to irritate him or he was trying to hang himself with it as he tried to pull the thing off. In the end he settled for the removal of his rather feminine looking shirt after singing for a few minutes with the thing tightly wrapped around his entire head like some sort of mummified psycho.

Although I would Love to have been just three or for people to my right (in the mosh pit) I was quite happy I wasn't too as I didn't have any factor VIII in my blood at all because the study I was involved with the next morning at the RFH meant that I was not to have any F8 for 72hrs before! Next time I will fill myself to the brim with fake blood and just throw myself in;) Ok, maybe I won't...but I want to! Who knows, it might happen as I have already bought tickets to see them again in London on the 7th August at The Scala in King's Cross.

YouTube clips that I made on Wednesday in Brighton;

http://www.youtube.com/watch?v=o5ELJfSbm58

http://www.youtube.com/watch?v=o5ELJfSbm58

Below are my bloods from July 4th. I have no idea what they mean or whether they are any good, so if you no maybe you could let me know?

Bloods taken on July 4th, six months after finishing my Hep C treatment;

Hb 16.2
Wbc 4.72
Neutrophils 2.58
Platelets 127
ALT 23
Bilirubin 13

And in case you are interested below are my CD4 count;

CD4 @ 258 on July 4th 07
CD4 @ 154 on 22nd Jan 07
CD4 @ 202 on 2nd Oct 06
CD4 @ 98 on 9th September 03

And here is my weight taken on July 4th also;

Weight 74.1kg


So there you have it. Very happy (if you know what I mean) and very relieved also. The pubs and clubs (strictly for seeing live bands in) are now smoke free and I am (although I have a lot of pain in my joints) as fit as I ever have been. I got my sponsored bike ride coming up in three weeks which I am well looking forward to and it even looks like the weather is going to get better down here in the South of England in the next few weeks too.
See you when I get back from the Shrewsbury Hep C gathering this weekend. I'm staying with me Lovely friend Ros and her Hubby Ade...thanks guys for putting up with me again;)


Jason

P.s. Happy Birthday (28th July) to my wonderful blogger friend Ample. Have a wonderful weekend my dear:)xx







(C) JPT 2007.........2257.76 miles.