The Glass Elbow

The Train Window, London, 2004

For years & years i had been highly embarrassed of the way my right arm looked! It would look more at home on a 9 year old boy! It has had so many bleeds in the elbow joint from having Haemophilia, i could probably have filled an olympic sized swimming pool. As a teenager i hardly ever took my t-shirt off in public as i thought people were staring at my "skinny arm". Of course, everyone i knew would and still do tell me they don't even notice it. I am still self-conscious of the little extremity. But i wish it had a tad more strength in it.
Today i was out with a friend. His name is Lee and i have known him for 26 years. He has been married to my twin sister Nicola for ten years. He is a good mountain bike companion, as he never falls off or crashes and isn't afraid of steep descents & getting muddy and frozen in Winter. And he knows all about me and would know what to do if i came a cropper down at the bottom of "Deliverance".
This afternoon we completed a 3 hour ride from Holmbury Hill to Pitch Hill and back again, via a downhill single track called "Barry Knows Best". Only God knows where the name of that one came from! It was the first time we had done it. Nice and fast, twists & berms and a few jumps too. We Loved it, but my elbow did not! Lee was complaining about his legs though, which made me feel a bit better:) We carried on anyway and had a great time. And those familiar eels (roots) were out in force again today, but there backs were dry and thus ripe for rubber.
He, like the rest of my friends and family have put up with quite a lot over the years, what with my moods just before and during a bad bleed. I suffer from physical pain on a daily basis and it must be hard for people around me, at times unbearably so. And more recently with my anger frustrations being on Ribavirin. They don't tell me, but sometimes they must feel like punching me in the face!
As for my elbow. I wish it was made of glass. At least then it would be invisible.
Ok, maybe not glass, but Pyrex instead.

Jason

30th injection & Frogs

Frog, Box Hill, 13th September 2006

18 injections left to the end of treatment! January sometime. The month i turn 36 too!
Anyhow, i feel good mostly. Been having some anger issues. Not much of a problem. Just something to concentrate on, so i don't come across as too much of a dick to my family & friends. BBQ tomorrow around my brother-in-laws in Strawberry Hill. Lots of people and children and socializing ect. But guess who is doing the cooking? I don't mind;) I like to make sure that it is done properly.
My trip to the Royal Free Hospital today was rather uneventful really. I like the train ride into North London ( Hampstead), as i get to see the graffiti. I used to do it myself back in the 80's and i still Love looking at it. I have been making the same train journey every year since the late 70's.
Anyhow, It has been 4 weeks since my last bloods & they were very good. I normally go get the results straight away, but today i didn't need to as my docs were happy to wait for them. They could see i was well too. My weight was 79.9kg compared to 79.5kg last time. When i started treatment, for some reason they seemed quite concerned i kept an eye on my weight! I'm not sure why? My weight has been consistent all the way through.
I mentioned my little finger & it's feeling numb and they agreed that it was almost certainly related to my bike riding stints (thanks Ample:) And said i shouldn't exert myself too much! Fat chance;) I will keep an eye on it though.
Do you like the Frog? I went out on Wednesday for a hike instead of my normal bike ride. As i was walking around it started to rain and all these frogs kept coming out of the long grass, onto the short grass at the top of Box Hill. I took a few photos and they all posed for me like professionals;) There is so much more wildlife at night, especially whilst it is raining. But my ankles were sore as they weren't used to it. I think i mentioned this in my last post? Rambling again!.....Just had a quick look at my last post. Looks like i didn't. I am going mad! Or should that be madder?
My best friend Lee was back on the saddle tonight. He has been away for 3 weeks! He found it a bit hard going, but felt good for doing it. It was quite damp out tonight and those exposed roots are like giant solidified conger eels, just waiting to pounce with their slippery backs! I felt a tad chilly at first, but soon warmed up. I always feel a bit chilly the day after my jab.

"Blake's 7" calling! (dvd)

Nunight

Jason

Bodies obtained...

Stencil, Brick Lane, London 2004

I am due to take my 30th Interferon injection tonight @ 23:30pm. I have been feeling fine(ish) since my last jab, except for this niggling feeling of being moody and rather irritable lately. I have had it before, nearer the beginning of my treatment and learned to control it as i find myself doing so now. But i just cannot completely push it to one side or prevent it from happening in the first place. I know what could be causing it. Riba-rage i think they call it. I say 'could be', becuase as far as i can remember i have always been susceptible to mood swings & feeling quite angry about the most insignificant things. My living room walls have had the misfortune of acting as some kind of horizontal landing platform for numerous fast moving phones & TV remote controls over the years. I am happy to say i have stopped throwing things, but the anger is still there at times.
My anger problems may have stemmed from my not being able to understand other peoples actions, not necessarily towards others, although bad enough! But towards themselves! For example; A heavy smoker runs for a bus and then complains when they miss it, all the while coughing up there lungs! Or as you are walking around the local supermarket looking for something nice for dinner and all of a sudden you get this long, nose burning stench from the armpits of the man putting out fresh bananas! I know there are instances where some people have a medical problem, but surely not 1 in 4 'Tescos' staff members.
Obviously, these things i can & do live with as i still go to Tescos for my shopping. But what really made me angry and immensely saddened was the time when back in 1998 i wrote to the Haemophilia Society Newsletter explaining how i was feeling, how isolated i felt and wondered if they could publish my letter to see if there were like minded Haemophiliacs with similar feelings. I got several replies, all whom had Haemophilia, HIV & Hep C. All were of a similar age to me. It went quite well for a while. We arranged to meet with each other. Go out for dinner and just be blokes. It was nice, but i couldn't understand why although we had so much in common, we also couldn't of been more different in so many other ways. I would steer clear of things like smoking & alcohol completely. And recreational drugs too. But these lads didn't. Nor did they take their medication all the time. One lad didn't take his at all! And several months later they started to die of Hep C related illnesses! One by one! There were five to start with, not including me. I got to 3 deaths in a period of 2 years and decided i couldn't deal with it anymore! The rest of us gradually drifted apart and to this day i still don't know how the others are or if indeed they are still alive at all! I knew what was killing them, but just could not help! Surely they must've known they were putting themselves in danger? David, who was a year younger than me at the time had very similar interests as me. He was a big Star Wars fan & Loved music. So much so, he was the singer/songwriter of his own band. He even had a CD album made. Very talented. Such a waste. But having said that, he has probaby achieved more in his far too short a life than i will have in twice that time. I spend too much time & energy trying my best to keep myself healthy and live as long a life as i possibly can, i sometimes seem to forget about having fun & being 'just a bloke'.

Jason

"For the Love of Livers"

Twin trees, Box Hill, Surrey. March 2005


Like a mother might with her new born baby, I cradle my liver in my arms. I stare at it in complete and utter wonderment. Did this come out from me? There was room in there? I can't take my eyes off it. Gently rocking my liver from side to side, holding it tight. It is heavy! Not with flesh and bone, crying or the dead weight of a sleeping baby! But with dirt! Bad dirt that just won't wash away! Not in the normal sense of the word no. But as I close my eyes, i can feel this wet, slippery lump in my tired arms. Trying to wriggle away and leave me all alone. I hold on tighter. He comes back to me. He knows where it is most safe. I can feel the dirt on the surface of my liver. I have traces of dirt on my hands & arms from holding him. I want him with me! Forever! I won't let him go! I want to wash all the dirt away. I figure that if I have soiled hands, then I can wash this filth right away! I scrub and I scrub, with all my strength! The dirt is coming away now. Soon it will all be gone. I continue to cradle my liver. Day in & day out. Whatever it takes! I am there for it. My liver is resting now. The cleansing has begun...


Jason






(C) JPT 2006

New Dawn Fades

Banksy stencil, South Bank, London 2004

I am normally pretty calm as a rule. I do get moody sometimes though. And today i was moody.
Not at first i wasn't. It was a Lovely morning. Nice and sunny, calm. Got all my stuff together and left for Leith Hill. Got a parking space too. Great. Things are going fine. I cycle to the top, amid several other mtb'ers, where the tower is, to see what time it shuts so i can get back in time for a sandwich. They shut at 5pm. I was there at 12:30pm. I then started my bike ride proper with the intention of going via a series of single track trails and coming back to the tower for some lunch. So off i headed towards the top of a single track called 'Waggle Dance'. But after 10 minutes i got a double puncture (in one tyre). My first puncture in nearly two years! Not bad going eh! I had trouble getting my tyre off and i could already feel my right elbow beginning to hurt. I had already taken something for my Haemophilia before i left so i was quite happy that it wouldn't get much worse. I got the flat fixed and carried on through Waggle Dance to the top of another single track named 'Summer Lightning' which i like loads. If only it was longer. Eventually i ended up back at the tower an hour & a half later and went to get a sandwich, only to find they had all sold out except for a grated cheese & sliced egg! I got it anyway, although i new i wasn't going to eat it. They are usually very good. I did have some cake my mum made. MMmmmm. I was carrying 2 and a half litres of water in my CamelBak too. My next destination was to ride to the view point on top of Holmbury Hill via Holmbury St Mary Youth Hostel. I did that and had a Lovely view of Leith Hill and also my next destination, Pitch Hill. My arm was hurting more now, but i thought sod it, and carried on regardless. I didn't make it to Pitch Hill because the route i took wasn't bike friendly. I wish they had some signs up at the beginning of the track, rather than making me cycle all that way only to have to turn back! By this stage i was hurting more and cycling one handed when i could. I still had a good several miles of off road riding to do before i reached the car. My arm hurt quite a lot, but it wasn't a bleed yet. So i just rested my arm on the easy bits and went for it on the long uphill in the opposite direction back up Summer Lightning and then Waggle Dance to Coldharbour and finally back to the car. Yay! I made it and my arm was ok. I was tired and in pain but i had an ok time. But then i leant my bike on my car and it slipped, dented & scratched the body work. Drove the 20 miles home, one handed. Got home remembering not to put my car away in the garage until i had unloaded my bike!! Got in and had an injection for my elbow. That all went wrong and had to start over having wasted 3000 units of Factor VIII. Made dinner which was rubbish! I was tired and in pain. I ate it anyway. Had a bath listening to 'TV on the Radio' which seemed to calm me down a bit. Then got some very painful cramps in my inner thighs. Sorted that out. And now my day is over, and yes... I probably over did it today! Was it worth it? I don't know. Will i do it again? Undoubtedly!
I was thinking while i was cycling. I was wondering how long i will be able to do this kind of thing for. When will my arm & ankles be so bad that i won't be able to go out on my bike? If i can't go out on my bike, what else is there! It's all i do.
Oh well. There is always knitting;)

Jason

Hiking or Biking?

Nutter!


Hiking or Biking? That is the question!

This photograph was taken by my best friend Lee up at Leith Hill. If my Mum saw me do this, she would have kittens! Don't worry, not every photo will be of me and my bike;)

I was all up for a hike on Friday night. Up and down and all the way around Box Hill, Surrey. My mtb was in for a loose bottom bracket. The bloke in the shop said Saturday. Oh well, i thought. I will go for a hike instead. But i got a call saying my bike was ready and the BB replaced with a new one. The one i had was a downhill BB, but i must do some pretty rough riding to bugger it up so quick! Plus i don't have rear suspension which also gives the BB more of a pounding.
Anyway. I ended up going out for a ride instead. So i guess that the answer to the question is obvious. I Love cycling!

I also like hiking too. But i haven't been properly since last October, when i hiked up Ben Nevis in Fort William with my two friends Lee & Nathan. I have done it twice now. But normally, i hike (more like walking) around Box Hill and the surrounding countryside. I was doing quite a lot of night hiking before and during the beginning of my Hep C treatment. I like the isolation and the sounds compared to what you experience in the day.
I will post a seperate post detailing the Ben Nevis hike another time, as it was quite a big deal for me i suppose, having two pretty whacked ankles from Haemophilia and all. I will be doing more hiking this winter, when the ground is a tad too frozen and slippery over them roots and chalk and stuff! To keep fit i shall just have to ride my bike around Richmond Park when it is really icy. I don't know what i would do without living so close to these places. I'm not a fitness freak or anything like it. But i do Love to keep fit and have fun at the same time. I remember the Gym i went to for every other day for 14 months was so very boring!
Tomorrow is going to be a nice, sunny, warm day. You know where i will be? You guessed it;)

P.s. My 29th Interferon jab went fine Thursday night. My right side this time (my Love handles). I alternate from left to right every week. Before i started treatment, i envisioned that i would have lots of marks where the needle go's in. I'm not sure why really, because of all the thousands of needles i have stuck into my arm veins, i don't get marks there.
My numb finger is no worse & my toothache ain't no worse. But my right elbow is a bit sore. Thats just because it is pretty wrecked, like my ankles (check the photo out and look at the difference between my left & right arms. An injection of the Factor VIII kind i think.

Jason

29th injection & My life in pictures

Jae & Dessert Storm

Hi everyone. Before i continue with my blog, i will just add first that as from now i am going to add a photo for every post i write. For each photograph i shall add a little information about it.

This first photograph i took of myself last night, on the very top of Leith Hill in Surrey. The tower is in the background. The moon was almost full and the sky looked absolutely amazing! I was all alone, apart from all the animals and insects i could hear. I Love being in places just like this.

Anyway, i shall continue.
Tonight is the night of my 29th Interferon injection. And just a few days ago, i completed my 1176th (7th bottle) Ribavirin tablet. I feel exactly the same as i did 1 week ago. The numbness in my little finger isn't any worse. I have been having tooth ache though in the past week. But i doubt that has anything to do with my treatment. More likely it has something to do with the fact that i never looked after my teeth as a child. I do now of course. It may even be a wisdom tooth coming up and saying 'Hello', i am here and i won't go away! It does come and go. The pain that is. I really don't want to tell the doctors yet, as i know they will suggest having them looked at. I hate going to the dentist, because every time i have been they have this very perfect knack of making my gums bleed! This bleeding, even with tonnes of Transamic Acid, lasts for well over a week and having a bloody mouth for that long is quite deppressing! I shall keep my eye on that too.

I have just finished dinner and am now watching a documentary about the terrible events on September 11th 2001. My problems seem so insignificant in comparison.

Jason

Numb finger & other side effects

Yes, i still have a numb finger. Well, when i say numb, i don't mean totally numb. I can still feel it if i stroke it or put it under the cold or hot tap, or pinch it. It is only the one finger at the moment and i expect it may go to the others in time.
My next hospital visit is on the 15th September. I will wait until then i think, unless it starts to hurt or go totally numb!
I don't think i have mentioned before that i also get mild side effects from my current HIV drugs. I have been on some sort of HIV medication since 1987 (yes, i wasn't even told for 3 years!). Firstly i was on the Concorde Trial for AZT and then another trial where the name of the drug has escaped me for now. But really, since i first started HIV treatment my side effects have been very mild, almost unnoticeable. That is to say until i started a drug called Indinavir!! It was a very potent drug for me for some reason or another. I can't remember how long i took it for but i think maybe for a year and a half. I remember going to Tunisia for a 'Star Wars' location finding holiday whislt on the drug and i still can't look at the photos of me! During my time on Indinavir (circa 2000) my face changed shape (lipodistrophy), the hair on my head went very thin and light. I lost all the hair on my arms and legs. I got kidney stones and dry, itchy skin all over my body which wasn't very nice. But the worse thing that the drug caused was i had these tiny red bubble type things growing out from the sides of my nails on both my big toes, They got bigger and bigger and very painful! The doctors hadn't seen them before and even sent me to the hospital photographer to have them documented. I had 4 of them, each the size of a large kidney bean. And red in colour. I had to wear sandles for several months so my toes could stick out and not be touched by anything. Just thinking about it now makes me cringe! I had to wash them and re-bandage them every day. They kept bleeding and discharging some kind of fluid too. In the end the RFH decided to cut them off. So i had them cut away and half my nail too. But after a month they had grown back and were worse than they had been originally. So, in for another op and cut away again, this time all the nail too and this did the trick. My goodness, those things were horrible!! It was called 'Chronic Paronychia'. Obviously, by this time i had been taken off Indinavir and put onto something else.
I used to say to myself at the start of my Hep C treatment that if i coped with all that, i can cope with this. I think it has helped me a lot thinking that way.
The only side effects i get at the moment from my HIV drugs are a really odd feeling of being out of my body so to speak. I feel that if i cut my self or punched a wall really hard, well, i feel as if i wouldn't feel it!. It only happens in the evening a couple of hours after my evening drug gulp, which is and always has been at 20:27pm every day since about 1987. Some evenings are worse than others. It really seems to depend on what i have eaten. And if i am out mountain biking at the time i take them i don't hardly feel it at all. Maybe because my heart rate is increased? I am fine in the morning because i have a slightly different concoction, & i am lucky enough to be able to go back to sleep after my morning drug gulp at 08:27am for about 2 hours as i don't work.
I was out on my bike this afternoon, cycling around Leith Hill & Holmbury Hill on the North Downs. It was very quiet and it sometimes get a little lonely all on your own. But i do come across other mountain bikers during the day. I even fixed a puncture for a fellow MTB'er whom was pushing his bike down a very steep track. My good deed for the day:) I needed the rest anyway. Oh, and at the top of Leith Hill, i had a slice of date & marmalade cake that my mum made me. Lovely!

Jason

28th jab & counting

A pinch & a punch, the 1st day of the month.

Anyway, last night i had my 28th Interferon injection. Do you know that i have been keeping all the used syringes. All except the very first one, where i did it at the RFH (Royal Free Hospital). Oh well, we can't have everything!
Just a few things first. You may be thinking about the title of my Blog. 'The Mighty 'C'. I named it that way because although my blog is about all of me and not just Hep C, it is the Hep C which kind of made me do it in the first place. And i have always thought since being told i had Hep C that that was the disease that would eventually kill me first! Not HIV, not bleeding to death, but Hepatitis 'C'. Hence The Mighty C.
There, now that's out of the way i will continue. I have been out for a bike ride tonight around Leith Hill again and on my way round i was thinking about how i felt and i came to the conclusion that Fridays are certainly the worst day of the week for me as it is the day after my jab. I just feel a bit more tired than normal and maybe a little cold in the head if you know what i mean. I was out for an hour and 20 mins cycling off road and although i could of done the same again, i just couldn't be bothered. I normally go with a friend on Friday evenings and an hour or so is plenty as he works all week and has a baby too. But come Sunday (the next time i usually go out) i am feeling great and stay out for 2-4 hours.
I was beginning to think that i don't notice much of anything on this treatment and i am wrong. Although the things that i do happen to notice are usually swept aside as just little things that come with the whole deal.
I don't think i have mentioned yet that on my 12th week i was told i had already cleared the virus. Obviously i was really hoping for that kind of result and only when i went up there for the result did begin to think what i would do if it was bad and had to stop treatment. I still don't know what i would do or how i would feel. I hope it never comes to that! But i would probably just carry on as normal and soon forget about it, because that is the kind of bloke i am.
That's about it for today, except that i have had a bit of a numb little finger on my left hand for about 5 days and am beginning to wonder what it is. It feels like when i drove to Fort William in one go in 7 and a half hours and where my hand was gripping the steering wheel my thumb went numb, but soon went back to normal the next day. It is obviously the treatment i am on and if it don't hurt me i can live with it.

Jason