"Even Dog Shit Smells Wonderful.........Today!"

Pitch Hill, Peaslake, Surrey.


I was in such a foul mood last night and this morning! Pissed off with this waiting lark for my PCR test result. Pissed off with my ankle hurting me so much. Pissed off with my right elbow hurting me so much. I even wrote a post this morning which I will have to scrap and re-do in this new one considering that I now have my result!.....bear with me folks. That's right, I almost rang them at about 12pm today to find out if my result was ready yet. I was so pissed off that instead of phoning, I went up there in person unannounced with five months of FactorVIII tx sheets that they wanted and to get that LFT blood sample taken again. As it turned out they didn't need the LFT sample to be taken again and then said that they had my PCR result ready for me. I couldn't believe it! I wasn't even expecting them to have it. I was just hoping that by going up there they would just check to see where it had got to & maybe (a small maybe) it would be ready. But after about ten minutes talking to the receptionist Zita (I don't even remember what we were talking about, all I could think about was what I would find out in the next few minutes) and then my HCV consultant came out and sat down next to me with some printouts with my 'Lost' LFT figures on one sheet and my PCR result on the other! As she handed them across to me she said... 'These are for you.' I looked at the LFT levels as she told me that they had been taken on the 22nd Jan afterall and that they didn't need another sample. I didn't care where they had got to and looked at the next printout, eager to see what the score was! I slid the LFT printout away from the one underneath it and looked carefully at the text printed there. I was anticipating the worst and then read the text...

...It read........."CLINICAL COMMENT"; No evidence of HCV viraema.

I said to my Doc, 'Is this good?.......It didn't even register, obviously. She said that it was very good. Then I read the text underneath where it said; HCV PCR TEST RESULT......HCV not detected.
I went a little quiet and began to smile a little too. Inside though I was very happy indeed & could have kissed everyone in there right on the lips, cold or no cold!
So that was that. I wasn't expecting to get the result in this way. They didn't even know that I was coming up today. They didn't even know just how pissed off I was with the whole waiting thing. Not their fault I know, but I hate waiting for anything! Even the train ride up there I couldn't breathe! All the windows were closed, everyone was sniffing, everyone was coughing & everyone looked so god damn fucking miserable to boot! It is the same everytime on that stinking train ride. I opened a window and waited for someone to come along and close it as they always invariably do......They didn't this time.

So there I was as I walked out of the hospital back to the station as I held my little A4 printouts with my PCR results on, feeling so much better. being careful not to fold or crease the paper! The sky seemed much brighter (it wasn't), the birds seemed like they were singing so much louder (they weren't), it seemed that the temperature wasn't as freezing cold anymore (it was), and even the half smeared pile of fresh dogshit I walked by had a wonderful smell to it (it didn't). The wait at the station was alright too, even when a forty container long train thundered by transporting a thousand tonnes of household refuse.....It smelled great! I watched it disappear into the tunnel that cuts it's way under Hampstead and thought a little about all of our very own long, dark tunnels. Like the train I watched dragging so much rubbish into it, there will be other tunnels after that one.......It never ends. In or out of our tunnels......we can only do our best and we will always be pulling vast quantities of rubbish around with us too!
I stood up by the train doors all the way home just so I could breathe. As usual all the windows were closed and there was the familiar sound of snot being sucked in through many slimey nostrils! Not so discreet coughs filling the carriage with minute particles of god knows what! I left the windows as they were and just stared out of the glass in the door at the beautiful London skyline whilst holding my breath until the next stop. I was happy and I didn't want it ruined by someone closing a window that I had just opened.

So that's it! The Mighty C is still undetectable.........But I am not going to be celebrating just yet. The way I see it is that I am only just two thirds of the way through this journey of mine. I still have to wait six months for the SVR (The big one) test sometime in July. It could still make an undramatic comeback in the next six months. I am not being a pessimist.......just a realist if I am totally honest. Obviously I am over the moon with the result, as this is the best possible outcome at this stage in the game. So I will just forget about it all now and do exactly the same as I was doing before & during tx.........It has worked for me up to this point, I would be a twat to change things now eh;)


A very happy Mighty C:)

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If you're interested, below is the original post that I nearly posted this morning (before I new my result). But instead I thought I would go to the RFH to see where my PCR results were. I will add that absolutely nothing in my original post has changed.........except one thing. The "Wether or not to get myself a new mountain bike" has turned into "I will definitely get myself a new mountain bike".

"Thinking Time..."

I have been thinking. In this period between giving the hospital my blood sample and the result....which I still haven't been given, I have resigned myself to not even worrying about the results. I have done my bit......I can't do any more. I wasn't worried about the result too much anyway, I just did not like the waiting part. And that whole confusion thing with the blood sample that needed doing again and not knowing which one it was that they wanted. It wasn't the PCR sample afterall. I reckon sometime this week for the result, but I'm not holding my breath.
So what have I been thinking about then? Is shall tell you. Apart from what to name the post that I let you know in wether the result is positive (as in bad) or negative (as in good) and which photo to put with it & My Mums knee operation in March & wether to get a new mountain bike or not & this mountain bike race I have entered into in June, I have been thinking about what I am going to do for the next few years.
Before the tx I wasn't thinking about much of anything. I was just taking my HIV tablets, dealing with my Haemophilia, dealing with a 'little' pain, going to the gym and cycling and sleeping and eating.....That's it. And what do I find myself doing? Exactly the same. But in addition to all those things I really feel like I want to do something else. Something other than staying alive for the f*cking sake of it!
I used to go on these "Adventure Holiday's" specifically for young Haemophiliacs when I was a young boy. They were in North Wales and we stayed in this beautiful mansion called Cornellyn Manor on the Island of Anglesey. This was our base and from here we would go by mini-bus all over the north of Wales. We did hiking & orienteering, abseiling, archery, mountain climbing and kayaking. These holidays were the best holidays that I have ever been on. I even cried once when I had to say goodbye to the other Haemophiliac boys. Although I don't even have one single photo of any of the holidays (couldn't afford an camera), I wiill never forget them. Nor will I forget the time that some other boys from another group (non-Haemophiliac) spat down from the top of the main staircase onto the head of a girl who had VWD. All she was doing was reading a book! I went and told them off and the girl (Rosalyn or Rosamund? from Stockport) & I became sort of friends for the rest of the holiday. Not to mention the identical twins Matt & ?) who showed me their willies;) Oh for that pissing time machine again!
They still organize trips like that today and more than once in the past I have thought how much I would Love to attend one as a helper/volunteer type thing. I could even show the boys mountain biking.
I doubt they would let me though because of my health credentials;) But you never know. I would Love to find out how all the kids are and what they are up to these days. Probably dead now.

Back to reality then. Real life!

I was out for a bike ride yesterday afternoon. You guessed it. Up in the Surrey Hills. I got dogshit on my front tyre! Spoke to a few fellow mountain bikers, smacked my shin on my pedal and said hello to two lady horse riders. The weather was great and dry as you can see from the photo. The sun is very low at this time of the year and shines through the woods. It looks great and I feel wonderful to be able to go out in it. Yeah my right elbow was killing me (still is) and my ankle has been in agony over the last week but who gives a f*ck eh. I went to see "Babel" on Saturday with Jac (very good film) and when we came out I could hardly walk! I didn't even think I could make it back to the car which was just around the corner. I was lucky this time as it seemed to snap out of it and although I got back to the car and back home, it was still very painful. I wish I was allowed to take my bike into places like movie theatres and super markets etc;) Walking these days is such a bastard!! You probably noticed my last post "The Sandman's Suicide" was about the frequent anount of times that my ankles wake me up in the middle of the night. I have had enough of all this pain! I am only just 36 and I am basically a cripple. My bike is my wheelchair. Could be worse though! I can feel myself becoming angry.........I had better go.


Jason





(C) JPT 2007