Therapy side effects

The first day of my treatment, I was delighted : no rash, no depression, almost no effect. 

Heighteen weeks later I explored sucessively  fever, tiredness, nausea, pain in joints, sadness, nervousness, even panics in certain situations (street, cinema). The 'psycho' effects are  particularly present the days after the Interferon injection.

Rest of the week, I am mainly under fatigue, nausesa and uncomfortable itching sensations: on my legs, my arms, my back and belly. I cream and re-cream my body, everywhere. 

In heighteen weeks I lost 10 kilos, I am breathless and with no force. 

This just reminds me a stupid and forgotten french song by Ouvrard "Je n'suis pas bien portant"

If you catch french and if you need a kind of fun after my moanings, you can open the link below and listen to the song. (Toute une époque :)






http://www.youtube.com/watch?v=4wsdksMsbUI

Hepatite C...Quoi ?

Dragon Arcimboldo

Les porteurs du VHC n’intéressent personne. « To liver and let die », dit Berne le Suédois avec un humour un peu réfrigérant.

Même le mot « hépatite » donne un peu mal au cœur. Dès qu’on en parle on a déjà les dents du fond qui baignent.

Et puis les hépatites, tout le monde s’en fout. Ce sont les pauvres ou les gens malades qui attrapent des hépatites, les gens normaux, eux, ne risquent rien. Avec une hépatite, tout ce qui vous pend au foie, c’est une cirrhose, la maladie des pochtrons.

D'après Fabrice Olivet 2009


Bref, en ville comme au cimetière, pour éviter les questions embarrassantes et rester fréquentable, mieux vaut faire allusion à des maladies plus correctes et moins stigmatisantes.
Au delà de ces aspects discriminants et des difficultés de communication qu'ils génèrent, l'hépatite C est une maladie méconnue et qui ne suscite que peu d’intérêt car elle tue lentement. De fait le porteur d'hépatite n'est pas vraiment pris au sérieux. Quelques réflexions entendues ici et là pour illustrer ce point :


" c'est une maladie qui se guérit bien. J'ai des patients que je traite depuis des dizaines d'années".
"c'est juste quelques cellules de ton foie qui sont abîmées"
"prend bien ton traitement et ensuite tu n'y penseras plus"
"de toute façon, si on lit les notices des médicaments les effets secondaires sont toujours effrayants"
" 'on voit que ça va mieux que l'autre fois' ! - Oui merci, j'ai juste perdu 15k et ma chevelure, ça doit être ça qui me rajeunit- "


Santé à vous,                                                                Ozias

HCV illness thoughts

My Illness is personal but makes me think wider around. In same time, Illness makes me more selfish than ever but forces me to changes perspectives. I discover a new part of what I am made with: probably proud and a bit asocial. I never liked team sports, clubs and group hunting. Today I can hardly stand in a group and asking for help for my body hurts my pride.

I realize also better what’s life about for me: short so no time to spare without reason. No place for fear, complacency, diversion. I understand now that going far in short time needed to accept what I am and realize the good part of what it carries. The mark of it is that it provides self-esteem in return.

Being ill, I feel like a rotten apple in a fruit basket. My low energy and depression contaminates my close relatives and surrounding. I also avoid proximity to people who are or have been sick. I don’t want to know about their problems. I prefer not to know about other health problems I can have or avoid. I don’t want to concur or discuss about which disease is the most severe, the most painful. I do not stand discussion with ill persons.

 Illness is a lot of manipulations. I am manipulated by my virus other patients can be manipulated by their tumor or whatever else. In return ill people I can see, and even myself, manipulate their surrounding with changes and induced pains. Another consequence of illness is weakness, and so patients get manipulated by his doctors, friends and relatives. This is why I try to follow Boris Vian words:

 “J’ai mal à mon bédane, mais je le dirai pas” …

In the same time,  people must  know that I am changed by the illness. I can of course mimic health during short time buts it is as hypocrite, as it is tiring.  To some extents, illness shows me that everyone is alone. As tell photos of Dijskstra, “not in the sense of loneliness, but rather in the sense that no one can completely understand someone else”.

katarina torsen

If you speak french, please visit the excellent post from Jerry Rubin. It is all about what disease can change in our lives, inside ourselves.

http://hepatite-c.over-blog.com/article-medecine-et-emotions-59845819.html

How are you today ? (2)

Mauvais sang. 

Plus de globules.

Je fuis le soleil, je ne dors plus la nuit et me sens aussi mort que vivant.

Mon corps desséché et osseux aspire à la  jeunesse comme un vampire.

Musique pour ce jour : Fratres Arvo Pärt

How are you today ?

Job on His Dunghill by Albrecht Dürer

Job on his dunghill; Signed J Macau.

Dear John Letter. To my virus.

Dear John,

Even if we have probably been travelling and living together for more than 30 years I was only introduced to you lastly. To some extend I should apologize about my lack of attention and start with kind of ‘pleased to meet you’, but situation is not that simple.

I must admit that you kept discrete, silent and even secret all this time and I recognize here some high standard of education and personality. You are a Number1, silent and with strong mindset.

I utterly appreciated your reserve and modesty that enabled to keep the secret in me without invading anybody in family and relatives. You are so discreet that when you choose me, even the sharpest scientist could not see, neither detect your daily work with my liver.

You let me have a wonderful life where we could experiment sports, world’s finest cooking and fine wines together and without special limitation. Never sick, never down, everyday filled with energy and full of curiosity. Really, not the slimmest thought to you in thirty years.

Always quiet and invisible, your track was detected during a routine check-up. I am almost disappointed to see that a game as subtle as you got trapped by a ‘week-end’s hunter’. I imagined some more heroic hunting story.

Today we are not anymore strangers to each other. I know who you are, what you did, what you can do. Besides perverting the best part of my liver, your apparition messed-up my professional and social life. No place for projects and ambitions now, just hiding and taking care of you and me. ‘Taking care of us’ is so ambiguous: to some extents your presence ruins my life, I want to kill you! On the other hand your discovery brings me back to myself as never before, but is this is a good or a bad thing?

 You are now my master, standing in the driver’s seat. You take me to show another side of life: Hospital where you can meet anything and anyone, the pure dumbness or grace of life, and pain with death. Everywhere you showed me the presence of broken hearts; broken bodies floating all around us. I have not been far on this road yet; I just adapted my agenda and opened my eyes. During all previous travels I forgot visiting these countries and now I wonder if there is some place for me to settle here.  I respect you because you let me live and now you teach me ways to die. Sometime these days it is quite difficult to choose my way between following you and keep going with the usual train of my life. I make the wish that you will keep discreet and ‘easy-going’ during this second part of our road movie.

 I make the wish to drive you out as soon as possible. Bye NOW John,

Ozias

Dragon fighting

Pablo Neruda : Ode to the Liver

Feature: Ode to the Liver

by Pablo Neruda

Modest, organized friend, underground worker, let me give you the wing of my song, the thrust of the air, the soaring of my ode: it is born of your invisible machinery, it flies from your tireless confined mill, delicate powerful entrail, ever alive and dark.
While the heart resounds and attracts the music of the mandolin, there, inside, you filter and apportion, you separate and divide, you multiply and lubricate, you raise and gather the threads and the grams of life, the final distillate, the intimate essences.

Submerged viscus, measurer of the blood, you live full of hands and full of eyes, measuring and transferring in your hidden alchemical chamber.
Yellow is the matrix of your red hydraulic flow, diver of the most perilous depths of man, there forever hidden, everlasting in the factory, noiseless.

And every feeling or impulse grew in your machinery, received some drop of your tireless elaboration, to love you added fire or melancholy, let one tiny cell be in error or one fiber be worn in your labor and the pilot flies into the wrong sky, the tenor collapses in a wheeze, the astronomer loses a planet.
Up above, how the bewitching eyes of the rose and the lips of the matinal carnation sparkle! How the maiden in the river laughs!

And down below, the filter and the balance, the delicate chemistry of the liver, the storehouse of the subtle changes: no one sees or celebrates it, but, when it ages or its mortar wastes away, the eyes of the rose are gone, the teeth of the carnation wilted and the maiden silent in the river.
Austere portion or the whole of myself, grandfather of the heart, generator of energy: I sing to you and I fear you as though you were judge meter, implacable indicator, and if I can not surrender myself in shackles to austerity, if the surfeit of delicacies, or the hereditary wine of my country dared to disturb my health or the equilibrium of my poetry, from you, dark monarch, giver of syrups and of poisons, regulator of salts, from you I hope for justice: I love life: Do not betray me! Work on!

Do not arrest my song.

Pablo Neruda
Translation by Oriana Josseau Kalant, 1975

Copyright 2008 NALTSW

There is also a french translation of the ode to the liver  available with music.
For french listeners it's worth a visit !

Ode au Foie par l'or et la patate

Beside it,  link to a poem by Michele Leavitt, a poet who has hepatitis C. The poem is titled, Viral Sestina. A sestina is a 39-line poem consisting of six stanzas of six lines each. The words that end each line of the first stanza are used as line endings in each of the following stanzas.

Viral Sestina by Michele Leavitt published in Mezzo Cammin, Volume 6, Issue 2. One short example : 

The Chorus Confesses Its Mistakes

Mistakes? We simply don't make any.
That's the beauty of a collective vision.
It has been ever so: we strengthen
by insisting on homogeny.


And we protect our own.
No one is harmed but the white goat
we tied to a tree beyond the moat,
the one we all get to stone.