liliana's world

My experience of HepC treatment

Location: Bolton, United Kingdom

argentinian born, into shamanic practice and self development. I am a teacher and craft person, but not working at present

Thursday, July 12, 2007

I first must thank everyone who gave me such wonderful responses to my previous post.
This time I'd like to add to it in the cathartic, weirdly positive effect of my attempted suicide.
Granted, the following weeks saw inmersed in a fragile and vulnerable world, but it also made face up to the reality that there were issues I had to see to and resolve if the pattern was not to be repeated.
I learned that I was loved, and needed, but also that I had to take responsibility for my own happiness and well being.
I suddenly started to see the world around me with clarity. Saw the 'crumbs' that I accepted in relationships because I did not see my worth, what I truly deserve. To those responsible for this crumbs I accepted (you know who you are),I will only thank. I needed the lesson before moving on. I allowed my light and energy to be sapped, so its okay. They can now move on to the next fool with their 'fairground boys charm' to find comfort for themselves without committing themselves. Each one of us, is responsible for our actions, and untruths are always found out in the end.
Since seeing that I had always accepted less than I deserved, and dismissing the negative, I won freedom. And the chance to join life once more despite my illness.
On the medical side, my care and treatment has been balanced and both my GP, specialist, psychiatrist and counsellors are working together. I have even now been given the chance of another tx when the new medicines are available. My old demons have gone, since my overdose left me with nowhere to hide. That gave me freedom. And without realising it, I started to move on.
On a personal level, I feel better than I had in a long time. My hepC is now a condition that I have, but just that. As JB so aptly said in his rap: 'I AM NOT MY DISEASE'.
I have just returned from two glorious weeks in Turkey with someone I had been dismissing for a long time, but now in my life. While on holiday, I completely forgot that I had hepC, I ran, and walked, and swimmed, and danced just like a woman, not an ill person. It was only on the 2nd week, on a visit to Ephesus (a dry very hot day) that I found myself searching for the shade even in broken down corinthian columns, boiling from within. I remembered then that one of my symptoms is that I do not sweat as my liver does not regulate temperature well. Oops! I forgot that bit, I thought. I survided it anyway, and the awe of visiting such a place carried me through. ( a dream of mine since university days to visit the crib of civilisation, and feel what the philosophers saw).
For all out there inmersed in the darkness of deppresion, I want them to know that, in my experience, EVERYTHING HAPPENS FOR A REASON, and even the darkest of darkness has an end and a purpose. FAITH is the antidote to FEAR, and COURAGE is the key to open that door. The good people who answered my previous post spoke of MY COURAGE, and I was gobsmacked, me? no no, you are wrong, I am a coward I thought.
Now I know different. To feel pain, and dispair, you have to 'feel' yor feelings. To fully 'feel' takes courage, and a longing for love and life. To hide from your feelings takes a lot of energy, but not courage.
To all out there who can identify with my experience, 'hang on in there', life is beautiful, love is alive and out there waiting for us. And the world is still a beautiful place.............because WE are in it..............

Sunday, May 27, 2007


Tis a long long time since I last updated this blog, and a lot has gone on. The first 6 months were actually taken by fighting to get over some unpleasant sides from the tx.
I had EEGs, brain scans, scans of all sorts, you name it. I just dozed and hobbled my way through this time, getting lower and lower.
As far as I could see, not only the tx had not worked but it had left me worse than I had been before, a brainless fattie who ate and slept the way through my days, losing at times my contact with reality.
And eat I did, not only did I gain the weight lost through tx but an extra 10 kgs (twenty pounds OUCH).

To the outside world, I pretended to be doing well. It is surprising how people think you must be well because you are fatter! I learned that it was very easy to con people, just let them think what they like. It is safer to see health and happines in a growing body than look into the eyes.
What happened then was that, slowly but surely, my dispair got deeper, and somehow someone started 'ticking' the boxes in the pain overload card inside my head...............

Without previous active thought, but following one more visit to yet another neurologist, I took an overdose that should have killed a horse. Coming back to deal with the mop up operation was certainly not an option. I had finally had enough and was 'checking out' early.
Fifty five years of trying to make sense of dispair, giving love, allways sure that the good would win, so many years of forgiving, all of a sudden were too long........and empty............
Forgiving and moving on was not an option, too much damage done........too many pathways of accepting less than I deserved had tainted my perception.

It took me many weeks to get over the resentment against the poor A&E doctor who 'brought me back. It took 5 days and a lot of work on their part to undo the damage and stop organ failure. Was someone up there looking after me? Well, if they are they have a dark sense of humour. Not only did I have to still with the depression that drove me to it, but I had to face the aftermath of mopping up the damage I inflicted on the ones who love me most.
But I am here, vulnerable, afraid of people, pushing myself to do stuff, but I am here. And I intend to stay. I has not been fabulous, but day by day it has got better, and I am prepared to face the issues that I have to work on if I dont want this to become a pattern.

I was not sure whether it would be wise to share this in my blog, so I posted even less. ISOLATION is the most dangerous thing, but also the easiest.

So I decided to share it, because if there is anything I would have done different, it is to cry and shout, even sometimes, long enough for someone to see past the mask and the 'okays' I muttered.
And also maybe I, myself, in future I will not assume someone is well because of how they look on the outside, and listen, and look into their eyes.

Life is a beautiful gift, and its not ours to 'give away'. Experience keeps on showing me that I SHALL GO WHEN IT IS MY TIME, AND NOT BEFORE.
The people who love me unconditionally are back in my life and slowly getting used to the idea that its ok lo love me without fearing the pain of losing me. But I was lucky, they were hurt enough to have walked away to protect themselves and their little children.
The people who were bad for me I have sent away, they can throw their 'crumbs' at someone else.
And I am stronger than I was, and according to the latest Liver function bloods and scan, my liver is actually working quite fine and holding its own. So now I am deeply grateful to that young doctor and the 4 bags of 'mopping up' serum they pushed into me.

Thursday, October 12, 2006

liliana's world


Nearly a month ago found out that tx had not worked ,THO UNDETECTABLE AT 24 WEEKS) and that, in just 4 weeks the VIRUS IS BACK, AND MULTIPLYING NICELY, THANK YOU. NO FURTHER TX AVAILABLE.

YES, I still have a chirrotic liver which the virus will continue to attack. My absurd dream of longevity shattered with only acceptance round the corner? NOT YET!!!

I have GONE through stages round and round, shock, sorry for self, wanna hide stage, anger stage. With the stage my liver is in, looking forward to the future seems a hard thing to do and at times I DO question of it all. Seeing my beautiful babies in the nice adults they have become; and seeing part of them in their own babies, doing the things we used to do when they were little; what should be joy is at present covered in a blanket of intangible sadness.
Going to the hospital monday for results of another scan and another battery blood tests. sometimes i live for 'just the hour', all i can manage.

Sunday, August 13, 2006

liliana's world LAST INJECTION DONE

Eight weeks since i last blogged, but this has been due to my pc been off.
It seems a lifetime since injection 40. I think the nearness of the end of tx had a major effect on my mood, as i started to think of 'real life' and going further away than the bathroom or the couch lol.
The tx dose reduction slowly made a difference, and maybe it was helped by the reductions i made of codeine and Citalopram. I am now on 20 mg and planning to reduce it to 10 starting tomorrow. My head feels as it did prior to tx and i feel the antid's have done their work but may not be needed anymore.

As for what I thought of tx? time just flew (whether it felt like that at the time or not). At the begining I was full of dread of when or whether the 'side effects' were going to come. And, I guess that was it, once they came time was taken up with dealing with whatever was going on at the time.
I found they changed from week to week, guess they were like the beer that reaches parts others cant, eh. After a few months I 'got used' to the regular side effects, the problems came when another part of my body was getting depleted.
Apart from all the physical stuff, 48 weeks has been virtually a year of my life and, while on one hand tx suspended normal expected activity, on the other hand I now see it as a welcome 'time out', a time to reflect. This was certainly not a side effect I expected, but I have changed during this time; maybe due to the sheer fear during tx my priorities and perception have changed.
Ah, last episode was last week, when I ended up in hospital with a kidney infection and hooked up to all sorts. hehe, and so it goes........... I do not expect my recovery to be sudden, it took 48 weeks for my body to reach this imbalance level so lets time do its work. What I do expect is a small improvement from not bombarding my system with weekly doses of Interferon and Rebetol.

I shall be having my 48wk PCR and take it from there. I ewas undetectable at 24wks so keep my fingers crossed. Although tx was at times challenging, my biggest fear was oddly to be taken off it lol. ODD thinking!!!

Monday, June 26, 2006




I went to the hospital last week and it appears I am borderline risk, as my symptoms have got worse.  I have intermittent loss of feeling on both my hands and feet and at times my hands lock so I have to snap them open. I have lost another 8 pounds in three weeks though I push myself to eat. I have also become quite mad, as if that was possible LOL and my energy span before burn out is of about half hour.  I could also now be an understudy for Coronation Street’s Blanche, have opted for carrying a roll of masking tape instead.

The drop in dose has not made any difference as yet and, by last Thursday, the side effects were pretty scary.  I was hot to the touch, yet cold, and my heart was beating ten to the dozen.  Specialist and nurse agree all my symptoms are caused by tx, but it feels as if my body is perishing alongside the virus.  Thought I got lucky last week; went on an adventure to the paper shop, where the shopkeeper offered to walk me home; reality check suggests pity rather than me looking irresistible.
Joking apart, I found that the only way to keep the side effects down is to spend the majority of the time in bed; this may also be safer for others and save my relationships.  My dream life has become bizarre even for me, sometimes scary, others hilarious, so at least there is balance.  I have cut down on codeine based pain killers and halved the citalopram (thought these may be causing the racing mind) but I have had to accept that ‘riba madness’ is alive and well in Bolton.

Took injection 41 a couple of hours ago and ready to retreat to bed before the banshee comes out to play.

But what really cheeses me off is that I will be left with unsightly (and painful) varicose veins from my calf to the top of my right leg.  No more flashing tanned legs in the summer for me………  Ah………. Vanity…….

Wednesday, June 14, 2006

INJECTIONS 363738 39

INJECTIONS 36/37/38& 39

It is all getting a little fuzzy right now, and time does not seem to exist anymore. I am having on good weeks one and a half days where I can function and others, like last week I was passed out in bed being sick and unable to eat since Saturday morning OUCH and when Monday came (injection day) didn’t I know it. Eventually yesterday the doc gave me ant sickness tablets and guess what they said on the box? YES! Not to be taken with an impaired live.  So, I reckoned that since my little brown kidney shape bit of flesh has gone past the ‘impaired’ stage and onto the ‘I do not give a ****’ stage, I took them anyway.  And the s9ickness stopped Ahhhh. Today I managed to keep down two soft boiled eggs and drinking again.

The previous weeks haven’t been so physically violent, I spent about three days passed out, and walking like an old lady…..but watch out, this old lady could turn into a murdering banshee at the drop of a hat.  And WOW, I didn’t know how many evil expressions were in my head.  Damage was my only pleasure lol.

Well, I spoke to Jane, my nurse today and since I have only nine injections it would be a shame.  And I allow myself to be talked into it again; but considering the amount of weeks that have gone past since I last posted…. Gone past? No, change that to ‘bobbed along in a stupor’, there should be some of me left to cross the finish line.  I have no hopes about my gray matter that went out long ago.

Saturday, May 20, 2006


INJECTIONS 33, 34 & 35

I have not posted lately due to Internet problems.  Back on at last.  No major changes in the last few weeks tho the journey is starting to feel tiresome at times; not a plodder, I just plod on.

My platelets are down again and at my last hospital appt they still did not have the results of my CT scan, so what’s new?
My chest has got worse and the smallest of exertions leave me breathless and dizzy. Going to the docs this week to be referred to asthma clinic.
My mood has been somber so I have cut down on the codeine, which has put some balance in my troubled mind but at the cost of having the intense pain back.
I seem to have got used to the dry and sore mouth because I am eating better, getting quite fond of different flavored nails lol. At least my weight has stabilized.

Not too long to go now and I am more than glad to have stuck it through. Definitely worth killing this virus.