liliana's world

My experience of HepC treatment

Name:
Location: Bolton, United Kingdom

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

Saturday, November 26, 2005

TENTH INJECTION

TENTH INJECTION

Admitting Defeat!
Last Monday was my tenth jab.  Been struggling for weeks, up and down like a yo-yo, determined, stubbornly, to ‘do it My Way’!!!

It is now Saturday, and this morning I had to face the fact that depression has set in.  I have been slowly changing, retreating into my shell, not visiting the forum, feeling I had nothing to contribute; all signs of depression, but I did not want to admit it.
When I started tx I was adamant I did not want antidepressants.  I had taken a long time to get where I was in my head, a nice gentle and balanced place and didn’t want to change that.  Well, I now have to face that slowly but surely, Interferon has depleted my brain of serotonin and running out fast.

Time to go to the docs for a script, I think; ‘I’ am not there anymore, I feel as if I’ve gone AWOL, going from total rage to sobbing desperation at the drop of a hat; but worst of all, starting to doubt the purpose of it all.

Time to go to the docs, I think, while my logical mind still tells me that ‘there is’ a purpose for this tx, and a life after tx.

This week I also have been terribly ill, breathless and with violent coughing fits at the smallest exertion, even lying in bed hurts so I have to get up as my body hurts so much. At first I saw the weight loss as a plus but now my arms look more like muscle wastage, and ache constantly.  I saw the antidepressants as failure to cope (me and my arrogant head!)  But now they seem the only answer to keeping me afloat.

I know I am depressed because at the moment I feel like a wounded tigress who is unable to protect her young, but my ‘young’ are grown up; they are capable to look after themselves; the best way to be there for them is to ‘look after myself’ and get better, no brownie points for heroism.  These illogical thoughts were not there before tx, and nothing has changed in my life, apart from good stuff, a new granddaughter and tomorrow the christening of my next two grandchildren, all happy stuff.

Sunday, November 20, 2005

NINTH INJECTION

NINTH INJECTION.

GOOD WEEK
Today is Sunday the 20th of November.  I have not written on my blog this week, mainly because it has been a good one and I have been ‘loosely speaking’ getting on with living.

Last Monday morning I had a phone call from my nurse.  I had rung her on Friday afternoon because at the time I felt I was ‘losing the plot’!
By the time we spoke, I had started to come round, first good day in seven, but feeling apprehensive as it was jab day.
My nurse explained that I was on very high doses for my weight but if I could cope with it she would prefer to keep me at the same dose as my ALTs were responding so well (now down to 43!).  We came to an agreement that if she did not mind me ‘bending her ear’ when I got scared, I would tell her straight away if I experienced any potentially dangerous mental symptoms.

The side effects have been different again this week.  The speediness has gone and with it the mental agitation.  My boggy men have gone back to sleep; I have been calmer and managed to get on with life (as I know it now, anyway).

Side effects this time have been physical: light sensitivity, flu symptoms, extreme breathlessness and the chest from hell.  On Friday evening GP told me that I have yet another chest infection and that my asthma is back.  Ahhh!  So I was not training to make obcene heavy breathing  phone calls after all……
However, I have decided that if ‘given the choice’ I rather have physical side effects rather than mental ones. ‘ill’ but happy I can handle, emotional turmoil I do not like at all.

As for my ‘distraction’ problem, I have now got a ‘timer’ and have not burnt anything this week.  It may sound silly but it works for me.

As I said at the beginning, this week I have been ‘living’ a little, but I also have been ‘learning’ a little.  I have been learning to ‘pace myself’.  I have caught myself at times all excited,  planning all sort of exiting things I felt up to doing, but took a step back and chose to take it slow and take time out.

One thing that I have pondered about is whether the birth of my youngest granddaughter had a positive effect on my serotonin levels.
Tomorrow is injection day.  Let’s see what it brings.

Friday, November 11, 2005

THE AFTERMATH

THE AFTERMATH…..

I am just beginning to come down.  
Turned my phones off, had a long bath with boleros (Latin-American 30s and 40s ‘love and death’ music, which I grew up with) blasting on the pc with my flat in darkness, ate a horrid meal ‘killing’ every mouthful till my mouth hurt. Even my poor cat got a tongue lashing.
But I stuck it out.
My thoughts have started to slow down but, Wow! I feel as if I have boxed in the ring, and lost badly!
My stomach is sore and I feel sick; there isn’t a muscle that don’t hurt; moving is hard and painful to do.  But I have come down, and I am so grateful of that.
I shall go to bed and maybe stay there for the weekend; well, at least that’s the way I feel now.

Like A Ticking bomb

Like A ‘Ticking’ bomb

Today has been the worst day by far since I started tx.  My head feels as if it is going to explode; I want to scream and shout; I am full of a torrent of tears that will not come.  Oh! The temptation of just not ‘being in my own head’!
I have tried to do as much right things as I can, but it just will not go away.

How I long for the contentment I had found after so many years in the darkness.

I went to Bolton town center today, first time in ages, and I got a parking ticket, though I had my disabled sticker on.  Outside the car park there were these two great red signs saying ‘disabled can park for free for three hours’.  It did not say anything about ‘in allocated places only’; that was found at the actual meter, as the smirking, ‘friendly and very gleeful’ warden that gave me the ticket offered to show me!
Going to write to them, and get in touch with my MP, because, as I told them on the phone, the red signs are misleading!  I guess I still will have to pay up.  But that was the final straw, I guess.

I ‘know’ I am distracted, but it is going to be the last time I go into Bolton for a while.

EIGHTH INJECTION

EIGHTH INJECTION

The Return to the Valley of Tears………..
Friday today, about 10am.  Last Monday I took my eighth jab and, once more experienced a very weird pattern of side effects.
At first I thought they were mildish, because I again sped my way through the first few days.  Till last night, when the crash came.  I have ‘misled’ ‘me’, and the feelings this new person has are sometimes scary.

My housekeeping skills have gone AWOL, the little energy I have seems to be misspent in daft adventures and not what’s important.  I only do what is absolutely essential, ironing keeps piling up, and cooking is a thing of the past, tired as I am of burning pans…..Who has ever burned pasta???

I have no idea what I do with money; it just slips out on daft unnecessary stuff.  I spend ages ‘budgeting’, writing down exactly what needs to be paid and bought, but it is only ‘in theory’, it just disappears!  I guess it’s not that bad yet because at least I pay all my bills.  
This is scary because I could be out, feeling quite normal and suddenly my brain seems to go AWOL!!  And I do not realize it till it’s too late.  This has led to me not going out unless I ‘have to’.

My concentration levels are zilch and when I am down, all the boggie men I left behind come back to tap me on the shoulder to say hello.

I have so much respect for the ones going through tx with young families!!!  I do not like to think how I would cope if I did not live on my own but, yet again, the loneliness drowns me at times.  And I am running out of my library of positive statements and ‘good thinking’; when I am down, they are just words.

Saw my nurse on Monday for monthly checkup.  Some positive news there, with my ALTs down to 56!, they never came down from 90 since diagnosis and the drop is in the last month.  It does make my prospects good and I keep hold of that.
On a negative note, my platelets are down from 150 to 90 in the last month.  I have been told that ‘normal’ is 150 to 400, so I started off low.  However, my nurse does not seem concerned at present, so we’ll have to see how it goes.
I should not feel lonely, I have very dear friends that have rallied round and I see more now than I ever did before, I need not have been worried about telling them when I was diagnosed;  so, I am lucky that way.

I also have three lovely grown up children who love and support me, and, mainly, don’t bat an eyelid when I come out with crazy talk.  But this week, I just cannot ‘feel’ any of that!

Saturday, November 05, 2005

Sides hit after 78 h

Side’s hit after 78 hrs

This week has been different once again.  After Monday’s jab I went on to feel quite ‘normal’, till Thursday night.  It was then that the anxiety and agitation came……  I was shaking and suddenly the world seemed a horrid place.  I realized that I had actually been ‘speeding’ my way through the previous days till I stopped.

I had spent a lovely afternoon with a friend and my daughter, nothing strenuous.  But it did make me think whether even ‘good’ stressors can be a trigger.
Sleepless nights have followed and I have a fever; I would like to know whether stress makes the side effects worse or if this week they took their time to make an appearance.  I seem to be better if I stay in, and alone, but if that’s the case, this is going to be a very long and lonely journey.

Thursday, November 03, 2005

Five weeks into tx, my clour is changing but still holding. Weight is begining to drop fast; so far, not a bad thing, but we'll see. Posted by Picasa

this is me before tx

http://photos1.blogger.com/blogger/2860/1606/640/IMG_2040.jpg    

Funny Old thing Tx

Funny Old thing, Tx

Thursday 3rd of November, 12.35 pm.  Getting ready for going out.

It certainly is a funny and interesting journey, this tx!!!  Three days after jab and, unlike last week, I feel really good today.  Have not done much, of course, so I have not been exposed to outside stressors, but last week I did not need them to break down ‘like a little girl’.

Different bits of my body are getting itchy but I have hydrocortisone at the ready, left eye still dry, drops near by.

Going for lunch with an old friend, last week I could not leave the flat.  I shall enjoy it while it lasts.

I think the unpredictability of side effects may prove to be the hardest to deal with, unless I get my head around it ‘now’ and accept whatever comes.

Someone advised the other day ‘keep it simple’.  Will try and make it my new mantra.

Wednesday, November 02, 2005

SEVENTH INJECTION

SEVENTH INJECTION

Today is Wednesday 2nd.  Had my 7th jab on Monday.  After last week’s fiasco, I had started to feel better by Sunday.

I was prepared for another onslaught, but it has not been too bad.  Maybe because the element of surprise was not there.  Still agitated and speedy, but I have taken it easy and not done much.  I keep on bumping into things and doors; I just can’t seem to know where things start or end; also burning everything I try and cook, lol.  I finally lost the plot, it seems.

This time what is new is the nighttime fever, freezing inside and burning up.  I have given up trying to straighten my hair as it curls back up with all the sweat.

Today I made an effort to go to the Buddhist Center, and I am glad because it really hit the spot; came back feeling chilled for the first time in ages.  However, I did wander on my way there whether I should be driving at all; I was shaking like a leaf.  However, if I did not have the car there is no way I would go out at all; too many peeps, too much information, on foot I just freak out.  I feel safe in the car and therefore in control………kind of……….

My hair has started to feel dry, losing its shine, and skin so dry it hurts despite all the cream; small rashes starting to appear.