liliana's world

2007-07-12T18:03:00.000Z

AND LIKE PHEONIX FROM THE ASHES..........

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..............

2007-05-27T16:23:00.000Z

NINE MONTHS ON

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.

2006-10-12T19:41:00.000Z

liliana's world
TREATMENT FAILURE

NOT MUCH TO SAY...

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.

2006-08-13T16:54:00.000Z

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!!!

INJECTION 40

2006-06-26T19:47:00.000Z

INJECTION 40

DOSE REDUCED AT 39 WEEKS

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…….

INJECTIONS 363738 39

2006-06-14T12:02:00.000Z

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.

INJECTIONS 33 34 35

2006-05-20T18:42:00.000Z

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.

INJECTION 32

2006-05-01T12:22:00.000Z

INJECTION 32

Another week has gone by and there hasn’t really been any major change.  The same old friends of tiredness, low mood, and the constant pondering of the priorities of life.  It seems to me that my life long constructs, understanding and emotions have been thrown into a large cauldron which I watch go round and change.  It helps to just watch it go round and accept what the stew turns out at the end.  I have changed, there is no doubt of that, but maybe it will be a more complete me that comes out the other side.
My chest is my major concern at present, breathlessness and constant pain on my left side, and I cant talk and walk at the same time; some tell me to ‘keep walking’ hehehe.

On the positive side, my appetite seems better and I am eating more regular meals.  I have called a halt on the chocolate and cakes as they didn’t seem to have a positive effect on my mood; fruit and veggies are back on the menu.

Number 33 due later.  The kids are coming later so I am looking forward to that.  At this point it is only too easy to isolate myself.

INJECTION 31

2006-04-21T21:44:00.000Z

INJECTION 31

I wrote my last blog a couple of hours before taking my 31st. A few hours later the ‘speedy buzz’ turned to a very unpleasant despairing experience.  I was actually afraid of my feelings, but the funny thing is that I actually ‘believed’ what I was feeling was real and life was quite horrid.
Next day I discussed this with my nurse and saw the pattern of the last three weeks. When the sides used to hit me three days after injection, lately there has been quite a severe response after three or four hours. My mood remained low for a couple of days but mainly because the experience was weird and unpleasant.

Plenty of TLC brought me round this week, thanks to my long suffering daughter and her babies. Ha!  Role reversion, I get to throw the tantrums and I don’t get shouted at.  Only joking; my friends and family are probably quite used to me being a little mad anyway.

Thursday I had a CT scan and that was also an odd experience since I had never had one before and the nurse informed me ( as she hooked me up to a kind of drip) that I was going to have a hot flush and feel as if I was wetting myself but was not going to do.  Nothing unpleasant happened; now just have to wait for the results.

Today my mood has leveled again and I have been actually enjoying my food the last couple of days, in fact have been unusually hungry so that’s been nice.  Comfort food……. Lovely!

Each week I get round another turn of the rollercoster of Tx, and maybe it is making me a bit giddy at times but while viruses are dieing its worth it.  One day life will be sweet again and I SHALL be able to dance a full song without panting.

INJECTION 30

2006-04-17T16:20:00.000Z

INJECTION 30

This week did not go too bad, side effects hit rather hard a couple of hrs after injection and it went mainly for my chest; my peak flow is very low; hope I don’t have to run for my life haha!

One thing I am beginning to notice and rather cheeses me off is the extremity of my moods; I am high as a kite one minute and low as can be the next.

I just keep on reminding myself that I have survived so far and am doing quite well, One of these days I’ll get to believe it. Sorry, not one of my better days.

On a better note, just worked out that I have FOUR calendar months to injection 48. do not know where the time has gone.

28th AND 29th INJECT

2006-04-08T12:23:00.000Z

28th AND 29th INJECTIONS

On the first week I recovered slowly but still felt very down and tired, with pain and cramps on my legs. I went away with friends at the weekend and although I took it easy, I was unable to enjoy any dancing.  It may sound silly, but dancing for me is one of my escape routes and however I’m feeling my body takes over (not necessarily jumping up and down).  For the very first time ever, half a song and had to sit down so out of breath.  Oh well, it should come back after tx.
Think the higher dose of antiDs is starting to work.

On the Monday (inj 29 due) I set off to the hospital. Big day for me, 24wk PCR results due and an ultrasound as well.
The virus RNA is undetectable by PCR; HCV viral load >15 iu/ml; log value >1.18.
This fantastic result was somewhat overshadowed by the ultrasound which showed obvious signs of cirrhosis, a 1cm eclogenic lesion, a benign haemargioma, and other regenerative nodules.  Great, I said, my liver is regenerating, but no, it tried to but couldn’t stick the new cells onto the bumpy surface and these nodules are funny shaped cell groups, good to nobody.
Therefore I have to have a CT scan to have a better look. But this should be okay as the ultrasound also showed that the portal vein flow is normal, and the kidney, gallbladder, pancreas, spleen and kidney are all normal; and no scites.
Injection 29 went okay, no obvious sides, in fact I went out on Tuesday and had a good day.  Was also out on Wednesday and had another good day.  My mood is up, and I guess it’s the extra Citalopram as I have been buzzing a bit last two days (long forgotten cupboards tidied! And several hrs of music downloads lol).
My skin is still stuck to me, looks like the desert floor but no rashes or sore; my normally thick and kinky hair is falling out heavily but evenly and is easier to keep smooth I have decided not to cut it.  I may as well hang on to what I have got. Lol

Anyway, today is Saturday and had to look up in the diary to see how many inj I’d had?  After Monday I have EIGHTEEN to go!!!  Cannot believe I have come this far, AND that I still have friends and a family, they are so so good at keeping their faces expressionless when I come out with my rantings.  If I ever ever go again on one of my ‘nobody loves me’ trips, I shall give myself a good kick up the bum!
Oops, it’s becoming clear that I am on a speedy high, so better close.

INJ 27TH UPDATE

2006-03-24T12:32:00.000Z

INJ 27TH UPDATE

First of all I am writing this at 12.20 pm and Oh dear my head is still in the bin. The first sentence of my previous entry should read NOT MY BEST WEEK YET.

INJECTION 27TH

2006-03-24T12:26:00.000Z

INJECTION 27TH

This has been my best week yet.  My own fault really, having spent the last month spreading myself around like the last bit of butter the day before payday.  That’s what I blame anyway, now I am coming round.
Having spent Monday and Tuesday am with clenched teeth twenty four hrs after injection I just literally ‘lost my head’, feeling like death and unable to keep anything down or leave my bed.
One thing I have learned to my cost is how unpredictable this tx is, how side effects can come back and catch you unawares; of course because I had forgotten the first time round it took me a while to click.
I have also learned that all this ‘positive stuff’ that I try to hold on to can at times border on the denial.  Well, you know what?  I decided it is okay to feel crap and lick my wounds from time to time, no shame in that; no brownie points in pretending I am doing just dandy and then break up in a sobbing heap.
I have also learned how many friends I have who love me; maybe I should learn to love myself a little more.
Anyway, today is Friday and have finally got out of bed and managed to eat something.  Another battle over, another week closer to victory.
And Yes, the battle Is worthwhile and even the nastiest episodes pass.

INJECTION 26TH

2006-03-19T14:24:00.000Z

INJECTION 26TH

A the end of last week I went through a couple of days of mad depressive time, wasting time trying to find the cause in my personal life etc.  By Sunday I suddenly clicked that it had been due to a return of earlier side effects (4 days after jab and lasting 48 hours) that I had not experienced for quite some time and therefore caught me unawares.  I had of course been warned about this possibility but did not see it coming.  When you don’t expect a side effect it seems to hit harder (or maybe it’s me being a drama queen hehe)

This was confirmed this week with a return of the teeth clenching ‘I hate the world’ mentally speedy syndrome.  Not as tired as I was but oh my ‘how I want to pick fault and BE BITCHY. Time to do a Zippy, paint a big smile on and lock myself in a safe place till it passes.

Results for my PCR on the 3rd of April (I hope) but not really too bothered. Just had a letter for a scan on the same day which I did not know I was having; guess it is normal procedure.
One thing that I am grateful for is being comfortable in my own skin and enjoying own company (am I turning into a grumpy old woman?) if so don’t care.  There was a time when I was rather needy and afraid of being alone but all that changed since starting tx.

25TH INJECTION

2006-03-08T21:01:00.000Z

25TH INJECTION

WEEK 24. HALF WAY THROUGH

On Monday I went to the hospital for my 24 week check.  I had my viral load test and, according to the doc, they will keep me on tx for another 48 weeks, whatever the results. My response was not one of acceptance but one of apathy.  What a couple of weeks ago I referred to as ‘getting used to it’ now has become apathy.
According to the doc, my blood levels are holding and ‘I am doing well’?
But I also have a bronchial infection and taking antibiotics once more.

I have been feeling weak and exhausted, struggling to keep up with my interests and spending most of the time in bed.
I tend to think that I got through the family crisis on adrenaline and now am paying the price of not pacing myself.  I have spent most of the last seven days in bed, and if I don’t watch it I could slip into the downward spiral of depression.
I need to reintroduce some activity back into my life.  Isolation is not good, especially when it is my experience that I feel better when I get among people, even if tiring.

On a positive note, my body may be running out of petrol but my head is in a nice place.  I have not had manic episodes for many weeks now and I feel quite good about myself for coming this far.

The last 24 weeks have flown, I have gained a deeper knowledge of myself, and what is important to me.
In my experience, the stress caused by fear pre tx was greater than the reality.

24TH INJECTION

2006-03-08T20:16:00.000Z

24TH INJECTION

I again rushed my way through injection day and the days that followed sorting family stuff out. On a normal week I would not have done so but the matter in hand was too important to opt out. By Wednesday the outcome was a good one and I could let go. I spent the rest of the week mainly in bed absolutely exhausted and feeling very ill.
Usually Saturday and Sunday are my ‘good days’ but this time, although I made the same efforts I shuffled along hardly able to walk or get involved in much.

22ND AND 23RD INJECT

2006-02-27T15:30:00.000Z

22ND AND 23RD INJECTIONS

Another two weeks have gone by. Injection 22 was uneventful… or am I just getting used to it? I reckon it has now come part of my life and unless something drastic happens, this is the way things ‘are’. Or maybe I am so tired that I don’t have the energy to complain anymore?
I must say that tx has proved to be a lot less harsh than I feared beforehand; yes there has been moments of panic, but mainly because there were unfamiliar experiences. Overall, a tongue covered in tiny and painful white pimples, headaches, appetite loss, a bad chest and an intense tiredness.

Last week I went to the hospital, blood tests ok apart from my hemoglobin, which is now 11.2 but according to the doc no cause for concern.
Today I shall be doing injection 24, and next week back to the hospital for my next viral load. Over the last week my energy has been tested as due to a family crisis I have had my three month old granddaughter and my son staying with me; back to looking after a young baby! It has been challenging as they came on injection day and only managed three hrs sleep, by Wednesday I was so tired I could hardly speak and shaking uncontrollably (he! Too old for kids), but once I managed to manage my time and get sleep when she sleeps I have actually really enjoyed it. The love and trust of a young little life has given me a much needed boost of hope.

21ST INJECTION

2006-02-06T18:00:00.000Z

21ST INJECTION

Today I went to the hospital. My platelets have gone up slightly and my thyroid function is normal. My hemoglobin is 11.7 but nurse says that before tx it was 14.5; according to her, that explains my tiredness, as my body was used to that level.
At least it is good to know that my dopiness is due to my blood and not of dying brain cells; my son reminded me that my brain cells went missing a long time ago. Oh well, nice to know, the cheeky lad.

From now on the hospital appts will be fortnightly to keep a check on me.
In four weeks time I am having my second viral load test.

I have just had my 21st injection and will update if necessary. Got some new dvds to watch this week, hehehe.

20TH INJECTION

2006-02-06T17:44:00.000Z

20TH INJECTION

On Monday I had my 20th injection. It was an uneventful week, mainly due to the fact that I slept for a lot of it. Wherever I went I just found it hard to keep awake. Watched dvds a lot, well at least part of them as I kept nodding off.

No major side effects, just the regular headaches and rather a sore mouth and tongue. I am not complaining because at least I have not had actual ulcers or blisters; had a try of some chicken which had chilies in it for my daughters birthday and I spent the next half hour with my tongue in a glass of water, he he!
Still being positive and trying to giggle at the situation; nearly half way there.

NINETEENTH INJECTION

2006-01-30T18:29:00.000Z

NINETEENTH INJECTION

After the previous week’s fiasco, the pattern was different.  It baffles me how unpredictable this tx is regarding the way side effects affect me personally.

It was a good week until Friday morning, when I woke up really tired and breathless.  This was followed by a very sleepy weekend; even if I pushed myself to get out for inspiration, it was hard to keep awake.  At least I know I am not staying in bed due to depression, I would be quite happy if was awake; just that little entity that takes my batteries out.

On Monday I went to the hospital and had more blood tests.  My platelets have not gone any further down and my hemoglobin is 11.6.  It seems the results are good.  So another scare over.  I had some valuable advice from the forum which helped me through the weekend.  The information I got has also made me more aware of what can go wrong.  My calf is still bruised and not a pretty sight; at least it is still winter!  Still bruising easily at the slightest bump but no other problems.

EIGHTEEN INJECTION

2006-01-19T12:02:00.000Z

EIGHTEEN INJECTION

I have just spent three days in bed, unable to get up, in a stupor on and off, and with violent headaches which the painkillers have not touched. Nausea was a problem the first two nights.  Seem to be better today so far.

On Tuesday morning I woke up with a sore right leg, and on later inspection I saw my whole calf was covered by a very large bruise (with no recollection of banging it).  My daughter rang NHS direct and the emergency doctor was called out.  According to him this is due to my low platelets and related to my recent nose bleeds and newly appeared burst blood vessels on my face; he also found bruising in other areas of my back, where my body had contact with the bed.
Following his advice I contacted my nurse on Tuesday but she has not got back to me yet.  My normal nurse has left the hospital for now and the new nurse seems to adhere to the club we hear so much about, too busy to care.
I have rang her again and this time I pointed out to the clerk the advice of the emergency doctor and his concerns; we shall see if she rings back.
It came to me that I have not seen the specialist in eighteen weeks, since the day I started tx, and I now feel I need an urgent consultation.  I have another thirty weeks pending and although my emotional state is fine, and I cope with the sides overall, my body seems to be breaking down.

INJECTION SEVENTEEN

2006-01-16T16:50:00.000Z

INJECTION SEVENTEEN

Last week went quite well, considering.  Went to see doctor and started on mixed inhaler as well as salbutamol; inhaler looks quite trendy, good since it is steroids.

Side effects started again on Thursday, with another ‘small’ kick from my asthma, but more controllable this time.

Had my 12 week test results on Monday.  They lost my thyroid one so had to dado it.  My blood sugar is quite high and, #*#8#* the virus is still detectable, so it looks like in for the 48 weeks.  Was given the amounts but lost the paper and nurse has not rang back with them yet.  I think it was 15 international units per mil (which nurse said was low) and cannot remember the rest.  Will ring her again tomorrow.

I am finding that I am generally much better now, but trends are changing.  I seem to be very tired the first few days and do nothing, but wake up on Saturdays very energetic and attack the house like on a mission (which I don’t mind) apart from the fact that I also get a bit manic.  Just waiting to take my next injection in a while, and start the next turn of the merry go round.

My weight is still dropping but also is my muscle tone disappearing.  My skin is bearing up but aging rapidly; I am getting lots of brown liver spots (the first have appeared on my face this week) and just, to my horror, have found little red veins on my face.  I guess this is not reversible so looking in catalogues for pretty carnival masks, hehehe!

INJECTION SEVENTEEN

2006-01-16T16:49:00.000Z

ASTHMA INTERLUDE

2006-01-07T18:55:00.000Z

ASTHMA INTERLUDE

An asthma attack has interrupted my tx honeymoon.  It started on Thursday, with what I thought was a tummy bug, really sick for 48 hours, unable to keep anything down.  And then it struck, an asthma attack like I thought I would never experience again.

I had bad asthma as a child; spent many winters off school or in hospital under an oxygen tent, but it tailed off as I hit puberty.  I had forgotten what the warning signals were, and the triggers.  There were four things I had to avoid as a child: cheese, chocolate, exercise and fumes.  We had to move away from Buenos Aires to the country when I was seven as the doctors said I may not survive another winter.  I did not know what it was like to sleep laying down till I was twelve because of it.

Now I see that my violent coughing (clear lungs according to X-ray), which started on the 6th week of tx, were the start of the build up to an attack.

I had felt so well that Monday and Tuesday I did short work outs to loosen up and tone up my disappearing muscles.  I used to run up to 40 miles a week a while back in training, and trained on the hills; my asthma was never a problem.  I also did every exercise video and class going, so my fitness was not bad.  I can only put this down to tx and now that I know, I shall ask for the ‘brown’ inhaler, the preventing ones, as the others are not helping.

My old demon that gave me a miserable childhood is back and I hate it!

FIFTEEN AND SIXTEEN

2006-01-03T11:50:00.000Z

FIFTEEN AND SIXTEEN INJECTIONS

Wow! Cannot believe I am now on the sixteenth week, time has just disappeared.

Last week I had a good one, apart from the headaches (still on six painkillers a day) which are not nice.  But after my experience of the 12th and 13th week, nothing can be as bad.
The New Year is here and I feel I have more energy; even my appetite is returning, and my love of chocolate.  I even bought an exercise dvd to start toning up (albeit a gentle Pilates one with 10 minute workouts); I have found that my muscle pain and tension is helped by gentle stretching movement; it kind of oil the joints.  An inside job, someone told me; quite right.
However, still enjoying my new lazy lifestyle, in bed till late, TV, etc.  all I need now is to find someone to serve my breakfast in bed, hehehe! Down, girl.

I must say that whatever my reservations on antidepressants, I can now see their benefit.  They haven’t changed who I was before tx, they have actually taken me back to who I was then, just normal but with my love of life.
Skin itchy today, but no rashes or breaks (I have been lucky and so has my vanity); hair a little dry but nothing that conditioner can’t help.

Will report back if things change during the week.

FOURTENTH INJECTION

2005-12-26T13:51:00.000Z

FOURTENTH INJECTION

Monday again and number 15 awaits.  Bring it on; I hope it will bring a repeat performance of last week.

At last the antidepressants have started to work and I have felt better.  Maybe I have got past the 6 to 12 week horror period they talk about.  I do not care whether it is one or the other; I feel better and that is good enough. However, I am only at times sleeping for two hours a night, but my head is not racing so I try to chill.

I have also changed the way I lead my life maybe that has helped too.  I now wake up, take my painkillers, let them work, have breakfast and chill out in bed watching telly (and dozing) till I am ready to move.  Very decadent, but it has given me nicer afternoons and evenings.

Two weeks ago I thought I could not go on for the duration; now I see that feeling that bad as a ‘marker’.  Okay, I do not feel brilliant, but after the last two weeks it is like heaven. And I am trying to enjoy it, you never know if the waves will come again.

CITALOPRAM OR INTERF

2005-12-16T16:39:00.000Z

CITALOPRAM OR INTERFERON?

Friday 16th of December. I spoke to my nurse today after realizing that for the last few days I have been quite ‘out of my head’ by night time. Just not aware of times, finding things I did not know I put there, texting people at one and two in the morning, normal texts, just not aware of the time, convinced it to be about 10pm (amazed this morning when checking back after an answer)
My nurse says it is not the Citalopram but the Interferon. Just to give the antiDs a chance to work. I am not so sure. Why the sudden change? Not a very safe feeling to know that by nighttime I turn into a mad zombie and do stuff I am not sure of. Especially when I live on my own. My poor cat must hide at night, no wander he sleeps all day! After the fall I still feel off balance and out of it, my confidence has really taken a knock. Nurse’s advice is to lay low and not do much. At the moment I couldn’t do anything else.

OH DEAR

2005-12-15T22:55:00.000Z

OH DEAR!!!!!!!!!!!!!

Just when I thought it could not get worse, last night I lost my balance and fell in the bathroom, I smashed my face on the sink. Today I feel really low; the picture of another 9 month of tx is just so hard. Second week on antiDs, I thought they were supposed to stop me being depressed? Give them time, they say, I hope they hurry up because between the physical sides, and me turning into Blanche from Crossroads, I am beginning to wander what the point of it all is??????????//

Okay, okay, the fact that my face hurts and so does my body may not help. Keep on reminding myself that ‘it will pass’. My lovely kids are being such stars too! They don’t even flinch when I come out with a typical Blanche statement about all and sundry. They remind me that ‘there is’ a point to it all.

TWEELVETH AND THIRTE

2005-12-14T17:36:00.000Z

TWEELVETH AND THIRTEENTH INJECTIONS

It has been so hard to update my blog these past couple of weeks.  It has all got rather strange.  One minute I go around ‘thinking’ I am okay and maybe have turned a corner, the next my life has all but ended, and I am stressing over turning into Blanche from Crossroads (if I could just tape my mouth up before I get out of bed!)

Last week was worse, spent the whole Monday at the hospital, tests and chest X-rays (lungs are clear, dear, maybe it is your smoking?  Maybe not, since my normal 20 per week have never given me a cough before and the 20 is not even 14 nowadays)  also had thyroid and viral count tests, results in five weeks, but I am not really bothered, whatever is, is!
Started the antiDs on Tuesday and spent next five days with awful sickness. All of a sudden I felt beaten, that I could not drag myself up and carry on anymore, very scary stuff. Towards the weekend the nausea lessened, but the sickly feeling after meals still remains today.
I thought the antiDs had started to kick in this week, but it was just my wishful thinking.  Woke up this morning after a horrid night feeling so down and so full of rage; I could not see why life has to continue.  I know, it does, and it passes, my children spent a big part of the day with me cheering me up (my birthday today) and I accept that life ‘has to continue’ because this tx will come to an end and, hopefully, I will return to being who I was 13 weeks ago.  Just bite your lip and ‘plod on’ girl, I tell myself!

I wander whether my depression is made worse by the fact that I see personality changes in me that I absolutely hate; I have no idea where my social skills have gone.  For instance, last Sunday I went to a dinner dance at Bolton Town Hall, by invitation only, with a councilor friend of mine.  I was sat at the top table, sitting with B. R., the head of the local Liberal Democrats and rather well known here.  I could not believe it when I heard myself commenting to another member of her party that I found her behavior arrogant and how I disliked politicians. Ouch! That cares care of future invites, methinks (I did really think it though, but usually I would have kept it to myself these days).  This anarchy side to me I thought I left at Buenos Aires University many moons ago, but oh no! the lippy angry teenager is back.  That would be fine, if I didn’t now find it so so tiring, plus I realize that it is drug induced and not really worth pursuing.
What I would really like to do is to hide myself away in a stone cottage near the sea, and let the wildness of the night wash away this despair that is starting to drown me.

ELEVENTH INJECTION

2005-12-05T10:46:00.000Z

ELEVENTH INJECTION

Another week has gone by, a whole one, another jab due tonight.  It has been a funny week, I thought I was fine but realized hours later that ‘I’ was not ‘I’ at all but some drug crazed alien.

The side effects have been different, again!  The physical sides hit me two hours after jab, and I was really fluey for the first 24 hours, but not too bad after that.

I do not know whether they are subsiding on the 12 week threshold, or I am getting used to feeling lousy and accept it as normal.  Anyway, I can still function, of a fashion!

Totally lost my head, though, and I find that very disturbing.  I feel ‘under the influence’ of something most of the time and miss the old me.  Going to the hospital in a bit, my 12 week appt, and will discuss anti-depressants with my nurse; maybe it is time to give them a go.

TENTH INJECTION

2005-11-26T20:51:00.000Z

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.

NINTH INJECTION

2005-11-20T20:32:00.000Z

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.

THE AFTERMATH

2005-11-11T21:04:00.000Z

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

2005-11-11T18:36:00.000Z

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

2005-11-11T10:31:00.000Z

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!

Sides hit after 78 h

2005-11-05T09:46:00.000Z

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.

2005-11-03T19:25:00.000Z

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.

this is me before tx

2005-11-03T19:18:00.000Z

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

Funny Old thing Tx

2005-11-03T12:41:00.000Z

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.

SEVENTH INJECTION

2005-11-02T19:08:00.000Z

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.

SIXTH INJECTION

2005-10-27T18:15:00.000Z

SIXTH INJECTION

Oh, my!!!  Today is Thursday the 27th; on Monday I had my sixth injection, and Hell could be a pretty good way to describe where I am at minute.

The build up of Interferon has finally got me.  I have a chest infection, taking antibiotics, which my body does not like.  But my emotions are all over the place.  I just cannot find a stable middle ground; I am either crying my eyes out or so wound up and irritable that I am actually shaking.

I feel as if I was on drugs….. Oops…. I am!  I have said very harsh things to my beloved son, totally out of character for me.  What I hate the most is hurting the people that I love, and (selfishly) I hate it because that hurts Me, and I do not handle guilt well.

I spoke to my nurse (lovely Jane was on the phone in less than an hour) and she said that she is trying to find my blood results; something to do with me having an infection and white blood cells.  She also told me that I am describing a well recognized reaction to the Interferon, and that it usually peaks between 6 and 12 weeks.  That makes me feel better in a way and so it should pass.  But now I am in it, it has me in bits.

I have been unable to leave the house this week, too ill, too weak, too shaky, and too tired.  An hour of company is about all I can take before turning into the ugly witch of the west, or a sobering wreck.

I know I may sound negative, but today I feel this is going to be a very long and lonely road.  There, I said it, now ‘enough’ of wallowing into self pity.  ‘resentments’ take a walk!!!  I am here for the duration, fighting this little monkey of a virus till it’s lying dead on the road…….

Until this week I had been having an easy ride of it, now it’s hit me I will try to remember that it ‘can’ get better if I keep positive.  It is my choice to lie down and feel sorry for myself or to ‘ride it’ out.  I choose the later, because I ‘like’ me, I ‘love’ life, I ‘love’ my family, and there is still So so much I want to do in life.

What goes up

2005-10-22T18:54:00.000Z

…What goes up…..

Well, Saturday today, five days after injection, and the world is not so rosy.

I’ve been a bit  speedy this week, ‘manic’ according to my long suffering friend, who’s probably been to scared to tell me to ‘shut up’, till I came round.  I do not know whether it was a direct side effect of tx, or a reaction to Monday’s sedation, but boy, was I going!!!

Then the come down hit me Thursday night, like a ton of bricks.  All of a sudden my batteries ran out and exhaustion set in.  And then last night my eyes got worse, so so dry and sore….  It feels as if I have been wearing contacts for too long.  I have known they were dry for a couple of weeks, but controlling it with Artificial Tears from the chemist.  Since last night they have not done the trick, and driving would be now out of the question; only comfort is to keep them closed.

Maybe I have been counting my chickens and all that.
I have also noticed that I am getting very breathless; had to walk a couple of hundred yards yesterday and could not get my breath back; when I tried to breath in I just felt I was choking and my chest was rattling.

Seeing my GP on Monday and I’ll get it checked out, maybe another infection has arrived; seem to have one a month the last two years.

Going into my sixth week on Monday.  I have decided that I must pace myself and not go at it like a bull in a china shop.  Because of my symptoms I had to stop work and leave my house and move to a ground floor flat because of all the falls I was having.  I do not know how I would be coping now had I not made these adjustments prior to starting tx.

FIFTH INJECTION and

2005-10-19T17:17:00.000Z

FIFTH INJECTION (and Endoscopy)

Whoopie!!!  Endoscopy on the same day as injection???? I was not too sure of the outcome…….

Today is Wednesday 19th, 6.30pm.  I have just got back from Manchester, my Mindfulness course.  And have to say that this week, I feel fine.  Maybe a little speedy for me, but apart from normal aches and headache, nothing new.  Totally bearable.

I met a friend for lunch before my course, and I really enjoyed it.  I drove back quite chilled, still am.

On Monday I had an endoscopy, with sedation, to see if I had any varices in my esophagus.  I was not looking forward to it, but it went well………..or so they told me…………I was  out of it…..
No side effects as warned, no dopiness, no wind, no sore throat.  I did notice that I was a little speedy the next day, but I cannot be sure whether is was the sedation or another side effect from the tx.
Every week the tx gets me in a different way, this is getting interesting….. but so far I cannot complain.

Yes, I do have constant pain, but I have learned to accept that, and when it is really bad I take time out till it subsides.  This is the fifth week, and I read somewhere that it takes this long for the drugs to build up in my system.  So, I am not counting my chickens……….. Just enjoying it while the going’s good.

Fourth injection

2005-10-14T17:17:00.000Z

Fourth injection

It is now Friday the 14th of September, 6pm.  I just got back from town, after a day out with my daughters doing the girlie thing.  Had lunch, window shopped, tried clothes on, etc, and though tired it was good.  I took my time and had sit-ins in shops or wherever as needed.  But I managed to do real stuff. And I enjoyed it, and it was good because the beginning of the week it was a different story.

I had my injection on Monday and couple of hours later knew I was in for something different.  I went all quiet and not comfy.  By next morning, my body and head was just one big sore spot.  I never had migraine before, but it felt like people describe it: constant nausea and a headache so fierce I could not open my eyes…co-codamols did not touch it and neither did the 30mg of codeine paracetamols, so I decided to sit it out and leave the painkillers alone.
Went to bed and closed my eyes……………bed don’t move, please.
I funnily had stabbing pains under my armpits??? Where did that one come from?  And behind my ears???
Thursday afternoon I started to come round and slept well.

I have realized that each week may be different as far as the type of side effects I get and the intensity.

I am glad I did not blog earlier in the week (not that I could have, hehehe or see even) because it would have all been doom and gloom.
I waited for it to pass……….and it did……… that will keep me focused for the weeks ahead.

Got to watch my weight, though, as I am losing 100gs a day, and that’s eating as much as I can force self to.  If it continues I will have to bring in the heavy brigade, banana full milk shakes (hate full fat) and extra goodies.  Thanks to a friend I have discovered Rolo puddings, which have warmed me to chocolate again (had gone off it) and they are going down well.  Every cloud has a silver lining.

I keep in mind why I am taking this treatment….. My relationship with my lovely children who are now grown up friends, and the joy I feel when my silly games tickle my little grandchildren into giggles.  I want more of that, and I shall be in their lives till they themselves are grown up.

So there, you silly monkey virus!!!!!!!!!!  I am going to beat you, because I have love on my side, lots of it……….and……… you may have infected my body, but you have not infected my spirit.

Treatment and mood

2005-10-05T18:19:00.000Z

Treatment and mood

Today is Wednesday the 5th, 7pm.  I have spent yesterday night, and this morning, in tears at the drop of a hat.
I know it is the treatment because nothing has happened, nothing has changed in my life; I actually quite like my life, and I am happy with ‘me’.  At least I can see that the tx blues have hit me…However, bloody not nice while I was there.

Stomach bad as well, had bad cramp like pains all morning.  Eating something with the Ribas was the hardest thing, was tempted to give it a miss but, as I was going out I forced down a lovely slice of cardboard toast.  Yukie.

Today I dragged myself to the Manchester Buddhist Center, for the start of the Breathworks course on pain management.

Really glad I went; there were people from Birmingham and Stafford, as it is a new and rare thing.  At present gathering evidence for the NHS to make it widely available. More info on www.breathworks-mindfulness.co.uk

It works on mindfulness, staying in the moment.  Today we started body scanning, a technique to ‘scan’ or concentrate on each part of the body acknowledging the feelings and sensations but without judging it good or bad.  It was extremely relaxing and grounding.  We have to practice at home everyday with a cd they gave us.  It is going to be beneficial I think as mi mood has lifted again.  Let’s see what tomorrow brings…… no, forget that, let’s enjoy ‘now’.

THIRD INJECTION

2005-10-04T09:59:00.000Z

THIRD INJECTION

Yesterday I had my third injection.  I was already feeling rather flaky; the tx had slowly been catching up with me, so I was not looking forward to it.  It hurt, for the first time; maybe I was a little enthusiastic in my haste.

Ahh, the cold….. I just loathe it!  It is hard to get a balance, when the soles of my feet feel as though sun burnt.  This time the head, ears and eyes ache have been the worst.  And this dammed listlessness that pins me down to the bed. This morning it took me two hours to decide to drag myself up.

Okay, I am still positive, but am starting to accept that I am not after all indestructible.  On a good note, my mood is good (tired of being tired, tired of looking tired even after 12 hours sleep, tired of looking tired even plastered in make up, but it’s small change, eh?).
I keep in mind that there are loads of other people much sicker than me, and I am lucky in that I only have me to look after, so I can do as I want.

Funny double edge sword that one……  there are times when it would be nice to have someone to cuddle up to, when my aching body cries out for the comfort of human touch.   Ha! Caught myself out…… independent little me is feeling sorry for herself.  So many loses…….. so much love gone to waste………….
Gotta remind myself that there will be time after tx to rebuild my life. Ahh, but I may need million dollar intervention to rebuild my looks.  Ahhh ‘vanity’….
Best not go down that road………… what did I say earlier about ‘mood’?  Okay, I gather I am a bit low…. I am human.  I am treatment.  It’s allowed.

Thrashed

2005-10-02T09:07:00.000Z

Thrashed

Have spent the last three days totally thrashed!!!  Slowly but surely, the tx has caught up with me.
I have been so so tired.  I have found myself ‘taking time out’ while I have been out, sitting in corners at shops, wishing I was not there…
Ahh, the arrogance of the ‘I can deal with anything’…..
I have sore dry eyes; it feels as though I had my contacts in, with bits of sand in between.

My attitude, however, remains positive and I make an effort to eat little and often.  I have found that it is hard to shop, because what I used to love before I cannot stand now.  Even when I do feel hungry, once I start I cannot be bothered.

My lovely son bought me a tub of Lemon sorbet (a favorite of mine).  Was afraid of trying it.  But had some last night, two bowls of it.  Hehehe! I can see myself eating gallons of the stuff, refreshing, and gentle on the mouth.  Delish….

Tomorrow is my third injection, and already feel quite crap.  Not looking forward to it.

Wednesday 28th Septe

2005-09-28T05:48:00.000Z

Wednesday 28th September.  5.30am

I have been awake since four, bling! Eyes opened and the carousel of unwanted thoughts started rolling by.
I spoke to someone from the HepC trust yesterday, because I felt too good after second injection????  How mad can you get?
Advised to enjoy the ride while it’s easy… (Good old Sam).  She’s quite right, of course.
This is what I do, you see?  If I’m feeling bad, I feel bad….. But if I feel good, ‘I feel a fraud’?  Why?  I have to finally get rid of this compulsion to punish myself.
It ‘is’ what it ‘is’, just like that… And I know and believe that, but sometimes, when the bogie men come out to play it’s not so easy to ‘live’ it.
Okay, how much of this is the treatment?  Let’s see…
Waking up at four in the morning, that’s definitely not me, so it’s gotta be the tx
Getting up and sitting at the pc at 5.30?  Never done that before, so again, effect of tx.
My dearest friend should by now be on the plain to Grenobles, bungee coming on Saturday.  My heart is there with them, I wish my body was there too.
I even had a fantasy yesterday of how great it would have been to have jumped the bridge on my second injection.  Ahhh.. The arrogance of ego….
But I am not there, and that is as things are, so stop waffling…
Okay, maybe I haven’t had major physical side effect this time, but I reckon the state of my head, although still balanced, speaks for itself.
I can see an afternoon ‘siesta’ pending.  And I feel much better now I got all that out.

2005-09-27T13:14:00.000Z

Oak at Rivington

Second injection The

2005-09-27T10:40:00.000Z

Second injection… The Universe loves me…………

It is now Tuesday 27th 11.40am, British time.
Yesterday, Monday 26th of September I had my second injection, at 5pm.  I was expecting a repeat performance of last week’s, and was prepared for it.
However……….. Nothing happened……… Went to bed at ten thirty, slept as normal, and nothing happened.  No pain, no chills, no nausea…  Looked into my head, was I going crazy instead?  But no, quite at peace actually.
Woke up with a bit of a heavy head and sniffling a bit, but feeling rather good.

I have always said that apart from this virus, I am strong as an ox.  Well, maybe I ‘am’ an ox after all. He! He! He! Hope I don’t look like one as well…

I believe my spiritual preparation and beliefs contribute to my experience of tx so far.  I am not taking it for granted al all, far from it.  As a dearest friend advised, I am ‘letting it flow’.

Maybe the ‘molten metal running through my bones’ feeling I had last week was my life force coming into battle. I am fighting back, the goddess within turned up for battle after all.  Hail!
I do realize it is a personal thing, this belief; but I have always said that ‘spirituality is in the experience’, and while the Universe shows me such kindness, I shall honor it.

2005-09-24T16:36:00.000Z

Ouch, new at this, no image went through. Doh. Leaving it for now.
5.30pm. saturday. gonna get my tea and Rivas

oak at Rivington

2005-09-24T16:29:00.000Z

(image placeholder)

Time difference. Please note that there seems to ...

2005-09-24T15:37:00.000Z

Time difference. Please note that there seems to be a time difference of 8 hours and cant fix it yet. Today, saturday, I am writting at4.30pm, while tuesday's entry was done about 10am, not at 3am. In future, I shall include publishing time in blog itself. I don't want to give the impression that I have turned into a vampire. I do not so far go on the pc during the night. I like my bed too much.

Saturday 24th September. Another couple of days ...

2005-09-24T15:32:00.000Z

Saturday 24th September.
Another couple of days and second jab due.  After first night violent reaction, side effects were minimal, tiredness,diorrhea, achy, itchy, cold sore, but all manageable. Took care of not overdoing it, chilled out and ate bland food little and often.  My taste buds have changed the idea of brown rice or green cabbage is revolting (love those usually), been tucking into boiled potatoes (not my usual fare), yummy... I have been careful to have my Rivas half way through my meal and don’t lie down afterwards.
Also have made my three litres of water a must, and now don't have a problem with it; my mouth tends to be dry anyways, so it reminds me.  Having pasta with tinned tomatoes, fresh basil and fresh parmesan for my tea.  Want to build up energy while I can, proper food was not an option till Thursday after injection, so I decided to eat now.  Last Monday I also had a big tea straight after jab and when side effects came I really 'paid for it', so easy does it next Monday.

Yesterday and specially today, I feel great and ready for Monday.  Been having loads of dreams, but that's been a good thing, since it has provided material for my 'lucid dreaming'.  Getting my head sorted 'rapido' here; my psychic jigsaw coming together.  Must remember 'acceptance', 'surrender', and 'handing it over to spirit'.

I am grateful for the kindness tx has so far shown me.  I will not write tomorrow.  I shall try having a walk up to Rivington Pike..... Ok, maybe also have a look at all the bikers that meet up at the Barn on a Sunday...lol.

As I get on with my last sunday before the start o...

2005-09-18T10:31:00.000Z

As I get on with my last Sunday before the start of treatment I have been pondering that by keeping this blog I may be actually doing some good, turning negative into positive.
Since I started reading blogs in the forum, my anxiety over tx start has subsided, identifying with other people's feelings and experience has taken of the 'I'm the only one' syndrome.  Not egotistic thought that one, just means 'I am weak', 'going to crack on tx', 'if I feel like this now maybe tx will not suit me'.
Ahhhhh! how wrong.  Just a tiny grain of sand, me. Roll on tomorrow.

Today is saturday 17th of september, 2005. Just r...

2005-09-17T23:17:00.000Z

Today is Saturday 17th of September, 2005.  Just returned from a night out, dancing with friends.  I promised myself this night in preparation to Monday, the start of my HepC treatment.
I am now ready to start, most of my anxiety has gone, but I know it's still there because I catch myself being 'edgy' with loved ones when normally I am placid.  Overall not a bad thing, better than being tearful and panicky.
Tomorrow last day before any changes that may occur.  Ohhh!  I sound like poor Mr Jackil before turning into Hyde, or was it the other way round lol.