Big Day Tomorrow ... 30th August 2008

Tomorrow is going to be a big day for me and the Nomads Hepper Community! Finishing treatment coinciding with my 50th and planning a big party with incorporated awareness event down in Bristol town, has triggered quite a bit of interest in the media world. So the agenda of tomorrow looks like this:

6.00 am Get up
7.30 am Taxi to BBC Bristol
8.10 am Radio Interview with Ali Vowles about Hep C
9.00 am Taxi back home
11.00 am First guests to arrive
12.30 pm Buffet Lunch at Chateau La Fish
3.00 pm The group descends onto Bristol
4.00 pm Awareness event outside Colston Hall
4.30 pm Leafletting, free hugs & info at Harbourside
5.30 pm Return to the ranch
6.30 pm Dinner
7.00 pm Evening festivities start

It will be a busy and stressful day for me, but I am so looking forward to it. I am so amazed how quickly energy levels have risen. Mentally I feel like a new woman anyway, hopefully the rest of the body will follow. Still full of aches and pains, including headaches, but in this frame of mind, much easier to deal with. Hopefully tomorrow's activities will only be the start of a whole awareness campain. It would be good to go national as we have got forum members in almost all the bigger cities of the UK, but not everybody can afford to be as open and frank about Hep C as me.

I would like to thank Mr Martin Bolton at this point, for making my time at his forum such a gruelling one and to force me to leave. It was probably the best thing that ever happened to me. I tip my head at his foresight :P

50 today

How very uneventful it really was! No major changes, no more aches and pains than usual, no sudden awakening to greater wisdom, just plain old Karina. But I did realise that I can now join the AXA Over 50th Plan and go on a Saga Holiday. Age has got its advantages too ;-) I dont even feel bad being 50. That probably proves, that age is but a number. As somebody on the forum very kindly put it today: I am not 50, I am 18 with 32 years experience. I liked that!!! Didn't do much; went down the road for some charity shop browsing, got my hair cut (see new profile photo), or rather what was left of it, bought a new, fitting bra (the old ones are all too large) and a couple of pairs of trousers. Oh yes, and I finally had to succumb into buying an eyelash curler. Probably won't need it long, but it's a good thing for the time being. And I got some tweezers as I need to sort out my forest-type eyebrows before Saturday's party.

Pete got me some Royal Jelly bath foam and some Dead Sea Bath Crystals with Jasmine, which I though was rather thoughtful, and he painted me a beautiful birthday card, which I will frame. It has only taken him 3 years since he promised me one! Pete's mum (who he hasnt told that we have separated) has send the usual bag of Lush products. She knows I love them! Plenty of birthday wishes on the forum, made me feel loved, quite a few text messages and a phone call from my ex-mother-in-law, who I love dearly and is closer to me than my mother ever was.

I was spoiled too. I only had to do the shopping, the hoovering and the cooking today. Pete did the rest. And on this note, I shall submerge myself in some smelly bubbles now and REALLY spoil myself.

Another First Day ...

Today is my official first day of detox. Not sure what I am feeling yet. Elation in a way that it is all over and I seem to have beaten the virus. But also starting to feel a 'what now' emotion, i.e. having to think about the future. I know it is too early to make firm plans yet, I am still far too confused with too many chemicals swirling around in my blood. But the threatening wall of having to find work again and having to actually leave the house every day is slowly mounting in front of me. Many of my detoxing friends on the forum report a great sadness around about the 2nd or 3rd week. I have thought about this, and it seems to be quite obvious that that will happen. As my answer to a post regarding this topic on the Nomads says:

What we have gone through is massive. Shoving our body full of chemicals, beating the virus, all that fighting before and during tx, physically and mentally. And then what? It's bound to leave a void, which expresses itself in sadness for a while. But I firmly expect that a better, bigger us will emerge in the end, we will be stronger and more assertive, more sure of what we want and more importantly what we dont want! In the meantime, let's embrace the sadness and grieve for everything we have been through, it's a bit like an old mate has died, isnt it?

I know I will have to be patient to come to that point, but I think I will ... I think we ALL will.

Poo, poo and more poo ...

What the heck is happening with my body now?? After over 5 months of solid stools, solid to the point of causing bleeding, I have now the waterworks non-stop. It started a few days ago, that I got terrible tummy pain the moment I ate something. One day of vomitting followed and now this. I must have spent about 2 hours in the toilet this morning, enveloped in my own stink, because I couldn't flush as fast as I was producing shyte. It seems to have calmed down at the moment, but then I must be completely empty up to the stomach if not further. I feel completely weak and washed out (!), but find it difficult to get anything, even water, past my lips. A trip to the doctors might be needed again tomorrow if there is no change.

Anyway, the birthday party planning is coming along nicely. Over 20 people have confirmed so far and there are a few possibles still in the pipeline. Funny this is so far away from what I had imagined about a year ago for my birthday, but I am loving it. It will be particularly good to do some awareness raising in town. There isn't done enough in Bristol and I might have to think of more drastic measures in the future ... like chaining myself to the Venue building or on top of the BRI hospital. *grin* Still hoping to found a support group once I have detoxed a bit and feeling better. Even though I am still considering to move next year, once the support group is set up, it probably will keep going beyond my departure. I am not delusioned enough to think that I am irreplacable.

Shot. Last. Done. Worse than ever ....

Couldnt wait any longer yesterday. Did the last shot at 6pm. It was pretty unceremonious, only when I pulled the needle out for the last time, I mumbled: "Bye bye forever!" Well, lets hope that it will be a 'forever'. About an hour after the injection, I started throwing up, having really bad stomach and belly cramps followed by various trips to the loo, shivering and sweating all night and I only just managed to get up at 12 midday! Did have my breakfast at around 9am, but instantly felt sick and tummy troubled again. So went back to sleep. At the moment the stomach has calmed down. I wonder if it is the Ribavirin doing it and my inerts saying: "WE HAVE HAD ENOUGH" Tough, there is another 6 days of tablets to be done. Oh well, got this far, will manage the last few days too.

Now of course I have started to worry about the detox. Will I feel as bad as some of my friends? Or might I just be lucky and one thing will go easy for me for a change?? I think if I just can get back to feeling as before tx, it would be bloody marvellous. Anything better than that, I would jump with joy. Having felt crap for nearly 20 years, I dont really have a picture of how a 50 year old, relatively healthy woman should be feeling.

Jessica felt the necessity to row with me in her emails again yesterday. She seemed to have some problems with her parents-in-law again, who are refusing to pay child maintenance for their 25 year old son. She wanted to phone me to 'discuss' this with me. Apparently she was very low. Well, unfortunately, so was I. I had just spent some time vomiting and in pain, I had a banging headache and just wanted to lay down. I told her, that I didnt feel capably of holding the phone. She went into a rant about that everybody lets her down when she needs people, that she always has to be there for us, but nobody is ever there for her. I know that song and dance, and just didnt email back and looked after myself. The message I had this morning: "Bye then and thanks for nothing!" So the blame is on me again and I am expected to come crawling and make up I guess. The thing is, I've just gone through tx on my own. She wanted to come and visit, but found every excuse under the sun not to come. So I left it. Whenever she phoned, it was about her, usually a hasty 'And how are you?' thrown in at the end. So therefore I don't think I should feel too guilty for caring for myself at the moment. I shall not make the first move for now. Gemini's are such difficult people. Beautiful and vibrant and loving on the one hand, and devilish and hurtful on the other end. Shame they don't recognise that.

Going to force myself out with Isis now and then down to the cashpoint. Hopefully once there I find the strength to go scowering the charity shops for an outfit and grab some food stuff too. It might just lift my general mood!

I've lost it ....

Now I know that there are many of the people I know who would argue that I have lost it a long time ago, not only now. But that's not what I am talking about. It's the things I have lost during being on treatment:
- lost my left big toe nail a couple of days ago
- lost interest in almost everything for a while
- lost my memory on plenty of occasions
- lost friends
- lost whole days
- lost appetite
- lost weight
- lost hair
but luckily, never quite lost myself! And that is what I am grateful for today!

Lizard Skin ...

When I sat in the bath yesterday, all bare and accessible and I was washing myself down with the wonderful Aqueous cream, I noticed how bad my skin has gone in places. Particularly my outer thighs and bottom are affected. And my face. You can stroke the skin in one direction and it feels dry but ok-ish, but if you go the other way it's like sandpaper. Being a practical sort of woman, I thought at the next bout of better, rain-free, weather we have, I shall bare it all again, sit on my garden bench and sand it down. Lizard skin gotta be good for something. :-)

Had my end of tx PCR result yesterday: NEGATIVE! The world looks quite different today! Although I still think they did the PCR a few weeks too early, but they probably wanted it done and dusted for my last, yes LAST, visit on 28th August. I must confess, to celebrate the new virus free life, I had half a glass of red wine last night. And it tasted so good! But, I wont be doing another one now until my birthday, although my nurse said, that the occasional one now is ok.

Well, trying to go shopping now. The gaping emptiness in my fridge has become unbearable!

It has no end ...

Now I have got the flu, with all it's symptoms well and proper. Sore throat, nasty cough which leaves me breathless even when lying down, temperature, shivering and cold sweats. I havent been out with the dog since the day before yesterday and she is not well pleased with me. So I was going to try to just waddle around the corner with her to the little green in front of the old folks home, so she can at least have a wee. She is so stubborn and wont go in the garden during the day. Yesterday was just dreadful as she point blank refused to go in the garden. When I actually sent her out, she just lay down and looked very sad. Well, she cant understand that I am ill, can she? And I feel so sorry for her ... more for her than me ;-)

Shot 23 today. It will be interesting how this will slot in with the flu. Will it make the flu worse, will the flue make the sides worse, or will nothing happen? Oh I have such a fascinating life!! Depending how I will feel next week, I might do the last shot on the Tuesday. Then I just have to finish the Ribas and hey ho ... bob's your uncle. I wish! I get more and more the feeling, that detox will be a bitch!

Horribly sick weekend ....

Well, it's actually not only been the weekend. It started Thursday, carried through to Friday, but today has been the worst. I have finally experience the 'flu-like symptoms' and nausea to the point of vomitting. Nothing tastes right either. Will try a bit of ice cream in a minute, just to get rid of the vile taste in my mouth. So glad I dont have to kiss anybody *LOL*. I think my friend Humble is right: the body subconsciously knows when the drugs are coming to the end and kicks up a mighty old stink. Oh well, let it, it won't be for much longer.

Went shopping today, with Pete, because I had to, otherwise there wouldnt have been any yoghurt, fruit and water in the house till next week. But it was the worst experience ever. Felt absolutely horrendous on the bus, totally breathless through the supermarket and could have kicked people on public transport on the way back. Well, as a consolation, I didn't! Could have been fun though *hrr hrr*

With the end of treatment looming, Pete's question about rekindling our previous relationship is looming too. But the more I think about it, the more the answer is NO! I am making a list about the positives and negatives we had when we were together, and unfortunately the negative points FAR outweigh the positive ones. I think I might post it on the forum and wait for people's comments. Should be interesting!!

Two little ducks .... 22 down, 2 to go

22nd shot, 1 day earlier than usual ... and rather sick! Strangely enough I have read that from quite a lot of people that the last few shots are the worst. How does the body know, that it is the last ones? Or is it just the fact, that the system is totally oversaturated with medication at that time? But that cant be, because people on 48 or 72 weeks would then permanently be sick from about week 20. Strange stuff this interferon! There isn't actually much to say at this stage, apart from 'head down and trough'. My hair is falling out steadily, pillow, t-shirts, hats, bath tub ... everything is covered with it. Simply running my hand through it results in bushels of hair between my fingers. Arrrgh! I am wondering if I should shave it off now, give it the chance to grow from scratch? Not that it has grown at all the last 5 months. Hmmmmm ... oh what to do?

Planning for the party is running ok so far. I really hope that all the people, who want to come, are going to be able to come on the day. I wonder what Pete will make of a bunch full of heppers in the garden *ggg*. I would really quite like to go and do some leafletting in the centre of Bristol, but not sure if we would have the time. Although, if people arrived middayish on Saturday, we could bus it in and do a couple of hours. It is always very busy in town on weekends. I shall have to ask the party attendees. Not everybody is comfortable with it, I reckon.

Ohhhh, Jessica's gynaecologist is 90% sure it will be a girl. I was livid with joy when I heard :-) But I must tell her, not to call the baby Samira. I learned yesterday, that that was the name of Saddam Hussein's second wife O.O

Last legs ...

I am on my last legs ... with treatment and healthwise. I have decided to bring the last 3 injections forward to Wednesday, which means that I finish a week before my birthday, well at least with the shots. Still going to have to take the bloody Ribas for another week ^^ I just want to have a drink on my birthday, but as discussed with the nurse, as long as the final PCR is undetected, I can have a glass of wine here and then now. It's not going to make any difference.

Birthday party is on the 30th of August. I am so happy that quite a few people from the forum have decided to come. It will be interesting to mix old and new friends. Particularly as my Bristol friends have not been through this treatment with me and will probably learn a lot more about HepC from Chrissy, John, Wendy, Cathy and whoever else might come. Depending on numbers and weather, we will either have a BBQ in the garden here, starting the festivities early in the afternoon, so people who cant make the evening, can at least drift in and drift out earlier, or if the numbers are too big, but the weather fine, we have a picnic/BBQ in Victoria Park. And again, small number evening do in the house, large one? Well maybe in the Albert Inn down the road. Their function room does not cost anything to hire :-) Righty-oh ... I am getting my 50th Bday party as planned ... yippers!!!

The picture says it all ....

... and I am so fed up, I could explode. I scored pretty badly on the depression chart at the hospital yesterday and the nurse seemed slightly worried. She wondered, if I needed some extra supervision, but I told her that it probably is because I am so fed up with it all. She asked, why and with what exactly. I told her not to get me started, but then just blurted out, that I am fed up with 90 year old women overtaking me all the time, just because they are able to walk faster than me and breathe better than me,
I am fed up with the constant and more and more serious skin problems, fed up with my hair falling out and having bald patches, fed up with my life being on hold and and and. Anyway, she broke out in a laugh, and it was her beautiful black face with a very happy smile and the deep, African guttural laugh that cheered me up. And I laughed with her. So we both giggled for a while. Very soothing! She was a nurse I hadnt seen before and I keep thinking, treatment might have been a lot easier, if I had had her all the way through. She talked to me like an adult and was able to laugh with me like children. A very good combination for somebody as fed up as me.

Well, today I should get the results of yesterday's blood test. She did say, that the last few weeks were a bit worrying, but they didnt reduce my dose as they were trying to push me through. She was also the first nurse to say, that if it gets unbearable to phone her. Why couldnt that have happened earlier. Not that I would have phoned, not one to moan down the phone, but just to know that there was such an option would have been comforting. They also did my end of treatment PCR, which means I should know in about 2 weeks if the virus has gone for good. Ah no, that I will know in 7 months time, but it would be very good to be undetected at this stage. Fingers n toes crossed, ey?

So far shot 21 has been uneventful apart from a pretty sleepless night, but I think that was more down to the family of mice that seems to be nisting in my bedroom wall and keep me awake with their hustling and bustling. Bloody cats not doing their job!!! On the other hand, how would they get into the wall? ;-)