In the beginning ....

14^th March 2008

Today’s the day. The day the treatment starts. 2 years and 3 months after the diagnosis. What a wait! Don’t really know how I feel. Just keep thinking: ‘It can’t get worse than I have been imagining and if it’s just a little bit better than the worst, that will be a benefit.’ I have prepared the mausoleum … the bedroom with everything I need, so I don’t have to go far, should I not feel like it. Should have gotten myself a chamber pot really.

My main worry at the moment is that I get to the hospital and they say I can’t start treatment due to either not having had a blood test for a while or something like that. So basically I am keeping my fingers crossed at the moment … which makes typing difficult. Ha ha. I have to joke about things, otherwise I’d go nuts. Jessi told me off severely yesterday for trying to crack a joke all the time, saying that SHE wasn’t in the mood for it. Doesn’t get the fact that it is not about HER for once. Oh well, I suppose that’s kids for you. Always think about themselves first, as a parent you don’t have the right to have problems, be it with health, financial or mental. We’re of course just on this earth to perform to their needs and sort out and listen to their problems.

Anyway, better get ready. The dog doesn’t walk herself and I’ve got a bus to catch. Not taking the car. Bristol parking is notoriously atrocious. More later.

15^th March 2008 Saturday

I have survived the first night of Interferon. Injected myself about 11pm in the end, Dragged it out as long as I could with visits to the loo, changing cat litter, cleaning this and cleaning that, yet another cigarette etc. Then I finally took syringe, sharps bin and a bowl (in case I got sick) upstairs. I chose the spot, injected and sort of sat there waiting for something to happen. I should have realised that subcutaneous isn’t an instant hit! I then just lay down, reading my book and didn’t feel any particular way. Just a bit sore where I injected and my limbs were getting leaden. Oh, and I had an annoying gashing sound in my ears, which prevented me from falling asleep for a while. At some stage I turned the light off and must have gone off. At 3am I woke up, feeling very thirsty and hurting, also in dire need for the toilet. I went downstairs. I realised that all my bones and all my muscles were hurting, my throat hat a big lump in it and my sinuses felt blocked. I crept upstairs again, drank some more water and took a couple of Paracetamols. Fell asleep again at some stage. At 6.15am I woke as I couldn’t lay anymore with everything hurting. Got up as usual, watched Eastenders and got on the computer. Coffee still tastes good – what a relief! Apart from this flu-feeling, it’s actually not too bad. I was even going to take the dog for a walk, but was quite relieved when Pete offered to do it. Maybe I should just give myself some rest today. I am quite surprised, that my head is totally clear, I mean I can think just like normal, no fogginess or weird thoughts. If the Ribavirin is similar, I can see myself getting through this without any anti-depressants.

Talking of Ribavirin, I just hat some cereal and have now taken my first dose (at 8.30am). The waiting for those effects has started. Still drinking coffee and smoking. I will go and lay down for a bit as soon as Pete has left with Isis. The bed seems the nicest place to be at the moment. Good that I treated myself to a couple of books yesterday (Paulo Coelho and Tom Holt). I might even be able to do some painting whilst stuck in bed. Greetings from Frida Kahlo *smile*. And I think I shall move my stereo into my room too. Something I should have done during the week, but didn’t get round to do because of all the cleaning and other preparations.

22.30 h

It is now nearly 24 hours since the injection. The day was generally not too bad, certainly not as bad as I imagined. I thought I would be flat out all the time, but it goes in stages. I feel almost ok for half hour, then start to yawn and feel tired again. Since about half an hour the flu symptoms have really kicked in, although Erik (the nurse) said yesterday, that it should have worn off by now. As always I am special! My joints and muscles hurt like mad now and I am only crawling up and down the stairs. I have just taken a couple more Nurofens and am hoping that this will give me at least some sleep. I am trying to drag out going to bed as it is. Can hardly keep my eyes open, nose and eyes both pretty runny. If I could stay up until 23 h I think I would be able to sleep until 6 am again, maybe again with a break at 3 am or thereabouts. We’ll see! Anyway, I have not yet noticed a loss of appetite, and so I will go downstairs now and get my usual pre-sleep teacake. It’s a bit of a bummer as the lacking appetite was something I thought wouldn’t be that bad being a vain woman. Never mind, it probably has it’s reason and I might just be able to stay a tad healthier throughout the treatment if I can eat properly.

Sunday, 16^th March 2008

Not a bad night. Woke up at 6am pretty refreshed. Vivid dreams all night though, about being on holiday on some island with Werner, staying in some caves, getting splashed with oil from tankers, which illicitly dumped their loads, but turned out not being oil tankers at all, but ships which catch sharks en masse. Saw the dead sharks hanging in the body of the ship. Most strange!

Took Isis for a walk at 8am. I had to get out and get some fresh air. I am just not used being cooped up inside all day. Didn’t do the usual big round around the health park though, just the shortened version. It was raining heavily, as it has done the past 2 days and Isis was not too keen herself. Came back, had a big bowl of cereal for breakfast and took my tablets. Shortly after I had a brief telephone conversation with Jessi. Only 20 minutes … very short for us, but she still had Toby round and I was getting affected by the Ribavirin. Was in bed again by 10am for a brief snooze. Up again by 11 coz I needed a wee. Strangely enough, I do wee a lot the last couple of days, although I don’t drink excessively. Maybe that’s part of the treatment too. Possible that the body tries to get rid of toxins.

Pete is grumpy as always, but did ask me this morning how I feel. I immediately suspected that he wanted to reassure himself that I will be fit for the usual cleaning, washing and cooking. But hey, who knows, maybe he WAS seriously concerned. However, he doesn’t do any more than usual, bike as always comes first. I have the feeling that he expects me to be eternally grateful for taking the dog out a couple of times yesterday, despite the fact that I never get any gratitude for the years of looking after him. Where does negligence stop and mental cruelty start, I wonder. I am still convinced it was the right thing to do to make the break after coming back from Malta. It was long overdue, years to be precise. But for him nothing has changed anyway, I carry on with my household chores, so it’s no bother to him that I now sleep in the other room. Quite frankly, it is probably a relief to him too. He hasn’t wanted any physical contact for a long time, even when my leg or arm accidentally strayed during the night, he used to shrink back. I just wonder why he didn’t encourage the split. Maybe he was afraid that he would have to move out? As I said to him in the letter, there are many qualities I value in him, but if the niggling things outweigh the pleasant things, it’s time to call it a day. We haven’t been able to make each other happy for a long, long time.

Monday, 17^th March 2008 9:30h

Feeling when waking up this morning: not only 1 but 2 busses had crashed into me. Got a little bit better after the Nurofens. Then I took my Ribas at 8.30am, now I feel bad/worse again. Will have to have a lie down in a minute. My liver is cramping (is it psychosomatic as Pete suggested?) and my head feels like a mushy balloon. Luckily this wears off as the day goes on usually, just to be replenished with the evening dose. It’s a wonderful life!! NOT!

17:40h

Gosh I am so angry at everything, and totally pissed off and could just burst into tears at anything. Must be the drugs. Well they say, personality changes are amongst the side effects. I also feel guilty, for not functioning properly although I have managed to do my household today and shouldn’t feel guilty towards Pete, just because I will have to ask him to take the dog out tonight. After all, I coped with taking her to the shops and the health park today. In between all this, I am so tired and pissed off, don’t know where to put myself, don’t know what to do and don’t know where to start anything. Grrrrr I am mad mad mad at everything and everybody!!!! Especially myself!

Tuesday, 18^th March 2008 9.20am

Apart from being moody (nearly through a pizza at the wall) I didn’t do too badly last night. Took the Ribas at 8.30pm, after having cooked and done the dishes, and that after doing the hoovering, sweeping and mopping kitchen and porch, washing, drying, tidying away and changing my bedding. I do twice the household chores to make up for Pete having to take the dog for a walk mornings and evenings. But it has always been like that, for every little thing somebody else does for me, I do 10 other things for them. This certainly shows some mental illness/impairment. And despite doing all these things, I STILL feel guilty having to ask Pete to take the dog. I wish I could do it myself and then be able to cook for just myself and just do the things I need to do to feel comfortable. In short … I just wish I was independent. I am annoyed this morning because everything was so nice and clean last night, and then Pete left his crumbs all over the place again this morning and spilled rabbit food everywhere on the floor again. I feel like I am fighting an endless battle and he doesn’t take a blind bit of notice, when I ask him to do something, i.e. clear away his mess from the table in the living room or not leave 3 pairs of boots standing there or not occupy 1 ½ sofas with his junk. He just grins at me when I mention something and does fuck all. He makes me furious and I choke at the swallowed anger, but I don’t know how to express it. Past experience has taught me that people get violent if I convey my annoyance. This is probably why I shut up and put up with being the skivvy. I wish I could afford some therapy which could help me with these issues. But of course, that is well beyond my means. Well, maybe the personality-changing treatment will finally change me into the angry person on the outside who I am already on the inside. One can live in hope!

Took this mornings’ dose about an hour ago and as yet don’t feel too bad. It is the most stupid therapy though, the moment the effects of the drug wear off you have to take another dose to make you bad again. Isn’t that paradox??