First night's sleep lost to the treatment. Taking that SSRI yesterday has got my brain overstimulated, I've been awake since three. Was too hot, and my brain feels buzzy. I'm sure I will get used to them soon.
The view on the Hep C forum is that taking vitamin D3 supplements is not contraindicated with Boceprevir, so I'll start on them as soon as they arrive.
Saturday 16 February 2013
Friday 15 February 2013
5. 15 February 2013 - Vitamin D better than Boceprevir? and, feeling calmer.
I started taking anti-depressants today, to fortify my brain chemicals to face the onslaught of interferon. The Hep C consultant told me to ask for the weakest strength, 10mg, but when I was in the appointment with the doctor I forgot, so I’ve got the 20mg and am taking half. Last time I took these they made me fat and killed my sex drive, I hope that won’t happen if I can manage on 10mg.
There’s an article on the Hep C Trust website which shows adding Vitamin D supplements to the standard therapy (of peg. interferon and ribavirin) as increasing SVR levels from 42% to 86%. Hepatitis C Trust | January | Can adding vitamin D improve response to HCV antiviral therapy?
That’s better than Boceprevir (although it was a smallish trial). (Wikipedia says Boceprevir has SVR rates of 75% - 66% for the fixed term therapy.) The subjects took 2000 IU/d / 50μg vitamin D3 per day, as well as the standard therapy. That seems to be twice the strength of the max strength tablets, or 10 times the recommended daily amount.
I’m going to get some strong vitamin D supplements, and start taking them straight away. I can ask the nurse about them at the appointment in a couple of weeks.
Last week I was feeling really panicky and frightened, but this week I’m much calmer. Being worried and frightened was part of the preparation I think, something I just had to go through. I’m better prepared at work now, I'm a bit ahead, so can move my focus onto myself without guilt.
My brother sent me a lovely supportive email (eventually). Given that he took 10 days to get back to me, I am not sure he’s not one to call on in an emergency but it makes so much difference knowing he's there. A. is being supportive, listening and asking questions, which is also a big comfort, knowing he’s on board.
I am going to see my parents this weekend. I wonder whether it will be the last time this year, if I can't face the drive (they are 2 and half hours away) once I’m on the medication.
The pace is picking up now. 2 weeks to the start line.
Friday 1 February 2013
4. 1 February 2013 - A month to go until I start the treatment
I have too much time to think about starting, and it is building my fear of the treatment. It's kind of like hanging about at the top of a cliff looking down, but not launching your glider. Vertigo.
I am worried that I don't have enough support.
It was Grandma's birthday last weekend, and mine last week, and we met for our annual joint birthday get together. I was awake at 3 in the morning, unable to sleep, and distressed, scared. I realised it was because I had been looking forward to seeing my brothers, Aunt and Uncle, Mum and Dad, to recharge my courage from their support; but when it came to it I didn't mention starting the treatment. I looked around the dinner table, at everyone talking superficial pleasantnesses and thought, this is what this weekend is for, not for getting attention and support for me.
I get cross when I'm with the aunts and uncles, that we aren't closer, that our relationship isn't realer. They do know I have Hep C, and they are aware I did the treatment before. Mum doesn't want me to talk about it though. I think because it takes her back to the time when I got it, all that unpleasant craziness. And my main loyalty is for Mum, so if she doesn't want it mentioned, I let it go. I don't know if it's the right thing to do though.
Anyway. At 3 in the morning, I was really upset, crying on the bathroom floor with my need to be able to be myself, and be accepted by my family. I realised it was unrealistic, and that they were there to have a nice time, not to look after me. But I decided that I was going to look after me, and came back home to A. That was not a 'done thing to do', but I did it, I left early. I wonder if there will be any fallout.
My Aunt texted to say she wants to come and visit. I don't want to tell her about the treatment now, because it will only make her doubly determined to visit, to look after me. But she's a stressful visitor, nothing is right for her, and things have to be her way. (Mum says I'm just like her, only when she's cross with me.) So I've not responded to my Aunt's text, and that's not polite, but I just don't know what to say.
I've emailed both my brothers this week telling them I'm starting the treatment, and heard nothing back from either of them. I asked G to be back up support, just in case, as he's physically closest. Email silence. I'm feeling sorry for myself now writing this!
My dear friend J has sworn she's there for me any time, but that's just silly. She lives on the other side of the country, has two children under 3 and a teenager to take care of, and a stroppy husband.
A will be looking after me. So long as he doesn't start drinking again. A is addicted to alcohol. He's been sober for nearly a year now. When he drinks he makes Mr Hyde look reasonable and caring. But at he moment he's dear Dr Jekyll, and wants to stay that way.
Last Friday I spent all morning reading the posts on the Boceprevir thread, in the HCV support forum http://hcvsupport.org/forum/index.php?topic=2472.0. That was what got me really scared. Tales of cracked tongues from all mucous membranes turning sahara like, anaemia, depression, exhaustion. I don't want to do it!
And the new treatments look so good. 80% cure rates for null responders, not the 40% achieved by Boceprevir. And no interferon. I am going to put myself through this, 48 weeks of feeling ill, all for a dream to be able to start a family, which is a long way off being a plan. A is not in a position to promise anything. Still, if I don't try, it definitely won't happen, and I do dearly want a family.
Thanks for listening to my rantings, cyberverse. See you again soon.
I am worried that I don't have enough support.
It was Grandma's birthday last weekend, and mine last week, and we met for our annual joint birthday get together. I was awake at 3 in the morning, unable to sleep, and distressed, scared. I realised it was because I had been looking forward to seeing my brothers, Aunt and Uncle, Mum and Dad, to recharge my courage from their support; but when it came to it I didn't mention starting the treatment. I looked around the dinner table, at everyone talking superficial pleasantnesses and thought, this is what this weekend is for, not for getting attention and support for me.
I get cross when I'm with the aunts and uncles, that we aren't closer, that our relationship isn't realer. They do know I have Hep C, and they are aware I did the treatment before. Mum doesn't want me to talk about it though. I think because it takes her back to the time when I got it, all that unpleasant craziness. And my main loyalty is for Mum, so if she doesn't want it mentioned, I let it go. I don't know if it's the right thing to do though.
Anyway. At 3 in the morning, I was really upset, crying on the bathroom floor with my need to be able to be myself, and be accepted by my family. I realised it was unrealistic, and that they were there to have a nice time, not to look after me. But I decided that I was going to look after me, and came back home to A. That was not a 'done thing to do', but I did it, I left early. I wonder if there will be any fallout.
My Aunt texted to say she wants to come and visit. I don't want to tell her about the treatment now, because it will only make her doubly determined to visit, to look after me. But she's a stressful visitor, nothing is right for her, and things have to be her way. (Mum says I'm just like her, only when she's cross with me.) So I've not responded to my Aunt's text, and that's not polite, but I just don't know what to say.
I've emailed both my brothers this week telling them I'm starting the treatment, and heard nothing back from either of them. I asked G to be back up support, just in case, as he's physically closest. Email silence. I'm feeling sorry for myself now writing this!
My dear friend J has sworn she's there for me any time, but that's just silly. She lives on the other side of the country, has two children under 3 and a teenager to take care of, and a stroppy husband.
A will be looking after me. So long as he doesn't start drinking again. A is addicted to alcohol. He's been sober for nearly a year now. When he drinks he makes Mr Hyde look reasonable and caring. But at he moment he's dear Dr Jekyll, and wants to stay that way.
Last Friday I spent all morning reading the posts on the Boceprevir thread, in the HCV support forum http://hcvsupport.org/forum/index.php?topic=2472.0. That was what got me really scared. Tales of cracked tongues from all mucous membranes turning sahara like, anaemia, depression, exhaustion. I don't want to do it!
And the new treatments look so good. 80% cure rates for null responders, not the 40% achieved by Boceprevir. And no interferon. I am going to put myself through this, 48 weeks of feeling ill, all for a dream to be able to start a family, which is a long way off being a plan. A is not in a position to promise anything. Still, if I don't try, it definitely won't happen, and I do dearly want a family.
Thanks for listening to my rantings, cyberverse. See you again soon.
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