The letter with my treatment start date still hadn't arrived, so today I called the hospital. It's been nearly four weeks since I saw the consultant, who told me 4-6 weeks. The woman who does the Hepatology appointments is on holiday until 4 December, so I got shirty with the woman on the general appointments number when she couldn't help me. Not proud of myself. I left a message on the Hepatology appointments answerphone, but don't expect to hear anything.
Most other things have been going well though.
I've bought a spare bed, splashing out on an extra comfy mattress, so that I don't have to worry about keeping A awake if I can't sleep. And we managed not to have a huge argument when the mattress would only fit in the car over the top of his seat, so he'd have had to crouch all the way home, and after he'd struggled to squash it all in I then decided I didn't want to drive like that and we took it back; which I am very grateful to A for.
A's said he wants to look after me on the treatment. We had a big row last week, partly because I'm thinking differently because of the treatment. I now judge things by whether I'll be able to cope with iton the treatment, rather than whether I can cope now, so when he started smoking again I insisted he go outside in the rain and cold. Before, we both used to smoke in the living room. Last time I did the treatment was similar, I became more selfish, the treatment came first. It's so good to know he's been thinking about it and is preparing mentally.
I have been enjoying the fasting; not the being hungry, but the amount of energy I have. And how good food tastes on the up days! I have also lost 4 pounds, as an added bonus.
Bikram yoga is completely exhausting, but makes me feel enormously clean and refreshed and generally virtuous... after: the very long walk home, dragging myself up the hill gasping for water, and desperately preparing some dinner before I collapse.
There has been plenty of other splashing out, on a yoga towel and yoga shorts, moisturising lotion, whatever is treatment related I buy. I'm spending my savings for a deposit for a house.
I have a daydream in which I get to my week 4 blood tests and they say... "but you didn't have any virus present when you started the treatment!", because I've cleared it by being so good.
Re- a potential treatment timetable: I've written some thoughts down, but until I see the nurse I don't know how useful they will be. I'm thinking about making a star chart to keep track of my medicine doses. Why not gold stars, if I'm going to use stickers to mark doses taken? I guess a lot of people do? Not the stars bit, but a chart with stickers.
The only area where I've really not made any progress is at work, in getting things ready so I can be less efficient later in the year and still get everything done. That's another reason I want a start date, to have a focus and a deadline and a kick up the arse.
Ooh - and I got my a Citalopram prescription. The doctor told me he wanted to see me 3 weeks into my treatment, as "the hospital will look after your liver, and we will look after your mental health", which is heartening.
Anyway - I hope all is well with you, thank you for listening, and goodnight.
Tuesday 20 November 2012
Tuesday 6 November 2012
1. 6 November 2012 - preparing for treatment
I saw my consultant at the hospital last week, and we agreed that I would go ahead with the new triple therapy for Hepatitis C. The consultant recommended Boceprevir over Teleprevir in my case, as I had eczema when I was younger, and she thought I might be high risk of the rash.
I had been very tense and anxious, for a few days before the appointment, I guess because I was nervous about the decision to be made. After the appointment I felt much lighter, knowing I was going to go for it, which makes me think I'm doing at least what I think is best.
I had been very uncertain about whether to go ahead with treatment now or wait for new treatments which don't require Interferon. My liver is in pretty good shape at the moment, level 1 scarring. But... even though it isn't very likely I do hope to be able to try for a baby in a few years time, and would like to try to clear the virus first.
My treatment will start in four to six weeks, depending on when they have space in the clinic. Or maybe a little later, knowing the hospital.
On the Friday after the decision I spent pretty much the whole day on the internet, trying to find out everything I could about triple therapy with Victrelis. I couldn't find many treatment diaries giving first hand experience, just http://48weekshcv.wordpress.com/, which describes the experience of Lynn, who was given Boceprevir during its clinical trial phase.
It was a relief to find http://hcvsupport.org/forum/index.php/board,3.0.html, the HCV support group. I'm very pleased to find somewhere I can ask how big a 'snack' is, when the time comes.
Lynn's blog, and what I found elsewhere on my marathon trawl has convinced me that I need to be determined to stay fit throughout my treatment. My memories of the combined treatment are that I was too tired to do anything, to walk up the hill to the shops, but it seems to me that the fitter you are the better you can bear the treatment, which maybe is why people find that it gets harder and harder as the weeks pass - you feel awful so you rest, then your fitness level drops which compounds your feeling awful.
Thing is I know enough of myself to know that discipline is not my strong point. If I feel rotten I don't go to the gym, on a normal day. So, how to get myself to a place where I go to the gym when I don't want to? Hmm. This is one of the reasons I'm writing this blog, to think out loud, write down why it's important, to try to motivate myself.
Things to do before my treatment starts in 4 weeks time:
- Clarify with the consultant whether I should go to my GP and get a Citalopram prescription, to get started on before my next hospital consultant. Done - I called the hospital today and was lucky enough to speak to my consultant, who said yes go ahead.
- Get a bed for the study, so that I have somewhere to go and toss and turn when I can't sleep, without worrying about waking A up.
- Increase my fitness as much as I can. I'm going to do Bikram yoga until I start the treatment, so that hopefully I can go back to my Viniyoga class once I'm on the treatment and it will feel manageable
- Continue fasting on Wednesdays, and maybe extend it to Thursdays as well, to try to get my immune system running at full steam.
-Think about my diet, and look at iron rich foods I can introduce, to do whatever I can to give my red blood cells a boost.
-Work out a routine for my medication, work and exercise; and work through the pros and cons, maybe using SMART tools and Changing For Good, to drive home through my deepset laziness, that this will make me feel better throughout the treatment in the long run, however lousy it feels at the time.
-Get a Citalopram prescription.
-Have spoken to work.
Is there anything else I need to be doing? It would be good to improve procedures at work now to make it easier to get everything done when I'm ill. I can't think of anything else.
Anyway, if you have stumbled upon this, thank you for listening, and goodnight.
I had been very tense and anxious, for a few days before the appointment, I guess because I was nervous about the decision to be made. After the appointment I felt much lighter, knowing I was going to go for it, which makes me think I'm doing at least what I think is best.
I had been very uncertain about whether to go ahead with treatment now or wait for new treatments which don't require Interferon. My liver is in pretty good shape at the moment, level 1 scarring. But... even though it isn't very likely I do hope to be able to try for a baby in a few years time, and would like to try to clear the virus first.
My treatment will start in four to six weeks, depending on when they have space in the clinic. Or maybe a little later, knowing the hospital.
On the Friday after the decision I spent pretty much the whole day on the internet, trying to find out everything I could about triple therapy with Victrelis. I couldn't find many treatment diaries giving first hand experience, just http://48weekshcv.wordpress.com/, which describes the experience of Lynn, who was given Boceprevir during its clinical trial phase.
It was a relief to find http://hcvsupport.org/forum/index.php/board,3.0.html, the HCV support group. I'm very pleased to find somewhere I can ask how big a 'snack' is, when the time comes.
Lynn's blog, and what I found elsewhere on my marathon trawl has convinced me that I need to be determined to stay fit throughout my treatment. My memories of the combined treatment are that I was too tired to do anything, to walk up the hill to the shops, but it seems to me that the fitter you are the better you can bear the treatment, which maybe is why people find that it gets harder and harder as the weeks pass - you feel awful so you rest, then your fitness level drops which compounds your feeling awful.
Thing is I know enough of myself to know that discipline is not my strong point. If I feel rotten I don't go to the gym, on a normal day. So, how to get myself to a place where I go to the gym when I don't want to? Hmm. This is one of the reasons I'm writing this blog, to think out loud, write down why it's important, to try to motivate myself.
Things to do before my treatment starts in 4 weeks time:
- Clarify with the consultant whether I should go to my GP and get a Citalopram prescription, to get started on before my next hospital consultant. Done - I called the hospital today and was lucky enough to speak to my consultant, who said yes go ahead.
- Get a bed for the study, so that I have somewhere to go and toss and turn when I can't sleep, without worrying about waking A up.
- Increase my fitness as much as I can. I'm going to do Bikram yoga until I start the treatment, so that hopefully I can go back to my Viniyoga class once I'm on the treatment and it will feel manageable
- Continue fasting on Wednesdays, and maybe extend it to Thursdays as well, to try to get my immune system running at full steam.
-Think about my diet, and look at iron rich foods I can introduce, to do whatever I can to give my red blood cells a boost.
-Work out a routine for my medication, work and exercise; and work through the pros and cons, maybe using SMART tools and Changing For Good, to drive home through my deepset laziness, that this will make me feel better throughout the treatment in the long run, however lousy it feels at the time.
-Get a Citalopram prescription.
-Have spoken to work.
Is there anything else I need to be doing? It would be good to improve procedures at work now to make it easier to get everything done when I'm ill. I can't think of anything else.
Anyway, if you have stumbled upon this, thank you for listening, and goodnight.
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