Week 43: Saturday
A few days ago, ‘tired but content’. As the week has gone on I have found it difficult being more and more tired. I also noticed an increasing frequency of indigestion after meals, occasionally a slight feeling of nausea. I haven’t experienced either of these previously during treatment. And bouts of feeling ‘swimmy’ in the head and occasional dizziness or vertigo.
I spoke to MyNurse – haven’t called for support for ages now, wanting to just check this out and ask about my last blood results for my 22 Aug visit. Reassuringly she pointed out that the last few weeks of treatment often do bring side-effects again, and that I will get tired. My Haemoglobin level has dropped to 10.1 but my ALT remains within normal range at 37. I notice from previous results in mid-July my Haemoglobin has dropped from 11.9. So I guess that is why I am noticing the difference in my energy levels at the moment.
MyNurse recommended taking lots of iron in foods, mentioning spinach and chocolate. So I have promptly taken to eating Green & Black’s organic bittersweet 70% chocolate – for medicinal purposes of course. I also felt obliged to stock up well when I discovered a 3 for the price of 2 offer on at my local supermarket. And allowing myself to be ‘slowed down’. Well, sometimes I have no choice - but I have taken to warning everyone at work this is how it is at the moment (instead of feeling I have to push myself to be 100%). I also feel fortunate that counselling is a relatively ’slow-paced’ activity so I can keep up, especially since it is familiar territory for me whereas it’s usually new for clients.
I am meeting with MyNurse and my consultant, Graham Foster next week so no doubt we will touch on my current health issues again. I have asked to see Graham because some weeks ago I raised the possibility of extending my treatment for 12 or 24 more weeks. My body and my heart are telling me I am coming to the end of what I think I can cope with in terms of living on treatment – but I do want to consider my consultant’s medical advice about the benefits and costs of going on. I am still mindful of the information that the first shot at treatment is the best shot and that my age is a factor not in my favour. So I want to listen to my head on this issue, as well as my heart and body, before finally deciding when I want to end this treatment.
In my therapy session this week, I found my anxieties about ending this 48 weeks coming to the surface. Since my Week 12 blood tests results I have enjoyed some sense of being ‘clear’ of this virus, of living without it during this treatment period. As Week 48 looms up I realise that this sense of security, tenuous as it is, will stop when I finish taking the meds. Will I remain ‘clear’ of the virus without the interferon and ribavirin floating around inside me? That is the anxiety, of course, and one I will have to live with over the next few months.
I also realised how hard it feels to even acknowledge the possibility that this treatment will not be successful. Whenever I read about people doing a second or third course of treatment, or hear about people like Richskeen living with rapid, acute HepC cirrhosis, I am aware I find it hard to entertain the possibility that this could be me in future. As someone said recently, no one goes into battle thinking they are going to lose, and then wins. I find it hard to entertain the possibility of an unsuccessful outcome – because it isn’t the “positive thinking” I feel I must have to see me through this treatment. I find it hard to consider even the possibility of losing the battle at this point in time. Yet it is a possibility that I should consider - there are no certainties. It’s tough one. It does highlight for me how hard and determinedly I have been battling this virus – doggedly, without considering any possibility of ‘defeat’.
So the ending of treatment brings more change – and transitions to a different stage of living with HepC, and hopefully without HepC. I notice that some people on 24 weeks seem to have a simpler view – “got through the treatment and that’s it, done, now just wait for the results”. I am thinking that the 48 week ‘long haul’ brings a different perspective and perhaps different issues.
September 4th, 2005 at 12:17 am
Yes, the 48 weeks is a massive commitment. It is also a strain on the body so the further you get on in the course the more likely you are to feel fatigued and worn down.
I have reacted to all my tests, 12 week and 24 week with chaotic emotions. I can`t see the end of treatment experience being any different.
Unlike you I forsee my problem as being tempted to give up a little earlier -not prolong the treatment. I can see myself thinking “Does it really matter whether I have 48 shots or just 46. Can I cut out the riba and give myself a break”?
However, referring to your last post, like you I also look better. The cutting out of wine as an evening ritual and being careful with my diet (when not shovelling down ice cream and biscuits) has redistributed my weight and I am told I look great - better than I have for years.
I will never return to that lifestyle no matter what happens Re: virus. And I will certainly read up on diet and supplements that are liver friendly so there must be an all round improvement.
If the liver is being looked after a bit more and not having to spend its time eliminating extra toxins then surely it can keep everything in order better.
I believe we have a bigger margin for clearing the virus than the official 50 - 65%. More like 75 - 80%.
A tough time for you, you are in my thoughts.
Paul.
September 4th, 2005 at 11:27 am
Hi Ron
I know I keep saying this, but it is always interesting to hear your thoughts, so similar to my own at similar times in treatment, and I so understand what you are saying. There’s something about being at this point in treatment that is particularly difficult - especially as you are contemplating an extension. I agree that there are both differences and similarities between the 24 and 48 week stretches. I did 24 weeks of interferon alone 10 years ago, and it was bad enough for me to vow I would never do it again (hence the 10 years later thing!). It certainly was a different psychological experience to this long haul. Just knowing you’ve got a huge amount of time ahead of you is incredibly daunting. I’ve found I’ve had to really just try and settle right into it and live the experience, rather than gritting my teeth and getting through it. 6 months is a long enough time, and a year even longer to be taking this stuff and feeling this way - mind, body and soul.
Another thing - the anaemia will really really be making a difference to how you feel (physically and emotionally) so don’t underestimate it. 10.1 is pretty blummin low especially for a man and it seems to make a difference not only to anaemia symptoms but it also increases side effects A LOT! I have felt so much more normal since I got my Hb back up, it was a huge relief. On a practical note, if indeed you are iron-deficient there are iron tonics on sale at whole food shops that give you 14mg of iron a day (100%rda). I found the best, cheapest and most palatable was Feroglobin. It’s natural iron from plant extracts too and has b vitamins in as well. Holland and Barrett also sell their own brand. Worth checking out. Also, for the haemolytic anaemia - visualisation really worked for me whilst I was disciplined enough to do it at least twice a day! My Hb went up .6 when I meditated and visualised protecting my red blood cells against attack. Seriously, it was a very marked response. Bristol cancer centre have got really good results on trials on this so may be worth a go within your usual meditation practice? I’ve heard Spain is a really good place to do such things…
Ron, you have done brilliantly. Your tenacity and optimism has been inspiring, and your website has I think positively revolutionised communication and support among HepC sufferers. I would have been seriously lost without this contact, so - thank you.
Have a good week, take care
Lu
September 4th, 2005 at 11:38 am
Ron,
Does your treatment centre use epoetin? I know you are fairly late in the course now, but it might be worth looking at, particularly if 72 weeks is a possibility.
Martin
September 4th, 2005 at 3:00 pm
Hi Ron,
I believe there are definitely differences in the 24 versus 48 week regime. When faced with decisions regarding treatment, one of the fundamental influences for me, with little liver damage, was knowing that it was for only 24 weeks, with a high chance of viral response given my genotype 3 status. My attitude going in and continuing through treatment was one of “come on, only “x” weeks left, I can do it” - possible when facing six months, more difficult to sustain when looking at a full year. Had I been type 1, looking at a year and the odds and minimal damage, I suspect I may have waited to treat, in hopes something better might appear prior to developing significant hepatic damage. Obviously, as liver damage progresses, this becomes less of a choice and more of a necessity.
All of you who’ve committed to the 48 week (and potentially longer) treatment regime have my total respect. I can’t imagine being on those drugs for that long. My reference points are limited. I have only had a taste of what you’re going through and it was most unpleasant.
There are the positive things: review of our lives, appreciation of our worlds, learning to slow down, prioritising, development of unbelievable patience, that come out of this and all chronic disease/treatment states. Focusing on those positives helped sustain me for the comparatively short 6 months that I experienced. These things are real. I hope that they will buoy you for the end of your treatment.
Sue
September 4th, 2005 at 5:29 pm
Ron:
I’m getting ready to do Week 35’s shot today. I’ve long been aware that any side-effects can raise their presence at any time. I’ve also been aware that I could battle my way through this treatment and have the virus re-emerge. I just push it back; those things are outside of my control.
In the process of exploring the cause of the edema and cellulitis, I was told that in rare situations HCV can re-emerge during treatment. I have to admit, the fear rose within me.
Not sure I will ever be totally free again … and that, too, takes some getting used to.
Grace and peace …
September 4th, 2005 at 7:16 pm
Hi Ron, regarding your bouts of indigestion. You may already be aware of the following: Could be down to the fact that the toxins in the Tx destroys so much of the (good) bacterial flora in the gut, pathing the way for all the bad flora to flourish. One needs to replemish the gut with acidophilus, also to be found in live natural yogurt.
I only recently discovered the website with all the blogs, it’s a pity that I came to them after my 42nd week on Tx, as I’ve felt so isolatated over the past 10 months, of which has been an absolute living hell.
Mostly due to my living conditions, as an artist I live in a converted factory floor in a very rough neighbourhood of east London, sandwiched between noisy neighbours. July was the crealist of all months, within a space of a week. I seriously gashhed my finger, which completely put me out of any remaining action left in my life, followered by being dumped by my girlfriend of 3 years, then I got burgled whilst sleeping, the thief helping himself to all my un-insured video equiptment needed for my art practice, next my flatmate moved out due to the burglary, leaving me with sole responsibility for the high rent. Next day London blew-up.
As they say shit happens. I’ve managed to pull through as I have only 4 weeks remaining, phew looking forward so much to enjoying the new life ahead, and feeling & looking well again, as the meds took a heavy toll on my physical & mental being. The brain fog, fogged-out any notion of being creative. Aslo look forward to having hair on my body again as I’m bald as a coot from head to toe, lost 7 kilos and skin is covered in legions. Despite all that somehow my soul has given me the gift of still being able to occassionally laugh at my disposition.
Well I wish you and everbody else cursed with this damn virus, much success post Tx, and that you have a tranquil time in Spain.
I shall be entertaining myself with the possibility of our gents in white winning back the urn.
Best regards
Rick.
September 6th, 2005 at 7:50 pm
Hi Paul, Lu, Martin, Sue, Buzz and Rick
Thank you all for the supportive comments and feedback - it is so nice to get some positive feedback just now.
Ron
September 7th, 2005 at 12:45 pm
Hi Ron,
I have just been catching up on the blogs after 2 weeks away. This last few weeks of treatment can be awful but the end does arrive. For me it was a curious mixture of relief and anxiety about what would happen to the virus without the protection of the drugs.
The plan of going away to Spain sounds good, hopefully the worst of the heat should dying down.
It will be interesting to hear the outcome of whether you will continue your treatment beyond the 48 week standard length.
Best wishes
Andy