Onwards...

I've now been on my new Hep C treatment for nearly a month. And it hasn't been easy.

I'm drained of energy, constantly tired. The nausea after my morning and evening pills dosages is only getting worse. Insomnia is slowly creeping back into my life. The bruises on my stomach growing ever darker. My beloved runs a thing of the past. Social visits being cancelled all over the place. Working days spent instead sat at home, feeling slightly sorry for myself. So, I won't lie to you, it's been hard.

Now that we've got that sorry business out of the way, on to the good stuff. My liver function tests results - usually hovering over the 150 mark over the last three years (anything over 40 is usually considered abnormal) - have dropped to 54. That's the best they've been in a decade! If nothing else, my poor liver's had a bit of a breather so that's good news.

I'm seeing my gastric nurse this Friday (19th July), and we'll be starting on the Boceprevir - the very reason why we're going through this all again. I understand it'll be quite hard for a couple of weeks at least, but the truth is we don't really know what's going to happen. This cocktail of drugs is fairly new - My very, very experienced and wonderful gastric nurse tells me I'm only the second patient with both Hep B and Hep C going through this treatment in her care ever. And the other poor sod is only a couple of weeks ahead of me, from the sound of it.

So, onwards we go into uncertain territory. It's been hard so far, and no doubt it's about to get harder. But I'm still hoping - hoping this is the start of a Hep C-free me.

I might not be sleeping, but no one said I couldn't still dream, right?

Peace,
E

And whilst you're here,  Word Hepatitis Day is coming up... Please, get tested!



If you can't wait to hear from me [!], 'Like' my Facebook page here, or follow me on Twitter here

New Beginnings...

One of my favourite writers once wrote that history has a knack of repeating itself, first as a tragedy and then as a farce. What the lovely bearded fellow forgot to add is that sometimes twice is not enough for history, and like a Sysyphus-deflating rock, history rolls heavily down the hill once again – no longer a tragedy, or even a farce, but now simply a monotonous expectation.

It’s been a while since I posted here. A mistake, really. Reading back through some of the older posts was very helpful in reminding me what undergoing treatment for Hep B and C was like, and it was nice knowing that people had come along for the trip whilst it lasted.

And it was a mistake because there have actually been loads of developments in my life. I’m a little older, perhaps a little wiser, married, and father to a wonderful boy, blessed with a loving family who has kept me going strong, in spite of the many setbacks.  

But perhaps the most important development in terms of this blog was the fact that I started treatment for my hep B about a year ago. I’ve been taking a daily dose of Tenofovir – a drug most commonly associated with HIV treatments – and the treatment seems to be doing the trick. My viral load for Hep B is at the lowest it has been for nearly two decades, which is great news. Tenofovir is not a cure, however, so I’ll have to keep taking the little blue pill every night for the next few years.

There are some side effects to Tenofovir, the one that’s been more prominent this year being the constant state of tiredness – also a common side effect to new parenthood, I grant you.

So, why the sudden blog update, I hear you ask. Well, my consultant has suggested I have another go at Hep C treatment too, and I must say it was difficult to say no. As always, if there is even a little chance of clearing these nasty bastards, I must take it with both hands.

I’ll be undergoing another whole year of treatment with Interferon – the same drug I’ve already failed twice on – and they will add a new one (Boceprevir) at Week 4, which will hopefully make a difference this time around.

So, here we are, Week 1 once again. I had my first injection on Friday, I’ve been taking six pills a day since, on top of the one Tenofovir. The familiar tiredness has set in. Nausea has been an unwelcome addition. A little bit of gloom overall, if I’m honest.

But, also, hope. They can’t take that away from us. So, here we go again. I’ll blog about this new stage of the journey regularly.

Peace.

Where's Wally?

'Most people who don't know you will think you're dead' said one of my best friends during a dinner party last weekend and although I felt it was a little dramatic, it did make me feel very guilty about the way I abandoned this blog so suddenly, leaving most people out there without any sort of closure as to my fate!

I hope no one is actually holding their breath for me but just in case, let me assure that everything is fine on my side.

As I mentioned on my last post , my treatment didn't work second time around either and I was advised by my doctors to stop it. I've seen the doctors since then and they've assured me my liver is coping well with the viruses and some new drugs are being trialled as we speak so hopefully in a couple of years I'll be able to try a new treatment. Until then I just need to take care of myself and allow life to go on.

And I have! Apart from the temporary numbness after the bad news, I haven't let this setback affect my life at all. I completed the marathon as promised [click here if you don't believe me!] and with your help managed to raise a grand total of £2328.97 for charity. I had a great summer and I'm looking forward to bigger and better things in my life.

Living with Hep doesn't have to be difficult and since Mr B and Mr C are sticking around for a while, it seems, I'm going to ensure that they affect my life as little as possible.I won't make any promises about the blog this time but I am keeping my eye out for helpful info that I can start indexing here again and I also have a few more ideas for the immediate future of this blog so look out for that.

In the meantime, if you miss me too much, follow me on twitter .

Stay safe and remember to get tested!

Still runnin'

'1000 visitors to Prometheus!' greeted me the message in my inbox this morning. In little over 8 months, writing posts about disease and drugs, with no viral campaign or celebrity endorsement and next-to-no respect for deadlines, here we are: a 1000 visits to this humble blog. A milestone of sorts and yet I couldn't help but feel guilty about the whole thing. It's been over a month and nearly 120 visits to the site since my last post and I feel that I've somehow been neglectful not only of this blog but the loyal readers who have been with me in one way or another since the start of this experience. I’d like to apologise for that and try to offer the following as a way of explanation.

I mentioned in my last post that I was waiting to hear from my doctor as the treatment didn't seem to be working for me. When I received the phone call, it was indeed the news I didn’t want to hear. The viral load in my body had gone back to the pre-treatment levels which effectively meant my treatment was just not working at all and I was adivised to comlo off the treatment straight away. Not the best piece of news as you can imagine! I found all of this out over the phone [much to the chagrin of my loved ones] and I haven’t seen the doctor since then. I have an appointment on Friday but regardless of anything they might say, I now know I’ll have to wait at least a couple of years for a stronger version of the treatment to come onto the market. In the meantime, we might try and see what we can do with the Hep B but I’ll find out a lot more on Friday and I’ll be sure to post. Promise!

I've been drug-free for over a month now and needless to say it has been a period of reflection and big changes. I'll be sure to share this with everyone on a future post.

On the marathon front, things are going well and perhaps one of the very few silver linings from this situation is that I can now train without having to cope with the side effects of Interferon. Mind you, the withdrawal effects were quite strong and it's only in the last few days that I’ve felt like I’ve gone back to being pretty much me pre-Interferon. Now I ache and I’m very tired but it’s all down to the running!

Before I leave you let me thank you again for helping me to get this far and even though we didn't get the result we wanted this time around, the battle continues and I don't give up easily!

See you next week.

Peace!

Hepatitis can fight back too, apparently...

I've been feeling really guilty. It's been far too long since my last post and some amazing things have happened since then. I announced my intention to run a marathon in that post, asking for people's support and the response has been amazing. It was overwhelming to see how supportive and just how brilliant people can be. It was beautiful. I had a well deserved 3-weeks break with nothing to do but sit at home, eating biscuits and watching bad television. Needless to say, my batteries were nicely recharged. I had a great Christmas and a very fun New Year's Eve. My training for the marathon is going alright. I've given up smoking. In short, a great load of good, positive things have happened in my life since my last post.

However, 2008 being the kind of year it was, left me with a little present very much running along the lines of the one I received right at the beginning of the year. My doctor informed me right before Christmas that the treatment seems to have stopped working [based on test results from 13 weeks into treatment], meaning my recovery has reached a plateau and there is a very real possibility now that the last 6 months have been fruitless and the doctors might suggest I stop the treatment as it would make no sense to keep forcing my body through such a demanding course of drugs.

So, this news bookended 2008 for me and resulted in the long period of silence unwillingly imposed on this blog. I've really struggled to commit words to paper and even now I'm struggling to flesh out this post. I had some new tests taken just before Christmas and I should hear back from the doctor next week. I felt it was the right time to update the blog, even if I didn’t feel much like writing. Hopefully, next week I’ll have some better news and a much better post for the blog.

In the meantime, thanks again to everyone who’s been so kind and supportive in the marathon push! Your help, thoughts and generous donations are very much appreciated.

Peace

Euclides Fights Back! [Part 1]

For the last few months I’ve had a weekly date every Friday with a very cold and piercing individual whom, truth be told, I really hate but whose weekly kiss upon my body is hopefully helping me to rid myself of the horrible viruses that run in my bloodstream. Whenever the needle breaks through my skin, I feel a little prickly sting that then turns into a dull itchy pain when the cold contents of the small syringe enter my body. And then, almost straight away, I feel when the drugs hit my system. My head goes a bit light, I feel my shoulders drop while I sink on whatever chair I happen to be sitting, I stare for a few seconds at whatever is in front of me and then I start to feel my whole body being drained of all the energy I might have had up to that moment. A quite unfortunate situation really because since my weekly dates started, ‘energy’ is something I haven’t really had for any period of time. After the first injection, my body has felt like its batteries had been taken out and it hasn’t recovered since. So, when on Fridays my energy is drained again, the drugs are simply taking the little reserves I’ve built up over the week, taking me back to square one, needing to start building my weekly energy for the days ahead.

Regrettably, this lack of energy has slowly but surely taken hold not only of my body but my life too. What started as a tired weekend [I have my injections on Friday nights so they affect my work as little as possible… the bills still have to be paid!] has turned into a daily struggle to remain upbeat, positive and to find the energy to carry on with my life as normally as I can, finding the energy the drugs have denied me in other unlikely sources. A good book, a nice cup of coffee, little personal projects here and there. But more importantly, I’ve found that energy in the love, patience and support of my wonderful partner, my amazing family, my dearest of friends and my understanding workplace who have never allowed my constant cancellations, my lethargic chats, my tendency to just crash on the sofa staring at anything to diminish the amount of energy they inject into my life every day. However, it’s hard sometimes not to allow the tiredness to just take hold and it’s very easy to slip into a vicious circle of tiredness and lethargy and if I cannot find ways to fight it, once it takes hold I might be stuck with it for the next 6 months [or maybe even the next 18]. So, I’ve talked a lot before about trying to fight this but have never taken decisive action. Well, that changes from now and the fight back starts here!

Euclides is running from Hepatitis

I don’t give up easily and I’ve never been one to run away from my troubles. In fact, I’ve never been a runner in any sense of the word, occasionally mocking the courageous winter joggers in Hampstead Heath whilst I slowly strolled in search of a good cappuccino. But I’m making an exception this time and I’m running from hepatitis, or rather, I’m racing it! I’ve decided that the best way to fight the constant state of drug-induced slumber my life has become is to run the Edinburgh Marathon on behalf of a charity. ‘Erm… how’s that the best way Euclides?’ I hear you ask. Well, here’s how.

Firstly, it is a way for me to start wrestling control of my life and my health away from my treatment. This isn’t a reckless, spur-of-the-moment decision and I’ve discussed it with my doctor. I’m aware it is going to be very hard to train up to 5 times a week whilst the interferon is working its magic on my body but the fact that my training will help me get fitter to deal with the drugs and the even healthier lifestyle I’ll have to adopt will increase the chances of my treatment working should hopefully offset the nastiness of very cold 6 AM runs in the months to come.

Secondly, and more importantly, there are two worthy causes that will benefit from my efforts. The first one is the issue of raising awareness of hepatitis in our society. When 1 in 12 of us is suffering from hepatitis and as a society we don’t seem to offer the levels of awareness needed to prevent and raise the standard of treatment of such an ailment, it is important for individuals to make as much noise as possible to draw attention to the issue. That was initially the purpose of this blog but somehow along the way, I never actually came out of the Hep closet. I opened its doors wide open for anyone who would want to make the effort and take a peek but I truly remained perched on the floor of the closet. Not anymore. By taking this decision, I’m effectively coming out of the closet and because I need to raise as much money as possible, I will have to make all the noise I possibly can, hopefully raising awareness about these illnesses along the way.

The other cause is the charity that will benefit from the funds I raise during my training. As I mentioned above, the situation I’m going through at the moment would have been unimaginably worse without the love, support and encouragement of my close network of loved ones who have been there willing me on in one way or another. However, there are millions of people around the planet who are going through situations many times worse than mine and who lack the help they so badly need to continue. Amnesty International is one of the few charities whose unflinching commitment to provide a word of hope for those people while at the same trying to raise awareness of these issues worldwide has never wavered. Their work is very important, especially right now, and it’s essential that we try and help them whichever way we can. That’s why I’ve decided to do my bit.

Over the next few months I’ll talk a bit more about these things but this is a very long post as it is and I think I’ve bored you enough for one week. Incidentally, if you’ve just been sent here by a link in an email/forum/fundraising page, please stick around and have a look at the blog, there’s a lot more about me, hepatitis and other things. And if you’re one of the loyal readers of the blog, thanks for helping me get this far!

Last [but most certainly not least!] please go to my fundraising page here to be effectively mugged by me!

Thanks for reading and see you next week.

No more Mr Reluctant-Blogger!

Hello everyone…

I’ll put my hands up from the start and admit that it’s been a long time since my last post. I wish I could say that I’ve had too many things happening [and I have] but the sad truth is that I’ve just been struggling to commit words to paper lately. Lethargy has quite settled in over the last month and I feel like I’m living inside a little bubble that consists of a perfect balance of 'waking up-getting angry on the tube-working-getting angry on the tube-crashing on my sofa-going to sleep'.

Well, I’m tired of that and I’ve decided to put a stop to it. I’ve made some major decisions [one of which you’ll hear about a lot in the next few blogs!] and I’m taking control of my life again. The treatment has been setting the rules of the game for a while but I’m not playing ball anymore. So, once again, I promise to keep the blog updated in the weeks to come and thanks to those who keep coming back to the blog even though there’s been nothing new to read lately.

The monthly update on my health is not that different from the last few blogs: Tired, tired and tired. Getting out of bed every morning is a big battle and that’s a battle I only win when I get back into bed at night. Apart from that, I think I’ve been coping alright with everything that’s been happening and if that changes, you’ll all hear about it!

I’m working on the big news that will come probably in the next post and please come back for it because, rest assured, I’m going to need all the help and support that you can give me!

In the meantime, please check this out and show your support. Every little helps! Many thanks…

See you next week!