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!

Heppy B-day!

I’ve never been in a fight. Ok, that’s not exactly true. I’ve been punched a couple of times but they don’t qualify as fights because I was either too confused or too restrained in order to respond. So, I feel I can say I’ve never been in a fight.

However, if I had ever been in a fight with 5 big, strong men who proceeded to beat the fear of life into my bones and knocked me out and then when waking up I realised how extensive the kicking was, I think I would’ve felt exactly how I felt when I woke up the day after my last post.

It seems that posting on this blog acts as a harbinger for future aches and my last post fulfilled its Delphic purpose wonderfully. I mentioned that I was still aching, being extremely tired and worrying about possibly being at the doors of a mood swing but then I candidly said that I hoped ‘my fears were unfounded’. Well, they weren’t unfounded, they were just misread.

The achiness of my body, the tiredness and the general feeling of ‘urgh’ have just turned the volume up and over the last few days [and even as I write this] I’ve been feeling like I have been hit by a big truck and this just seems to be a progression of the side effects I’ve been experiencing ever since I started my treatment. I’ve been quite lucky so far by avoiding the more horrible of the side effects but I’m starting to realise that the ones I’m actually experiencing are pretty tough as well. I don’t like complaining too much but, at the moment, I just want to say ‘ouch’!

Ok, I’ve already complained so let’s turn to positive things. Feeling crappy hasn’t stopped me from going to work, seeing family and the sort so I’m happy that the painful lethargy is not crippling the limited social life I’ve got at the moment.

My 26th birthday is on Friday [incidentally, it happens to be my partner's bday too so happy bday R... Love you] and, even though I’ve never been a ‘let’s-celebrate-my-birthday’ kind of person, I’m planning to make this one count because, after all, I’m a lucky man and I’m happy to add another year to my life.

So, here’s to a long and fruitful life and we’ll talk next week!

Peace

The Needle Has Landed!

I’ve been back from holiday for a whole, long week now. For those interested, it was amazing and it was great to have the opportunity to relax and not worry about anything whilst away. It was helpful to just enjoy a little break from everything and I felt a lot better for it.

I had to take my drugs on holiday with me and I was a bit concerned that trying to take a needle into the plane would be a bit of an ordeal. I had letters from my doctors confirming that I was undergoing treatment and that the needle’s purpose wasn’t malevolent in any shape or form. However, I didn’t have to worry about that at all as the bag went through check in without any problems and the needle even made the trip back home [as it needs to be disposed of in an appropriate manner] without any inconveniences whatsoever. So that was very good!

Now, back in the real world, I had my monthly appointment on Friday and it was, as it’s becoming the rule, a mix of good news and not-so-good news. The good news: My blood levels are all normal, my liver function is fluctuating but it’s still within reasonable levels under the circumstances, my body is reacting well to treatment and I now have to see the doctor in three months time [with a few blood tests along the way]. The bad news: As was expected, the interferon has not helped at all with my Hep B and it is now a distinct reality that at the end of this treatment [regardless of whether the interferon actually helps me rid myself of the Hep C virus], I will have to start yet another treatment for the Hep B. This treatment will be ‘very expensive’ apparently and I’ll have to apply for it on ‘compassionate grounds’ to see if I can get it subsidised by the NHS. So, as you can see, a mixture of good news and not-so-good news.

Anyway, I guess we’ll cross that bridge when we get there. In the meantime, I’m being very good with my current treatment and it seems to be working very well. The doctor is very happy with the progress and it all seems very positive overall.

On a personal level, I’m still as exhausted as I’ve been for the last three months and my muscles still ache all over but I’m still coping well with that. The people close to me have started to ask lately whether I’m ok [I’ve felt ok] so I’m hoping I’ve just been having a few days off and this is not the start of undesirable mood swings that I haven’t noticed. Hopefully that’s not it and I’ll be posting next week that my fears were unfounded.

Ok, I think I’ve taken enough of your time now. I’m signing off here but if you want to find out more, get in touch.

Peace!

Results are in!

11 injections in! That’s where I am at the moment! That means I’m kicking off week 11 of my treatment! Woo hoo… Look at me!

Ok, enough of that. Hehe…

You might notice I’m a bit more cheerful than usual. Why is that I hear you asking? Well, I found out at the end of last week that blood tests taken 7 weeks into my treatment showed that the viral load for the Hep C had more than halved in my system. That means that my liver is having to work half as hard as it normally would have to. In other words, the treatment that’s sucking the energy out of my body is also, thankfully, helping me to rid myself of Hepatitis C! In health terms, I’m very, very happy.

Having said that, and being a natural-born cynic, I’m taking the results with a pinch of salt. The good news: The treatment is working, I’ve got 37 weeks to go and, hopefully, at the end of it, I’ll be free from Hep C. I don’t know about you but I think that’s pretty good news. The flip side of that is that I’ve got a long way to go and my body is not fighting your salt-of-the-earth cold. I’ve already believed once I got rid of this so, understandably I hope, I’m taking the news with happiness but a fair share of trepidation.

Just for the record, I’ve tried writing this post a few times over the last week but it’s proven to be quite tricky. My heart is being overrun by conflicting feelings and it’s quite confusing being very happy and very concerned at the same time. I’m off to sunny Greece with my beautiful partner for a week so hopefully by the time I get back, my feelings and thoughts on this will be clearer.

In the meantime, let’s go all out and join the part of me that’s ecstatic and enjoying the good news. Woo hoo…

As for the update on my health status, my white blood cells levels have fallen a bit but nothing to worry about, I’ve put on a bit of weight and I’m still very tired but coping. All in all, a good week!

You know the drill, drop us a line if you want to know a bit more but don’t expect a prompt response because I’m on holiday!

See you all in a bit…

Story Of A Broken Toe

As many of you might have noticed already, it's been over four weeks since my last post. I promised when I started this blog that I would update it weekly and that, overall, I would take good care of it. However, I didn't take into account how exhausting my treatment would be when coupled with unforeseen complications [more on this in a bit] and the last few weeks have just proven to be a bit too much for me and I didn't feel like updating the blog at all. I even considered scrapping the whole thing a week ago when, after falling victim to an over-sensitised feeling of ennui, I felt that there really was no point in maintaining this blog since only a couple of people seemed to be really interested in it, noticing the unnatural lack of updating. Self-pity is not one of my favourite traits, hence that wasn't one of my proudest moments it must be said! Now, having remembered that this blog wasn't set up for the masses but for those people interested in knowing how this silly boy is doing, collecting useful info in a nice friendly way and for me to be able to chronicle this year of my life, I found my fingers itchy at work, desperate to write a new post for the blog.

So, I suppose I should start by explaining what gave rise to this period of over-the-top melancholy and like all good stories, it starts with a broken bone*! The day after my last post, on a rare mid-week night out, I broke a toe. It was a dramatic break too. Blood everywhere, toenails hanging by quite literally just a thread and the sort. The incident itself is a story that, for the purposes of this blog, is too long and not-wholly-relevant so it won't be included here, but you can read about it if you want to by clicking 'A Tale Of Toe Cities'.

So, after spending a good 3 hours in A & E ['Emergency Room' for those reading outside Britain] that night, feeling quite a lot of pain, stressing over blood spillages [see 'A Tale Of Toe Cities'] and getting home after 4am in the morning, I took stock of the situation and it wasn't good. I had to have a whole week of antibiotics [on top of my interferon treatment], limp all over the place [exerting even more effort on an already-exhausted body] and come to the realisation that, in spite of acting like nothing was happening in my life, I needed to be more careful with my health. It was a very tiring experience overall. I guess I'm only saying all this to try and trick you into liking me and overlook the fact that, through my own stupidity, I put my body through a lot of unnecessary strain.

I won't keep going on about broken toes anymore but instead I'll do what this blog is supposed to do and tell you how my Hep treatment is going. I'm still very tired but I've accepted that this might be the case for the next 40 weeks [Can you believe I've already gone through 8 weeks of treatment?] so I'm finding ways to just get used to it. I'm about to start going to the gym, playing football again and get on with my writing [i.e. Start writing!]. In short, just assimilate tiredness into my life and get on with it. Probably easier said than done but I guess we'll find out.

Apart from that and the bout of melancholy [already discussed at length! I promise I'll stop now] everything else is going fine. So, I'm pretty happy still and trying to stay as positive as possible.
Just to reiterate that I haven't forgotten about the blog, I will post a few interesting links I've come across over the last three weeks in the next few days.

And, finally, no matter what, I'll be posting next week without fail. So, welcome back and drop me a line if you want to!

*Disclaimer: I know of no great stories that start with broken bones!