Bah, Humbug

So I had my (somewhat brief) meeting with the liver specialist. Was a little annoyed he had not seen my latest scans - so what were his current decisions based on ? - but was partially to blame as I had been advised to bring the copy I had along with me, and had forgotten to do so.

In any case, he said that as I was responding to the Chemotherapy, I should continue with it for a little longer to ensure the required surgery was as minimal and risk-free as possible, advising me to continue for SIX cycles. I had been hoping it was only to be four, as these last two cycles will fall across the Christmas holidays and my planned snowboarding weekend in January, all the way up to the 1st Feb - which means I'll get a nice present this year for my birthday anyway, as I would then come of Chemo for February in preparation for surgery in March.

No date was set in stone for the surgery though - More CT / MRI scans after the 6th cycle would determine what happened next. There is a small outside chance that the chemo might "clean up" the liver all on it's own, but this is quite rare.

In truth, right now, I'm gutted. I was looking forward to a "Chemo free Christmas", esp. as each cycle gets harder. I had put these dates and plans down as a mental crutch - waypoints to help me get through the long journey ahead, and in 10 mins with very little information provided, I've had it all messed around and shifted with what seemed to be a fairly uninformed decision. Probably not the wrong decision, and already I am mapping out what this new news means and finding solace with what it might offer : cheeky snowboard week in February anyone ? Might also be up for a mini-birthday celebartion now as well. And having my folks look after me over xmas week when I am struggling with the nastier part of it is surely not a bad thing.

All of which reminds me it's injection day on Monday. &^%k. With these extra cycles now planned, am I once again going to persue getting a "long line" or "port" fitted, that will allow the drugs to be adminsitered straight into my central blood stream, not via my poor arms. This should remove the pain in my arms which is one of the very worse side effects, after maybe the vulnerability to cold.

Overall : Bah, humbug.

Full of chemicals

Still battling through first week of cycle three. It's not been pleasant - my arm still hurts, although somewhat less than Tuesday, but the drugs are pushing me on edge as always. With the addition of the Oxytetracyclene (to reduce the acne side-effect of Cetuximab - which it is finally starting to do) I am on about 16 pills a day, most of which get my system pretty wired. And with a little nausea I feel just like throwing them all up :(

Mimi took this week off and has been taking care of me - perhaps this is why the blog is less "look at me coping" and more "look at me being pissed off with things" this week. I've had less need to soldier on and keep my life going, and have been allowed to just flake out all week, knowing I'll still be fed, bought drinks and generally looked after. I miss coping, it felt good, but equally I guess I need an off-week, some time to just throw up my hands and say this is hard work and I'll be glad when it's all over and until then, things are hard.

Thanks for the offers of support this week - I've generally just kept myself to myself and spent most of my time with Mimi. Maybe next cycle I can call you all back ! It's hard to invite people over when you know you are just going to be rubbish, and probably not up to much chat. But the whole "waiting for tomorrow" thing is not a good attitude when tomorrow is still quite a few months away.

Every day of each cycle gets a little better - my touchstone and mantra now. Today I pottered around Camden a little, saw a movie and enjoyed a tasty burger dinner. Tomorrow I might manage a little early xmas shopping in Angel. Life still potters on around the crappyness, and looking forward to at quite a few decent days before the next cycle has to begin.

Cycle three start here

Fine - so it's cycle three.

Went to the clinic yesterday, go the Oxaliplatin in my arm - the second dose that has gone into the left arm. And f**k me it hurts - not just the usual deep pain in the vein, but most of the arm has gone numb and tingles, like a permanent pins and needles in the muscles. Really not a happy camper at all - had lots of trouble sleeping and pain-killers don't really do much.

Might need to discuss other ways of getting this horrid drug going forward - one option involves a line in your arm with runs a tube up to the heart - which means no localised pain in the arm, but does mean I get a cannula sticking out my arm for the treatment duration which might be even more depressing. Or a surgical operation can put in a central line in my chest - which sounds like the least painful option, except for the whole "going for surgery" part.

For now, everything just feels like hard work and I just want to lie down and wait for it to go away. But that's going to take days, so guess I need to fight through that, get some food, take all my daily drugs and keep up with life. Overall - Meh.

Second cycle - all in all, I've just been hit by every brick in the wall

Well, 6 days into the new cycle, and I'm only really just finding the time and energy to blog about it. It's been a bit of a "ton of bricks" week - have been feeling really tired and low on energy - as well as combating the nausea and cold sensitive arm pain that comes with the first half of each cycle.

Fortunately, I did see this coming somewhat, and had arranged with work to NOT come in for the main chemo week. This left me free to rest in the house, having plenty to time to sort out my various pills and lotions to combat the side effects, and mainly to rest. Physical execution is one of the things that heightens the nausea, and being able to climb under the duvet when the proverbial ton of bricks smashes you around the head is a godsend.

This week has been harder than last cycle - perhaps I am feeling more dread and less curiosity going into it, knowing what to expect this time. Also the Monday itself was particularly hard work. I met my parents in town first of all, which was very nice, and they came to the clinic with me. I was due to start on a new drug called Cetuximab which is an antibody drug that helps block potential new cancer cells, as well as potentially helping the main chemotherapy drugs working. But this needed to be administered slowly for this first time, and they needed to check my blood first to be sure I would not react to it. All in all, this took about 2 hours to prepare for and another 2 hours to administer - after which I then had to go through my 2 hours of dreaded Oxalyplatin as well :(

I went in at 1pm, and didn't leave until just before 8pm, spending the last 2 hours in a fairly empty clinic feeling pretty sorry for myself; the Oxalyplatin felt cold, and I wrapped my jumper around my arm, but still it felt icy and painful. Outside, I realised I hadn't bought warm enough clothing, and held my arm to try and keep it as warm as possible whislt travelling home. Whilst the pain subsides after about 7 days, and is only really present when my arm gets a little cold or I use it in a certain way, I can still feel it's effects all the way through 3 weeks. Hence this Monday's injection went in the other arm - suspect we'll be swapping everytime.

As for which arm gets the Cetuximab in future, I don't know - this drug comes on a TWO weekly cycle, so I'll be heading back to the clinic a week from now for Cetux, two weeks for Oxy, three weeks for Cetux then in five weeks from now - both again. All in all, the 6 remaining trips to the clinic have become more like 12 more, which is depressing. That said, the Cetux infusions are probably not going to be as bad - they should only last around 1 hour in future, and the side effects are nowhere near as bad as Oxalyplatin so far. It has caused my face to redden, with a few spots starting to appear - I am on a monster load of Oxytetracyclene to try and stop me impersonating a 16-year old acne faced kid (again). It has also caused my eyelashes to grow, which was long overdue comic relief to this whole process !

Last cycle was probably a bit too "ah, it's fine", and might of given the impression that I'm going to soldier through this without anyone really noticing. The truth is, I am going to soldier through this, but it's going to get hard at times, and it's going to be a while until it's over. And I'm going to be a bit of a pain, demand extra attention, time and help where people can offer it, and probably keep talking about my horrid drugs, waving pill boxes in the air in anger and occasionally showing off my cool (and still very present) belly scar. And I thank everyone who listens, helps and has time for that, as it all helps me just do what I need to do, which is just keep going through this one day at a time. The hardest week of cycle #2 is over - in fact apart from the injection days, every day does get a bit easier than the last !

Next big date is 20th November, when I get some more scans done, and we see what the effect of all these drugs has been. Then we can start talking about how long the chemo will go on for and potential surgery options in the new year. Until then, I'll just keep taking the pills !

The Iceman Cameth

Frost made it's unwelcome appearance this morning. I should have known - squirrels were all in hiding, lucky beggars, and the icy blasts of wind have been trying to assail me as I desperately cling to my cycle to work exercise plan. As I left the flat this morning, the
first thing I noticed was that it's no longer cycle shorts weather and the wind was freezing me from the legs up. B*stard ! God
only knows how the rest of my body survived - motion battling the torment of winter's breath!

Still, must battle some of the xmas dinner excesses. And it made for a good counterpoint to my sweetie's poetic take on it all as she undoubtedly shuffled along in 4+ layers to the bus stop. Smart lass :)

Sunshine soon - Australia beckons. One day sooner then expected too - glad I found out yesterday that my flight was Friday night and not Saturday night as assumed for the last few weeks !!! Best get packing...

Mo house in the middle of Mo street

New house has been a source of stress - hot water, plumbing, boiler, washing machine, broadband internet, dishwasher, windows, window blinds, TV aerial and shower head have been broken, busted or sub-optimal. About half of them are fixed now, but the response of our agents has felt slow and painful.

In better news, my Mo is growing well. Check out the fancyness on http://www.movember.com/uk/popups/mologs/?id=119515. Did just notice one side is around 1cm longer than the other today though.... whoops. Guess I'm stuck with that for the weekend, as tonight we Jet off to Amsterdam for a weekend away from house troubles and to meet some old travelling friends.

Suddenly, from nowhere... an update !

Ok, three people commented on the lack of posts here - which is a lot in the micro-world of blogging. Besides, one of them was my mother, so what kind of son would I be to ignore my own mother ;)

I am assisted with getting today's blog going with the handy firefox plugin ScribeFire, which offers you a little pop-up writing panel, which allows you to quickly start typing when the mood strikes, as well as easily adding links to the page you are looking at. Recommended to all firefox bloggers out there... yes, both of you :) - or maybe not - I just finished this blog post, clicked the wrong thing, and lost everything without a warning message. So it's a power tool without a safety catch :(

Today's post will be sidestepping my #1 project of weight-loss with a simple "click the Traineo link" comment. Things are going pretty well, I'm feeling healthy, and have gym sessions, cycling to work and now an occasional swim at weekends going for me. I have also signed up for the BUPA London 10,000 run next May, which is the furthest I have ever ran (and then that was almost 6-7 years ago !)

Moving on to more important housing news. Mimi has moved in with me, and along with Jon and his girlfriend we are cosily filling our 2-bed / 1-bath house. Not TOO cosy yet, although occasional morning waits for bathrooms and tripping over drying suggests that 1 month is the longest we can sustain this these days ! At the end of this month, Mimi and I move onto out new rental place in Barnsbury (which is located here). It's a basement flat with a large bedroom, kind of modern interior, good storage space and a large shared garden at the back. There is also a large park space infront of the house, which might be fun next summer. The garden is shared with the house above, which I am led to believe has a lady occupying it who is often away and quite friendly, so that sounds like things should get on fine. We have men and large vans hired for the move, otherwise it would be just me lifting the heavy things, which wouldn't be great, not with my back...

Yep, more back problems for me. Nothing major, just a slight stoop which was quickly "popped" out a large and brutal Aussie Physiotherapist. It has caused me a bit of neck pain, which became aggrivated at a recent trip to "the electric ballroom" rock / metal club in Camden. I probably didn't need to be rocking out TO THE MAX, but when in rome... Anyway, it's all on the mend now, and I'm sitting much straighter at work, the threat of a post-rugby victory trip back to the defeated antipodean physio filling me with dread. All that neck twisting, if done a little too hard, might... <shudder>

Well, I had some more here (before losing it) about writing (still ticking along a little), coding (not ticking along at all) and finaces (£240 mystery transaction with Tesco being disputed - people, check your bank statements every 2 months, it can pay off !) but they will have to remain part of my signing off paragraph for now. Apologies for the break from blogging, hopefully I'll have some more news closer to the BIG housemove. And once Royal mail stop sitting about drinking tea, they might deliver my camera from the repair shop so I can get pictures too !

My name is Ben

My name is Ben, I am 30 years old and I live in London near Tower Bridge and work for UBS investment bank in the IT section. I take these facts pretty much for granted, although a 20 year old me would of been fascinated to hear them.

Today I am sick. Which means in between the napping, I have a day off. Not a "day off" like the weekend where I can go out and do stuff, but a day out of the often fast moving stream of life. Indeed the weekends, whilst fun and fulfilling, are rarely "days off" nowadays.

I often wonder why I am doing the things I do. I don't recall choosing them. Well, maybe I chose between X and Y or this and that, but I never sat down and said to myself - gosh, it's a big world of stuff, what would you like to do in it ? I rarely picked holiday destinations, often led by convention or friends ideas. My set of job interviews were somewhat dictated by the pushiest head hunters.

I guess what I feeling today is I don't spend enough, or any, time on these questions. It's not like my lack of decisiveness has led me into a corner - indeed, most of my choices were based on "which life direction leaves me with the greatest number of choices still open". But this thinking may of prevented me from following a hidden passion or interest I really hadn't considered for myself. And later in life, where commitments are more prevalent such as house buying, career progression and settling down, decisions can be made harder by this attitude of keeping options open.

My name is Ben and I am 30 years old. My options are open. It's time for me to start thinking about using them, rather than simply keeping them open. I currently live in London, currently near Tower Bridge and current work for UBS investment bank. All these could or could not change; but they can if I want and so can I, as I choose to, when I choose to. And realising this should not be scary, but totally awesome :)

Mad cults and the Englishman

Given my usual boredom with much of TV today, I was surprised to find something on tonight that made my blood boil. It was the 30 minute Panorama episode on Scientology, which attempts to offer an insight into this "secretive" religion, but instead can only showcase summaries of interviews that have been withdrawn due to legal pressure and hostile verbal assaults from leading figures of the cult. This culminated after seven days with John Sweeney losing his temper and shouting at the interviewer, arming the church for a publicity campaign against the show. By airing this clip on YouTube, I think they underestimated the effect of there media campaign, which instead created more interest for a show exposing them as a creepy and sinister cult which destroys and threatens lives.

The show can be viewed on-line now here and there is also a BBC news article about the show and the shouting incident.

Alongside the footage shown in the show of some scary Scientology practices, there is also a large amount of effort going into there on-line spin campaign to discredit the reporter. For instance, compare the above you tube clip, which accepts comments without moderation and has been rated highly, with another posting of the clip which moderates all comments and has therefore been voted quite low by general users of the internet. At least the population of the internet has been hardened by advertisers efforts in viral marketing already, and can see through this poor attempt by the CoS to discredit the work of John Sweeney and the BBC.

Below is a copy of a comment I sent the BBC Panorama team. Given the strength of my reaction to this show, I thought it would be good to share these comments with any interested audience.

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"After the recent showing of the Panorama special on Scientology, I found myself outraged and annoyed. Not at the presentation by John Sweeney which was an impressive attempt to gain a measured impression of Scientology, but by the verbal diarrhoea offered by the top member of the church in place of any discussion.

Praise to the BBC for managing to attempt to show all sides of this organisation both good and bad in the face of such hostility to any form of dialogue. And whilst it was disappointing that the verbal assaults of Tommy Davis finally broke down John's professional front, it was incredible that he had endured the intimidation and abuse for so long with such recourse.

Given this is a cult who appear to be able to break down people's minds within days of first contact with them, credit must go to John for his patient attempts to have what could be regarded as an effective interview for this documentary, and it was greatly disappointing he could not manage to achieve the cooperation from the senior members of this church to accomplish this.

I am now much more concerned about the spread of Scientology into the UK, and appreciate the BBC's report on this organisation and furthermore would value more programming on aspects of it's work and activity.

My thanks to Panorama and John Sweeney."

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Time to calm down and get some sleep - it's times like this that a classic episode of South Park can ease a troubled mind :)