Wednesday, 31 March 2010

facing the shit

OK, after my last trip to the Chemo Clinic (that resulted in nothing happening to me at all), my nausea went into overdrive, lasted all day and made me feel horrendous. You can imagine that I wasn't really looking forward to going back there today for a simple blood test and a clean up of the PICC line ... I'd convinced myself that stepping foot near that place was now enough to send me into a merry-go-round-at-sea-after-a-dodgy-curry type state.

I arrived, I walked through the doors - took the first hit of warm air that fills that place and gakked it down, face curling into a ball. Count to 3 ... 3,2,1 ... no nausea.

How odd. I had to wait the best part of an hour to been seen, then had about 30 mins of faffing - taking blood, cleaning the PICC line, you know, faffing ... but no nausea.

So I just don't get it ... clearly my brain knows the difference between 'about to be poisoned' and 'not about to be poisoned'.

The proof, I guess, will come tomorrow.

Tomorrow I will be poisoned.


I went to see my consultant after the above. She is in a different part of the hospital to the chemo unit.

We had a chat about a couple of things - the anticipatory nausea, the new Lorazepam, my impending codeine addition but the real reason I was there was so we could discuss my spleen theory - that being, that the spleen is not getting smaller and we are somewhat pissing into the wind trying to reduce it. I rephrased that last statement for her, because she's a bit posh, like.

I got half-naked, laid down on the couch and she had a feel of Mr.Spleenerooney whilst measuring him with a tape and was in agreement - it hasn't reduced in size.

A C.T. scan appointment is going to be made, so we can see for sure and my consultant is going to discuss my case with her peer group of Very Clever People, but she all but told me that her original hunch was - and still remains - that the spleen will have to be removed.

There's no point jumping the gun about that now - but that's how it's looking at the moment.

I am due for Chemo Session 3b tomorrow (they go 1a,1b,2a,2b,3a...) somewhat stupidly, I wrote in a previous blog some time ago that I was on 4a or something ... I miscalculated ... I've actually only had FIVE treatments so far. It seems like this has been going on for ages now, and I've only completed 5 treatments - Christ.

Well, number 6 (or 3b) is definitely on .. my white cell count is back up. So bang goes a nice 4 day weekend. No Easter break for me. Jesus hates me, as I suspected anyway. It's because I use his name in vain (see above paragraph).

Tonight I start back on the Lorazepam - half a pill at night, half in the morning - enough to whack me out for the impending poison-fest I must face. Lorazepam nice, chemo evil. It's a bit like smoking a nice relaxing spliff and being forced to watch a JLS concert.

I'm running out of words to describe how I feel about having treatment now. You try to remain as optimistic as you possibly can - hopeful that this time it might not be so bad.

But, let's face it, it's always shit. It's chemo. Chemo is shit and cancer is shit.

But sometimes in life, I guess you just gotta stand up, take a deep breath and deal with the shit.

And here endeth the blog.

Friday, 26 March 2010

nothing happened: conclusion

... Quick mobile update to follow from yesterdays drama piece.

I stayed up from 8:30pm to 12:15am and felt sick all the time. I went back to bed and slept OK, but had nightsweats and amazingly bizarre dreams.

As most days now, I wake aching as I've realise I've got a slight codeine addiction again, so a mild dose of that and I should be ready to return to work.

The phantom sickness has gone mostly. I'm sure it will return when people start talking to me about it.

Hence this, so they don't.

But some good news just in. DV247 (music shop) are couriering my long overdue Access Virus Ti2 Keyboard to my house tomorrow, so the weekend is definitely looking up.

Onwards ...

Sent from my BlackBerry® 9700 wireless device

Thursday, 25 March 2010

tramatic day: nothing happened

I've just about had the worst day I've had for a very long time. And nothing happened.

I turned up for chemo. The moment I walk into the unit, I feel sick. Really sick. I run to the toilets and they are occupied, so I run outside and start ... crying.

I haven't done much crying since all this happened. I used to cry a lot, but for some reason, I don't really cry about cancer. I cry about chemo though.

A nurse comes out and does the stroking the arm thing, encouraging me to let it out. Which I do. This is now officially the most amount I have cried about my situation. The timing is not idea.

I return to the unit. The sickness is stronger. Officially, it's called 'anticipatory nausea' and officially it is fucking nuts. My whole body is as sick as if I've had chemo. I need to keep a sick bowl by my bed as the nurse starts to take my blood from my PICC line.

I now have a wait - regular readers will know that my white blood cells are useless at regenerating themselves in 2 week and invariably I get sent home. Having low white cells is known as being neutrophenic. My blood is sent 'upstairs' for testing - the results take about 90 mins to come back and determine if I am 'well' enough to have chemo.

As I wait there, I am feel rougher and rougher. As you can see from my mobile rant earlier, the environment doesn't help. Sick. Sick. Sick.

I see another patient who started having treatment after me and is on his last treament today. He has had the same 'ABVD' drug treatment. Although he displayed little of my symptons at first, his experience of anticipatory nausea is starting to echo mine. He talks of the how looking at the blue NHS lunch boxes makes him sick and how each treatment is worse. Mercifully for him, his treatment has been relatively short and today should be the last. It would appear I'm walking a much longer road than him. I wish him well and hope, for his sake, I never see him again.

After an hour or so, I'm told the news. I am neutrophenic again and am being sent home. Another 5k of NHS chemo drugs to be poured down the plughole. That stuff doesn't keep. They sensibly realise that from now on, I'm to have my blood test the day before, so the drugs will only be ordered if I am able to take them. I reckon I've been responsible for about £20,000 worth of chemo wastage. If you're reading this in America, you'll now see how us Britian's could not understand your resistance to Obama's health reform. As flawed and cash starved as it can be, the NHS is a bloody miracle. You should be grateful you have a president who sees it the same way. I would be screwed right now, if it wasn't for the NHS.

Mental exercise: Imagine you have a mentally damanding test to do. You are nervous. Very anxious. You don't want to do it. Perhaps it involved some physical danger, like jumping off something high or getting into a bath with spiders - whatever freaks you out. You are full of fear. Full of anxiety. You feel slightly sick. At the last moment, just as your anxiety is at it's highest, you are told you don't have to do it. The anxiety drops, the fear dissapates and relief rushes in.

So I'm told I don't have to have chemo. But the sickness doesn't drop, doesn't dissipate, there's no relief. I'm still feeling very, very sick. Shortly after, the nurse detaches my line and flushes it with some saline. I grab my sick bowl and wretch furiously into it.

Finally I get to leave. To suck down some fresh air. That should help. It doesn't. I am still sick.

I have a plan. To eat. A dear friend takes me to a pub, where I have a vegetarian chilli with rice, followed by a huge piece of chocolate cake and icecream. The plan is to change my body chemistry, the smells, the tastes, the feelings - yet, although I enjoy the meal, as I walk back out into the carpark, I realise I'm still feeling sick,

So, I go home. I take a handful of anti-nausea tablets and go to bed. At 2:00pm. I fall asleep in a heartbeat and the next thing it is 8:30pm.

I still feel sick, but slightly better. As I write this, I feel sick.

I feel as sick as if I have had chemo.

The insanity of this situation is hugely apparent to me. Today, I went to a hospital, had some blood taken from me (didn't even need a needle, direct out of my PICC) and then I was sent home.

I feel like I've been through an emotional wringer. I never realised that anticipatory nausea could be so devastating. It's now 22:30 and I still feel ... sick.

I've been given some Lorazepam for next time, to take before I return to the unit, to help, to sedate. I pray that it does for this is getting out of control.

My spleen feels big, treatment is delayed again. Nothing is very great news and does lead me to the same conclusion, that, at this rate, in time I will in time be looking at a full splenectomy and all that goes with it.

We shall see .. but for now, I sign off still feeling sick, yet knowing that nothing has happened to me to make me feel this way.

Insanity. Pure, insanity.

New rule

People in cancer/transfusion units should be barred from talking about tumers, blood in urine, death, bleeding from nose, putrid boils and whatever other subject these sodding people seem fascinated with. I'm feeling really, really sick already with anticipatory nausea and your eternal conversation revolving around your fascination with internal organs and bodily fluids is pushing me to the point where I might barf on you, which will give you something to fucking talk about for the next three months.

I forgot my headphones.

Sent from my BlackBerry® 9700 wireless device

Wednesday, 24 March 2010

fat spleen

First up, I hope noone took offense to my sick little Cancer Card post below. What can I say, boredom does funny things to an already sick man. It still makes me laugh, though. As long as I'm happy etc ...

I think my spleen has got a bit fatter over the last couple of days. Hard to say, but it feels more uncomfortable, a bit like I've eaten too much. Yawning is harder than before (yawning squeezes the diphragm and there's no room for all my insides when compressed, so it 'hurts').

I feel lazy and like I could go back to bed at any moment. But I'm here, at work, spending too much time distracted by the internet and music forums, when I could, at the very least, be carrying on with my C# development study.

I've got it into my head that when this first complete course of chemo is finished (not sure when, but let's say May sometime), that the scan results will reveal that my spleen hasn't shrunk much and it will be taken out anyhow. It was so touch and go last time, that I think the odds were alway stacked against me. As you will see, if you need reminding, on my Cancer Card and click that disturbing tree, my spleen is/was damn big to start with. Well, at the very least, total spleen removal will be a whole new chapter in the blog. I'll see if I can hook up a live organ removal webcam.

I am due for chemo tomorrow - that's doesn't help my mood, I guess. Another week of feeling rubbish whilst chained the chemo couch. The novelty has worn as thinner than the thickness of a butterfly's wing.

Positives? Well, I had a good weekend, a lot of my new music toys arrived and I set up my first professional studio mic, complete with reflection filter and pop shields, to record my terrible voice. Plus I got some amazing new (virtual) synthesisers for my music workstation (I won't bore you with it, but think 'lots of nice new sounds'). I'm still awaiting my actual, physical, real, synth (Access Virus Ti2 Keyboard, go google), which is hideously delayed and causing mild resentment towards a certain music store and a German keyboard manufacturer.

Another big positive, I have my first music lesson on Sunday. By an amazing piece of 'luck' or co-incidence, I have found a guy who lives in walking distance of my abode, who teaches music tech at Hertfordshire Uni, is an excellent pianist/keyboard player but also knows and understands all the techy stuff (which I want to bore you with, but I shall spare you). So my homework ranges from 'scales and chords' (as you would expect), to critiquing a Nick Drake song (!), to writing a song with my vocals (argh!) so we can look at mixing options. I'm optimistic that my work with this guy will really help me to be not only be a better keyboard player (shouldn't be too hard), but increase my songwriting ability and production techniques. He was quite a find, it's not that easy to find these people like this kicking around ... especially one on your doorstep.

So, reasons to be cheerful and life is, cancer aside, painfree, stressfree and full of interesting people. I am blessed. But it's bloody hard to hang onto that when the smell of chemo ward fills your lungs.

Speak soon.


Tuesday, 23 March 2010

The Cancer Card

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Saturday, 20 March 2010

ratty and scatty

Wow. How unbelievably snappy have I been? Honestly, for a couple of days back then, I could have ripped your head off your shoulders for dare asking me to do something. Not good.

I did a bit of reading about this new miracle drug I've been taking 'Lorazepam', the drug that's made the last chemo session the best yet, the drug that's made more sleep better than ever and the drug that made the nausea just about on the right side of bearable.

The following statements jumped out at me

  • lorazepam's principal use has been in treating the symptom of anxiety.
  • Among benzodiazepines, lorazepam has a relatively high addictive potential
  • Lorazepam has relatively potent anxiolytic effects and its best known indication is the short-term management of severe chronic anxiety, though in fact the FDA advises against this usage
  • Lorazepam has strong sedative/hypnotic effects
  • Withdrawal symptoms, including rebound insomnia and rebound anxiety, may occur after only 7 days' administration of lorazepam.
  • It is sometimes used in chemotherapy as an adjunct to antiemetics for treating anticipatory nausea and vomiting
Serious shit, then. Not to be messed with. No wonder I liked it so much.

I only get 5 days supply at a time - to get me over the chemo treatment - and I take them about 10pm. I have to confess, I was actually looking forward to taking them by day 3. Mainly because it mean 'outtahere' for 10 hours. I didn't get up to be sick, go to the toilet or have a drink. This is a miracle - normally during chemo, I am very restless during the night - sweating, or thinking, or drinking, or itching, or pissing like a racehorse or staring vacantly into a fridge at 3:00am wondering, expressed as a percentage, exactly how much of the contents of the 'fruit and vegetable' compartment is now over 3 weeks past its sell by date.

So during the 5 days of hell, everyone is happy. Sickness down, sleep patterns up. But then the Twilight Zone starts.

I would actually say, in many ways, that the two days following the 5 days of chemo are the worst. When you're sick, you're sick. You sit in your pants, you watch shite TV, you do what to can to get through the day. You're sick. Everyone gets it.

But then you're kind of well again. Except your not. You're on a bloody different planet. Everyones says you 'look well' (this is very important, apparently) but your brain is hanging around in limbo. The body might still doing weird things, like aching or not doing things, like pooing but you can deal with that. It's the head stuff that's quite hard.

Memory is terrible, confusing A for B, making mistakes in emails - all that kind of thing is common - frustrating but again, bearable. However, this time, walking back out in the world, meeting people and seeing crowds and life was a lot more of a shocker. I suspect the side-effects of the Lorazepam at work.

For example, my good friend took me for a meal on the first 'good evening' ... I walked into the resturant and nearly had a panic attack. Slight paranoia and anxiety kicked in. It passes after a while but it's not a feeling I relish as it's an old, old feeling that I once knew very, very well ... and one that I haven't felt for a very long time ...

You see, I used to have this little drink problem. And from the age of 17, to compound things, I was stuck on various 'tablets' - right up until 31, when I got sober. The drink and those 'tablets' mixed to cause many years of anxiety and mental issues ... which I'm not going to rattle on about here, but I suddenly find myself having flashes of that old, familiar - and certainly not welcome - feelings.

So, I shall be very wary on my new little helping hand. For those tablets come at a cost. Sedate tonight, over-alert tomorrow. There are no highs without a low. I know this.

I guess this explains why I was so snappy on those two days ... so angry, so quickly. So snappy. Boiling inside with unfounded resentments ... for no reason. Except, I guess ... coming off those little blue pills.

My next treatment is due this Thursday ... if I have enough white blood cells - we shall see.

Sunday, 14 March 2010

sicking down, sucking up

A quick one for you. Session 4a administered - strange day in hospital. Can't write about it - memory brings back nausea.

However, overall, nausea is not as bad - my new Lorizapam drugs seem to be helping, plus I'm taking more of one of the others.

I'm still sick about three times a day, progressively more frequent as the day goes on, but its better. Apart from the Second Coming of a tin of grapefruit. I redefined the term 'bitter'.

The Lorizapam also helps me sleep better, as it is a sedative. Whilst I've no desire to be heavily sedated as a rule of thumb, I know that I'm hardly missing out on anything, as I lay half-paralysed on the sofa. In fact, if I could take a 5 day 'outtahere' tablet. I would every time.

Despite the nausea being milder, its still all a bit Lord Of The Suck, as I keep getting caught in a trap that I should be better than I am - and then attempt to do something normal. But I can't - I'm too weak. Making a concerted effort to do something positive just ends in more nausea and frustration.

The most positive thing I've managed to do, is a little music synthesis study and play Heavy Rain on PS3 for a while. This probably sounds like student heaven, but when you can't really absorb the joy from the tasks, it all becomes a bit pointless.

As a testimony to the apathy the chemo brings on, I've typed this from my Blackberry, because my laptop is four foot out of reach and I can't be arsed to get up.

That's probably your lot for a day or two. Heavy Rain and Heavy Sedation to follow.

Have a good week guys, as weird as it may sound, I'd love to be setting my alarm for 6:30 and rising with the rest of the productive society.

Thanks for all your messages. 'Couldn't do it without you.

Sent from my BlackBerry® 9700 wireless device

Wednesday, 10 March 2010

you look well

Well, it's been a while, huh? Or it seems like it to me, at least.

It seems like a long time since my last chemo session and it's been good time. That extra week off the Sick Sauce makes all the difference to my life.

'You look well', people say. I guess I do. Hair is thinning, but hair is still hairy. Weight is not a lot different from when I was training for the marathon. If you look well, you are well in most people's eyes. I don't argue.

I've been working pretty hard this last week, almost got in a couple of 10 hour days. And for the last week or so, I guess I've forgotten about my status as 'host to cancer'. When you look well, people don't ask so much. If people don't ask so much, you don't talk about it so much. And after a few days ... well ... you kinda just forget.

I've been saving up for some very expensive new musical toys recently and selling off some old ones. That's kept my mind occupied. I've managed to justifty an unjustifyable spending spree by playing The Cancer Card on myself. I deserve it. I'm not sure Barclaycard will see it that way, when I default on the credit card payments, but I'll cross that bridge should I ever get to it. The toys have been ordered and will be ready for pickup come the 16th ... which will give me a focus through the coming days of clutching a toilet bowl.

In fact, the last two weeks have been good. I'm gainfully occupied, I've got some new toys to look forward to, I've been out with some good friends, I'm learning a new computer programming language, I'm not putting any pressure on myself, I'm off to see 'Alice In Wonderland' at the iMax tonight, I'm not thinking about furiously multiplying body cells and, of course, I look well.

So in a strange ironic twist, I find myself in a position of not been this 'content' for quite some time. At a time when others expect me to be at my worst, I'm actually at my best.

That is, of course, when I'm not sick.

Tomorrow I will be sick.

And I won't look very well.

Thursday, 4 March 2010


News just in:

I've just taken a call from Camp Chemo and they've ballsed-up the order for my chemotherapy drugs.

I cannot now have it until next Wednesday or Thursday, which should please a certain someone, as it means I can go to his wedding on Saturday.

I love administrative cock-ups.

*air punch*


Sent from my BlackBerry® 9700 wireless device

Tuesday, 2 March 2010

is there anybody there ? ...


I guess there's not a lot you can say to someone in my position.

"How are you feeling?"
"Are you getting used to treatment now?"
"When's your next treatment?"

And hence I notice that I get very few Comments for the amount of people that I suspect may read be reading.

So I would like a favour from you ... if you are reading this ... yes, YOU ... could you click the COMMENTS link below this blog entry and just say how often you drop by - you don't have to leave a name ... just something like '1st time here', 'drop by once a week to read all', 'don't read everything' ... just something so I get a guage on how many readers I have ... in fact, you don't have to say anything .. just an empty comment would show me that you're listening.

It's not an ego thing. Well, I don't think it is. I'm just curious.

Or so I've been told.

Oh, and to answer the above ... 'not bad', 'no' and 'too fucking soon'.