Saturday 31 December 2011

Me, me, me

I hope your Christmas was better than mine. Dr Karmen was worried about further complications from my catheter and wanted to remove it. We agreed this was for the best, although it meant all further treatments would have to be done intravenously - more needles.

Consultations with her cardio-vascular colleagues raised concerns that my blood clot could dislodge during the procedure. I would need to kept under close observation near the emergency room for 2 hours incase it slid down into my right lung. When I asked what symptoms I should expect, she said 'you don't want to know' and advised that I just sit still. The stitches were cut, and the pipe waggled before my eyes before being bagged for bacterial analysis. The various chemicals are now administered via a 3-way tap into my arm, or the back of my hand if they can't find a suitable vein.

I finished 5 days of chemo on Christmas eve, and went directly to bed expecting a rough detox. I underestimated how bad it would get. My body had been poisoned to the absolute limit and, for the subsequent 3 days, it felt like I was inhabiting a corpse. The Dutch enjoy Christmas dinner on the night of the 24th. Moniek and Ilse cooked a gorgeous traditional meal which resembled my family's fare, plus some weird sauces. I gratefully joined the table and ate well, but had to retire as soon as I put my cutlery down.

Time zones gifted me 7 hours to build myself up for a call to my family on the 25th, but it wasn't enough. My horizontal 'merry Christmas' greeting was utterly exhausting, and I felt depressed and ashamed at my weakness. The 26th combined extreme lethargy with anxiety about getting to the hospital for more tests on the 27th.

I'm a regular at the blood test lab and have become friendly with the staff. Their previous chirpy welcomes have been replaced by compassion bordering on pity. The analysis was prepared for my penultimate B-chemo on the 28th. It was only a 2 hour session, but I had reached my threshold. I wanted to rip the tubes from my arm and just walk out.

Dr Karmen had given me 'every reason to celebrate' Christmas with the news that my cancer appears to be on the retreat. Words cannot describe how relieved and grateful I am, but I can barely raise my head to smile. My condition also cast a gloomy shadow over Moniek's birthday celebrations on the 29th. It's now new year's eve and I'm slowly recovering. The girls have organised sushi and some alcohol-free beer. Things are looking up.

I realise this blog is all me, me, me. Here's an aria from the opera Carmen by Georges Bizet. It's dedicated to Dr Karmen Wong and her staff, with 'happy new year' wishes for everyone from the Swedish tenor ... http://www.youtube.com/watch?v=jXKUb5A1auM

There are upsides to spending all day in bed. I've spent endless hours educating myself musically in Beethoven http://www.youtube.com/watch?v=xpcUxwpOQ_A ... jazz classics http://www.youtube.com/watch?v=lf3BNRF9ICc ... and, as a tribute to my dad, Irish folk songs http://www.youtube.com/watch?v=OCbuRA_D3KU. Close the office door.

Saturday 17 December 2011

Avec les oeufs frites

With cruel irony, the blood clot in my jugular has been caused by my catheter - the pipe & tap system intended to avoid the use of needles during chemotherapy. Now I need 2 extra injections per day to dissolve the clot. Doh!

Moniek has become quite an expert at giving the jabs, while I become a pathetic, whimpering jelly every time she opens her medical bag. At the clinic, the nurses all have funny stories to tell about big guys who feinted upon sight of a needle. I don't get the joke.

Until last week Moniek could visually deny that I've got cancer, but no more. I'm starting to look really sick: my eyebrows and eyelashes are thinning, I've got big dark circles around my eyes, and patches of my thin white skin are being burned brown from the inside. My arms and legs are wasting away, but my belly is expanding due to my Mr Creosote (http://www.youtube.com/watch?v=RLpBiy07cso) appetite.

Your favourite "Meaning of Life" quotes, please
... and not just Mr Creosote  ones!
It's not a good look, but I'm gonna keep shovelling the food down while I can. Which, in reality, means for as long as Moniek continues to bring me delicious meals 'with the eggs on top' - and I can control my stomach while the room spins.

Despite appearances, the fantastic Dr Hsieh was encouraged by my latest blood results and gave me the last round of the 2nd chemo cycle on Thursday. The nurses fixed some technical issues with my pipe and dripped in a bag of B. My temperature soared that night. Moniek checked me 10 times in 3 hours. We got worried and phoned the doctor directly at 10pm. He never switches his mobile off, and encouraged us to call 24/7 if we're concerned about anything. What can I say?

It was just a fever, and I've now cooled down to 'normal' post-chemo levels. This morning I was 'better' (ie 'better get a bucket, I'm gonna throw up'), but again managed to hold it all down and returned the bucket unused. I've been 95% bed-ridden, and plan to sweat it out horizontally tomorrow before I build myself up to an important lung test early next week.

Today's country classic http://www.youtube.com/watch?v=zc4e-HdlhPY is for my special nurse Mo and any woman who's had to look after a pathetic sick bloke. Check out the creepy waxwork compere ... and watch how Tammy keeps a straight face as she sings the immortal line "because, after all, he's just a man"!

Wednesday 14 December 2011

Rumble in the concrete jungle

Dr Wong has commended my resilience, and many people have applauded my positive attitude. I appreciate the compliments, but it doesn't tell the whole story. Yes, overall and on balance I have been very optimistic, and I'm doing extraordinarily well. However, there have been real lows and I want them on the record too. I've been so down for the last couple of weeks that I couldn't muster the strength to get out of bed, call my family, or even listen to music.

"Is that all you got, George ... is that all you got?"
Ali taunts Foreman, 'rumble in the jungle' 1974
Back to my earlier boxing metaphor. It feels like cancer has to be beaten out of me by chemotherapy. It's nothing like a fight. I just have to stand up and take a brutal pounding from PEB. I get knocked down, groggily get back on my feet and ask for more, in the hope that - eventually - cancer will be beaten from my blood. The number of rounds is planned, but not fixed. My original plan of 15 got extended to 21. Who knows? Maybe the plan will extend again. Anyway, I've survived 13 rounds so far.

After each round I get a short time to rest in my corner and regain my strength. I replace lost fluids and nutrients. I nod sweatily at the instructions of coach Mo, and get re-motivated by the cheers of my fans. And I get patched up by my wonderful medics. Razor-slitting a boxer's purple puffed eye fixes one problem but creates another - making him vulnerable to a match-finishing cut. Chemo patch-ups have serious side-effects too.

Some days I'm up ...
There are no guarantees of success with chemo. With all the amazing advances in oncology, I'm gobsmacked by the extent to which luck influences a patient's chances of survival. Moniek bought me Lance Armstrong's book; he also wrote "I can't help feeling that my survival was more a matter of blind luck". The fact that all the pain and suffering is merely a gamble that might not pay off can be very depressing.

In some rounds I've been too weak to raise my gloves to defend myself. I've been battered senseless, and my legs have buckled. I've hit the canvas, gum shield out, blinking slowly, honestly hoping that someone would throw in the towel. I've daydreamed about giving up, and just biding my time with a cold beer and mountain views until the grim reaper arrives. A natural fade-out has often seemed a nobler alternative to this relentless pharmaceutical pummelling. If I'm resilient and having such thoughts, my heart goes out to patients who are less fortunate.

... and some days I'm really down
When I snap out of it and revive my powerful will to live, I hardly recognise myself in the mirror. It's not just physical; I've become a dependent, retarded, anxious, introverted insomniac. I convince myself that it's all chemically induced and temporary. But I've taken such a hiding that I wonder how much of the real me I'll be able to salvage, and what sort of life is achievable if I survive. Apparently many patients ask themselves similar questions.

Sometimes the treatment between rounds is harder - especially on the mind - than the actual chemotherapy. Last night I had a splitting headache, an agonising right ear drum, pain down the right side of my neck and across my swollen shoulder, and a worrying shortness of breath. Dr Wong's on a well-earned holiday, so I met her stand-in Dr Hsieh. He suspected thrombosis in a vein near my catheter.

Ghandi: "the man with 4 aces doesn't ask for
another hand" ... my hand was so bad, I wanted
to throw it down and head off to the bar.
Ultrasound scans showed a massive 11cm long blood clot in my jugular, extending from my jaw to my collar bone. Oh shit.

My O Level in Biology led me to predict imminent brain damage and/or a heart attack. I went quiet and Moniek shed a few tears. The doctor assured us it's treatable and not life-threatening. I was given a clot-dissolving injection, and prescribed 2 additional jabs per day for the next 6 weeks. Oh joy.

Don't despair. My gumshield is back in, water has been poured on my bald head, and I'm determined to go the distance whatever it takes. The Magill shuffle is a little slower than the Ali shuffle, but at least I'm mobile. The plan is to treat the clot again tomorrow, and go ahead with Round 14 (B-chemo) on Thursday. Let's hope there are no more nasty surprises before then.

We're long overdue for a great song. Here's a classic about not giving up (from an equally bald guy): http://www.youtube.com/watch?v=mjepiv9vqKc ... the lyrics are just below the video.

Sunday 11 December 2011

Missing inaction

The Hood, an Elvis jumpsuit,
and Elaine's wedding karaoke
on the horizon ... hmmmm.
Last time I wrote, we were preparing for the start of my second 6-day cycle. That was two long weeks ago. Things didn’t go quite according to plan. Cancer doesn’t take much notice of plans.
Before I started chemotherapy, when Dr Wong first found the tumours in my lungs, I was wheezing with only 89% of my expected lung capacity. Bleomycin, the B in my PEB cocktail, has dangerous side-effects including pulmonary fibrosis (scarring of the lungs).
I had caught bronchitis during my first chemo cycle, but shook it off with antibiotics. However, I still had a cough/cold and was struggling for breath so Dr Wong postponed my treatment. More blood samples were examined. A chest x-ray showed no signs of fibrosis, so I was back on schedule after just a couple of hours delay.
Chemo days 1 & 2 passed without incident. We had a lovely Thai meal in the evening, and waved thanks and goodbyes to Elaine as she returned London. Day 3 brought my cold under control. Day 4’s blood results ruled out various chest infections and my Chorio count had remained ‘less than 2’. Day 5, a Saturday, I shuffled into the taxi home and collapsed into bed exhausted. I would rest Sunday & Monday, and planned to finish the cycle the following Tuesday.
Cold turkey is far less amusing
I don’t find the actual chemotherapy too bad. It’s the 'cold turkey' de-tox afterwards that hits me hard. Sunday was an anxious, sweaty, hallucinogenic, nosebleed nightmare. I can’t account for Monday. I kind of knew what to expect this time round but, my God, it’s rough. Dr Wong said that I was doing exceptionally well, and that she’d never seen a patient with such a strong tolerance to PEB. If I’m doing well, I dread to think what others must be going through. More on the psychological effects of cancer and chemotherapy later ...
Monday I was back at the hospital for a scrotum check-up and a lung test. Dr Jimmy was really pleased with my progress, but the lung doctor was less impressed. I had semi-blackouts in the waiting room and almost fainted during the test. I was in a mess, so we went straight to Dr Wong. My lung capacity had plummeted to 72% and my blood pressure was low. The previous day’s Niagra sweating had caused serious dehydration and I was immediately put on a saline drip. Day 6 was cancelled until further notice.
Dr Wong would not give me Bleomycin while I was lacking a quarter of my lung capacity, and risk leaving me a ‘respiratory cripple’. I felt OK after the drip, and asked for another go at the lung test. I really wanted to continue with the chemotherapy, and was nervous that Chorio might re-strengthen during the down time. I gave it everything I had but, although Mo and I were confident of better results, I failed to reach 73%. I was absolutely devastated. It felt like the side-effects of chemotherapy were killing me quicker than cancer. I spent a couple of depressing fish-out-of-water days on the sofa thinking about future life without oxygen.
Thunderbirds are go
- but  George Michael?
The clear x-rays had led Dr Wong to suspect that my lung condition was due to something quite different from Bleomycin, and asked a respiratory specialist to investigate. My full name is George Richard Magill. The doctor shouted into his busy waiting room for ‘George Michael’ and everyone looked around for the singing/cottaging superstar. I stood up, and there was a lot of giggling. The doctor got stuck in a mental rut, and kept calling me George Michael during the consultation.

It took him about 30 minutes and 2 tests to reach his firm conclusion - I have had ‘chronic moderate persistent athsma’ since birth. I found this incomprehensible. I can’t be athsmatic. I run around drunk above 4000m in the Himalayas while hardened trekkers are collapsing from altitude sickness.

4km up the Himalayas? In January?
With chronic asthsma? You gotta be joking!
He called Dr Wong directly with his diagnosis and recommended treatment. They agreed that my chemotherapy should resume immediately. In Singapore, this really means immediately. Moniek and Ilse were elated. I was knocked sideways. I had to sit down and collect my thoughts outside the elevator before being attached to the Bleomycin bottle.

Wow, that was a tough fortnight. I’ve just emerged from the B-detox. I can breathe again, Chorio is on the ropes, and I’ve got a few days to get fighting fit for the 3rd cycle.

Saturday 10 December 2011

She came, she saw, she cooked - by Rick's sister, Elaine

Mum Magill, Elaine & Rick; Christmas 1972
Rick asked me to write a blog but at first I was a bit nervous as (a) I'm not as witty as him and (b) I've seen the abuse that he gets on here and don't really want to be on the receiving end of it. I then thought that it would be a good way to get back at him for all the years of torture (physical and mental) in our childhoods.

After some more contemplation it did seem like a good way to try to reassure all the thousands of people (yes, apparently this blog does have a major following, not just the usual suspects with OCB who write the comments) that Rick really is doing incredibly well and the treatment he is getting is second to none.

Rick did ask me to try to keep this as short as possible, but there's so many things I could/should write about I've really struggled even after cutting a lot out. Sorry! So, either settle down with a cup of tea or skip to the end - your choice!


'Rick's room' at Dr Wong's clinic
Firstly, he really is doing as well as he is making out. Yes, he’s going through a very, very tough time and every day seems to bring a new challenge to overcome, but each challenge is being met with a very positive attitude and with a big dose of humour. I know he is frustrated with often being very tired, disoriented and a little more retarded than normal.

In particular he’s concerned about not being able to keep on top of all the emails and messages he is getting. Knowing that you are all out there supporting him is bringing a HUGE amount of comfort to Rick, so please keep it coming…… but please, please don’t think he’s not reading your messages if he doesn’t reply – it just takes an awful lot out of him to sit in front of the laptop and he can’t do it every day.

Then there’s the medical treatment he’s getting. He has written many times about the doctors, nurses and facilities so I was expecting good things when I got there, but what I saw blew me away. Each specialist has their own little clinic with a dedicated team of nurses and their own treatment rooms. Dr Karmen Wong is clearly a lady who knows what she’s doing and I feel honoured to have met her. Three times. Each time nervously trying to keep out of her tortoise-spectacled eye line. Her nurses are extremely professional but also somehow manage to bring light and laughter to the clinic. They all deserve a glistening halo.

And then there is the treatment room – there’s no faffing around or delays trying to get a bed for treatment here. Everything is set up to seamlessly move you from the consultation through to treatment in 5 easy paces, or 10 shuffling steps in Rick’s case. The rest of the hospital is amazing too. I kept calling it the hotel by accident, as when you sit in the lobby sipping a café latte watching people arrive and sit around in the comfy sofas you would think you were in a 5* hotel. And not a 5* at 4am after a wedding either – there’s not a whiff of vomit/urine/disinfectant anywhere.
Massive thanks to Ilse for everything
Rick is so incredibly lucky to have this level of treatment, but none of this would have been possible without Ilse. She organised everything so that he didn't need to worry about any of the logistics or details, and since then she has been completely selfless giving over her gorgeous apartment to the sweaty, smelly, high maintenance man that is my brother. On top of that she made me feel so wonderfully welcome when I arrived.... And how did I repay her? By drinking all her wine and staying up chatting until 2am the night before she had a 7am flight to the Maldives. Sorry Ilse!

Last, but by no means least there is Moniek. I’m not really sure what I can write to get across the amazing support she’s giving Rick. Looking after him is a 24/7 job and she’s doing fantastically well at it. On top of the stress, anxiety and uncertainty about the future she is also making sure each day is a pleasant as possible for Rick with constant bedding/clothes washing & changes (he sweats – a lot!), cups of tea and cold drinks, making sure the cupboards are stocked and there is food on the granny tray (it’s not tartan, but it might as well be)….. and always with her beautiful smile. She’s one in a million, which is strangely similar to the incidence rate of chorio….. so what are the chances of Rick getting both!?!
Rick hit 89kg during my stay
- his fattest ever -
a world first for chemotherapy?

The week I had there went incredibly quickly but I took so much away from the visit that has increased my confidence that Rick will beat this thing. He has everything and everyone that he could possibly ask for, and he also now has a slightly increased waistline due to my cooking/force-feeding. I’m hoping that this will not only give him some extra strength in the coming days, but it will also give Moniek a bigger target of flab to aim for when he next needs the booster jab!

Love to you all

Elaine

PS – I’ve re-read this a few times now, and despite multiple edits I know there are at least four comments that Des, Ian et al (aka the Finbar Saunders gang) will pick up on!

Monday 28 November 2011

Tiger, leopard, baby elephant

A white blood cell.
I need lots of them.
My white blood cell score last Tuesday was 1.4 megatons per millilitre (or something). I had been given medicine to boost my score higher than 2; anything lower, and my body would be unable to take the punishment of chemo. We rolled up on Wednesday to get my new score and crack on with the chemotherapy. I was gutted to hear that my immunity levels had actually dropped to 1.1, and chemo was therefore out of the question. Again. Chorio needs to be whacked hard and fast, so my worry rate increased.
Moniek preparing the syringes.
Sponsored by Fray Bentos, dedicated to the Conway.

White cell boosters could become a regular necessity, so Moniek had to learn domestic syringe skills. My worry rate spiked. The nurse injected another dose into my self-squeezed belly fat during a live demonstration. The side-effects of this potion are bones which ache to their very marrow, bronchitis-light, and monsoon sweating. It’s not fun, and not conducive to writing a blog.
The tiger-leopard
We waited by the tropical fish tank for the blood lab to open on Thursday morning. Moniek joked about my long-overdue hair loss, and grabbed the back of my head. A big clump came off in her hand and the joke fell flat. An hour later a borderline white cell score of 1.9 arrived, and Dr Karmen decided to go ahead with the B-mix chemo. I sighed with relief, and jumped into the bed to be poisoned.
The chemo depleted my white blood cell score again. Moniek gave a practice injection under medical supervision. Her technique was that of a beer-swilling darts player going for treble-twenty. I over-squeezed in panic, trapping the needle in my spare tyre. The nurse was shouting ‘let go of your fat! let go of your fat!’ but, despite the mild chaos, Moniek was given her needle proficiency badge.

Dr Karmen reviewed my data and called me to the clinic on Friday for yet another booster. A gruelling 5-day major cycle was drawing near, and so a plan was agreed for Moniek to give me another injection on Sunday. We were given a cool-bag to transport the medicine to the fridge at home.
Instrument of torture

My sister Elaine arrived on Friday afternoon. I was full of aches, coughs and sweats but cheered up immensely by her arrival. Her suitcase was full of gifts from well-wishers including a box of Quality Street which, as it turns out, are also enjoyed by the Dutch. Our ensuing gold coin debate had nothing to do with Eurozone matters.
Torture
My hair was dropping rapidly, so I offered the girls the rare opportunity to hand create a half tiger stripes, half leopard spots ‘style’. 5 minutes later, I was completely bald save for some easily ridiculed ‘baby elephant’ bristles.
Moniek needed to inject the booster medicine on Saturday, so I made elaborate omelettes to delay the inevitable. The actual size of the needle was, admittedly, quite small - but the psychological trauma it created was massive. Unfortunately, Elaine photographed the entire drama.
The baby elephant and Elaine.
My next major chemo cycle is scheduled to start tomorrow. Dr Karmen ordered more tests to check if (a) my white blood cell score was considerably higher than 2, and (b) my Chorio count had dropped from 6.7 since last week. We avoided the rain and nervously awaited the results under the awning of a coffee shop.

The nurse called mid-afternoon: white blood cell score 50, Chorio count 2. There was much cheering, hugging and chocolate eating.

Tuesday 22 November 2011

Click

I put the revolver to my head again today, and took 240 tortuous minutes to pull the trigger. It clicked.
We arrived early for two 8am blood tests - one test for white blood cells, and another for beta-XCG (the hormone marker for Choriocarcinoma). Moniek was laughing about how cancer had changed me. The old, wrinkly purple-rinse lady in the lab has magical pain-free needle skills; I was hoping for her instead of one of the young nurses. I got lucky. But I think she was taking the piss, because she used the cartoon dinosaur arm-strap instead of the proper paramedic one. The vials were filled red, triple-checked, and marked ‘urgent’ so we could get the results today. Over coffee, I braced myself for the dreaded B-chemo. I’d been quietly steeling myself since yesterday afternoon.
I’ve been eating like I’ve got two arseholes, but the scales in Dr Karmen’s clinic showed that chemo has eaten 5kg of me. I flicked through a vacuous, sycophantic fashion magazine with (as Bob Dylan sneered in ‘Like a rolling stone’) all the pretty people drinking thinking that they’ve got it made. I was called into her office at 10am.
My white blood cell results had arrived, but not the beta-XCG; it’s a much more complex and time consuming test. My immunity levels had dropped, and so it would be too risky to undergo B-chemo today. My blood had been exceptionally strong until now, so the anti-climax was disappointing and exhausting. Instead, Dr Karmen administered a new concoction to boost my white blood cell count and re-planned chemo for tomorrow. The deadline for ‘Brian’ quotes (see below) has therefore been extended ... ‘ooh, you lucky bastard’.
We  discussed potential scenarios. If this booster medicine fails, she has a stronger alternative on the top shelf. If that fails, I’ll need a bone marrow transplant.
Someone's watching over me ...
bit it ain't no porcelain statue!
She extrapolated my beta-XCG data to predict where my Chorio count should be when the results arrive. It’s calculated from the ‘half-life’ of Choriocarcinoma.  She hoped for 3 half-lifes since my last count of just under 100. Best case scenario: half of 100  is 50 ... half of 50 is 25 ... half of 25 is 12 ... and a half ... but she would be happy with any number less than 20. Another scenario: what happens if my Chorio count is more than 20? This would mean that my cancer has become resistant to PEB chemotherapy. Chorio is infamous for this. The back-up plan is to switch my cocktail, possibly to Lance’s PIV mix, and extend my chemo programme. The beta-XCG results were expected around 2pm.
The stakes were high, and we had 4 hours to kill. The nurses offered to call us with the results when the report arrived. We left Dr Karmen’s office and bought a remedy for my anxiety: an ice cream. Fearing an imminent descent of the angel of death, I went for a large caramel coffee with vanilla cream and Toblerone chunks on top. Moniek was feeling a bit chilly in the air conditioned mall (yes, really) and went for a cafe latte instead. The hands on my watch turned very slowly. I thought about friends I hadn’t managed to contact yet, possible locations for my cremation, and other ‘what if?’ practicalities.
Each time the phone rang, my heart raced. False alarms. Back at Ilse’s apartment, I was too edgy to watch television. The mobile rang and Dr Karmen’s name appeared on the screen. Deep breath. Pleasantries were rushed before the nurse gushed ‘we’re happy to say that your beta-XCG count has dropped to six point seven’ ... ‘can you repeat that?’, I gulped in amazement ... ‘yes, six point seven’ ... ‘thankyou Dr Karmen, thankyou God, thankyou to all my family and friends’. Click.
I feel like screaming, dancing and air-guitaring with joy in star-spangled boots: http://www.youtube.com/watch?v=ZBR0T3f7tUw

Monday 21 November 2011

He ranks as high as any in Rome!

This is for my family who gathered to say prayers with mum and dad: Margaret; May & Norman; Angela & Roger; Eddie, Ruth & Karen; Anna, Pat & Andy. It’s also for my friends around the world who have been having a word with ‘Him upstairs’ on my behalf. Preparing for more n-n-n-n-nasty chemotherapy tomorrow, I’m strengthened by your prayers and wishes - and I thank you from the bottom of my heart.

Somewhere in the Middle East with hair
I’ve led quite a wild life, so many people are shocked when they discover I’m religious. Yes, I mock all the man-made hierarchies, costumes and rituals. And 'Life of Brian' is, perhaps, my favourite film of all time. But I have unshakable faith in God and the life to come.
In 2003 I set off on my motorcycle, rode around a lot of countries, and haven’t turned around since. I met the fabulously wealthy and the poorest of the poor, wise men and fools. On the road, I studied many religions. In the Bible, I concurred with what Ecclesiastes saw on his journey. It’s from Chapter 9, verses 11 & 12:
I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all.
For man also knoweth not his time: as the fishes that are taken in an evil net, and as the birds that are caught in the snare; so are the sons of men snared in an evil time, when it falleth suddenly upon them.
Death is certain - life is not. Life just throws stuff at us. Good and bad. I believe it’s all a big test of character and faith on which we will eventually be judged by our maker. The snare of a rare and deadly cancer has fallethethethed suddenly upon me. God only knows when my time will come but, when you pray for me, take comfort that I have no fear of death. I fear only God. And needles. And wasps.
... and at Dr Karmen's office - without!
I’ve been deeply touched by the hushed prayers of a great many people who are more usually found in a bar than a place of worship. Desperate times call for desperate measures and all that. For them, one of my favourite passages from the Koran; it’s from Sura IV; Women:
O ye true believers, come not to prayer when ye are drunken, but wait till ye can understand what ye utter ...
Now if that doesn’t start some intellectual debate on the comments page, I don’t know what will.

For the pious, it's time for Elvis with a spiritual belter: http://www.youtube.com/watch?v=mdrBWiSxStI&feature=results_video&playnext=1&list=PL8A918EDB65602384

I'll need cheering up after a tough day tomorrow. So, my fellow sinners, think carefully and post your best ONE line from 'Brian' please. And, all together now: http://www.youtube.com/watch?v=WlBiLNN1NhQ

Sunday 20 November 2011

Comment writing and sedition for dummies

McMurphy: "Why don't ya shut your
goddamn mouth and play some music."
I'm overwhelmed by the emails I've received from well-wishers. I eventually read every one of them but, I'm really sorry, I'm just too knackered to respond to them all. Some days, like today, I'm buzzing around but more often I'm like Jack Nicholson in the final scenes of 'One flew over the cuckoo's nest'.

This blog enables me to let everyone know what's going on, in my own time, with limited effort. The open, interactive nature of it is a wonderful way for me to have a laugh (and sometimes a cry) at all your comments.

Some people have tried to write comments, but have given up after hours of fruitless frustration and despair. I'll name no names, but there seems to be a typical profile: they're over 30, have an opposable thumb, have been to school, managed to hold down a job, carry a driving license ... but need the help of a 5 year old if they want to play a DVD. For the further advancement of humankind, here's a simple guide to posting a comment:

First, get a pen and a piece of paper. Don't run because you might poke someone's eye out. Write down the important points in steps 1 to 7 below just incase you get lost and confused later. We're going to practice on this 'blog'. You can try it out as many times as you like until you feel confident enough to write a real comment.

Down below, in the middle, there's some blue writing showing how many comments have already been posted. For example, it might say 3 comments. Quite soon, you're going to click on it using the left button of the 'mouse'. If you're already confused, shout for child assistance. Ready? OK, let's begin:
  1. Click on the X comments below. A new page will appear called Post a comment. Take a deep breath and relax. 
  2. Click on the big, empty box. Use the different keys (square things with letters on them) to type a message. Let your creative juices flow. For example, you may wish to dream up a scene where Hilary Clinton gets her comeuppance in a bizarre, frenzied, anatomically improbable 'accident' with some sharp objects from your garden shed. Or perhaps you could just write 'hello' or 'test message' or something.
  3. When you are happy with your message, look at the small box below your message. It says Comment as with 'Select profile ...' and a little arrow pointing downwards at the side. Use your mouse to click on that arrow. As if by magic, a list of scary stuff will appear. Don't cry, it'll be OK. One of the things on the list is Name/URL. Use your mouse to make it go away.
  4. Another new thing will appear called Edit profile with two new empty boxes below. Write your name or nickname in the one that says Name. (If back in Step 2, you did write something violent and rude about an influential figure in the US industrial/miltary complex - put someone else's name instead). You can leave the other URL box blank. That's for under 5's only. Click on the Continue button.
  5. The name you have written will automatically appear in the 'Comment as' box with some brackets () after it. Don't panic, brackets are more scared of you than you are of them. There are two other buttons. Click on the one that says Post comment.
  6. Word verification will appear. It's a made up word in some wibbly-wobbly writing. It's not the beer - it's a clever gadget that spies use. Copy the wibbly-wobbly words ... carefully, so you don't make a mistake ... into the box below in normal writing. Ignore the guy in the wheelchair; he doesn't do much.
  7. Click on the Post comment button and 'hey-presto' your message has been posted for all the world to see.
Dwight D Eisenhower:
"I told you, but would you listen?"
If you can hear a helicopter, it's some Navy Seals coming to blow your brains out for seditious criticism of US foreign policy. And they won't listen to objections about sovereign territory, freedom of speech laws, or finger-pointing stories of 'it wasn't me, it was him'. By the way, if one of the choppers crashes into your garden fence, the Chinese are paying top-dollar for souvenirs on E-bay.

The guy on the right gave a prophetic warning of this in his farewell speech of 1961: http://www.youtube.com/watch?v=8y06NSBBRtY ... this should be part of every school curriculum, along with George Orwell's 1984.

This great cover of a Bob Dylan classic, especially the last verse, is for all the 'hawks': http://www.youtube.com/watch?v=hG443N7lo4Q.

I were Pearl Jam, I wouldn't be going anywhere in a light aircraft.

Saturday 19 November 2011

What's the chances of that?

Lance looking at his 7th
Tour de France trophy
So much for my 'rare' cancer. I've only gone and contracted the same bloody tumor as the chemo world's poster boy. It's like turning up to the Oscars in the same dress as Angelina Jolie. Or something.

Lance Armstrong is the greatest cyclist in history, and an inspiration to millions. He won the Tour de France a record 7 times - 7 in years in succession - after beating Choriocarcinoma. He was in a much worse state than me. Apparently the doctors gave Lance PIV chemotherapy for his 60% mix of Chorio, rather than PEB for my 95%, due to potential side-effects on his lung capacity.

I've learned that 'side-effects' are such a prominent part of cancer treatment that the term is misleading.

I've always had a high metabolic rate, burning up food and energy faster than most, and so I'm rattling through various new side-effects faster than you can say 'paracetomol'. Yesterday I had teenage spots, sores and cold sores; deafness followed by tinnitus; loss of appetite then hunger and heartburn; extreme lethargy and insomnia; and, after morning tea, I developed paranoid hallucinations and diarrhoea (a messy combination).

Then, in the afternoon, I lost my voice for 3 hours, developed an inexplicable fear of pointy things and glass, and one of my teeth broke in half and interrupted my enjoyment of a Marmite sandwich. What's left of my hair is due to fall out the day after tomorrow.

We were having a laugh about it with today's nurse. She was showing Moniek how to clean my pipe (please, remember that children read the comments you write) but reckons my rapid-fire approach to side-effects is the best one. Her attitude was 'well, you're gonna get X so you might as well have it done with and move onto Y, because Z is coming next week'.

I only have to put up with the side-effects; the nurses have to treat them. Is the side-effect serious enough to warrant another medication, or will that create yet another side-effect? Many medicines inter-react with each other, and so medical staff are continually evaluating, compromising, adjusting and refining their treatment of every patient. My hat goes off to them (taking some hair with it).

Cancer and its intended cures are hard on the body, but much harder on the mind. Some people talk about an 'emotional rollercoaster', but that's bullshit. You choose to get on a rollercoaster, the ride lasts a short and predictable time, it loops the same loops, and your chances of death are infinitesimally small. The psychological impact of cancer and chemotherapy is more like Russian roulette.

Remember the scene from 'The Deerhunter'? Apparently, today at 7pm, my gun has 1 bullet and 9 empty barrels. Others have much worse odds. It's 'will I, won't I?' every time the doctor walks into the bamboo hut and reveals a new piece of information. Being so tired and confused from all the pills and their side-effects, it's impossible to remain objective or maintain perspective about what's being discussed. It's pure mental torture.

Me looking at Trev's arse for the 7th lap
Dr Karmen has been well impressed with my ability to withstand industrial-grade PEB. There's no doubt that my Tour de Pokhara physical condition going into chemotherapy has been a major contributing factor to my resilience and rapid improvement (so far). But, in my experience, psychological condition and attitude play an even greater part. I'll read Lance's book to pick up some motivational tips for next time I have to pick up the revolver. I hope it's not all 'woooh-yeah- alright dude' septic style.

Move over Lance, because I plan to end up on Dr Karmen's office pinboard too. It's jam packed full of photos of her beaming survivors. I daren't look in her bin.

My nurses are absolutely wonderful. They have such compassion, respect and dedication for all their patients; every one of which has a different gun to their head, a different personal story, and a different state of mind. Moniek and I were heartbroken today; a pretty girl in a funky knitted hat was in the chemo chair next to my bed. She couldn't have been more than 15 years old. The energy and optimism our nurses create in the clinic, day in day out, through all the tragedy is truly inspirational. Today's tune is dedicated to them with huge respect.

It's also for Lance. He got back on his bike; I'm going to get back on my motorcycle. I doubt I'll become 7 times world champion, though. I can't even catch Trev on a track day.

Grab a tissue. This time you'll need it to wipe away dancing sweat rather than tears: http://www.youtube.com/watch?v=0L4Bonnw484

Thursday 17 November 2011

My eternal thanks to Ellie, Moniek, Ilse and Corine Wittens

Before reading on, plug in a decent set of headphones because there's something very special at the end.

The last few weeks have been the darkest, roughest time of my life. I was in real trouble: tired, skint and alone in Kathmandu, with no hope of finding my way to my family and closest friends.

Moniek (in the silver shirt), Ellie, sick boy and Ilse.
Corine's at home with her family in the Netherlands.
The Wittens family laid down everything to get me to the best doctors in Singapore. In pain, and unable to think for myself, this big man was as small and helpless as a baby.

They took control and continue to involve my family every step of the way. I thank God I've got them by my side.

I was told I have a life-threatening disease in my blood and lungs. They comforted me, dried my tears and eased my mind. The Wittens family know all about cancer. Harry, the father of the family, died of melanoma and a brain tumour in 1989.

I never met Harry but apparently he loved this song too. It's dedicated to Ellie, Moniek, Ilse & Corine with my eternal gratitude. And, of course, to Harry: http://www.youtube.com/watch?v=C-PNun-Pfb4&noredirect=1

Mo - it's your time to shine.

Cold turkey and ravioli sandwiches

Don't panic! I'm still alive.

It seems that this Choriocarcinoma bollockus really is exceptionally rare, so Dr Karmen has been consulting with international colleagues about my case. The larger of my lung tumours is a bit bigger than first thought (5mm x 3mm), and Chorio is a nasty little bugger, so they're not taking any chances. Maybe I'll make it onto the cover of Cancer Today or something (apparently the title's strapline is 'because there may not be a tomorrow'). The doctors will also monitor my brain in future for any previously undetected signs of normality.

Highly detailed pro/con emails about the possibility of 4 chemo cycles were considered by eminent scientists in Australia and the USA. Meanwhile, in a parallel universe, others were debating the toffee/chocolate dilemma in a tin of Quality Street. Eventually, consensus was reached that (a) 3 cycles of chemotherapy appears optimum for my case and (b) the gold coins are definitely bad for your teeth.

I had soundly slept or dizzily daydreamed through my first chemo cycle. I listened to a lot of great music, warmed and comforted by the fact that my family and friends were listening to the same tunes somewhere in a different time zone. My hands felt like two balloons and I had, indeed, become 'comfortably numb'.

The Chorio count in my blood has decreased again to 99.8, which is obviously great news, and the fact that there's even a decimal point involved gives me huge encouragement. I'm more used to numbers with a lot of zeros on the end. My blood seems to be in remarkably good shape, and Dr Karmen commended my 'best ever' tolerance for PEB chemotherapy. They say pride comes before a fall, and I now regret feeling so chuffed.

The de-tox from PEB has been the worst experience of my life. By a fucking mile. Torrents of burning-freezing sweat, hallucinations, knife-twisting stomach cramps, ice-pick headaches, oozing skin sores ... my body and spirit being torn apart. John Lennon described it better than I ever could: http://www.youtube.com/watch?v=n6wxTkkfLqM&feature=related

I'm OK now. I've bounced back, and Moniek made me ravioli sandwiches for breakfast this morning. I can deal with 2 more cycles, but some of the people I see in the clinic have been taking chemo for years - many with no hope of recovery. I really am a lucky by comparison. This beautiful song http://www.youtube.com/watch?v=MmkI--ZZ3xs by The Verve reminds me how fortunate I am.

I can't reply to everyone's emails, but I'm so uplifted to read comments from old friends, and that so many people share so much joy and inspiration from music. Today's bedtime song, a Paul Weller masterpiece, is for Mo. Turn it up to 11, mum: http://www.youtube.com/watch?v=hMoFzC6gEpQ

Saturday 12 November 2011

Weighing-in at 88.4kg - Round 5

Eyebrows were raised this morning as a stepped on the scales before my 5th, and final, round of chemo for this cycle. The deitician's prescription was basically my dream menu, and Moniek's family have been treating me like a king. Somehow, I've managed to gain half a kilo!

I don't need any pharmaceutical support for my white blood cells; my liver and kidneys are functioning well, and Dr Karmen is re-jigging my schedule for next week. I've got 2 days of rest and light exercise ahead, with a bit less honey in my tea. I couldn't have hoped for better!

Friday 11 November 2011

Punch drunk - Round 4

Yesterday's chat with Dr Karmen focused on my state of mind. She reckoned my brain needed to slow down, and prescribed some kind of horse tranquilizers - two before sleep. I managed a page of my book before all the lines blurred into one and I zonked-out for 8 hours of much-needed kip.

Moniek helped me shuffle out to the taxi, into the hospital, and back into my personal bed for Round 4. Small nurse mixed her potions and I slipped into a deep, peaceful sleep. I vividly recollect Dr Karmen shaking my shoulder to wake me up, and asking difficult questions. However, she was wearing a traffic cop's high-visibility neon waistcoat, so I'm not 100% sure if I got all the answers right ... 'errr, sorry, the clutch came out a bit too quick officer" etc etc ... or was it a dream?

After I had been properly resuscitated, a guy called David knocked and came into my room offering counselling and prayers. He's been riddled with incurable cancer for 8 years, and spends his days visiting clinics to fill others with hope. Everyone had warm smiles and kind words about him. We discussed life, the universe and everything for an hour. The flow of conversation was interrupted twice by my unstoppable flow of piss, but he didn't mind a bit.

Thursday 10 November 2011

He ducks, he dives - Round 3

Mental preparations at 7:30am for Round 3
Moniek, Ellie and I pitched up at Dr Karmen's clinic before the staff had arrived. I'd had a rough night, with very little sleep, and was actually relieved when small nurse told me I would be in the bed again. She seemed to know something I didn't.

My summary of symptoms was completely normal, and she already had the antidotes laid out on the bench. These girls don't miss a trick.

She opened my chest-pipe and primed me with a large syringe's worth of hiccup serum. With just one 'hic', I reckon I'm starting to build my credibility in this hidden underground chemo culture (it's actually on the 5th floor, out of the lifts, turn right, 2nd office on the left - the one with the wonky oil paintings and angel/cherub statues all over the place).

Mo & Ellie waved me a cheerful goodbye and went of for a nice walk around the botanical gardens next door.

As soon as the first drips of my cocktail hit my veins, I passed out. Small nurse woke me up every 40 minutes for a blood-pressure test, and precisely swapped my chemo bottles according to Dr Karmen's precise schedule. I had many vague pisses at vague times.

I woke up alert some hours later with a craving for U2. St Bono's lyrics in 'Walk on', 'Kite' and 'Sometimes you can't make it on your own' took on new meaning, and small nurse discretely brought me a box of tissues. Cancer nurses must see a lot of tears.

Macho defences down, in for a penny, in for a pound ... 'Time' by Pink Floyd massively influenced my life, and I've hardly frittered a day since I first heard it 25 years ago. Choriocarcinoma has made me shorter of breath, and God only knows how many days closer to death. I was pulling tissues like a magician pulls hankies from a hat. The segue into 'The great gig in the sky' http://www.youtube.com/watch?v=V7NyO9NPZbQ was divine. How those 3 women express so much about life and death in 4 minutes and 47 seconds - without saying a single word - I will never know. I'm just so glad they do. 
Wait 'til you see the main course!

Moniek, yet again, saved the day with her beautiful smile and a chilled pint of some healthy hippy drink. Small nurse said the big boss wanted to see me before I left, and my heart sank.

Dr Karmen studied my fan of papers on her desk and pushed her tortoiseshell specs upwards. She wants to consult with some eminent colleagues about my exceptional progress. I seem to be whacking Chorio so fast that she's considering reducing my 9-week programme to 6. Wow. Chorio must be KO'd, and we can't take any chances with an 8-count, but I don't appear to be a typical opponent. Even if I stay on the original 9-week programme, the fact that she's even considering this approach has given me a huge boost. Watch this space.

She enquired about my opinions on how this remarkable situation had arisen. I didn't need much time to think: 'I've got strong will-power, a firm faith in God, superb doctors and nurses, and my family and friends are cheering me on'. 'Hmmmm', she nodded in agreement, 'we should talk about this more another day' and shook our hands as we rose from our seats. Back at the apartment, Moniek fed me veggie burgers and switched on some film with Nathalie Portman in different ballet frocks - and I forgot about cancer for 90 minutes.

The time has gone, this blog is over, thought I'd something more to say ...