Tuesday, 1 May 2012

I'll be back

By popular demand, Twig & Berry has been revived! Stay tuned for post-chemo remission revelations - once I've figured out the latest technology "upgrades".

Wednesday, 8 February 2012

Elvis is still in the building

5am on guitar - the Elvis wig
could be anywhere
Elaine & Mat's fantastic wedding party kept going longer than any in the venue's history, and I was the last out of the bar. Moniek had to help me up the stairs, but it had nothing to do with chemotherapy.

My vision was blurred and wobbly the whole of the following day. Amidst all the confusion I'd managed to put two pairs of contact lenses in by mistake.

Mum & dad returned to Northern Ireland this morning, and the other happy couple are now on honeymoon.

I'll be kicking around for the next 3 weeks before I head back to Singapore. Anyone fancy a pint?

Thursday, 26 January 2012

Lip up fatty

Chips, mushy peas, lashings of salt and vinegar,
and a pint of Boddingtons... a guilty pleasure!
Three long months ago I discovered I had cancer whilst doing some sit-ups, hoping to squeeze into a suit I had bought in 1997. I'd persuaded myself that I'd look quite dapper at the wedding, because fashions would have come full-circle over the last fifteen years.

There's an incongruous British fish & chip shop near Ilse's flat. I'm normally a 'when in Rome ..." traveller, and quite scathing of the Brits abroad mentality, so I felt a bit guilty about my snowballing craving for a proper bag of chips. I dropped my principles and stuffed my face.

Incredibly, and with a warm feeling of poetic justice, I tried on my suit afterwards and it fitted! If there's a moral to this story, please write it on the comments page because I'm at a loss. In the meantime, http://www.youtube.com/watch?v=F6fQnTyEniM.

Monday, 23 January 2012

Budgie smugglers

Stuffing Trev up the inside on the F1 track
Trev and Janice came out for a week to (a) help build my strength and (b) give Moniek some much needed rest. It worked wonders, and we can't thank them enough.

Although I'm officially a tourist in Singapore, I hadn't seen much. Chemo was a seemingly endless cycle of medical treatment, leaning my head against taxi windows, and staring at Ilse's ceiling.

I had lost 28% of my lung capacity. My red blood cells, haemoglobin and white blood cells were all extremely low. This meant I had difficulty breathing, processing oxygen, and fighting infections. I was sick and tired of being sick and tired.

A local walk (well, shuffle) now starts my day before anyone else is out of bed. I worked hard to increase my energy levels before Trev & Janice arrived, and even managed to meet them at the airport.

"Slap-slap-slap-heeeeeeeed" near Chinatown
It was time for some sightseeing and a few beers. I wore my special Singapore Sling for the occassion. I nearly split my stitches with laughter when Janice referred to such underwear as 'budgie smugglers'.

We spread out a tourist map, covered a lot of ground, and ticked off many of the main attractions. I could feel my stamina building every day. Just walking over a footbridge without collapsing with exhaustion (or chafing) felt like a major achievement.

I was scheduled for lung and blood tests, plus a CT scan for tumors on the day of their departure. The respiratory doctor was 'very, very happy' with my jump from 72% to 83% lung capacity. Dr Wong pointed at my scans on her lightbox and explained that although two of the four tumours in my lungs had disappeared, two dots remained. Thankfully, my beta-HCG count showed that - for now - the dots look like benign scars and I'm still free of Chorio. The only bad news was that my cholesterol levels had spiked due to Trev's appetite for fried eggs.

During chemo, I was tested for everything under the sun on a continuous basis. The recent 10-day hiatus actually heightened the tension as we awaited the results. We have come to realise that such tests will be the new 'normal' for at least the next 12 months. It's going to have a big impact on our lives at many levels.

Moniek and Janice in need of more Singha beer
Moniek got me through the last 3 months. I've only got half-conscious recollections, but I fully appreciate the level of care I needed around the clock. Trev & Janice relieved the pressure for a while, and Mo slept for the entire week. She finally emerged to join us for a Thai meal and wave them goodbye.

The doctors have given me the green light to travel to the UK on the 28th for Elaine's wedding. It's been my #1 objective since I was diagnosed with cancer. The feeling of joy and relief is hard to put into words. I'm bald and weak, but I don't care - I'm getting on that plane!

As I mentioned in a previous blog, this song gave me comfort mid-chemo and the lyrics haunted me during cold turkey: http://www.youtube.com/watch?v=_cPxKq-gMDo&feature=related. It's one of dad's favourites. Rick Wright (who sings this introduction and also wrote 'The great gig in the sky') died of cancer in 2008. Trev now plays it with an amateur band at his local pub. I can feel a few pints coming on ...

Friday, 6 January 2012

Feeling good

I don't have cancer! Dr Wong has just given me the all-clear, and I'm now officially in remission. I'm physically battered and emotionally drained but, thank God, there is currently no Choriocarcinoma in my body.

I now need to re-build my strength, avoid any sickness or injury while my defences are down, and pray that the cancer doesn't come back.

I'm elated, but it's mixed with other emotions. I'm exhausted and relieved. I'm also deeply aware that many of my co-patients didn't get such good news today, and a sad feeling of guilt casts a shadow over my euphoria. There's also a daunting recognition that, although I've finished chemotherapy, huge challenges lie ahead.

Pour a drink, and turn today's song up LOUD!
In addition to today's blood test, Dr Wong gave me the green light to have a beer. Plus the obligatory health warnings about alcohol. But, as my dad maintains, you meet more old drunks than you meet old doctors.

I'm going to take Moniek and her two sisters for a celebratory dinner (Corinne's here too). They got me through all this and I will never be able to thank them enough.

Chemo is history, the future's a mystery and - wow - I'm feeling good. http://www.youtube.com/watch?v=h8tuTSi6Sck

Wednesday, 4 January 2012

The greatest comeback since Lazarus?

I'm happy, but DVLA won't accept smiles
I've had a good couple of days. Adopting my well-proven technique for shaking a hangover, I've purged the residual Bleomycin from my system. Mountains of healthy food have been washed down with rivers of milk and fruit juice. A couple of decent walks have re-built my strength. And I've pissed, poohed and perspired the poison from my frail body. Detox was completed by scratching and farting whilst watching a documentary on sharks. Normally I'd have a 'hair of the dog' too, but chemo doesn't come in cans.

There's a poncy spa round the corner offering holistic rejuvenation & purification at $200. It includes hot stones, whale music and smelly candles, but I think I'll stick with what I know.

My approach seems to be working. I had more blood tests and a status/strategy meeting with Dr Wong this morning. She said I'm doing "as good as we could possibly imagine". She gave me more jabs and pushed my final chemo session into tomorrow. There's still a long stony uphill path ahead of me, but I'm overjoyed and more determined than ever to stage the greatest comeback since Lazarus.

I was shocked when Moniek took this photo to renew my expired UK driving license. I'm a few kilos skinnier, with a black eye, and my anaemic bald head blends into the obligatory white background. It's OK, I'm just stuck in a moment ... http://www.youtube.com/watch?v=A_hw1xcfylI&feature=related ... but, in the meantime, I'll look for an earlier picture with hair. I have enough trouble with traffic cops already.

Sunday, 1 January 2012

Oh yeah ... you and who's army?

For more than 20 years, this rag-tag collection of recidivists have swerved their way through towns and sporting events across the UK - leaving empty glasses, full ashtrays, and a whole lot of confusion in their trail.

Remember seeing twenty-five rhinestone-jumpsuited Elvis look-alikes at a televised Edgbaston cricket match back in 1997? We made the 6 O'Clock news. Often imitated, never equalled. (Anyone got a photo?)

Just before Christmas, the boys lifted the atmosphere (and many pints) at the world darts championship in London. I would have given my right arm to join them, but it was full of plastic tubes in Singapore at the time. The following morning, Moniek bounced up to my sick bed with these photos.

They'd shamelessly plugged my blog with multiple world champion Eric Bristow MBE. The crafty cockney is grinning at their darts shirts emblazoned with 'Rick Magill's Chorio Busting Army'. I was quite moved and had to wipe away a few tears wiv me perked up right pinky.

Sincere and heartfelt thanks go out to EVERYONE who's lifted my spirits during my hour of need. You know who you are.

We've re-kindled friendships after my wandering in the wilderness for too many years. I've received gifts and cards at my bedside; a wealth of new music, touching messages of support, incredible acts of generosity; and a choice of sofas around the world where I can convalesce and think about what to do next. I'll never forget what you've done.

When it gets really dark, you can see the stars. Take it away, Tom ... http://www.youtube.com/watch?v=sjOsca6UXtg

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 cafĂ© 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.