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 Their previous chirpy welcomes have been replaced by compassion bordering on pity.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.

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"!

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.

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.

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!