My cancer journey

Hi, thanks for coming here.  I'm Charles and I'll be your guide through my journey.  

I had a surprise in early September this year when what I thought was a routine check on my grumbly stomach came back with pictures of a tumour.  Stopped me in my tracks.  

So now my life is different, I am different, everything is changed by this presence inside me, unseen and mostly unfelt.  I have a fight on my hands now, not one I chose but forced on me, to beat this nasty, insidious, grubby, tenacious thing and return to life stronger, wiser and more perceptive than before.  I feel it’s almost a duty for me to emerge from this and not just appreciate our precious life more, but to look out for the compassion, the hope and the beauty that this world is built on and live fully and completely for however long I may be blessed to be around.

Does that sound trite? Well it is heartfelt but I’ll try to avoid bullshit.  I’ll share some of my cancer journey in the hope that may be of interest and may offer comfort and support to others affected by cancer.  And I’ll drop my thoughts on things around me and on events that prick my interest as we go along.  And a few photographs too.

Cheers & keep smiling

DIAGNOSIS


Thursday 2nd September 2010

Went for an Upper GI Endoscopy to see what’s up with my stomach.  Pretty painless & smooth, I needed to be sedated and the last I remember is the anaesthetist telling me it might hurt a little, and the masked nurse with beautiful, kind eyes stroking my arm to get the thick liquid moving faster.

Woke up a bit woozy and staggered to the toilet before the doctor came to explain the results.  Said he found a tumour which was probably cancerous and had sent tissue samples for biopsy.  

Didn’t see that coming, did not expect that at all.  That word ‘cancer’ - sharp intake of breath.  Heard him but couldn’t totally concentrate.  Cancer.  Shit.  Not what I expected.  Didn’t know what to think.  Did he really say that?  

Well I won’t need the camera up my bum now at least.

How do I tell Sooka, my family, my friends, what do I tell them? I don’t even know anything about this.

A million questions & thoughts already, jesus!

Went home and told Sooka and we both cried a bit - it’s scary, very scary.  But I need to be strong, for her and for me.  She’s my angel and I’ll need her a lot and I love her so much - how can I do this to her?

Friday 3rd September 2010

Didn’t sleep so well last night, too many thoughts, like a whirlwind, so I went downstairs and lay in front of the TV to take my mind off it all and soon fell asleep.  Sooka woke me up and brought me back to bed.  Feel a little better today, but bloody tired.  Need to think about normal things and focus on work and keep things normal.

Told my mother last night, so she’s worried, as if she needs more to worry about.  Told my sister too.  Is there a good way to tell people?  It’s an ugly fact.

I’m pissed off as much as anything.  I mean why? Why now? Why me? Why there? Why can’t you get cancer of the little left toe?  I’d happily lop that off. 

And that damn Sri Lankan fortune teller who said I’d live to 93.  He’d better be right or I’m coming to get my money back.

Maybe it’s just an alien growing quietly till it’s ready to burst out and lay waste to the world.  At least I could be a proud parent then.

Saturday 4th September 2010

Slept OK.  Really conscious of something in there, down there. Does it just fester or sit and take in the joys of life?  Every groan, bubble, discomfort now has a new, unclear, menacing significance.

It’s the Shanghai Masters International 7s Football tournament this weekend, and I’m playing with the Anzacs.  Really looking forward to being out with the lads and running around focussed on a ball.

Bloody hot, 33 degrees celsius, you’re half done after 5 minutes but with plenty of subs we got through to the Cup final round tomorrow.

Sunday 5th September 2010

Day 2 of the Masters.  Hot again.  Not much mastery in evidence frankly.  We’re down on numbers so subbing is getting harder.  But we make it through to the Cup Final against the Beijing Real Ancient

Wednesday 8th September 2010

Emailed the pathology report & photos to the Royal Marsden today, so now I wait for the consultant’s feedback and next steps.

Thursday 9th September 2010

I have cancer.  3 small words, hard to get out, spit out, wish I could shit out.  I have cancer.

I have cancer.  Yes, so fucking what!   Not invited, unwelcome.

Cancer has me.  Cancer has me to deal with. Going to make it regret finding me.

Tired, woke up early, brain swirling.  Cutting right back at work, will just focus on a very few key things to sort before we head back to UK.  Need to get personal stuff sorted.

Harder today, don’t know why.  Had to tell one more person at work, couldn’t get the words out, couldn’t look her in the eyes, fought against tears.  But once I did, much easier.

Strange feelings: feel angry, so scared, tearful, defiant, foolish, a failure for my lovely wife, regretful for the things we still haven’t done yet, for the things I should have done, strong, curious, scared.

Friday 10th September 2010

Getting to grips with this a bit more, feel calmer, not having the wild thoughts.  Been focussed on the regional conference this weekend in Beijing, takes my mind off stuff.  I’ve agreed with my boss that I don’t tell the rest of the team till after the conference.

Wednesday 15th September 2010

Back to Shanghai.  The conference went really well, the location was magnificent, in amongst the green hills about an hour from Beijing, right below the Great Wall which we all climbed in the sunny warm afternoon for a photo in a ruined tower.  Later, as the sun was setting we had a thin crescent moon rising over the wall against a coloured sky that was just breathtakingly beautiful.  So many people made a wonderful effort to dress up for our Heroes evening too.  We had the Red Detachment of Women from the Beijing team, a troop of firemen and glam firegirls, several nuns, enough nurses to man a field hospital, Ernst as a Chinese peasant farmer with his bamboo load carrier and a good supply of produce, and my favourite was the landlady from Kung Fu Hustle which Julia did to a tee.

Exhausted but happy enough to have got through it and with people wearing big, happy smiles as they left for home.

Thursday 16th September 2010

The company is being really good and helpful.  They want to take any pressure off me and let me focus on getting diagnosis & treatment sorted.  And my colleagues and team are being wonderful, being really encouraging and helpful.  One shared her own experience of a serious condition with me and she was so inspiring.  I took great heart from her example.    Telling my wonderful assistant Lane was hard too - I struggled to hold back my tears.

Waiting to hear back from the Marsden.  Seems to be taking forever.  Is this delay significant?  Will they not take me on?  Could it mean the difference between being early enough to treat or just too late? Christ, hurry up please.

Friday 17th September 2010

Got an email offering an appointment with the head of the stomach cancer unit at the Marsden, next Tuesday.  Brilliant, thank God!  Christ that’s Tuesday and it’s Friday evening here, how do I get a ticket sorted for Sunday or Monday?

Thanks to a very old friend I have managed to get tickets for Monday.  What a relief.  Now I have to pack - what the hell do I bring, how long will I be over for?  No idea.  Got to sort things here too.  Mad but on my way at last to find out what’s really going on inside.

Monday 20th September 2010

Glad to be going but feeling very apprehensive, at leaving Shanghai without knowing how long for, at what I might yet find out.  The flight seems so long before we reach Helsinki and change planes.  Gazed in wonder at the amazing sights of Siberia and the Russian steppes, and much later at the lakes and inlets as we approach Helsinki.  Got in a little late so it’s a nice quick transfer.  Back in UK very soon now.  Staying with my folks, very emotional seeing them for the first time after finding out.

Tuesday 21st September 2010

Up to London for my first appointment with Professor David Cunningham at the Royal Marsden Hospital in Fulham Road.  Sooka & my mother with me today.  

What the hell is he going to tell me?  I’m glad to be here and I’m impatient to know, but what if it’s bad? What if it’s too late?  Trying to prepare myself for the worst.  Don’t know how I’ll react.  Huge well of emotion seems to be sitting just behind me, ready to jump on my shoulders and bring me crashing down.

Go in alone, couldn’t handle Sooka’s reaction if it’s not good.  Have a list of questions written down.  Prof Cunningham is a very nice man, a Scot, gentle but matter of fact.  Quick external examination, reviews the notes.  Says it looks like it may be “localized”, possibly no spread but further tests will be needed to find out for sure.  

I can hardly believe what he’s saying.  That’s so much better than anything I was expecting.  I know it’s just an initial opinion but still...

Signs look good to him as I’m young (I love you already) and fit.  Treatment would probably be 3 cycles of chemo, then an operation, followed by another 3 chemo cycles.  All of that could take 6-8 months.  What???!!!  But that’s an age, does it have to be so long?  Speeding it up could “compromise your survival”. 

Survival.  Crash back to earth.  I need to survive this...  Not out of the woods.  Survive.  Stay alive.  Not die.

Tuesday 22nd September 2010

Get my schedule for tests.  Over the next 2 weeks I’ll meet the surgeon, have a blood test, PET & CT scans, a laparoscopy, an upper GI endoscopy, and then get the verdict.  Can’t wait to 
finish this.  This will be the longest 2 weeks of my life.

Friday 1st October 2010

Home after the laparoscopy last night.  Hate waking up from a general anaesthetic, feels like you’ve almost drowned and you’re coming up for air.  I am sporting 3 neat little holes in my belly, one right through my belly button.  Not painful at all.  

Saw the surgeon this morning and he said it had gone well and he couldn’t find any signs of spread.  He took a biopsy sample from a node on my diaphragm but felt it looked benign.  Let’s see.

Friday 8th October 2010

Saw Prof Cunningham this morning, the surgeon this afternoon.  

Whoop whoop!  Got about the best possible news, short of them finding a pickled onion (in my colleague Vicki’s memorable words) lodged in my stomach.  It is localized and they haven’t found any sign of spread.  So far - they’ll only be able to finally confirm that after the operation when they can get in and look at the site, and remove surrounding lymph nodes to test them.  And the biopsy sample was benign too.   My age & fitness give me even more chance here.  The Prof puts me in the top 20% for recovery and complete cure.  Thank you, thank you, thank you.  

God I hope he’s right.

Treatment starts Monday - blimey, that’s quick.  3 cycles, each lasting 21 days, of chemo at RMH Sutton which aims to shrink the tumour - it’s about 5 cm across (is that big?), there’s no way of knowing what caused it, could have been there anywhere from 9-18 months;  then a 4-6 week break to let  the chemo chemicals flush out of my system; then the operation, probably in early January if all’s looking good, and 4-6 weeks of healing & recovery; and finally I’ll repeat the chemo to kill off any remaining cancer cells.  

Was given a talk about all the possible side-effects of chemo, a very long list too.  Thank God they didn’t really register or I’d be worried stupid.  Just how much can possibly go wrong?  Apparently quite a lot if you get all of them.  But they say everybody reacts differently so let’s see what excitement lies ahead.

The surgeon told me a little about the operation: he’ll go in from the side of my chest.  Ready for that ribs?  Nice big cut, prize the ribs apart, cut the bottom of my esophagus and about a third to half of my stomach out, join what’s left up again, and bob’s your uncle...

I hear the operation is called an ‘Ivor Lewis’ procedure.  Sounds quite cosy doesn’t it, named after your local postman?  Well actually after the surgeon who developed it.

That’ll be some scar.  Big sod.  Wonder if I can get him to shape it.  Should I go for ‘Sooka’, or ‘MUFC’?  Or some Roman flourish?  Can I ask him to put some nice titanium replacement ribs in while he’s at it?

TREATMENT  BEGINS


Saturday 9th October 2010

Sinking in.  One month since I found out.  I know what I have, it’s not as bad as it could have been. I have a treatment plan, I’m going to get there and beat this fuck.   Vaffanculo!!!

Monday 10th October 2010

Big day - first day of chemo.   Here we go.  Spent 9 hours in the Marsden at Sutton on a drip.  They’re putting about 4 litres of fluid into me, 2 of them one of the chemo drugs, made with platinum.  That’s got Sooka thinking she might need to melt me down to extract the value before I dispose of it naturally. 


You sit in a kind of lazy-boy chair in a room with 6 other chairs, each in a kind of horse stall arranged in a circle so you don’t see your neighbours, only the 2 or 3 people in front.  Half expect the nurses to fit a bit in my mouth instead of the drip.  What’s for lunch - hay?


All that fluid coming in has to get out so the day is punctuated, increasingly frequently as it wears on, with visits to the gents, dragging my drip pole, bag and pump with me like a ball and chain.


It’s a really long day, and my session is longer than anyone else so gradually my fellow drippers head off until I’m alone with Sooka who’s stayed all day with me.  What a dreadful way to spend a day for her.

Wednesday 12th October 2010

Haven’t slept properly for 2 nights, waking at 3 or 4 am, heading to the sofa in the living room to read till I drift off again.  Feel like a lead weight all day but no other side-effect so far.  Can’t believe how many tablets I am taking a day: the chemo, steroids, anti-sickness, anti-acid.

Monday 1st November 2010

Wow, the first 3 week chemo cycle is over already and it’s gone pretty well.  Apart from the first week of sleep ‘deprivation’ I’ve been pretty good.  Hard to believe there’s anything wrong.  But I know there is, something deeply wrong.

So another day on the drip.  Sooka’s back in China this time so I bring a pile of books, but the crowd is great today and we have a load of laughs together about our collective misfortune.  One lady has an amazing wig, you’d never guess, so she’s recommending the maker to another lady who’s losing her hair in handfuls.   My hair’s still in place so far, not that I have much to worry about.  I try the ice cap they offer that’s supposed to protect your hair. It’s cooled to -18C they tell me.  Bloody cold at first but I soon warm it up.  Look like a prat though.

Tuesday 9th November 2010

Doing OK -ish on the chemo, but I can feel more effects this time.  Terrible taste, of metal in my mouth which ruins all food.  I’m completely off sweet things and can’t eat apples.  Awful sleep again for the first week or so, feel exhausted all day and at the slightest effort.     The veins in my left arm have swollen and become hard and painful if I so much as brush them.  It’s called phlebitis apparently.  Got some wonder cream to ease the swelling and pain.

Monday 15th November 2010

Last week of this chemo cycle and my battered immune system is recovering. I’m sleeping and feeling much better.  Still have a bad taste, which puts me off food.  And then I get sudden pangs of hunger, have to eat something immediately.  Feet are very sore too, like walking on broken glass - the cold weather makes it worse I’m told.  Have a cut on my thumb that still hasn’t healed after 6 weeks, that’s how weak my system is.

Funny to think that the chemo is a poison that's doing me good.  It works by killing cells. It kills the cancer cells, but it kills indiscriminately and zaps my healthy cells too.  Like a siege.

Tuesday 30th November 2010

It’s snowing!!  Absolutely beautiful, I haven’t seen snowfall for so long.  And there are still so many autumn leaves on the trees to add colour to the wonder.

Restless night, finished off dozing in front of the TV again.  Saw highlights of Barcelona vs Real Madrid: magnificent play by Barca, who demolished Real,  Even better than Man Utd vs Blackburn on Saturday.

All the news is about the Wikileaks revelations.  Not sure what to make of it.   Seems odd that so much attention by the US is focussed on Wikileaks as the evil doer and apparently so little on whoever actually stole the files - I’d say he’s the person who bears the responsibility, whatever the motivation may have been.  

  

Interesting to hear China talk of North Korea as a spoilt child - very realistic if almost innocent sounding assessment.  I wonder if China could see that if it could resolve the overall Korean crisis once and for all, that would probably elevate China to real greatness alongside the US.  If only China would have the courage to wield its influence without pure self-interest for once.  The world would have to take China extremely seriously then.

Saturday 11th December 2010

Woke early, brain fizzing. Feeling anxious about the review I will have on Monday with the professor.  He’ll have the results of my CT & ultrasound scans and endoscopy so we can see what the chemo has achieved.  Chemo was suspended two Fridays ago because of the side-effects (sores and very painful feet) - will that matter, could that delay the operation?  I hope not.  

What’s the prof going to say? I guess there are 3 scenarios: 1, the chemo’s done it’s job and shrunk the tumour;  2, no change, chemo didn’t do much; or 3, it’s got bigger and spread.  Number 1 please, please , please, please




Monday 13th December 2010

Had my review, the results are in and they’re about as good as I could hope for: the tumour shows clear signs of improvement and the associated lymph nodes also show significant improvement.  That’s a real relief, so now we move on to the operation which will be on the 30th December - guess I’ll be seeing in the New Year a new man...

In the meantime we’re planning for a quick trip back home to Shanghai for Christmas, a chance to get away from all things medical and to touch our real life again, the one we left behind 3 months ago so suddenly.

Thursday 23rd December 2010

We’re in Shanghai where it’s so much warmer than in the UK and in our home again.  We managed to get out of Heathrow on Monday despite the snow chaos.  Terminal 1 was a mess, with people everywhere. Still can’t understand how BAA were so poorly prepared for such conditions.  They had loads of snow last year, severe winters have been predicted for years now, and they say they’d spent large amounts of money to be ready.  Ready for what exactly?

Mongolia from 40,000 feet

How good it is to be surrounded by the little things that make up our life.  There have been times in the last few months where I have wondered if my ‘former’ life - no, my real life -  would ever come back.  This makes me believe quite firmly that it will.  I went into the office and saw my team too - wonderful to be with everyone again, they gave me such a warm welcome it was really heartening.  Looking forward to a quiet Christmas, just me and Sooka, not much in the mood for celebrating.

THE OPERATION


Wednesday 29th December 2010

We’re back in the UK after a very quick stop in Hong Kong and tomorrow is my big day.  Feeling really calm, not apprehensive at all - just want to get on with things.  See you on the other side of the year’s end.  HNY to everyone!

How Hong Kong does Christmas

   

The Star Ferry in a different skin

 

Tuesday 11th January 2011

It's my birthday today, 51 and counting.  And to celebrate, I got 3 cakes, none of which I can eat but I did have the pleasure of sharing them with the nursing teams on the Wiltshaw Ward at the Royal Marsden who have done a wonderful job with me since my operation.

So much has happened, and yet so little too since I last wrote.  Mostly a lot of lying in bed...  I woke up the day after the operation in the Intensive Care Unit in a druggy daze with 12 tubes poking out of me including one for breathing so I couldn’t speak, very frustrating.  Didn’t really know what was going on, but saw Sooka’s lovely face smiling anxiously at me which was reassuring.  Caught a glimpse of a whole wall of machines behind me, that I was hooked up to and thanks to the morphine I was semi-hallucinating that I was on the bridge of the Starship Enterprise...

Finally got them to remove the tube from my throat so I could speak.  Didn’t really feel any pain at first though they kept encouraging me to cough, until I finally did cough and boy... still brings tears to my eyes.  I have a nice vertical 22cm cut on my abdomen which would explain why of course, and another horizontal one the same length across the right side of my chest - very fetching, will do wonders for my modelling career.

They had me out of bed and sat in a chair for an hour and a half on the first day - amazing after such a huge operation and a step towards getting back to something like myself.  The worst thing about ICU was the feeling of almost total helplessness which I have never felt before.  I couldn’t get up or do pretty much anything without assistance beyond push the call button and read the paper.  Not pleasant when I thought about it but the nurses were all so kind and helpful, and the morphine soon had me floating away.  Whenever I closed my eyes I found myself immediately in a strange coloured open landscape, walking or running - I guess that was my desire to be free of the tubes and confinement.

I was out of the ICU on day 8 - one nice man in the same room had been there for 5 weeks post op due to complications, poor guy, so I did OK.  My tubes slowly came out, one by one, though the really irritating one sewn into my nostril was saved till almost the last; that honour went to the very large, long one in the side of my chest.

Friday 14th January 2011

I came home today, 2 weeks after my op and I can now say ‘I have no tumour’!!!!  God that feels good.  I know there’s still a long way to go but that is such a big step forward.  I’m knackered, time to sleep so good night for now.

Is this my new diet?