Bad cancer days

James Cameron.  He's got a lot to answer for!   3 years.   Lots of MASSIVE blue people who go "ummm!" a lot when they're in a group.  Someone who looks a bit like Philip Schofield, with a 3 way parting in his head.   A forest that lights up at night.   (actually, that was pretty cool and i thought, very useful for reading in your tent!)   The tough nut 'ray ban aviator' sporting pilot gal - with a heart.   The gigantic suits of robot powered man amour that anyone can mooch about the Forrest in.   The guy from 'my name is earl' which, incidently, i think is one of america's finest TV shows, telling larry, "love this putter larry... i love this putter."   The seemingly non plussed earth people who i noted all seemed to be from one certain dominant area of the globe, (?) tearing up someone else's planet er, just like it was somebody else's country.   'Oooh, get down off that political fence, Christopher!'  The classic misfit hero in all sorts of misfit situations. The lab guys hate him. The big blue ones hate him. The big boss who loves his new putter hates him too! What a tosser!  Mind you, he likes golf and that's for tossers!   Even philip schofield hates him at the end!   Sigourny Weaver REALLY hates him... A lot!   But then she likes him... Yeah!

Then there's the crap, prdictable lines like, "hey take it easy, hot rod!" to the misfit in the wheel chair!   Whilst he's ordering troops to shoot up a rather large tree where blue people live, 'pip' Scohfield says, "thats one big tree... ok bring it down" patting his faithful pilot on the shoulder.   Later on he's whizzing round his flight deck, nonchalantly pressing the odd button, waggling a knob hither and thither and giving the most random but blatantly obvious orders like; "blow up all the stuff we talked about before".   "Look, there's tons of blue people over there, shoot them, that's an order!"   There was, "Keep flying"   We had, "let's kick some blue butt" the classic american 'go go go go go' and then the less military standard ones like,   "Excuse me but could you stay seated?"   "Button your flies!"   "ohi, no kissing in the pool!"   "You boy, where are your plimsoles?"   "stop running in that corridor!"    "Corporal, 100 lines... 'I must always be a chauvinist solider who says corny phrases that hick townies will just lap up!'   Or the classic..."Excuse me sir... Chicken or fish?"

All this, whilst wielding an olive green mug of coffee in his left hand!   Worst of all, he then blows up the goodies base and comes out with the line... "great job today... Let's boogie!"   Uuugh!   Saving the best till last... At the pep talk just before the final 'highland fling' (I've been to bonny scotland y'know! Oh yes!) in the big finale battle between the greens; sporting their futuristic weaponry and the blues; on their... Er... Flying 'godzuki birds' and armed with school sports day javelins... Schofield announces to his whole amassed hoard, "ok everyone... Listen... Liiiiiiiiisten to me, children.   Stop talking at the back! Right... Blow everything up, good luck... (wait for it...) he actually says... "Oh, and I would like to be at home in time for dinner!"   Holy smoke! What? Yer mum wants you in before it gets dark?!? You're not allowed out after the "(s)tree(t)" lights come on!?! Ha! (see what I did there?)

One film, full to the brim with corny, very 2 dimensional, half witted, oh so obvious, cheap one liners and cliched catchphrases.

Uuugh... 3 hours... I hated it!

Still... It could've been worse.   It could've been littered with adverts... Oh yeah.   It was shown on Channel 4, weren't it?... It was!   In excess of 3 hours 30 minutes then.   

Still could've been worse... Could've been squabbling with the mrs all morning and not have the energy to shower untill waaay into the afternoon... Oh yeah... I was... 

Still, could you imagine if i were to completiy chuck my toys out of the pram and then be too ill to scream and storm out of the house... Oh yeah... I was!

It could've got even worse.   Could you imagine if the russian had got so fed up with me (and rightly so) that she'd rather not talk to me and decide that better than sitting in silence, put on the hard disc recorder and play back a nigh on four hour epic with big blue people in it... Oh yeah... She did!   

As soon as she highlighted Avatar on our Playlist and hit 'Ok,' my heart sank to unrecoverable depths!   (did you like my film review by the way? Safe to say I won't  be watching that film a second time... EVER.co.uk)

It's not all beer an skittles, this 'being off work for way over a year' thing.   What I've got at the mo does have its drags, let me tell you. There are some very low days indeed.   The russian and i call them bad cancer days.   Watching the most over hyped, predictable, flat film that I've seen for many a moon, sat for the best part of 4 hours next to someone you love dearly but right now just want to hurt a little bit, on a very grey Easter Saturday with slightly salty pits and knowing you're too Ill to storm out of the room let alone the house was one of them!

Baaaahh!!! 

Still... Could be worse...............? 

Hello friends, family, dearly loved ones... (that's all of you!) and distant associates... (just incase there's a knob head or two reading!)

How are we all?

Well well well... Here we are then.   Back from "shotlandia" a long time ago. (well remembered from the last blog, if you did!)

The last installment was very exciting for me and I really relished writing the opening passage about being on the train.   We really got a holiday feeling and both really enjoyed being up there in one of the most beautiful, idyllic, varied, engaging and spectacular areas of our country... Aberdeenshire. 

The mistletoe treatment I recived actually combined with the closest thing the Russian and I have had to a holiday for a very, very long time and was all together enthralling, relaxing and most of all recharging.

The treatment went realy well and was so, so much easier on me than the conventional methods and chemicals.   Rest easy friends, I'm not now a carrot crunching, pork fighting, oil tanker invading, spiritualist, doctor despising, self help idealist.   Oh no.   Well, sort of...   A little bit.   There's great bits to be drawn from both conventional and the alternative camps and we learnt that on our trip.

I'm so sorry that it's been such along time in updating everyone.    It's been a bit of a crazy situation here.   Good days. bad days, miserable days and strangely the odd almost great day here and there, more recently, believe it or not. 

It all started the weekend we got back from 'Шотландия'  Or as we all know it... Come on everybody, all together now... "SHOTLANDIA"

Towards the end of my stay I was getting funny visual sensations in my peripherals.   As time went on I decided that it was best to consult with my, er, consultant.   Sadly the day we were going to see him the vision distortions were getting worse and I fell quite heavily reaching for the bed post knob whilst trying to steady myself.   Because of the effect in my head the bed knob was some way to the right of where it appeared to me and my hand completely missed it and I went down in instalments, crashing to the bedroom floor.

Needless to say, the cancer in my head was growing again and was putting pressure on me brain.   Thus proving the existence of one (HA! mr swan in geography!   Why a PE teacher who could tear a rugby ball in 2 was allowed to teach us anything else that didn't involve organised fighting/bumming/egg chasing is beyond me!)

So new chemo and steroids required then... (read the old blog about steroids, last year if you haven't already! Woohwiee here we go again!)

It's very upsetting to be back on chemo after such a long time of recovery.   I know I was told things were bad again back in feb, hence the trip up north.   It's very sad to know that I'm back to not understanding my body and being very unpredictable about plans and seeing any of you guys.

The worst was to come.   After being released from hospital there were times I couldn't even muster the coordination to walk or climb stairs.   Help was required on a permanent basis either from the russian or my mum and dad.  There was one Sunday in particular when I was on a visit that had to be cut short due to a sudden outbreak of nausea.   I was taken home in the the car but when getting from the motor to the house I needed to be literally carried in by my super mum!   Both my legs just gave out and I lost the power and coordination to walk at all and with both arms around her shoulders i very nearly dragged my poor mother her over in the drive.   

Every week I got a bit better but to be that reliant really took some getting used to.   Eating, drinking, fetching the smallest things.   Impossible.  I really had to be waited on hand and foot.   Sounds great?   No way!   Having to wait in your bed in hospital at  3 am for a nurse to take you to the loo.   Having the sides clicked up on your bed so you wouldn't fall out of it.   Worst of all, taking 16 minutes to write "I love you twi, no, tow, no twe, ah! twk. Twl. Aww come on "l luv u 2" to the Russian in a simple text of an evening.   I h8 txt speak! Lol!  Aaah! 

It's hard.   You make a plan and then boof... It's out the window!   I know any of you lot understand but it's still upsetting for me.   Especially now I've lost my independence.   Completely!   That's why we're having more bad cancer days that usual.   I can never be on my own, even when you want to be and sometimes feel crap.   The worst part is never knowing where and when you'll be bad.   Puking on someone's carpet... Sorry sam and maz... Throwing up over the washing up in the sink... Again... Sam... Maz... I'm sorry about that... Or peeing in the garden over the lavender and tomatoes... 

Well that episode had nothing to do with chemo, that was because we were stargazing through a telescope and I didn't want to go in, pee and have to wait 20 mins for my eyes to readjust to the outside again.   With the garden's owner telling me, "yeah sure, go for it anywhere... NOT THERE THAT'S THE LAVENDER... NOT THERE EITHER THAT'S THE TOMATOES!!!"   Uh,! Next time, sam... Just say no... And maz... IM SORRY AGAIN!  

So unpredictability is back in my life...

Since then, I've been admitted to hospital twice.  Once for the giddiness and vision and once for a virus that both the Russian and I picked up.   High temp, aching joints and nausea.    Pleasant.    She was so bad she didn't have the energy to drive to hospital and see me!   Poor krorova!   (Russian for cow... Honest!)

So.   Ups and downs... What are you gonna do, eh?   

Roll with the punches I say.   So we have.   I'm now taking twice weekly mistletoe injections and Dr Geider in Scotland... or as we know it in Moscow... 'Шотландия'... He has managed to get me up to twice weekly 20ml size injections.   What do you reckon, Pamela?  Eh?   That's after having 160ml infusions as well!   Woo hoo!   

Sorry everyone, just some mistletoe chat between us mistletoe guys!   Oh you know what we're like... We're crazy, we are!!!   Ha ha!   Right Pam?   Can I call you Pam?   No?   Ok.

So... Er,

Things have been tough, unpredictable and at times... If Easter Saturday was anything to go by, massively infuriating!   Its tough for me and my unit.  Ma... Pa... The ruski!

Today for example.   I was flying high, feeling good.   Really good.   When you know you are up you have to be ready for a crashing blow from the hospital.   It can happen anytime and it's very easy to let your confidence build at home.   Its also nigh on impossible to detect where the next curve ball is coming from.   Now I know that the hospital is there to fix me, not to crush me.   The people in it are amazing.   Some really are beyond amazing and the level of care is fantastic.   Knowing the old Kent road as well as we now do is a giant bore.   The smell of floor detergent pisses me off and seeing people passed out or head in hands or simply struggling to get out of the lift can be quite upsetting.    

The hospital can throw you a curved ball from time to time.   I arrived home today, for example, sporting a natty pair of green hospital troos, my jeans full of piss, after having to poo in front of my friend and nurse, Ferdie, who is as camp as a row of pink tents... More energetic than the Duracell bunny... Funnier than Eddie izzard on helium...and when it comes to anaphylacdic reactions to treatments is as on it as a fighter pilot and sharp as a tak when your skin starts to itch all over, your tongue and airways are starting to swell and suddenly realising that i was sat only 2 foot away from a heart attack adrenaline stab injection!   Quite a day.  Hmmm... Quite a curve on THAT ball!

The story goes thus.   In for regular blood test.   Go home.   Told to come back for platelets.   Fair enough.   Get back.   Get a pool of platelets on the go really quickly, great.   Plus they only take half an hour to be administered.   Dad turns up with a sandwich and after first half a tuna mayo sandie my tongue starts growing, my whole body from head to groin starts itching like red ants are everywhere and my throat is going weird.  

Funny story this... 

So I call a nurse back and she realises I'm having an anaphylacdic shock to the platelets, something I've had given many times before.   Holy moly.   Things are kicking off so the nurse injects an antihistamine called piriton and some more, wait for it, steroids!   I know, having had piriton IV before, that it makes you drowsy and stoned like.   Don't ask me how I know... Er, I have friends in the music biz, your honor!

So now I'm in pain cos I've scoffed a tuna sandwich too fast, my tongue feels like I've been eating stinging nettles, my wholes body feels like I've got crabs and ferdie is sticking oxygen pipes up my bugle to help me breathe.   Then I get an instant hit from the piriton and wooo, whoa... The we go... Zzz uh? What? "ow, Ferdie, my chest hurts, I think I've got indigestion from my sandwich.   Can I have some pink stuff, gaviscon or whatever it is?"

He just looks at me... "ok maybe"

"it really hurts.   Can I have it now?"

"yeah in a minute.   I have to wait here with you now."

"uuuh? Ok."

So its the old wait here line, eh?  Not adding just incase I have to stab you in the heart with adrenaline then!   Well... Whether it was indigestion or my pipes tightening up or indeed a heart attack, my cause wasn't helped by the fact i was sweating like Rooney in a maths test and saying just how much my chest was hurting!   

So the wee and jeans bit.   Well more comic farce than medical drama.   Read on at your peril or simply skip to the line of + signs.   Now.   One thing about being in hospital I've learnt is that once the curtain is drawn around them, a private chat with a doctor, or a personal procedure with a nurse is just that... Private.   No no and thrice no!   It is simply shared around the ward.

It's so easy to determine whats wrong with your fellow bay bedders.   All you have to do is wait for their doctor to come round, draw the curtain and talk about poo, bums, 'how's your lump behaving?' and the best one... 'I just need to stick a finger in your bum... Oh no reason!' all at doctor volume.

So imagine sweating perfusley, holding your chest and spinning out on the good stuff trying to tell the now chatting nurse and doctor you need to poo.   All of a sudden.   Right now.   Er.  

"Guys.    (whisper)   "I need to, er, poo?   Now."

"ah, can you wait  (loud doctor voice, 6 other people in the ward) Your blood pressure drops after you poo so we would ask you to wait."

"ok" I whisper.

So they bring a commode, just in case and tell me to hold on if poss....   No.... Not poss.   Not poss at all.

So, waiving my towel and signalling at my four wheeled friend I make a move and drop the jeans!   Young pretty doctor legs it, dad and nurse help me up and guide me to mobile throne to make a call.

Don't worry I won't go into detail but mid way through I could hear the drrr drrr drrr of pee hitting bowl.   Fine.   Boy I was relaxing now.   I was still a bit stoned from the piratin but calming down and coming round.   Only to look down and see the commode bowl not fitted properly and the drrr drrr drrr of pee filling up the back left pocket of my jeans!!!! Socks and shoes took a hit too!   In not such a behind the curtain whisper, infact in more of a completely forgetting where you are, boom, I noted to my father...

"dad, DAD... I'm pi??ing into my bloody jeans!!!   Look at it, all over the back of my shoes!!!    Aww no!"

Not that you really needed to guess what was going on back there after the doctors told me to stave off a poo at 120 decibels and then later on your treated to that unmistakeable sound drrr drrr drrr of urine hitting surfaces that it shouldn't be.   It makes you lean your head back, close your eyes and your shoulders drop as you realise that's gonna take some clearing up!    Drunkards, parents and parents of drunkards know the feeling!   If it's happening to you, you sometimes just stop and enjoy the moment.  All that's happening now is that the puddle's getting bigger and you are SO far past the point of no return!

+++++++++++++++++++++++++++++++++

Like I say guys, roll with the punches...   Just rolling with the punches.

It's easy to say now, lying on my sofa.   Fed, watered, recouped and showered.   I've even got my dressing gown on.   As cosy as can be.   I can laugh about these things and I think you have to.   It'll be about 50 years time when I'll be doing it for real.   Relying on son or daughter to get me to bed or take my pants off.   Maybe my beautiful russian wife too.   Certainly not my beautiful, young Russian fiancée and nor should it be my parents for the second time around!   Not fair in the slightest!   

It's an unnatural cycle to see the young one in the treatment chair on the day ward.   You see a few.   It's never right.   They are the ones my heart breaks over the most.   Also the people around the chair.   The fiancé and the parents.   Sisters and brothers.   Friends and family.

Still, I find that the classic joke about the philipino for thank you has 'em rolling in the aisles, ill tell thee!   The real word is salamat but I say... I say... Get this... I always say... Salami...?    Instead...  Eh eh?   Come on.   What d'you reckon... It's a classic.   Used it today, went down a treat!   Even the cake was in tiers... Eh?   Eh?   Salami...   They did laugh, some of the other patients. It could've been the salami gag or the fact that the "DAD DAD IM PISSING INTO MY JEANS!" bloke was walking out of the ward in green Barts hospital trousers and slightly moist trainers!   

"love this putter, Larry... I love this putter!"

X

Clikerty clak... clikerty clak...

My environment is gently bumping and rocking.   The brown/grey ballast is just a dusty streak.   Overhead power cables skip from pylon to pylon.    The shiny topped rails remain constantly fixed in their parallel grip.   Trees flicker past and the flat countryside seems to twist about my window as we speed across it.    Sidings gently swing towards us and then their rails cut under the carriage as they meet the main line.   Occasionally we jump over level crossings and float across rivers.   Platforms pop out of the ground, wobble alongside for a brief moment and pop away again.   The last one was Peterborough I think.   Way off in the distance I can see a gaggle of power station cooling towers having their steam slowly ripped from their tops by the passing breeze and then suddenly… WOOMP WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR  WHRRR... WOOMP! Makes me flex back a little in my seat.

Can you guess where I am then…?  (apart from just north of Peterborough!!!)   yes that’s right.   I’m on a fast train piling north up the country.   For the train spotters amongst you, it’s a twin loco 125 class HST (high speed train) numbers 43097 and 43134 with 13 car’s comprising of 3, first class and one buffet car.   I actually have 2 such sets with my model railway.   Of course having purchased my HST models way back in the late 80’s they carry the British Rail ‘Intercity’ swallow logo and colours.    Now a days I’m surprised these trains don’t bloody scrape by as they pass!   These comfortable, smooth yet elderly coaches must be at least an inch wider each side with the amount of paint that has been daubed on them over the years!   Since the privatisation of our old government funded national rail service these trains have changed hands like a set of old Ford Mondeo’s between camel hair clad dodgy car dealers.   Private companies keen to get their gaudy colours down the side and charge you a fiver an hour for wi-fi access (!) come, make a hash of it and then get bankrupt and eventually flog the lot on.    Then another chancer spins the roulette wheel whilst dreaming up another colour clash (“err… guys, how about pink windows, yellow wheels and green doors!?!) and reaches for the brushes and tins!  

One thing I didn’t mention in my wistful opening was the twit with the booming voice who is sat right behind us having conversations with anyone who will listen to such exciting anecdotes like; giving his mum a spa voucher, the architect who had is e mail as .com instead of .co.uk, the garage door that needs to open ‘into’ the garage on the plans, the best way to claim money back as over time rather than bonus and a mate who hasn’t sold his boat yet!!!   And of course we know thanks to his extensive conversations that he’s getting off at Newcastle…!  AAAHHH!!!!

But… hang about… what’s this..?   as I peer back between the seats..  I can see the pages of the ‘specialist’ magazine he’s reading!   Yes, yes I can see it’s a publication of the more ‘cultured’ variety for the more er, shall we say ‘lonely’ man.   Its littered with pictures, giving no doubt as to the nature of his ‘hobby’ mag!   I can’t believe he’s got the audacity to read it in a public place.   I promise you that this is absolutely genuine, as I report on what I see.   The guy behind us, ‘mr chatter box’ is calmly, as if it were a normal thing to do… thumb through the pages of a model railway magazine!!!   He’s just like me… a model rail enthusiast… only unlike me doesn’t mind people, especially attractive girls, knowing about his passion.   Obviously it seems that I’m bearing all on this page about my own model rail facination but I’m amongst friends, here, right?!?  Unbelievable!   I can’t resist another peek back…  “cor look at the livery on that!!!   She’s got a crackin’ set of bogeys on her!!!   Phwoor, look at the rail’s on it!”   Ha!

Oooh, here we are at our first stop, York… an hour and fifty minutes up the road, sorry rails!   But hang on a minute…   where are all the people on the platform trying to sell you carpet, or lease an elephant, stirring a dubious looking concoction in a dustbin on wheels, or wanting you to take an interest in the snake in a basket!   Oh yeah, now I realise…  we’re not in India.    Hold up… the station’s moving backwards… nope.   It’s us, setting off and heading for the Scottish border, once more.

Ah, Scotland or “shcaatlandia” as the Russian puts it to her mum on the phone.   To give it its proper Russian spelling its Shotlandia.   Why Scotland?   Well it all boils down to my current situation.   Sadly, earlier this year, my doctors in London told me that things weren’t looking so good.   My blood results say that things are growing again…AGAIN! AAAH!   The high dose chemotherapy got me back to zero counts but since late December, early Jan my counts started to rise.   So I needed scanning to find out the location of my regenerating ill’s.   The technique used is known as a P.E.T./C.T scan.    It basically involves me being injected with radioactive glucose, leave it to spead for a while and then scan my body to see where any active areas of disease ‘light up’ with activity.

The best result we could wish for is a single location, preferably in my abdomen, to show the only sign of activity that can be specifically targeted and worked on.   Either with a blast of radio therapy or a quick swipe from the surgeons knife.   Alas the results show there are 3 active areas.   One in the abdomen, one in the lung and a new thing showing on a couple of ribs suspected to be either a new growth or a cracked rib.   No new aches and pains for me sadly gives me the worst probable outcome for that little bugger!   So as my doctor pointed out there are other drugs he can give me but there’s a good chance they would just make me ill with the same outcome as all the other drugs I’ve had:- good initial killing of cells but a re-emergence of growth after the drugs have run their course.

The one option I put to my consultant was the alternative mistletoe therapy available to me at a private clinic in Aberdeen.   Thanks to a contact given to me by our friend’s mother, Pamela and with Dr Shamash’s blessing, we have had the opportunity to jump on the train for the 7 hour schlep to the east coast of ‘Shotlandia’   I mentioned this opportunity earlier last year in one of my waffle blogs but now the time to give it a shot is suddenly upon us.   I spoke at length to my consultant on Monday afternoon and by Monday evening, after a chat with Dr Geider (Dr mistletoe) we were Aberdeen bound.  

We’re staying on site at the Camphill medical centre in one of the self contained apartments, 6 miles outside the ‘granite city.’   As far as we can work out we’ll be away for approximately 2 weeks having an intensive course of mistletoe.    According to the web site, (have a look if you fancy www.mistletoeforcancer.org.uk) there’s plenty to see and do up there and I should be well enough to enjoy it.    The theory behind this treatment is that cancer sneaks up on your immune system, which is unaware of anything the matter.   It’s a poison that can administered in a number of ways and brings on reactions that kick start’s your body into fighting back.   The way chemotherapy works is to decimate everything indiscriminately wiping out the good and the bad.   Please check out the mistletoe web site and see for yourself.   The centre is private and has a charity scheme set up, which you all will not hear the end of when im all fixed and singing its praises!

Mistletoe works with some of your bodies systems and can often make you feel much fitter and healthier.   I have been told that there is a number of days that I will be off and hopefully be well enough to get about a bit.   Great compared to the soul crushing confinement of a hospital.   There are walks on the nearby river Dee and the opportunity for some drives into Scotland’s beautiful interior plus the Russian is keen to visit Edinburgh, the capital, for the first time.    There’s even plans a foot to make it over to the famous Loch Ness to try my hand at ‘Nessie’ spotting.   We’re hiring a car for the first week and seeing what’s what.   It’s Thursday (16^th) today and we are due in to Aberdeen at 17:10.   The train left London at 10 this morning and there are no changes all the way through.    There’s plenty of time for the future ‘Mrs’ Russian and I to sit, reflect, daydream out of the window, work on the ‘puter’ (in her case) and scoff the offerings of our raid on the M&S food hall at the station…. Hmmm avocado salad, very middle class!

I’m sure they’ll be plenty of time in our little Scottish condo to report on my progress and let you know if I did manage to get a snap of the Loch Ness monster!   I may even stick up an old blog about my day at west ham vs Millwall that I was gonna report on this week until I got more crappy news from my quack!

I’ve still got my chin up and we are both looking forward to a chance to escape the London life for a while.   My ever devoted parents are following us up to join us on Monday.   I will be able to report back about how the team are getting on and what sort of time scale we are looking to spend north of the border, once I’ve consulted with my new doctor.    I also heard David Cameron was in Edinburgh today, trying to persuade the Scots to not form an independent country.   I might join him for support.   He’s claiming we’d all be worse off un-united and I agree with that opinion… we’d have to abandon one of the most beautiful flags in existence, the union flag, for starters!!!   Can you imagine…?  The UK having a different flag…?    Impossible!

And on that burst of nationalistic fever I leave you with the grammatical horror that is starting this sentence with the word ‘and’ er, and bid you all a very good day.    X

The fight goes on!

Hello again everybody,

Sorry for the delay between my writings.   As you may or may not know I recently received the dreaded news from my consultant that the b'std inside had reared its ugly head YET again... A persistent little bugger!

It has hit us all very hard as you can imagine, especially after a very special and excellent festive period for the future mrs Russian and I! (for those that don't know, I was having dinner with the russian's mother, brother and my ma an' pa when I was carrying in a tray of starters, accidentally fell to one knee, and suddenly found myself asking her to marry me!   As luck would have it, there just so happened to be a 6 claw, white gold, 0.6 carat, triple excellent cut diamond ring in my right pocket... So that was nice... Her response was the usual standard reply to anyone they are madly in love with... "oh, I can't believe it... No no no.... No no... Oooh, Chris, the roast potatoes are burning!"   She did eventually say yes and our potatoes were saved!)

I did promise the Chris Ivin blog 'Christmas special' earlier but it sort of hit the cutting room floor, ie, didn't get finished because of the massive deflating body blows I took from my consultants bad news.

The current news, that is hot off of the press and straight from the hospital is the results of my P.E.T. Scan and the MRI scan of my swede.   The news is that the size of my tumours in all areas have shrunk according to my CT scan.   A pet scan marries up with a ct scan. A pet scan involves me getting an injection of radioactive glucose which makes any active dividing cells 'light up' on the scan and they can see which areas are active.   The conflicting and confusing news is that as well as reduced size NONE of the areas have showed signs of activity.   But my dreaded tumour marker blood tests continue to rise.   We and they (the doc's) are stumped by this news.   I dont know if this is really bad news but it is certainly very perplexing.

I want to really thank everyone who has sent many messages of support in this low time, thank you so so much.   Again it is humbling, remarkable and always amazing when I realise just how many people out there are really thinking about me and i can feel the super power of everyone's well wishes and prayers.  They really keep me going.

My way of thanking you one and all is to get better and get out there and see you in the future, healthy and happy and when i start enjoying my life with my fiancé! Wooh!

For now, guys, the time from the Russians birthday on the 14th of December right through to the beginning of the new year We have had a great time.   We were looking toward the future together with a new hope.   We are still looking toward that future but after a  seriously scary meeting with my doc we now realise that the road of recovery has been littered with quite a few rocks and boulders.

Never fear the chin is still very much up. I need to accrue things to keep my mind distracted in the near future.   Hence the reason why im down in Bournemouth this week, with the russian, doing my part to sell very bright, shiny dresses to some very bright and shiny, sexually ambiguous ladies and gentlemen!   As the picture below shows her hard at work.

But for now I will sign off by saying that the battle goes on and my chin remains held firmly aloft... thanks to you lot out there, thinking about me and my support group!

I want to see you all as soon as its physically possible.   I love you all! X

There's Great News... Good News... And Bad news...

Hello good citizens of blog city…    Captain red pants here to save the day…   flying capeless around the good city of blog, in my bright red pants and blue ‘swimming pool attendant’ flip flops…   ridding the city of any wrong doings, such as, running, pushing, shouting, peeing in the pool and above all…   the worst crime there is… heavy petting!!!   (I refer you to my skinny picture of me in my last entry)

So…   who wants to hear my news…?   Ah?   And in what order do you want it…?   Eh?   Some folk want the bad straight off the bat… “give it to me now!”…    others prefer the softer touch, with a nice cushion of good to soften the bad.   Now this, not being an interactive service sadly… I don’t have any expensive 0907 numbers for you to dial to vote in an order of news…   this isn’t the ‘X tractor’…   you will just have to face the news as its given…   so…   we start with the great news first…

Last Monday I was told by one of the doctors the amazing news… dahn dahn daaah… I HAVE NEUTROPHILS… YEEEESSSS!!!   IVE GROWN SOME…   IVE GOT SOME… ALL 0.2 OF THEM… WOO HOO!!!   Well… if I played my cards right, I could be out of here in the next few days… maybe Friday (25^th)…   remember, the magic number we are looking for is 0.5 for release… (a normal level in a well person is around 5, by the way)   So… that’s exciting… woo hoo!!!   Great news!!!

Then a few hours later came the good news…   Around 3pm I was seen by Dr S, my consultant, on his usual Monday afternoon ward round.   I was with my folks in the day room, writing the last blog, actually, when one of the docs said ‘HE’ was waiting in my room to see me.   So the Russian and I made our way back to side room 10 to see the main man, the big wedge of stilton, le grand fromage…   I was so happy about the neutrophils news that I was thinking of how to joke about it and generally pratt about with him in celebration of the fact that if the levels climb as they should I could be out and home by the end of the week!!!   Yessss…   So, I walked into my room and warmly greeted all the people that were there waiting for me.   Dr S struck up,   “well, I’m sure your more than aware of the neutrophil levels being at 0.2…?   we’re very happy with that… so…  I think we can send you home…TODAY!!!!”

“WHAT???”

I was stood up at the end of my bed… and with this news duly dropped onto me I found myself sitting down suddenly in sheer disbelief…   all gags, gaffs and smart arsed remarks deserted my thoughts… which were now preoccupied with things like… “but im only at 0.2… how are we going to get all my stuff home tonight?   Mum and dad ain’t got their car today… surely it cant all fit into the Russians ‘T34’ tank (its actually a smart car but generally built the same and just rides just as hard!)… what about food… we’ve got 2 cats, shall I stay away… shall I stay in one more night just to make sure the counts are on the up?... what? If? Who? How? When?...

I sat there, looking up at the doc in disbelief and watching his mouth opening and closing as he talked about… er… stuff I suppose… I couldn’t hear anything except someone telling me I was going home… TODAY… this afternoon… over and over again, in a very familiar voice… my own… in my head…

“…and lastly, of course, you will have to wait for all your home meds to be bought up from pharmacy too.   Ok Chris?”

“Uuugh..?   I’m sorry Dr Shamash… er, could you repeat ALL of that, for me please?”

So by 7:30 pm I had been given all my drugs and was walking out of side room 10!

Home!!!

Now for the bad news…

One of the things Dr S had said to me whilst I was being deafened by my own thoughts was that because I was still at risk from infection I needed to come back to the hospital every single day for blood tests to keep a very close eye on me.   We were cool with that… in fact I was more than cool with it.   Why?   One of the worst things about being home after hospital is the irresistible desire to get back in touch with normality.    One of the most frustrating things is being bored in your own home because there is nothing that you can do.   Its right there under your nose…   everything you own and collected in your life is waiting for you to use or play with.   At level best all I’m fit for at this stage is watching films and TV but really I want to cook and work in the garden and (believe it or not) help around the house… simply empty the bin or unload the dishwasher…  but no!    My best efforts ‘gang aft agley!’ to quote the poet, Robbie Burns… ‘go wrong often.’   A simple task like standing, well there’s a challenge for a start and stairs… bloody hell… don’t talk to me about stairs… let me tell you, coming down is a lot worse than going up.   From the few marathon runners that I’ve spoken to in the past, it’s the going down stairs that’s the killer on your lower thighs.   It’s currently the same with me, having not used stairs for five weeks!!!

So… here we are, 13 hours after leaving it, my pop’s and I are back at the hospital.   bright and breezy.   Its now around 11am and we’re sat in the St Bart’s café having a nice cuppa and a reasonably warm cooked breakfast.   (nowhere near as epic as the one I blogged about back in Febuary but not bad for one of those ‘all day’ breakfast’s that really has been there… ALL DAY!)

The phone rings.   It’s the day ward calling to tell me the results of today’s blood test… this should be good.   Gary on the ward who was let out the Saturday before me had something like a day at 0.1 the next at 0.3 and the next was 0.7 when they let him home.   What was mine gonnna be…?   Well, I’m already starting at 0.2 so lets assume its jumped a minimum of 0.2 again so I’m gonna plump for at least 0.4 or even the magic 0.5 number…

“hello, yes hi… yes white cells 0.3, same as yesterday, ok, haemoglobin 12, not too bad, platelets 14, good… and the neutrophils…?”   “ZERO POINT ZERO…”   “you’re quite sure of that,  0.0?!? … yes… ok… I don’t need any transfusions of any kind today so I can go home…thank you.”

Can I really go home?    I’m back to square bloody one here… 0.0, how can that be?   I’d better leave a message with Dr S to see if I need to come and stay in the hospital over night… SOME MORE!!! UUUGH, NOOOO!!!!

I left a message with Katherine the support nurse thinking we’ll go home now and if they call us back I can bring a small overnight bag back with me.   Then, not far from home about 50 minutes later, the call comes in…

“Hi Chris, its Katherine from St Bartholomew’s…”     I sort of held my breath and closed my eyes some what, expecting the worst.   I thought I was heading back in for sure after only one night and one day of freedom but she told me I was ok to stay at home but don’t see anyone, don’t go anywhere and do nothing.   She added, Stick to the current diet of cooked food only, nothing fresh that might infect me.   I was to closely monitor my temperature and if there was the slightest hint of rise or being unwell, to get back to the hospital asap!   I was allowed to stay out because I was coming in every day and it had been shown that my body was capable of producing these darn illusive neutrophils.  It shouldn’t be too long before they return.

So that’s good… that’s not bad news, really.   Except for one thing… I’m writing this on Monday the 28^th and all week, every day I’ve been back and forth to that blasted place and still no sign of a single neutrophil! Bugger!   Spending between 2 and 6 hours mostly waiting for platelets, to be seen, for blood results and on one occasion, pharmacy… the greatest drag of them all!   The real worry is that it’s been a whole week and still not a sausage!   That’s the bad news…

I’ve been hoping that my levels would rise as expected and that I could announce to the world that I’m home and can get about soon and start to try to socialise once again.   But no… that’s why I’ve been keeping the fact that I’m home on the hush hush for a time.   I wanted to get used to being at home, enjoy it, get my strength and immune system back and then get amongst it!   The “dolls house” syndrome of coming home to a seemingly smaller house and familiarising myself with everything only lasted a day, this time.   The daily commute to the hospital has pre occupied me somewhat which is good and I’ve had some lovey cosy TV dinners in with the Russian most evenings on our comfy sofa’s with the heating on under a blanket and our cats mooching about the place.   It’s been very nice, very nice indeed.  

I have loved being at home but with zero neutrophils I was constantly worried about being called in to the ‘big house’ once again.   So far so good… just need to keep the neutrophil rain dance going for the foreseeable future…  come on all… join in if you know the words… “UMM DUMM NEUTROPHIL COME… UMM DUMM NEUTROPHIL COME… UMM DUMM NEUTROPHIL COME… UMM DUMM NEUTROPHIL COME… UMM DUMM NEUTROPHIL COME… UMM DUMM NEUTROPHIL COME…”

Right, I’m off to wash my bright red pants… I think someone needs me at the local baths… there’s a kid in trouble in the shallow end struggling to do widths with a floating swimming aid!  I must dash…

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My Life In Pictures.

Hello, again, my friends.   Today’s little bloggy woggy is just a little collection of pictures to illustrate some of the things I have been going through this last year.   Have no fear nor dread… there’ll be a narrative to accompany each picture to make your viewing more pleasurable.    I must warn you now some of the pictures towards the end are of a more shocking or unpleasant nature.   I’ve ordered them in such a way that they get progressively worse but never fear I will warn you when the going starts to get a little more rough.    Obviously, its up to you to venture as far into this passage as much as you wish.    I explained to my support team that I wanted to put these pictures up for memery’s sake.    

Just one or two shout outs this time, kids…

To my fellow cud lover ‘the flan’…   here are my answers…

No 1,    not exactly D.L.E.R.C.

No 2,    I have no idea, I can’t even think of a Charlatans song right now

No 3,    Fools Gold!

Thanks for the text pub quiz to keep me entertained for a wee while.   I promise my answers are genuine and have NOT been google’d.   Plus those mega warm socks you gave me, flan, do exactly what they say on the tin, I’ll tell yer!!!   Mmmh lovely!!

To the family of Framptons.    Thank you guys for all the messages, financial support and gifts…   it all means so much, thank you thank you thank you!

And that’s about it, really.   So, dear reader… let us cease with all this dilly dally and get straight on in there…

Now… we start with our old friend the R2D2 wanna be… er… Malcom!?!    If you have a keen eye and a reasonable memory you would know from my last blog entry that my stem cells were wheeled into the room as I was freaking out in this little ‘star wars’ super star.   Picture, if you will, him sitting in the corner of my room with his hat offset at a jaunty angle with tons of dry ice, white smoke, pouring over the top and sliding down and across the floor.   It was just another new, alien object introduced into my life, just at a time when it was all really coming on top!!!   We saw him ‘chilling’ (ah! ‘scuse the pun!) at the nurses station, so I managed to get a snap shot of the little blighter for you.

As they should say to every act on the X Factor… “NEXT!”….

Ahh… my semi successful attempt to photo stitch a fish eye shot of my private room from the perspective of my bed.   Excuse the massive distortion at the top of the picture (that air con vent is straight!) but all in all a successful capture of the inside of my room.   Nice and modern, innit?    Our bedroom tv, (I know… a tv in our bedroom, terrible!) PS3 and digital radio (thank you E & Lu) are way over in the distance, opposite.   The private toilet/shower room is there on the right.   Also on the right, hanging up, is a unit of blood, mid transfusion.   On the left hand side is the windows you can normally view Smithfield market and the BT tower and Centre point.    In the far distance just off to the right is my exercise bike just in front of the window where I can see where my mum and dad and the Russian park their cars.   Its where, at the end of the day, I wave like an idiot and sit in the window until the car disappears around the corner like a 1 yr old puppy!!!

What have we here…. ?  Why its the inscrutable Dr Shamash and just some of the 12 disciples that follow him around noting everything he says.   I wanted to give some perspective to the coliseum type surround you get when, sometimes a mini bus of quacks arrives outside your room and its contents pile out and surround your bed.   There are actually more people in the room, round to the left but as I announced I wanted a photo of the team the crowd parted like the red sea, not wanting any part of it (revealing my mum, stood by the bike) Falling short of all standing there, poking me with biro’s they all listen to the guvnor talk about you whilst scribing into thick file folders.   They do address you from time to time and do take a genuine interest in your personal wellbeing… having just discussed your actual health amongst themselves back in the mini bus, parked in the hall!   ;-)

Ah, now… This is to do with the undisclosed side effects of cancer treatments.   We all know the classics… hair loss, chronic weight loss and sickness ect ect….    Nobody told me about the sheer volume of earwax build up that has started to plague me!!!   Here is a piccie of the Russian utilising the very bright lamp on her padded laptop tray to get to the heart of the candle wax factory that seems to have set up residence inside my noggin!   Don’t fear, reader, the next shot isn’t a close up of the ear bud covered in dark brown gunk!   Although I was tempted!

Here I am at Wembley, many months ago weighing in at a fighting weight of 105kg’s … as my consultant DR Shamash said to me… “you must’ve been a bit of a chubber!!!   HEY, THANKS!!! So, here I am… FAT!

And here I am only a few days ago after a year’s ‘chemo diet’ and down to my new record low of 75Kg’s!!!   I’m currently back up to about 78Kg’s with my appetite back and still on the build up, Hi Kal shake drinks.   In the pic, I’m in my room just about to pass through the door, behind, into the shower.   Ladies note the lunch box!!! It looks massive!!   All perspective, really…  it always looked so small when I ever looked down when I was healthy/chubby!!!   Note, the pictures are slightly stepping up in shock factor… you can clearly see the full extent of my Hickman line that is used to administer blood/platelets/drugs and also withdraw bloods.   (said in an electronic voice)  “I AM A ROBOT… NER NER NERRRR!”   So here I am in current form…. THIN!

FAT!!!

FAT!!!

THIN!!!

FAT!!!

THIN!!!.......   well….. you get the idea with that!

Here is a misty bad photo of the monster of a machine that extracts your stem cells from your body and saves them for after HDC, high dose chemo.    As its not all that clear to see, it’s a brute of a machine that wizzes, bongs and actually whirr’s like that weird cleaning robot out of the 1970’s hit tv show, rent-a-ghost!   It even has a cute binging bell that sometimes sounds from time to time.   The idea is that they hook you up via one arm, the machine draws blood for 4 hours and it simultaneously returns it, minus the stem cells, into your other arm.    I say it took 4 hours and normally once is enough.    You have to lie dead still, for the whole time, getting fed like an emperor (nice!) and being assisted to pee into a jug! (not so nice!)   Me being me, my blood was not fourth coming with the cells and so this meant I was required to go back on the machine to get more!   A grand total of 4 times at 4 hours a pop was what was needed… in one week, Monday to Thursday!!!   16 bleedin’ hours man!

This older picture is an example of the tricolour of bags of chemo that I was having at guys hospital’s day unit when I was undergoing my first bout of drugs!   I can’t remember exactly what was going in to me when I took this because I can’t remember the names of my “BEP” course but I’ll give it a go…   Bliomison, Ettoposide and Sisplatin, which actually contains platinum in it!   The one of the bags is covered with the red filter bag to knock out certain wavelengths of natural light that affects the gunk inside.   Note the big pump that drives it into your arm and the big Jim’ll fix it fully electric lazy boy chairs that us ‘lucky’ ol’ patients get.   This is all on the 10^th floor of that really nasty looking concrete tower, next to the shard.   The views of London are great from there too.

This blog’s like going through someone’s holiday snaps… only its worse than boring!!!

So, we reach the point in this entry where the pictures take a slight turn for the worse.   So feel free to bail out at anytime.   So to kick us off gently, here is an arty black and white shot of both our cats, Seth and Junior, whom I miss terribly!   All together now… AHHH! (unless you hate cats and would rather an UUGGHHH!)

Here is a closer look at my Hickman Line that I had put in way back in june sometime.    It hurt like billy-o after the surgery but was totally worth it in the end.   This was my first ever time under the surgeons knife.  No nasty canular needles constantly sticking into your arm and a very easy way to get stuff in and out of me, when the friggin’ thing wasn’t all blocked up with bloody gunk!   The tube extends in for about another foot and down to a main vein behind my stomach.  The moment anyone puts a drug into one of the 2 tubes, you get the effect of any side affects, immediately.   So when they used to give me a certain pre medication that made me woosey, I would start feeling tired before the syringe had even finished plunging.    

This nasty little scene is one of my chest x rays.   I had this one done around the middle of the year.   If you can see them, the white dots all over are the cancer spread into my lungs.   Fortunately more recent pictures show far, far less dots, in fact the last one I looked at, on screen, I was hard pressed to see much at all.   But hey, I’m not a radiologist!   The first one I was shown way back in January looked like an abstract artist had been at play with a brush full of white paint!   It looked like said artist was flicking the brush at the picture.   Can you see in the right hand lung a white line going down from top left to bottom right?   That is my Hickman line inside my body coming in at the top of my chest and running down to that main vein I was talking about.   God only knows how, once inside, they connect it to anything!   I didn’t want to ask but I’m curious to know.

This is one where I’m pretty tied up.   I’m all hooked up for an ECG test.   Echo Cardioid err… Groovy test?   I’m not sure of the last word but I’m pretty sure the first 2 are correct.   It measures your heart and its timing by taking different tiny electrical pulses around certain parts of your body.   It checks your pulse synchronisation given off by all the different areas and the machine prints out a graph (you always need a graph in medicine!)  that looks a little like one of them earthquake read outs.   When you see the ECG machine printing it off you can see the various ink scribe arms inside, all twitching away, showing that a force 7.6 is going off!   Then the nurse tears it off, looks at it, looks at you and always says… “I cant read these, I’m of to give it to a doctor, won’t be a sec.”   Then you lie there, waiting for news of your fate for 20 minutes or so and the nurse returns saying, “yup, that’s all fine.”   They gave me an ECG when I freaked out and fainted when I was having my stem cells returned.

Uuugghh!   This is the entry site if my Hickman line when it leaks blood.   It’s a sign that my platelet level is low and I need a platelet transfusion.    Platelets are the things in your blood that help with clotting and when you are low you are at risk to serious bleeding.   One guy told me it took nurses 2 hours and a shed load of cotton wool to stem a nosebleed.   The guy said he ‘paped’ himself at the amount of blood that was issuing fourth out of his bugle!   Nasty, you have to keep an eye on these things.   I was stabbed by a doctor, who was drawing blood the other day (yeah, you Laura!) and I hadn’t kept enough pressure on the puncture site after the needle had been withdrawn.  I only noticed I needed help when the taped swab was now saturated and I was dripping blood off my arm onto my natty bed trousers!   Note the date written in the side of the dressing.   That was only 2 weeks ago when this happened.   They put the date of when the dressing is changed so they can see when it needs changing again.

Right, last 2 shots of this gory tale… and they ain’t that pleasant… you have been warned…

This is a shot of the aftermath of suction and swabbing required to keep my crumbling mouth from clagging up.   The horrible gunk on the side of the bowl is actually bits of my mouth that have been drawn out by salt water rinsing, having a nurse with a mini suction hose, medicated mouth wash and those pink swabs.   It is not very nice and very very sore.   The sort of pain you get when you keep biting your tongue in the same place or the side of your cheek, only sometimes the pain is constant and of such a magnitude (9.8 on the ECG scale) that for 6 days this last month I was on a 24hr syringe driver that slowly administered pain killer morphine.   I kept it in a bum bag (or as the Americans would call it, a fanny pack!   The Russian cracked up when I told her that!)    My parents being them and taking care of me in every way, supplied me said bum bag in which the battery operated syringe driver happily sat in “CCHHIING” away to itself every 20 minutes or so as it doled out another hit of relief.   The sensation in my mouth was such that it felt to my tongue that my teeth had all been removed and replaced by 32 razor blades.   I would have slashes and lacerations all across and down the side of my tongue.   When you looked inside there were big white blisters and the walls off my cheeks would have permanent impressions of my teeth in them.   Ugh, horrible!

So, as old Sir Tervor Mcdonald used to say… “And finally…”

A classy shot of me mid ‘GAMEC’ drug regime when my mouth issues were at their peak!    Constantly drooling blood and mouth lining into a cardboard bowl whilst stemming a nosebleed and thinking strong for everyone by showing the old thumbs up in a Millwall shirt!   That’s true British grit!    Lots of pain, lots of discomfort, lots of digging deep and getting through it…   These drooling sessions would go on for days at a time and sometimes keep me awake at night because I’d be half chocking on mouth fluid!   Nasty business.   The reason for all this mouth collapse is that chemo indiscriminately wipes out all rapid multiplying cells, such as cancer, hair cells and your stomach lining.   Unfortunately your “stomach lining” includes everything from your front lips to your ‘behind’ lips and everything in between.   So not only was there need for days on end of pain killers, there were sustained periods where I didn’t eat for days and was on constant fluid drips for nutrition.  

This is the end of my sorry tale of woe…   I hope my next blog entry is more exciting with better news!?!?!?  

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