I suppose it had to start getting at me sooner or later.  I just can’t seem to cast the forthcoming operation to the back of my mind any more.  In fact, the more I try, the worse it gets.

I just get so angry with it all.  I received a relaxation CD from Diane yesterday and must put it on my iPod.  To be honest, I don’t have a lot of expectation from it.  That sort of thing just leaves me cold but I must be fair and give it a go.

The most exiting time I can remember for years at work and I can’t enjoy it.  Bugger!

Okay, I hold my hands up, I was wrong!

Before this week I had little good to say about McMillans.  My experience of them has been less than favourable.  The first time I came across them was when my father was dying of Liver Cancer some 12 years ago.  I did not like the attitude of the nurse who came around to visit him.  She was patronising to the extreme.  You know the sort, they talk to you like you are a five year old but with the head bent slightly  to one side, voice a whisper and with the merest hint of a forced smile, the occasional nod of the head.  That was when she was talking to my father.  When she talked to me, it was dismissive and abrupt and to my mother much the same as to my father.

When I first got Cancer a couple of years ago, I had the visit.  I’m sorry to say that the same patronising whisper and bending of the head brought it all back to me and I just switched off.  She even addressed me as ‘Love’.  Don’t call me ‘love’ and I won’t call you shit-head!

Then came the McMillan adverts!  “Every day doesn’t have to be about Cancer”.  Pillocks! You just reminded me!

When Emma asked my if I would like someone to talk with me about my concerns with the post-op treatment I was distressing over, I said “yes”.  After all, it was Emma asking me.  Any friend of Emma’s is a friend of mine…  When I got the appointment letter I was surprised to see that the appointment was with a McMillan Nurse.  Okay, but only because it came at the suggestion of someone I trust.

She kept the appointment on time.  That’s the first brownie point.  Hospitals seem to have a very strange understanding of what an appointment time is. Hours waiting in waiting rooms … (I digress).  She took Karan and myself into a small room that looked as if it was lived in.  Brilliant, a real person!  Sat us down, Called me Mr Nuttall; not Roger, not ‘Love’ but a respectful, Mr Nuttall. (and Mrs Nuttall).  Then she listened.  Almost without interruption for nearly 30 minutes while I retold my sad tales of woe.  No patronising weak smiles or sympathetic nods, but genuine responses that I could believe.

Then we talked together for a while.  She believed me.  She understood.  She was honest.  She was brilliant.  When she asked if I would like another appointment I instantly said ‘”Yes”.  This lady is going to help me.  Thank you Diane.

It has been an amazing ‘free from thoughts of cancer’ week.  This despite having made the decision to go ahead with the operation, having got the date for the op, and having agreed to take some help in coming to terms with the post-op.

I went to the Doc’s at the start of the week and was put on some low dosage ‘beta-blockers’.  They work well and take that edge of anxiety away.  I don’t like drugs for the sake of drugs, but there are times when we all need a little help.  If we break a leg, we use a plaster cast to add support, so I see no problem with help with anxiety.  It exists and is not just a figment of the imagination.

Late last week I had been struggling with the ‘Quality of life’ thing and was very touched with this story from the Daily Mail, for once, without any spin. 

You may remember the story of Hannah Jones, who at the age of 13 decided she didn’t want a life-saving operation. A year later she has changed her mind and is hoping to have a heart transplant. 

The story of her change of mind and what is a heart rending story of a mother’s anguish is well worth reading.  When the story first hit the papers, it was all about whether a 13 year old was old enough to make life threatening decisions.  This article looks deeper; at the nature of those decisions, risk, feasibility, side effects, life expectancy, quality of life, the impact on others.  The very things that I and many others must evaluate in planning our course of action.  For a 13 year old girl, she made an incredibly adult and brave decision, to now change that decision is just as adult and just as brave.  The circumstances have changed and it is right that she must re-evaluate her decision.  Good luck girl.

Click here to read about One brave little lady.

It really was a very hard decision to have the operation but I suppose the outcome was always a forgone conclusion.  Let’s get on with it.

I spent a lot of time deliberating the value of the quality of life and life expectancy and so on.  The real breakthrough was when I realised the the percentage likelihood of surviving 5 years was not a ‘characteristic’ of the quality of life and and at best was only a ‘moderator’ in the calculation. 

If the operation means the removal of the four tumours, and there are no others evident at this time, then once I have got out of hospital and on the road to recovery it follows that even if the cancer where to return, the clock starts ticking again from that point.

Given that I have no fear of the operation itself and only the post-op regime, then it must be the focus of my attention.  I must spend my time and do what I can to come to terms with my fears over this aspect.  I don’t know how just yet, but I will.

Just an aside for a moment.  I was very grateful for the time Emma took out to talk things through with me yesterday and am very grateful for her support.  However, in doing so, I am in danger of devaluing the credit that should go to the one person who takes time every minute of every day to care for me, I really must acknowledge the huge amount of support that comes from my lovely Karan.  I may be the one that is sick, but there are two of us who are suffering. Without her, to be honest, I doubt if I would have a tenth of the strength to endure all this shit.  Thank you Karan, together we will beat this damned curse.

Phew! What a weekend!

I started out still reeling from the news, the thought of the post op care.

I know it sounds silly, being able to operate when it had been ruled out, but I just keep struggling with it. Of course it’s good news, but I wish that when they said 40-60% chance, they had left it at that. I could have rationalised the post-op fears with the better prognosis. But 20-40% for God’s sake, that’s not so good.

Cue another piece of crap advice, “Look on the bright side”. I have, and I have thought it through, and it’s very badly balanced against the ‘Dark’ side.

I have almost come to terms with the decision to go ahead with it, but I still need a whole load of convincing, or ‘conditioning’ might be more appropriate.

You know what, there’s loads of advice about what you should do, but nobody will give you a good rationale or a way to arrive at your decision. I thought that surely, someone somewhere would have some sound advice, but look what Google brought up. How to decide about surgery for, “sagging skin around the eyelids”, “tummy tuck”, “LASIK eye surgery”, “Rectocile”, (don’t ask), “Breast Reconstruction”, “Weight Loss” and so on. Get the picture?

So where is the advice on how to balance ‘quality of life’ against ‘life expectancy’? Try looking up “Quality of life”. All I got was a grossly inadequate definition from Oxford University which defines it thus: “Quality of life is a descriptive term that refers to an individual’s emotional, social, and physical well-being, and their ability to function in the ordinary tasks of living”. All right, but measured against what. And how do you measure it?

I’m going to try and put it out of mind until I can talk to the Mr Borley, my original surgeon. He probably won’t tell me anything different, but he has an incredible knack of putting things in a way that I can accept and feel encouraged by. After all, it is good news, just badly delivered.

“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way”.

We walked hand in hand, hoods and heads bent down against the miserable rain, in silence, each of us deep in our own thoughts.  It was never going to be ‘great’ news, but what we had just learned had shocked us.

We had just been to see the liver consultant at Birmingham hospital.  We were to hear the results of the MRI scan done at the beginning of the week and expecting to hear whether I was a candidate for RFA or not, further surgery or chemo having already been ruled out.

What I did not expect was that the Case ‘team’ had actually recommended further surgery. The LAST thing I wanted to hear.  With it, I was told by one doctor that the prognosis could be as good as 40-60% chance of a 5 year survival.  (This however, was later modified by a second doctor to a more cautious 20-30% chance).  The reason for the shocked response was that I absolutely did NOT want to go through the hell I went through the last time.  The epidural failed, I was overdosed on morphine and was in a comma as a result.  A nurse had delivered a ‘bolus’ of a substance I was allergic to, directly into a vein in my neck.  That was like being hit full-on hard with a sledgehammer!  Hospital is never pleasant, but that was sheer hell!

We were told that I have four tumours on the liver, (they have already removed four), and unfortunately, one of them is not accessible for the probe and too near the heart which rules out the RFA option.  The good news is that they are all fairly small and all on the surface, hence the option to operate.

Bearing in mind that I am attempting to maximise the time I have a reasonable ‘quality of life’, rather than just prolong it, I have some serious thinking to do.

Those who know me will have heard me say that I went into Cheltenham Hospital with a ‘needle phobia’ and came out 9 weeks later with a ‘needle fetish’.  Sadly it did not last long and my terror of needles returned almost immediately and has plagued me ever since.

My MRI scan this morning was not a problem except this stupid fear of needles.  It’s illogical and totally in my imagination.  I know that.  But it’s like the old faith healer who said that, “Though pain isn’t real, I dislike what I fancy I feel”.

So, sitting in the Scanner ‘Anti-room’, I was going through my usual, “don’t call me brave, I’m a raging coward”, routine to the radiographer with the needle. “What’s your name?”, I asked. 

“Damian”, he said.
“Oh for f*&ks sake!”. 
“Don’t blame me”, he said, “blame my Dad.  I can give you his number if you don’t believe me”.
”I think I already know it”, I responded, “666”.
“No, that’s mine!”, he smiled.

In the meantime he had quietly slipped in the cannula needle.

If you have not been inside an MRI scanner, it’s quite an experience.  The first time I was stunned by the volume of the noise it made.  A bit like standing next to the main speakers in a nightclub on ‘Bad Trance’ night!  I have to say I was a little disappointed that this machine, a later model, was a lot quieter.  I had built myself up to coping with the noise.  In fact, I had taken my iPod with me and was listening to ‘Jeff Beck at Ronnie Scotts’ throughout the whole procedure.

Nothing to it!

Almost from the moment I got up this morning, I was not on top form.  Too much time wasted thinking about my MRI scan tomorrow.

As ever, it’s not the scan that bothers me, but the implications of it.  (Alright, the needles piss me off too)!  It gets me all wound up worrying about what might or might not be.  The thought of getting back into that regime of hospital visits, the smells, the travelling, the waiting.  Your life takes on a whole new dimension over which you have no control.  And I’m sorry, but I don’t have the confidence in the admin staff as I do in most of the nurses.

What really got me going today though was a bloke at lunch.  I had gone down the local to deliver a birthday card to one of the barmen.  I wasn’t stopping long and when he asked why, I said I was going for an MRI scan tomorrow.  “Good luck, I hope it goes okay for you” he said.  Fair enough.  But then a bloke turned around from the one-armed-bandit and said, “You have got to stay positive”.  Sorry, but I don’t want strangers giving me advice and certainly not that!

I don’t know what people think they are saying when they say that.  I very much doubt they understand what they mean.  I am a person who goes through life looking at the doughnut and not the hole, but there is a time when you have to be pragmatic and understand the reality of a situation.

Being positive therefore becomes more than a state of mind, it becomes a state of being.  You have to engage yourself in doing what is best, changing diet, changing work patterns, working while you can, but preparing yourself and your work for a time when you will not be able to continue.  Remember, ‘terminal’ cancer is just that, terminal.  How long the inevitable can be postponed is the name of the game.  It might be 6 – 18 months or given successful treatment, it may be delayed for 5 –10 years.  But you can’t be positive.  And that’s my point.

You can ‘hope’, and indeed is vital to dealing with the situation, but planning your life on hope is like factoring the National Lottery into your business plan.  You need to be looking at how best to deal with the time you have left, acknowledging the parameters in which you can be confident, and maximising that time. 

“You have to be positive” is a mindless, empty statement that has no place and is totally out of context with reality.  “I hope that things go well” is far more meaningful.  It shows you care.

I hardly blinked and the week went by.  I can’t believe it’s Friday tomorrow!

Monday, the hospital called to rearrange the MRI scan for Sunday, a day earlier.  I am a little apprehensive at the moment about it, and the results!

Nonetheless, I can’t understand why I am so up-beat at the moment.  I am enjoying everything.

I was even considering a ‘long-haul’ holiday later in the year.  We’ll see how we get on with the MRI.

Not a lot to shout about this weekend.
Spent most of the time playing guitar and gardening, (in between the weather).
Didn’t even go out for a drink.
Just starting to get a bit nervous about next week’s MRI scan.

Great day today.

A new commission for marketing consultancy has got me really fired up.  Nice company, honest chance of success and right down my street.  Interested to learn that one of the directors had been diagnosed in 1994 with a brain tumour and following five years of treatment, (“a bloody miserable time”), he has had good health since.  There’s always hope!

Also got a small ‘brochure’ site signed off which was good news.  Nice comments too.

Despite all this, we decided to have a quite night in and watched telly.

I playing with a new toy for lyrics.

Just a normal quiet day.  Made good inroads into a shopping cart without too much drama.

The evening was spent in front of the telly and playing with the guitar.

Had an MSN chat with Ivan, (always puts a smile on the face.  He says he’s coming to the UK for a week soon and could get up to Cheltenham.  I hope so, it’d be good to see him again.

It’s interesting how a simple remark can send somebody into panic.  Talking with Karan earlier, she suggested that we might like to ‘downsize’ the house should I become ill.  A perfectly reasonable topic to bring up.  But it sent me into a bit of a panic.

Firstly, if we did, when?  Before I become ill? In which case what if I then didn’t become ill?  A waste of effort.  Okay, so after I become ill.  Hang on, would you want to move house at such a critical time? Hardly.

That wasn’t the panic though.  The panic was at the mere thought of leaving where we are.  Let’s get the easy one out of the way before we start.   If there was no illness, then there is not compelling reason to move just yet.

The upsetting thing was that I would lose all the things I have come to hold dear.  The garden; I have fought what was a jungle, to produce a lovely colourful and relaxing place.  And my friends, not my neighbours, (more of them in a minute), my garden friends.  The Robin and the Blackbirds.  I know most of them and most of them know me.  They will wait at my side for juicy worms and bugs when I am raking the beds.  I mustn’t forget the Thrush, the greenfinches, goldfinches, chaffinches, blue tits, great tits. The dawn chorus, I can tell which bird is singing what, I know where they sit and I know their song.  I have seen four years of fledglings and been introduced to many of them.  And in the evening, the song is so different from the dawn, but equally as identifiable and familiar.

There is also the silence.  I can sit in the summerhouse on most days, but especially on a Sunday morning and there’s not a sound.  No cars, no dogs barking, no shouting and banging, just silence.  Occasionally, something will break the silence; a bird or the church bells, children laughing.  Never once have I heard a voice raised in anger.

Then there are the smells, or lack of them.  No exhaust fumes, stinking rubbish, dog muck or factory smells.  Just roses, lavender, fresh air!  Sometimes there’s a more human smell, Sunday Dinner, fresh coffee, barbeque, (no forget the barbeque)!

Last but not least, my friends and my neighbours.  I wouldn’t want to be to far from them.  In fact, next door suits me fine.  Brian, next door, you know what? That bloke is up at dawn and clearing a path through the snow from my door to the road. He filled my water butt from his well during the drought.  He was round to the back of the house with his toolkit before the first nail was full knocked home in the Summerhouse.  And Pam and Richard, lovely people, who genuinely care when they ask how I am, the lovely cards I get pushed through the door at the slightest excuse.  Of course our best friends Darryl & Stef and Steve & Debbs are close by and up for a bit of ‘bonding’ at any time.  Of course there’s all the lot down the local, bless ‘em I’d miss them all.

Move! Over my dead body!

Just another day.  Got on with a fair bit of work and preparation for a meeting,  Got sign off on a small website.  I quite enjoyed doing that, nice people.

I was pleased to get a phone call from Emma, Mr Borley’s assistant enquiring after the meeting at Birmingham Hospital.  She wasn’t aware it had been cancelled.  (Why don’t we have centralized patient records in this country?)

It’s always nice when Emma calls, she is always so positive without being patronising.  She talks sense and understands what you say without trying to read between lines.  She can put a positive spin on just about anything.  Cheered me up!

Not much going on today except that I actually enjoyed work.  I managed to finish off one small site and made significant in-roads on another. 

So much so I was able to turn my attention to a proposal that involved my doing marketing consultancy work for a client.  It’s really good stuff and one where I know I can make a difference.  However, there was just one point where I found myself going the extra mile to reasure them, ”…if you feel in the future you would like to bring the project in-house…”, they could easily do so.

Nothing mind-blowing, but the thoughts of a time-limited future are never far away.

It’s nice to have a day off, but I fear I may have over done it a little last night.  A bit of a hangover took a while to shake off.

Mostly played the guitar and gardening.

Late afternoon, the client I mentioned yesterday with the Aloe Vera called round unexpectedly with a large box of products for me to look at.  I don’t want to tell him outright that I have a big issue with this sort of product.  In fairness though, I will do a little research to see if there is any medical research on the products.

It did make me feel uneasy though.  Do you do or don’t you don’t?

We were supposed to be going to Birmingham Hospital today.  However, 10 am, they called and said that in view of the MRI scan scheduled for early July, they didn’t see the point of the appointment.

Neither did I.  Sometimes it beggars belief how little the various departments communicate.  They were told ages ago about my appointment with Mr Borley this week, but went ahead and arranged today regardless.  Then they cancel at the last minute.  Frustrating.   Don’t they not realise the anxiety that hospital visits can cause?

One of my biggest problems is a ridiculous fear of needles.  Every time I go to a hospital, some bugger wants to stick a needle in me.  They routinely take blood tests, not because they are going to use it, but just in case they need it.  They do bloods, blood pressure and all the other bits while you are waiting.  It keeps the queues down.  But for somebody like me, the blood tests are pretty awful.

Firstly, I have a history, albeit a long time ago, of fainting  from needles, but more importantly, the Chemo has weakened the vein walls as well as having very narrow veins.  The consequence is that even with a blue, (or a black needle if I can persuade them to use one), the chances of getting the needle in the first time is slim. What’s more, it they do, they can’t get the blood out because the vein collapses or ‘blows’.  I’m running out of good sites to harvest!

Anyway, it was cancelled.

During the afternoon, one of my clients called to ask about some new work.  During the conversation he asked how I was after the operation before Christmas.  When I gave him the update, he offered me some Aloe Vera preparations that would help me.  I was polite in trying to discourage him but he said he would let me have some.  Unfortunately I have a hatred of these ‘quack’ remedies.  My client told me that it “won’t cause any problems as it is all natural ingredients”. Right… So is deadly nightshade, so is Opium, so is cyanide.

The day my specialist says to me, “We are going to put you on a course of Aloe Vera because it will help/cure you” I will listen.  Until then I remain totally against.

I still can’t get my head around work.  I keep thinking, ‘What’s the point?’ and to be truthful I don’t know the answer.

The practicalities of living day to day are obvious, or at least you would think so.  You’ve got to eat, pay the bills etc. But how long do you willingly spend the months you have left in working.  You can’t develop the business, you can’t make long term plans.  You can kid yourself that by working and planning you are being ‘positive’.  That’s a load of bollocks!  So why do it? 

Well the easy answer is because you have to.  But let’s not fool ourselves and say it’s positive, because it’s not.  Karan made the best statement when she said, “Let’s live ten years in two.  Well why not?  Because of the off-chance I live longer and there’s no money to pay for it!  Hang on a minute….  So we don’t live life to the full because we have to plan for the future.

I’ll tell you what… I shall not be tip-toeing around looking for an answer too long.  If I can find a way of making sure Karan hasn’t got too many worries when I go, then watch us LIVE!

Just a taster tonight; we have a night out planned with Richard, Darryl and Stef.  We’re off to see Krush at the 50 Lounge Bar.

Slept surprisingly well last night without any difficulty in getting to sleep.  It’s a bit odd that I feel a little relieved.  Maybe the anticipation was worse than the news.  I’ve always said, “bad news I can deal with, no news I can’t”.  Maybe that is more true than I thought.

Nonetheless, I had no appetite for work today and just went through the motions.  A bit ironic really, because there is a lot of work in at the moment and in the normal course of events, I’d be quite excited.

Doing the rounds of letting people know what has happened is a bit of a double edged sword.  On the one hand I’m flattered that people care, (of course they do, they are friends and family and care a lot!), on the other it is a bit upsetting to keep repeating the same thing over and over.  In a way, it’s therapeutic enabling me to come to terms myself, but it is a constant reminder.

One thing that really does piss me off though is the Macmillan adverts on ‘Five’.  Settle down to a an hour of mindless drivel, ‘Neighbours’’ and ‘The News’ and what do I get every 20 minutes on the adverts. “Not every day is about Cancer, …”.  It is now you pillock! I don’t want reminding!

It’s a funny feeling, waiting in a waiting room before going in to see your consultant who is about to tell you when you can expect to die.

Not if; I already knew in my heart that things where not right.  Nothing specific, not feeling ill, but not feeling well either.

The whole thing takes on a whole strange atmosphere, surrealistic, numb, like you’re standing on the edge of a cliff; not wanting to look down, afraid to look up, forbidden from walking backwards and only the cliff in front of you.  The butterflies in your stomach can’t be controlled.  It’s real fear.

I sat down in the consulting room and exchanged pleasantries and laughed in a sort of self-defence.  I asked the inevitable, “Is it good news”?  He didn’t have to speak, the expression on the face preparing to deliver the inevitable. “I’m sorry it’s not the news we were hoping for”. I could feel the shudder from Karan on my left.

There are ‘abnormalities’, (that’s a euphemism for cancer), on the remaining half of my liver.  They can’t be operated on and chemo is more or less out of the question.  Untreated, I am advised I have 6 months to 18 months left.  Given the slow growth shown on the last two scans, it’s more likely to be towards the 18 month end.

There is a ray of hope in some new treatment, Radiofrequency Ablation. It’s fairly none-invasive and can be successful.  The problem is, it can’t be used in some circumstances, where they can’t get a straight line in or where the cancer is near a vein.

So MRI scan some time in July.

I’m still stood on the edge of the cliff, but it’s one step away from it now.