Thank You

A big thank you to everyone.

I have been overwhelmed by all of the support and kindness I have received over these last few months.

Thanks also for the kind comments on the blog this evening.

I am not thinking of rolling over and letting this disease tickle my tummy anytime soon, but I am a pragmatist and understand the situation that I am in.

I have understood for a while that some of my symptoms do not feel right and that has been reflected in the commentary on the blog.

That said I am also a man who believes that the human spirit is an huge resourceful beast that can be tapped into and I certainly intend to do that.

As an amusing final comment, my weight at the hospital today?

66.6 kg.

It brought a smile to my face. 

Difficult Times and Funny Thoughts

The most difficult thing this evening has been breaking the news.

My parents have travelled up from Wales and have been staying in a nearby hotel.  Kitten and I visited them and, understandably, it was a diffcult visit.  Parents do not like to lose a son whether he is four or forty five.  I understand that as a parent myself and my heart bleeds when I think of the devastation of the news for my parents and, of course my wife.

On the way back home we popped into Notoplip's and after the initial exchanges things  relaxed.

There was much humour.  Not all of it is suitable for this blog but there is a moment that I thought that I would share.

I was saying that some people can taken by illness before they have lived.  Nothing is worse than thinking of a child dying of a disease like this.  At least I have lived a life and I said that I am just pleased that I have found someone that I love.

Kitten's eyes widened with pride as I turned to Notoplip and said "you".

We all burst out laughing and there is nothing like laughter at these times to ease the situation.

Notoplip and I were also musing about our boys at yesterday's Chelsea match.  Huffty is a clever little chappy and he also likes to get in the spirit of the occasion but yesterday he started to get a little to big for himself.

Huffty has a squeaky little voice and it is so funny seeing him in the family section copying the chants of the nearby Shed End.  There was much amusement around us as every five minutes he stood up, forsook his normal voice and put on a London football chanting voice for renditions of  "Stand up for the champions" or "Chelsea, Chelsea, Chelsea, Chelsea etc".  Worse than that Notoplip's boy "Sonic" felt it necessary to follow suit.

Have we brought up to yobs we asked?  Whilst secretly thinking that it was great to see them so involved.

The Worst Possible News

There is always a danger that when you write a blog on such a dark subject that it doesn't end up being like an American soap opera where the closing shot is always of everybody with a cheesy grin on their face.

Today's news was as bad as it could possibly be.

The cancer has become metastatic (i.e. I now have secondary cancer).  So far, it is the liver to which it has attached itself.  This was always a danger whilst receiving the radiotherapy and chemotherapy treatment.

In the region of oesophagus the tumour depth has increased substantially and outside the oesophagus the nodal growths have got bigger and there are also new growths.

Oesophageal cancer is a particularly pernicious cancer and there is no hope of reversal from here, so I have to focus on getting the best out of the time that I have left with my family and friends.

I will be continuing to write the blog as it is cathartic for me and I feel that it has some residual value not least for my children, as it will offer them them an insight into my nature and character.  I can't see my sense of humour diminishing though there are bound to be tough times ahead.  I look forward to putting a spin on some unusual topics.

From here on in the focus is on quality of life and the first physical thing to address is the possibility of getting a stent into my oesophagus to allow me to eat better.  Getting more energy in will help me improve my day to day enjoyment of life.

I asked them to give me some idea of life expectancy and they didn't want to commit because

1. They did not want to "quash optimism" 
2. I am in general "good nick"

After some discussion it came down to being told that I should think in terms of months rather than years.

It goes without saying that I will do my very best to keep myself going for as long as I can derive enjoyment from life.  After all, it is the most precious commodity.

Humility Part III

Well Notoplip, the boys and I witnessed Chelsea being humbled by Sunderland at Stamford Bridge day.  It is a shame for Sunderland that more of their fans didn't turn up because I have never seen such a poorly supported away team.  All in all in completed a miserable weekend of sport for me with Wales also losing the rugby yesterday

Onto more important matters, I haven't got my appointment card to hand for tomorrow, so I don't know what the appointment time is.  I'll give the Marsden a ring tomorrow to find out.

I know that might sound a little disorganised, but you can see from the appointments page that I have pretty much kept tabs on everything along the way.  The fact is that I remember it as afternoon and the appointments for clinics are often not particularly punctual.

As I have been typing, Kitten has been looking and (as ever) a woman's eyes are so much better at these things.  The appointment time is 4:15pm so I can look to clearing the hospital at 6 - 6:30pm at the latest.

I guess that tomorrow will feel like a slightly long day but, as I have already said, I feel quite comfortable.  I do feel a long way away though from where I was in July.  Then I had an operation date set two weeks in advance and the chemotherapy had gone fine.  Then came the call and my world was turned upside down.

There is a world of difference between having a well developed cancer whilst still being in a controlled process with the expectation of success to having to rely on speculative treatment.

I am still in the game though and back in July it looked for a while like they were going to pull the plug.

There isn't a guarantee of firm news tomorrow, simply because the scan date has been brought forward four weeks and so there is still four weeks for the radiotherapy treatment that finished in September to complete its effect.   I expect that they should have a good idea of where we are at though.

During the first phase of treatment I kind of felt like "is that all you've got" in terms of the discomfort I was experiencing.  Cancer with the prospect of cure and chemotherapy seemed tolerable and not too bad.   This phase of treatment has delivered  what I originally expected.

When I started treatment I expected it to bring me to my knees at some point and when there was discussion over me in July I said simply "throw whatever you have got over it, I am only interested in cure".   Well they have and it hurt at every level.

As I have said before, I believe humility to be something that you feel rather than something that you project and others perceive.

Right now I am feeling humble but hopeful.

The Outlaws Ride Out of Town

The Outlaws from North Wales have untied their horses from the gate post and will shortly be galloping up the M6.

Cue the Bonanza theme tune.

Jack and Vera have been a godsend this week allowing Kitten space to recover from her operation and me to continue to improve after being knocked by the cold.

It seems slightly odd to receive care from the parental generation at our age, but it is a time to be practical and grateful and I extend our heartfelt thanks to them.

From Kingston Bridge to Stamford Bridge

Having been for a walk with Kitten along the Thames in Kingston on Friday, I am off to Stamford Bridge with Notoplip this afternoon.

Chelsea are at home to Sunderland and we are taking our boys (the Huffty and Sonic) to the match. 

I try to prepare myself as much as possible for the time out of the house and Chelsea is within easy reach for me.   It is a short hop to Wimbledon and then a twenty minute tube from there.   The difficulty is always coming home because of the simultaneous exit from the match and the subsequent crowding on the tube.  I have to eat little and often and there is nothing that I can eat when I am out at a football match.

Notoplip has kindly obviated the difficulties of getting home by sorting out a black cab to pick us up from directly outside the Shed end of the ground.  We should then be able to make a quick getaway through the bus lanes of London.  We will most likely leave a few minutes early if the game is already won.  It is not my style but is pragmatic under the circumstances.

So, how to repay Notoplip?   I usually get the Huffty a hot dog at half time so I think that I will get one for him too.  Not to eat you understand, but to splice and for him to wear above his mouth and sit there fantasising what it would be like to actually have a top lip.  Not being overly endowed in that department myself I may even join him in a little "collagenesque" fantasy.

The last couple of weeks I have been doing little and resting lots in an attempt to get my system back into equilibrium after having a cold.  The last few days have seen a little more activity and this afternoon will be a good test as to see whether I am ready to push the boat out a little more. 

Having been inactive for a little while I am not only looking forward to the match but enjoying the company of my friend and treating the boys.

Emotional Silence

In my first ever post on the blog I wrote

Just as this condition developed by stealth I expect to have to find a strong centre of inner peace - "emotional silence".


In respect of the disease I am pretty much there.  I don't have any expectations about the results of the scan on Monday, I just have an open mind and a willingness to deal with the situation whether good, bad or indifferent.

In these situations the most difficult thing is not to deal with yourself but those around you.  Bad news obviously isn't going to travel well with those close to me and it will obviously be a big wrench if it is said at that treatment can only be palliative from this point forward.

I have said that the past few months have been difficult but that all fades away in the light of good news. This period has been one which is worth enduring to achieve success but is not a way that anyone would want to live for an extended period of time, simply because it impinges so heavily on your general ability to enjoy anything.

So, once again, I am neither optimistic nor pessimistic but I am hopeful, clear minded and focused.

If I come through then I am not sure what I can allow myself by way of celebration, but a big smile will be top of my list.

Kitten and I - Walking by the River

Kitten is starting to get more exercise to her leg, but until today had not been out of the house since returning from her operation.

So this morning I decided to get some fresh air and she joined me in hopping in the car over to Kingston at lunchtime

We parked close to Kingston bridge and enjoyed a stroll along the river and some fresh air.

Walking together, hand in hand, we felt like a really old couple because neither of us was walking with any great aplomb.

Still, getting out is good for the spirit and I have always found the river to be uplifting.  When I lived in Kingston my flat was only a few hundred yards from  it (the river was at the end of the road).  I spent many evenings sitting by it, chilling and reflecting.  When Kitten and I had Boogle we use to walk from the flat along the the river path for a mile or so and would come to a pub by Kingston rowing club and stop for a pint, a bite to eat then walk back again.

The Thames figures strongly in many Londoners' lives and I have lived most of my life in or around Kingston and have been working in central London for twenty four years.  When I commute I go over it at Blackfriars everyday taking in views right across the City one way and towards Westminster the other.  For fifteen or so years when I commuted from Kingston I would walk over Blackfriars bridge every day.

Not only do I feel that there is a reassurance and a calming quality from being by the water but it exudes power.  Something which is lacking from my armoury at the moment.  Whilst the river in Kingston is much smaller and picturesque than on the east of London, it is still of a size that makes it dominate the focus.   This is reflected in Kingston as much as anywhere I know with many bars and restaurants focused around it.

A Surreal Walk

Yesterday, I decided to get up off my skinny arse.

I did some work in the morning, as it needed doing and was pleased to be able to do it efficiently.

I also decided that I should go for a walk.  It is easy to get in the habit of not getting out when the weather is bad.

The weather yesterday was very mixed.  There were blue skies but heavily interspersed with threatening clouds and it was also blowing a gale outside.

I wanted to get to the shops at the top of the road and also drop a letter off to the doctor for Kitten.  This entailed taking a route that completed a square.

I started off walking on a path between two parks at the back of my house.  The sun was shining through a gap in the clouds but the effect was one of strobing from my left hand side.  Meanwhile the golden autumn leaves were "barrelling" towards me along the path.  They looking like a flock of golden birds flying one foot off the ground and completed a pleasant landscape.  All this was accompanied by the sound of Om whilst plugged in to my iPod.

When I cleared the parks the walk was simple enough until I got to the end of the road to turn left.

Just before I got to the corners I was sucked into an autumn leaf tornado.  They were circling ferociously around me and I had to stop and pick one out of my ear.  Turning left I felt the full force of the wind and it was actually quite hard to walk up the road to the doctor's though I hasten to add that I wasn't hanging onto a tree with my legs up in the air!

After stopping for a well-earned breather at the doctor's I continued up the hills and had my "eye out" just in case I got clobbered by a flying sign; they were rattling around by the shops like someone standing there banging pots and pans together.

Then, as I turned left again everything was calm again and the sun was my friend.  The only reminder of the disturbances was the quickly circling sign outside a garage in the distance at the point to which I was heading for the shops.

The weather was the same the whole way road but the experience was different as I turned each corner.  The metaphor was not lost on me.

Staying Pragmatic

A few people have been asking me how I am feeling about next Monday's meeting and it has also been put to me that my views sound a little negative.

Throughout the process I have done my best to do what I feel are the right things and keep moving forward in a focused manner.  Like everyone else in my situation there is every reason to desire recovery and my desire has not waned.

What I don't want to do is to have unrealistic expectations.

The good thing is that we are not looking for cure from the latest round of treatment.  Rather we are simply looking to get me into theatre.  That will mean that

1. The infection that has burst outside the oesophagus (e.g. between the lungs) must have diminished.  The nodal infection was too big and too plentiful
2. The length of the tumour must have shrunk
3. The depth of the tumour in the oesophageal wall must have shrunk

These are all things that the first round of treatment failed to achieve in large enough measure and this round of treatment is designed as second shot at it.  I was only given this round of treatment (rather than palliative treatment) after all the departments had met to discuss my case.

Of course, age and general levels of fitness are both on my side and, to be honest, I feel that I deserve a break!

There is a big difference between the first phase of chemotherapy treatment that I had and the combined chemo/radiotherapy.  With the chemotherapy there are obvious yardsticks to judge progress e.g. tumour counts, ability to eat, how one feels.  With the radiotherapy there is no statistical and scientific feedback instead the body is propelled into a mess for a few months and you just have to hope for the best.

That is a much more difficult framework to be consistently optimistic in because when all symptoms are negative and everyday is difficult and you are not given any information to support optimism then where do  you pull it from?

I will enter next Monday's meeting with my feet firmly on the ground but hoping for the best possible results.

The scan has been brought forward by four weeks, so there isn't a guarantee that I will get a cast iron response.  It may be for example that the consensus is that things seem to be progressing but that the radiotherapy needs longer to work and later reassessment.

We will see.