A number of people who read the blog can't get their head around the name "Notoplip" because they are reading it as "Not-op-lip". Well I have now spelled it out and it is self-explanatory that his he is lacking in the upper lip department. As I have mentioned on a number of occasions, I am not particularly gifted in this area either hence my suggestion that I might get two for one collagen implants for his birthday.
I have know Notoplip since 1991. It was at this time that the last of my single friends "Eddie Cruise" decided to go on an around the world trip. I was invited to go with him, but travelling has never really interested me. It's not something that I dislike and I enjoy holidays and different environments but I have never really had the urge to go on voyages of exploration. I suppose that I have always believed that there is plenty that you can discover right under you nose. One of my greatest discoveries took place when looking at my feet and a paving stone in my favourite Ibiza night club. I pondered for moment whilst on my five month visit and decided that I missed Kitten and needed to be with her and that was the precursor to marriage and two children. Of course, I didn't go home to her but simply conducted a weekend trip to old blighty and exported her to Ibiza
Continuing with the Eddie Cruise" theme; Eddie Cruise" is so called because when we were in our twenties women regularly said to him "you look like Eddie Kidd" or "you look like Tom Cruise". Naturally, he was extremely humble and never thought to mention this to anyone else.
So, Eddie Cruise was the last of the line of friends such as Ibanez Man, Car Crash, Mark the Shark and Lights On who had travelled from my school days or my late teenage days of drinking by the Kingston Riverside and had settled down or had moved on.
Eddie Cruise suggested that I take his job working in a night club bar when he left and that is when I met Notoplip and co. Notoplip had been lodging at Taggot's (Flying Squad) and Eddie Cruise had been there too. The common bond with these chaps was football, all being players.
It was through meeting Notoplip and Taggot that I developed a circle of friends that I would socialise with for many years and all bar one of who I still see regularly. There were five of us who used to cause mayhem wherever we went and Kitten described us as being like "a circus coming to town". She, like many others who had made similar observations, was describing us from the vantage point of being behind a bar in which we were drinking.
There is Notoplip, Billy The Fish, DA Decorator and Bum Nose as well as myself Swordfish.
I could write realms (as could the News of the World) on our exploits, but it is suffice to say that these friends have proved to be worth their weight in gold to me throughout my 20's and 30's up until and including these difficult days.
I am still in touch with my old friends and I have met many other great friends along the way. The bulk of my socialising though revolves around the friends I met in my twenties and Notoplip and Sushi have obviously been particularly close at hand during recent times.
It is always reassuring that when you have had a very difficult day like I have today that there is someone who is going to ring you up and take the piss out of you whilst also understanding your position. It is not a role that a mother or a wife can assume.
Tuesday 30 November 2010
A Difficult Twenty Four Hours
Apart from having a very disappointed Mrs Swordfish (aka Kitten), who was all glammed up and ready for the Strictly Christmas special it has also been a physically difficult twenty four hours.
The milkshake compounds that I have been using for two months are suddenly not agreeing with me and the last day has not been nice. Unsurprisingly I have stopped using them and am now consuming a few gentle calories.
It is like going back to square one. I have gradually improved due to the stent over the last couple of weeks but now I barely feel better than when I was in hospital. I was due in work today to talk with my Managing Director, Sam the Eagle and the Chief Executive Officer about the route forward work wise, but I had to cancel. In my condition and with the snow there was no way of making it in and these conversations are best held in person rather than conference call. I was also due to meet with the ex-managing director before he resumes his "life of Reilly" as a ski instructor in Europe later this week.
At these times it is important to take it as easy as possible and I have retired to my specially kitted out bedroom with TV on and iPhone at hand. I remember when my grandfather was bedridden and my nan had intercoms for him to communicate his needs. My sister and I used to wait all day for the opportunity to use the intercoms and also to take his food through to him. Just substitute mobile phones for intercoms!
The milkshake compounds that I have been using for two months are suddenly not agreeing with me and the last day has not been nice. Unsurprisingly I have stopped using them and am now consuming a few gentle calories.
It is like going back to square one. I have gradually improved due to the stent over the last couple of weeks but now I barely feel better than when I was in hospital. I was due in work today to talk with my Managing Director, Sam the Eagle and the Chief Executive Officer about the route forward work wise, but I had to cancel. In my condition and with the snow there was no way of making it in and these conversations are best held in person rather than conference call. I was also due to meet with the ex-managing director before he resumes his "life of Reilly" as a ski instructor in Europe later this week.
At these times it is important to take it as easy as possible and I have retired to my specially kitted out bedroom with TV on and iPhone at hand. I remember when my grandfather was bedridden and my nan had intercoms for him to communicate his needs. My sister and I used to wait all day for the opportunity to use the intercoms and also to take his food through to him. Just substitute mobile phones for intercoms!
Monday 29 November 2010
The Empire Strikes Back
I was busy getting ready for the Strictly Come Dancing trip when this disease demonstrated capably why it is called the "Big C".
It is a gastric cancer that I have at the junction of the stomach at the oesophagus and the stomach. Problems at the upper end with food are common place, but not worth describing in detail everyday because it would make the blog unreadable.
Today, the disease mounted a double pronged attack on me a quarter of an hour before I was due to leave and that was that. I spent the next two hours recovering through sleep and I missed both the opportunity to greet Brucie with a "Good game, good game" and also the opportunity to tell Gavin Henson to stop being a "big Jessie" and concentrate on working to getting the Wales rugby jersey on again.
My thanks to Mr and Mrs Paul the Banker for the opportunity and I am just sorry that I wasn't able to take it.
Living with this disease is a day by day existence where you are constantly striving to keep your balance on a tightrope. You never know when an injudicious hand will reach out and shake you off and you don't know what the damage will be each time you fall.
It is a gastric cancer that I have at the junction of the stomach at the oesophagus and the stomach. Problems at the upper end with food are common place, but not worth describing in detail everyday because it would make the blog unreadable.
Today, the disease mounted a double pronged attack on me a quarter of an hour before I was due to leave and that was that. I spent the next two hours recovering through sleep and I missed both the opportunity to greet Brucie with a "Good game, good game" and also the opportunity to tell Gavin Henson to stop being a "big Jessie" and concentrate on working to getting the Wales rugby jersey on again.
My thanks to Mr and Mrs Paul the Banker for the opportunity and I am just sorry that I wasn't able to take it.
Living with this disease is a day by day existence where you are constantly striving to keep your balance on a tightrope. You never know when an injudicious hand will reach out and shake you off and you don't know what the damage will be each time you fall.
Strictly Come Dancing Christmas Special and the Barclays Board
"Paul the Banker" and his good lady wife were due to attend the recording of the Strictly Come Dancing Christmas special this evening, but the inclement weather has deterred them from making the journey.
Paul has very generously offered the tickets mine and Kitten's way and so Kitten is in for a treat this evening.
I have attended a few television recording sessions before but never with Kitten. We will be making our way up to White City for about 5:00pm.
It has been very noticeable over the last couple of weeks that there have been more people on the blog and especially that they are not shy in using the comments facility. That is because I chose to widen the circulation of the blog beyond my immediate family and friends to the sole Internet forum that I participate in.
The Internet forum is the Interactive Investor forum and is a financial website. Although, I have not met these people in the flesh, I have been posting on the forum for three and a half years and so have built up a good understanding with many of them over this time. A few have even been aware of and have been following the blog since close to its inception, Barcap, Tas Devil is Back and Secret Squirrel being amongst them.
Many thanks to Mr and Mrs Paul the Banker for this evening (there will be a full match report to come) and many thanks to all the board members for their kind messages and words of support.
Paul has very generously offered the tickets mine and Kitten's way and so Kitten is in for a treat this evening.
I have attended a few television recording sessions before but never with Kitten. We will be making our way up to White City for about 5:00pm.
It has been very noticeable over the last couple of weeks that there have been more people on the blog and especially that they are not shy in using the comments facility. That is because I chose to widen the circulation of the blog beyond my immediate family and friends to the sole Internet forum that I participate in.
The Internet forum is the Interactive Investor forum and is a financial website. Although, I have not met these people in the flesh, I have been posting on the forum for three and a half years and so have built up a good understanding with many of them over this time. A few have even been aware of and have been following the blog since close to its inception, Barcap, Tas Devil is Back and Secret Squirrel being amongst them.
Many thanks to Mr and Mrs Paul the Banker for this evening (there will be a full match report to come) and many thanks to all the board members for their kind messages and words of support.
Sunday 28 November 2010
The Italian Hairdresser
It is certainly good to have a lie in today with both of the children on sleepovers. A good dose of oramorph before bed time ensured that I only woke once and did not fully awake from the morning misty haze that morphine invokes from the pool of dreams.
So, I have a short novel to start reading (recommended by RigelBB) and the Sunday times before settling down to the Newcastle vs Chelsea match on the box.
I will be joined by the Italian Hairdresser who is one of my few friends to be substantially my junior.
I met the Italian Hairdresser when he was 16 and sweeping floors and making cups fo coffee in Toni and Guy Kingston-upon-Thames. He is 10 years (less a couple of weeks) younger than me. We share similar extrovert personalites; for those who like their astrology we are both Leo sun signs. Over the years we have also had a common bond through house music.
For many years we were acquaintances who got on well whenever we bumped into each other, but there became an extra dimension to our relationship when I went to Ibiza for the summer in 2000. I knew that the hairdresser loved his clubbing and partying. At the time I would have been 35 and him 25. The big night / day in Ibiza for me would be to go to the Manumission party on the Monday night / Tuesday morning and then onto the Space Terrace for the after party all day Tuesday and then onto the party at Bora Bora beach before retiring to my good friend ("HehHehHeh's") bar into the early hours of Wednesday morning.
As I was getting ready at about 11pm on the Monday night I would always ring the hairdresser. He didn't work Monday's (most hairdressers work Saturdays) so I would always catch him as he was preparing to go to bed knowing that his weekend was coming to an end. In other words I would stick the sounds on in my Ibicencan flat and start whooping on about how I was well rested and getting ready to go and party for the next thirty or so hours.
You can imagine that this was like sticking a stake through a vampire's heart. Not much fun for him but superb banter from me. Of course, I could always ring him from Ses Salinas beach on the Wednesday when I was recovering in 35 degree Celsius heat with Sangria and Calamari if I felt like reopening the wound.
On one particular week I rang his phone and a stranger answered. He told me that he had the hairdresser's phone and the hairdresser had his and that the Hairdresser was in Ibiza with girlfriend in tow. To this day I do not know what the phone thing was all about, but I rang the number he gave me and sure enough Italian hairdresser 1 and Italian hairdresser 2 were both staying close by.
It was one of those occasions when all roads lead to Ibiza because this time overlapped with a week that my parents had come out to see me and the "Boxer" was also out with his stag party. The stag party had the full complement of mates including "Notoplip", "Sound Man" and "Big Boss", so it really was a full on week.
Unfortunately most of the best tales from the next few days are unprintable in a public forum without being self-incriminating but it is enough to say that we had an excellent few days and the Hairdresser and I lay down bonds that have bridged the age gap from now until this day.
Whilst I cannot share most of the humour, I was able to look after him and his now wife to make sure that they had a great holiday. This was made easier by the fact that I had my convertible BMW with me out there so I went with them to my favourite beaches and clubs.
We had one particularly afternoon on a beach, which goes down in folklore and not for all the right reasons. We pitched up on Ses Salinas beach at the swankiest of the four beach bars "Malibu". Getting your footwear right in a hot climate is very important even though I do not generally suffer from smelly feet. I had taken to wearing plastic soled beach shoes and had been unware of their odour despite having been warned on an earlier visit by Kitten. The hairdressers had been enquiring about a bad smell for quite a while before pin-pointing my shoes as the culprits. We were in fits of laughter because they really were bad and it was quite amazing that I had not noticed that I had been walking around in smelly shoes for quite some time. No amount of rinsing them in the sea would cure them and we resorted to burying them in the sand until we left.
Perhaps the most unusual event of our chilled out day (apparently the hairdressers' last before returning home) was one of those coincidences that you wonder where they come from. The hairdresser and I had been sharing some of our favourite meditteranean "rolled up cigarettes" and were engaging our imaginations. The Malibu beach bar is not the best beach bar on the beach because it veers towards the pretentious whereas the Jockey Club further down captures the vibe better.
You see waiters coming down onto the beach and delivery drinks to the punters with their tea-towels over their upstretched arms that are carrying the drinks. The sea is littered power boats, yachts and some of them extremely grandiose. Consider the Lady Moura that was a frequent visitor to the beach whilst I was out there.
As Italian hairdresser and I were engaging our imaginations we noticed a motorised dingy at the water's edge and we speculated that it would be amazing if one of the waiter's came down from the Malibu resplendent with drinks and tea-towel, started the motor and hot-footed it out ot one of the nearby power-boats or yachts. No sooner had we finished our sentence than a waiter came out of the bar, down to the water's edge, started the motor and hot-footed it out to a nearby powerboat.
I had been to the beach several times and had not seen this happen before, probably because it was early season. It came to be a common sight in the height of the summer but, at the time, Italian Hairdresser and I were quite taken aback. So much so that we both gazed intently at our "rolled up cigarette", simultaneously threw our gaze to the waiter in the dinghy, back to the "rolled up cigaretted" then back to each others incredulous faces and then burst out laughing. "Good sheeeeet, huh".
Of course this was Italian Hairdressers' penultimate day, or so he claimed. Suffice to say that hairdresser's must have scissors because they are not the sharpest tools in the box themselves (I jest). It had turned out that their apartments were only a couple of hundred metres from where I was staying and, no sooner had I dropped them off than Italian Hairdresser was ringing me and showing his tender years by his blind panic.
"Swordfish" they have chucked all of our stuff out of the apartment in black bags. It took me a couple of minutes to calm him down and a couple of minutes to work out that he was returning to London that day and had not checked out of his room. He had simply assumed a date based on number of nights and had not counted the first, nor checked his tickets. He was still trying to justify his position despite the weight of evidence being obvious to the most supportive of bystanders.
A bit more cool headedness and I worked out that there was still and hour plus until his flight. I mulle dhtis over whilst he panicked that the airport transport had already left. So, hood down and plastic bags unpacked into suitcases we headed over the San Jose hills to Eivissa airport where a 30 minute pre-flight arrival is good enough for those in the know.
As, I said the best stories I cannot print here but that gives some insight into how I know Italian man and his good lady wife.
So, I have a short novel to start reading (recommended by RigelBB) and the Sunday times before settling down to the Newcastle vs Chelsea match on the box.
I will be joined by the Italian Hairdresser who is one of my few friends to be substantially my junior.
I met the Italian Hairdresser when he was 16 and sweeping floors and making cups fo coffee in Toni and Guy Kingston-upon-Thames. He is 10 years (less a couple of weeks) younger than me. We share similar extrovert personalites; for those who like their astrology we are both Leo sun signs. Over the years we have also had a common bond through house music.
For many years we were acquaintances who got on well whenever we bumped into each other, but there became an extra dimension to our relationship when I went to Ibiza for the summer in 2000. I knew that the hairdresser loved his clubbing and partying. At the time I would have been 35 and him 25. The big night / day in Ibiza for me would be to go to the Manumission party on the Monday night / Tuesday morning and then onto the Space Terrace for the after party all day Tuesday and then onto the party at Bora Bora beach before retiring to my good friend ("HehHehHeh's") bar into the early hours of Wednesday morning.
As I was getting ready at about 11pm on the Monday night I would always ring the hairdresser. He didn't work Monday's (most hairdressers work Saturdays) so I would always catch him as he was preparing to go to bed knowing that his weekend was coming to an end. In other words I would stick the sounds on in my Ibicencan flat and start whooping on about how I was well rested and getting ready to go and party for the next thirty or so hours.
You can imagine that this was like sticking a stake through a vampire's heart. Not much fun for him but superb banter from me. Of course, I could always ring him from Ses Salinas beach on the Wednesday when I was recovering in 35 degree Celsius heat with Sangria and Calamari if I felt like reopening the wound.
On one particular week I rang his phone and a stranger answered. He told me that he had the hairdresser's phone and the hairdresser had his and that the Hairdresser was in Ibiza with girlfriend in tow. To this day I do not know what the phone thing was all about, but I rang the number he gave me and sure enough Italian hairdresser 1 and Italian hairdresser 2 were both staying close by.
It was one of those occasions when all roads lead to Ibiza because this time overlapped with a week that my parents had come out to see me and the "Boxer" was also out with his stag party. The stag party had the full complement of mates including "Notoplip", "Sound Man" and "Big Boss", so it really was a full on week.
Unfortunately most of the best tales from the next few days are unprintable in a public forum without being self-incriminating but it is enough to say that we had an excellent few days and the Hairdresser and I lay down bonds that have bridged the age gap from now until this day.
Whilst I cannot share most of the humour, I was able to look after him and his now wife to make sure that they had a great holiday. This was made easier by the fact that I had my convertible BMW with me out there so I went with them to my favourite beaches and clubs.
We had one particularly afternoon on a beach, which goes down in folklore and not for all the right reasons. We pitched up on Ses Salinas beach at the swankiest of the four beach bars "Malibu". Getting your footwear right in a hot climate is very important even though I do not generally suffer from smelly feet. I had taken to wearing plastic soled beach shoes and had been unware of their odour despite having been warned on an earlier visit by Kitten. The hairdressers had been enquiring about a bad smell for quite a while before pin-pointing my shoes as the culprits. We were in fits of laughter because they really were bad and it was quite amazing that I had not noticed that I had been walking around in smelly shoes for quite some time. No amount of rinsing them in the sea would cure them and we resorted to burying them in the sand until we left.
Perhaps the most unusual event of our chilled out day (apparently the hairdressers' last before returning home) was one of those coincidences that you wonder where they come from. The hairdresser and I had been sharing some of our favourite meditteranean "rolled up cigarettes" and were engaging our imaginations. The Malibu beach bar is not the best beach bar on the beach because it veers towards the pretentious whereas the Jockey Club further down captures the vibe better.
You see waiters coming down onto the beach and delivery drinks to the punters with their tea-towels over their upstretched arms that are carrying the drinks. The sea is littered power boats, yachts and some of them extremely grandiose. Consider the Lady Moura that was a frequent visitor to the beach whilst I was out there.
As Italian hairdresser and I were engaging our imaginations we noticed a motorised dingy at the water's edge and we speculated that it would be amazing if one of the waiter's came down from the Malibu resplendent with drinks and tea-towel, started the motor and hot-footed it out ot one of the nearby power-boats or yachts. No sooner had we finished our sentence than a waiter came out of the bar, down to the water's edge, started the motor and hot-footed it out to a nearby powerboat.
I had been to the beach several times and had not seen this happen before, probably because it was early season. It came to be a common sight in the height of the summer but, at the time, Italian Hairdresser and I were quite taken aback. So much so that we both gazed intently at our "rolled up cigarette", simultaneously threw our gaze to the waiter in the dinghy, back to the "rolled up cigaretted" then back to each others incredulous faces and then burst out laughing. "Good sheeeeet, huh".
Of course this was Italian Hairdressers' penultimate day, or so he claimed. Suffice to say that hairdresser's must have scissors because they are not the sharpest tools in the box themselves (I jest). It had turned out that their apartments were only a couple of hundred metres from where I was staying and, no sooner had I dropped them off than Italian Hairdresser was ringing me and showing his tender years by his blind panic.
"Swordfish" they have chucked all of our stuff out of the apartment in black bags. It took me a couple of minutes to calm him down and a couple of minutes to work out that he was returning to London that day and had not checked out of his room. He had simply assumed a date based on number of nights and had not counted the first, nor checked his tickets. He was still trying to justify his position despite the weight of evidence being obvious to the most supportive of bystanders.
A bit more cool headedness and I worked out that there was still and hour plus until his flight. I mulle dhtis over whilst he panicked that the airport transport had already left. So, hood down and plastic bags unpacked into suitcases we headed over the San Jose hills to Eivissa airport where a 30 minute pre-flight arrival is good enough for those in the know.
As, I said the best stories I cannot print here but that gives some insight into how I know Italian man and his good lady wife.
Saturday 27 November 2010
Mash Up
The wonderful soup of the Crazy Frog has delayed me in attempting something more solid, but tonight was the night.
I had a small plate of very creamy mash before we went out and it travelled fine.
Next stop "mash and mince" again.
The more variety that I get get the better, but it must be said that I already feel much much better physically than a couple of weeks ago.
I had a small plate of very creamy mash before we went out and it travelled fine.
Next stop "mash and mince" again.
The more variety that I get get the better, but it must be said that I already feel much much better physically than a couple of weeks ago.
London Boulevard
It will be nice to do something normal tonight, so I am taking Kitten out on a date to the pictures.
We are going to see the gangster flick London Boulevard starring Ray Winstone at Wimbledon and I hasten to add that the choice of film is hers; I am not complaining though.
Chances to go out without the children are few and far between so we will be sure to make the most of it.
We are going to see the gangster flick London Boulevard starring Ray Winstone at Wimbledon and I hasten to add that the choice of film is hers; I am not complaining though.
Chances to go out without the children are few and far between so we will be sure to make the most of it.
Feeling Good
I was able to get myself ready to go to watch Huffty play football this morning, such are the benefits of the stent and eating being so much easier. He was pleased to win 4-2 and also to receive man of the match.
Boogle is out of the frame this weekend as she has not one but two sleepovers. One last night and another tonight at Lance Corporal's house with her daughter Pocahontas. My daughter is growing up! I have not been able to be as involved as I would like with Boogle recently because our shared activity was ice-skating. I will have to wait for further improvement or think of another channel in which to spend real quality time with my daughter. The obvious one is to get her busy on my DJ decks as she is always hankering after some time on them.
Huffty, also has a sleepover at the Crazy Frog's house tonight with her son Frog Leg 1. This means that Kitten and I have the evening to ourselves. I am not sure what we will doing yet, but I guess we cannot do anything until after the Wales vs New Zealand rugby match :-)
It will be lovely to have a free evening together though, so I will see what floats Kitten's boat.
Meanwhile it is time to turn our thoughts to Christmas. We haven't done so far for obvious reasons but there isn't any reason why this one can't be a really good one. Something tells me that the children are going to be spoilt rotten!
Boogle is out of the frame this weekend as she has not one but two sleepovers. One last night and another tonight at Lance Corporal's house with her daughter Pocahontas. My daughter is growing up! I have not been able to be as involved as I would like with Boogle recently because our shared activity was ice-skating. I will have to wait for further improvement or think of another channel in which to spend real quality time with my daughter. The obvious one is to get her busy on my DJ decks as she is always hankering after some time on them.
Huffty, also has a sleepover at the Crazy Frog's house tonight with her son Frog Leg 1. This means that Kitten and I have the evening to ourselves. I am not sure what we will doing yet, but I guess we cannot do anything until after the Wales vs New Zealand rugby match :-)
It will be lovely to have a free evening together though, so I will see what floats Kitten's boat.
Meanwhile it is time to turn our thoughts to Christmas. We haven't done so far for obvious reasons but there isn't any reason why this one can't be a really good one. Something tells me that the children are going to be spoilt rotten!
Love is the Chosen Currency
Apart from coming to terms with the physical challenges of the last week the most important item on the agenda has been to determine how we move forward.
What is so difficult is that although I know that my disease has progressed substantially over the last short period I do not know how long I will be here for and what degree of physical deterioriation there will be and over what time period.
I have to be optimistic but I also have to get my house in order and front load everything because one has to assume that my I will be physically better at the beginning of the journey.
Many people have asked me about things that I would like to do and I am being perfectly honest when I say that there isn't really much that I want to do. The reason for this is that the things that have always been special to me are shared and often spontaneous moments rather than planned experiences. However, as I am feeling better each day I realise that planning and sharing experiences will be very worthwhile.
I have always been a loving and caring person, but that isn't necessarily immediately noticeable. Anger and perceived injustice have always been huge driving forces for me and without them I would be completely bone idle. Of course, I have worked to smooth my personality as I have got older but I have always been someone who reflects and listens but also someone who appears to be very opinionated and preferring to talk when in the moment.
The point of this ramble is that I somehow feel released from my life-long personality challenges. I know that everyone is on my side and the generosity of spirit is palpable. The comments on the blog (from those not frightened of computers), the phone calls, text messages, emails and visits all make me feel warm and keep my spirit high. The currency that I am dealing in is no longer the struggle of the provider and striver it now becomes the gift of being able to share my love.
I have been busying myself all week getting my head around the logistics of the future and there will be both work and financial conversations taking place next week. If you told me for definite that I had three months to live then I would only consider working in a capacity to help hand over my responsibilities, but otherwise there needs to be a balance struck. After all we have young children who benefit from the routine of going to school each day and the general stability that family life affords them.
If there are things that I would like to do for myself then they are simple things like going to a concert or show at the Albert Hall. I view places like the Albert Hall as places of great spirit and I like the fact that it is circular. To witness something in the round there would be the ultimate. Similarly, I have not been to the Globe theatre, but that will have to wait until April as it is now closed for the winter. When considering other more exotic things then my physical condition must also be brought into consideration. I am still in reasonable nick but heavy physical exercise is out of the question.
Then it comes to the main agenda, which is family and friends. The focus must start with children, Kitten and the parents and then my close family and close friends. As my children are still young it is less important to me to focus on events than it is to leave them with a feeling of who I am. Whilst I say that events are less important they are still pivotal and a holiday would be top of most peoples' agenda. There is perhaps a limit to what I can do because being abroad and being caught by the condition would be a bad place to be. The travelling would be very difficult too, especially as we are now in the winter months which narrows the options if looking for sun. There are other options to consider though.
What I would really like to do is to live a relaxed but active life and it is far easier to be relaxed when the veil of hope provided by medical treatment has been removed. In fact I wish that I had been able to live with such a mindset throughout my adult life. I guess that we all struggle and some level though and that must be considered healthy, otherwise we are not motivated to move forward.
My personality will not change substantially, it is the skin which I have grown into. The humour will be as dark and acerbic as usual, but the love that I feel for life and for people can now take a more prominent position on the stage. I fail to see any negatives in that.
What is so difficult is that although I know that my disease has progressed substantially over the last short period I do not know how long I will be here for and what degree of physical deterioriation there will be and over what time period.
I have to be optimistic but I also have to get my house in order and front load everything because one has to assume that my I will be physically better at the beginning of the journey.
Many people have asked me about things that I would like to do and I am being perfectly honest when I say that there isn't really much that I want to do. The reason for this is that the things that have always been special to me are shared and often spontaneous moments rather than planned experiences. However, as I am feeling better each day I realise that planning and sharing experiences will be very worthwhile.
I have always been a loving and caring person, but that isn't necessarily immediately noticeable. Anger and perceived injustice have always been huge driving forces for me and without them I would be completely bone idle. Of course, I have worked to smooth my personality as I have got older but I have always been someone who reflects and listens but also someone who appears to be very opinionated and preferring to talk when in the moment.
The point of this ramble is that I somehow feel released from my life-long personality challenges. I know that everyone is on my side and the generosity of spirit is palpable. The comments on the blog (from those not frightened of computers), the phone calls, text messages, emails and visits all make me feel warm and keep my spirit high. The currency that I am dealing in is no longer the struggle of the provider and striver it now becomes the gift of being able to share my love.
I have been busying myself all week getting my head around the logistics of the future and there will be both work and financial conversations taking place next week. If you told me for definite that I had three months to live then I would only consider working in a capacity to help hand over my responsibilities, but otherwise there needs to be a balance struck. After all we have young children who benefit from the routine of going to school each day and the general stability that family life affords them.
If there are things that I would like to do for myself then they are simple things like going to a concert or show at the Albert Hall. I view places like the Albert Hall as places of great spirit and I like the fact that it is circular. To witness something in the round there would be the ultimate. Similarly, I have not been to the Globe theatre, but that will have to wait until April as it is now closed for the winter. When considering other more exotic things then my physical condition must also be brought into consideration. I am still in reasonable nick but heavy physical exercise is out of the question.
Then it comes to the main agenda, which is family and friends. The focus must start with children, Kitten and the parents and then my close family and close friends. As my children are still young it is less important to me to focus on events than it is to leave them with a feeling of who I am. Whilst I say that events are less important they are still pivotal and a holiday would be top of most peoples' agenda. There is perhaps a limit to what I can do because being abroad and being caught by the condition would be a bad place to be. The travelling would be very difficult too, especially as we are now in the winter months which narrows the options if looking for sun. There are other options to consider though.
What I would really like to do is to live a relaxed but active life and it is far easier to be relaxed when the veil of hope provided by medical treatment has been removed. In fact I wish that I had been able to live with such a mindset throughout my adult life. I guess that we all struggle and some level though and that must be considered healthy, otherwise we are not motivated to move forward.
My personality will not change substantially, it is the skin which I have grown into. The humour will be as dark and acerbic as usual, but the love that I feel for life and for people can now take a more prominent position on the stage. I fail to see any negatives in that.
Friday 26 November 2010
Autumnal Walk With Kitten
Today is a crisp but beautifully sunny day, so I suggested to Kitten that we take a walk in Richmond Park.
The Pen Ponds is my favourite area for walking and it brings the best out of the autumn gold.
There was ice on the ponds today and you can see the birds standing upon it.
The Pen Ponds is my favourite area for walking and it brings the best out of the autumn gold.
There was ice on the ponds today and you can see the birds standing upon it.
At this point my attitude is very much subject to a paradigm shift. When I went on this walk a few months earlier I was totally wrapped up in the mindset of getting myself better. Now I feel more relaxed and able to enjoy the walk, the day and Kitten's company for what it is. Only the pain from the stent throws a bit of a shadow over the light but that is all manageable.
There was lots to watch today including a charge of deer across the park the speed at which I don't think I have witnessed before. My camera is not good enough to the capture the detail, so I didn't even bother trying. However, the view is worth showing for its own sake as you look to the Sheen gate of the park from the Pen Ponds.
Thursday 25 November 2010
Key Talks with the Child Psychologist
Uppermost in our minds is how and when we break the latest news to our children.
We have had today's visit pencilled in for a few weeks as part of regular visits to ensure that we help our children through this process in the best possible way. With things taking a nasty turn for the worse it now becomes more important than ever that we handle things well.
The consensus was that we should tell the children soon, so that they continue to share this journey with us, otherwise we are trying to hold back our feelings and will be sending out mixed messages.
We had been wondering whether we could eek it out until after Christmas but Boogle's sensitivity has meant that she is already on the trail even though she does not know what is going on. She is feeling something and has been pretty close by in her articulation.
It was suggested that Christmas might actually be a better time if we were all of the same mind as a continuation of our approach all the way through.
Telling the children will not be easy and neither will it be easy dealing with the aftermath, but it has to be done.
Of course, we will not be painting it in black and white but they will be told that daddy will not be having his operation to get better and we will field the thoughts and questions as they come.
We have had today's visit pencilled in for a few weeks as part of regular visits to ensure that we help our children through this process in the best possible way. With things taking a nasty turn for the worse it now becomes more important than ever that we handle things well.
The consensus was that we should tell the children soon, so that they continue to share this journey with us, otherwise we are trying to hold back our feelings and will be sending out mixed messages.
We had been wondering whether we could eek it out until after Christmas but Boogle's sensitivity has meant that she is already on the trail even though she does not know what is going on. She is feeling something and has been pretty close by in her articulation.
It was suggested that Christmas might actually be a better time if we were all of the same mind as a continuation of our approach all the way through.
Telling the children will not be easy and neither will it be easy dealing with the aftermath, but it has to be done.
Of course, we will not be painting it in black and white but they will be told that daddy will not be having his operation to get better and we will field the thoughts and questions as they come.
Wednesday 24 November 2010
Spirit Level Rises
The mood in the camp is definitely lifting.
An ability to consume food easier is helping enormously, whilst events like last night are helping too.
The fact that Huffty and I met some of our favourite players was fun, but it is also not so important in the wider picture. What was significant was that there was a little joy in the family.
Kitten had started by saying that she didn't want to go last night because she did want our daughter "Boogle" to feel left out. So, the plan was for me to go with Notoplip. I thought about this over the weekend and didn't agree. My thinking was that if something good happens then you shouldn't sweep it under the carpet so that nobody has their nose pushed out of joint. It is better to celebrate the event and relax in the knowledge that something good will happen too for the other child. It is all part of the growing up experience and there are also ways of softening the blow.
Boogle loves her arts and crafts, so on Monday I treated her to the Nintendo DS Arts and Crafts game, which she fell in love with immediately.
So, I persuaded Kitten to come up to what really was a family event. There were three free tickets available, which explains the numbers and Boogle had to attend a regular training event in any case.
Kitten loved the whole experience but that wasn't the only benefit. Her presence allowed me to take a back seat with the Huffty, which was just as well because it was a long evening. It was also an opportunity for her to see him in an environment which he had previously only shared with his dad.
She was thoroughly impressed, but I don't think that there is any chance of her supported a decent team any time soon.
An ability to consume food easier is helping enormously, whilst events like last night are helping too.
The fact that Huffty and I met some of our favourite players was fun, but it is also not so important in the wider picture. What was significant was that there was a little joy in the family.
Kitten had started by saying that she didn't want to go last night because she did want our daughter "Boogle" to feel left out. So, the plan was for me to go with Notoplip. I thought about this over the weekend and didn't agree. My thinking was that if something good happens then you shouldn't sweep it under the carpet so that nobody has their nose pushed out of joint. It is better to celebrate the event and relax in the knowledge that something good will happen too for the other child. It is all part of the growing up experience and there are also ways of softening the blow.
Boogle loves her arts and crafts, so on Monday I treated her to the Nintendo DS Arts and Crafts game, which she fell in love with immediately.
So, I persuaded Kitten to come up to what really was a family event. There were three free tickets available, which explains the numbers and Boogle had to attend a regular training event in any case.
Kitten loved the whole experience but that wasn't the only benefit. Her presence allowed me to take a back seat with the Huffty, which was just as well because it was a long evening. It was also an opportunity for her to see him in an environment which he had previously only shared with his dad.
She was thoroughly impressed, but I don't think that there is any chance of her supported a decent team any time soon.
Last Night's Chelsea Visit
Well, what a good evening and what a very excited child!
We had to be at Stamford Bridge for 5:45pm and were immediately taken through the itinerary.
The food looked yummy, but I was restricted to tomato soup and the Huffty had eaten and was so excited that I thought his head would explode.
There were two mascots and we spent time with the other family in the area where the Chelsea tours start off at before going to the dressing room at around 6:30pm. This area is where the wives and girlfriends watch the game from so that they are not hassled by the punters. Kitten was most disappointed that only the dads and the children were allowed in the dressing room, which I suppose would have been many young ladies real idea of what a nightclub should look like.
So, Huffty and I were led around the stadium and through the press room to the dressing room. There was a full complement of players though the team was a young one as the Champions league group was already pretty much sown up. So, there were a few faces missing through injury or being rested but Huffty met and got the autographs for many of the big names.
A lot of the players are either on the treatment tables or sitting with they headphones on, so you do feel initially that you don't like to intrude but an official encourages you to approach the players. Because this was a younger team I have to confess that I know most of their names but not yet all of their faces, which makes things a little more difficult.
The first we saw was Joe McEachran who is a 17 year old hotly tipped for stardom. I have seen him make a few substitute appearances, but this was his first Chelsea start. We bagged him in the autograph book straight away. Then the list becomes a who's who of football. Apart from the youngsters there was Flourent Malouda, Didier Drogba, Nicholas Anelka, Petr Cech and John Obi Mikel. We approached the treatment tables, which I felt a little more uncomfortable with but we bagged Paolo Ferreira, Branislav Ivanovic and Ramires. Solomon Kalou was there but we missed him, Ashley Cole, Frank Lampard and Michael Essien were also either rested or injured.
Although John Terry wasn't playing due to injury he was in the dressing room and was very amenable. The senior players are very much used to this and I must say that players like Malouda, Anelka, Drogba and others were very good with the Huffty and also relaxed in indulging in idle chit chat with me.
Whilst approaching all the players and getting the Huffty's autograph book and shirt signed I completely forgot that we were allowed to take photos. Doh! However, I remembered at the last minute and rather than disturb all the players again I just asked John Terry. I have tried to keep the blog fairly anonymous but many of you have now seen the Huffty on the television, so here is the picture.
The Huffty was quite shy in the dressing room, which is quite understandable when a child comes face to face with not just one but many of his idols. Of course, I did my best to get him involved and he thoroughly enjoyed it.
As we left the dressing room the manager Carlo Ancelloti came out of his room, so we grabbed him too.
We went back to join Kitten and then the Huffty left to do his mascot duties. He waited in the tunnel whilst the players warmed up on the pitch and, perhaps, his highlight of the evening was when they went into the dressing room after the warm up as all of the players "high-fived" him as they came down the tunnel.
Kitten and I were standing at the side of the pitch with all the official photographers whilst the ceremonies took place so we managed a little video footage too.
The Huffty now has his autograph book, signed shirt and the match programme (with his picture in and a few words) as souvenirs. Notoplip's son (Sonic) also got a mention in the programme as being a regular attendee at the matches with Huffty, so we got him a copy too.
I dare say that the John Terry picture will be blown up and put on his bedroom wall.
Kitten has watched the Sky footage several times already and although it is short it is memorable for all.
We had to be at Stamford Bridge for 5:45pm and were immediately taken through the itinerary.
The food looked yummy, but I was restricted to tomato soup and the Huffty had eaten and was so excited that I thought his head would explode.
There were two mascots and we spent time with the other family in the area where the Chelsea tours start off at before going to the dressing room at around 6:30pm. This area is where the wives and girlfriends watch the game from so that they are not hassled by the punters. Kitten was most disappointed that only the dads and the children were allowed in the dressing room, which I suppose would have been many young ladies real idea of what a nightclub should look like.
So, Huffty and I were led around the stadium and through the press room to the dressing room. There was a full complement of players though the team was a young one as the Champions league group was already pretty much sown up. So, there were a few faces missing through injury or being rested but Huffty met and got the autographs for many of the big names.
A lot of the players are either on the treatment tables or sitting with they headphones on, so you do feel initially that you don't like to intrude but an official encourages you to approach the players. Because this was a younger team I have to confess that I know most of their names but not yet all of their faces, which makes things a little more difficult.
The first we saw was Joe McEachran who is a 17 year old hotly tipped for stardom. I have seen him make a few substitute appearances, but this was his first Chelsea start. We bagged him in the autograph book straight away. Then the list becomes a who's who of football. Apart from the youngsters there was Flourent Malouda, Didier Drogba, Nicholas Anelka, Petr Cech and John Obi Mikel. We approached the treatment tables, which I felt a little more uncomfortable with but we bagged Paolo Ferreira, Branislav Ivanovic and Ramires. Solomon Kalou was there but we missed him, Ashley Cole, Frank Lampard and Michael Essien were also either rested or injured.
Although John Terry wasn't playing due to injury he was in the dressing room and was very amenable. The senior players are very much used to this and I must say that players like Malouda, Anelka, Drogba and others were very good with the Huffty and also relaxed in indulging in idle chit chat with me.
Whilst approaching all the players and getting the Huffty's autograph book and shirt signed I completely forgot that we were allowed to take photos. Doh! However, I remembered at the last minute and rather than disturb all the players again I just asked John Terry. I have tried to keep the blog fairly anonymous but many of you have now seen the Huffty on the television, so here is the picture.
The Huffty was quite shy in the dressing room, which is quite understandable when a child comes face to face with not just one but many of his idols. Of course, I did my best to get him involved and he thoroughly enjoyed it.
As we left the dressing room the manager Carlo Ancelloti came out of his room, so we grabbed him too.
We went back to join Kitten and then the Huffty left to do his mascot duties. He waited in the tunnel whilst the players warmed up on the pitch and, perhaps, his highlight of the evening was when they went into the dressing room after the warm up as all of the players "high-fived" him as they came down the tunnel.
Kitten and I were standing at the side of the pitch with all the official photographers whilst the ceremonies took place so we managed a little video footage too.
The Huffty now has his autograph book, signed shirt and the match programme (with his picture in and a few words) as souvenirs. Notoplip's son (Sonic) also got a mention in the programme as being a regular attendee at the matches with Huffty, so we got him a copy too.
I dare say that the John Terry picture will be blown up and put on his bedroom wall.
Kitten has watched the Sky footage several times already and although it is short it is memorable for all.
Tuesday 23 November 2010
Off to Chelsea
Well we are off shortly. We have to be there for 5:45pm because of Huffty's mascot duties.
Huffty will be leading out the Zilina team with their captain.
Kitten is accompanying us but any nonsense from her and I will let everyone know that she is a Spurs fan.
Huffty will be leading out the Zilina team with their captain.
Kitten is accompanying us but any nonsense from her and I will let everyone know that she is a Spurs fan.
Oral Morphine, Salvador Dali and the Om
Now that has to contend as being the best post title that I have written on the blog.
The pain from the stent has been substantial today and I was advised to take some oral morphine before retiring. I have previously only used the drug when in experiencing the worst of the radiotherapy effects and that was a few weeks ago. Nevertheless, I took quite a large dose when I went to bed and it did a very good job of stopping me from feeling the pain and also produced a soothing relaxing feeling. In my current mood it is like a kind of "pure melancholy", which is not a sad or unhappy feeling. Rather it is a very honest reflection a bit like walking through the autumn leaves in the woods with the sun striking low through trees from behind. Like a guiding hand.
The only problem is that whilst it has relaxed me it has made my mind active and taken me on a little meditative journey, which has been interesting but has kept me awake. That is why I am sitting here typing. I thought that it would be interesting to write with a different flow, whilst clearly influenced and that it would also provide a break that would be of benefit in eventually getting back to sleep.
I make no apologies if this comes out like gobbledygook, but thought it slightly humorous to share a certain train of thought I had when laying in my bed. My reason for doing so it because it reflects the way that I tend to think, chaining things together and it also reflects the effect that taking oral morphine can have on you!
I having mentioned on many occasions my regular listening to, writing of and generally affinity with the Om and have discussed its relationship to the Hindu elephant god Ganesha. For a while I found it hard to keep cartoon images of Ganesha from popping up whenever listening to the Om or talking around the subject and that was on nothing harder than water and milkshakes. I have also discussed how I describe the nature of the Om as being like two swans face to face, with their necks and heads faced into heart shape. Like yin and yang I think of the swan as seeming symbolic of silence and serenity, but also as a perfect example of attack minding aggression in its wings flared hissing and upright stance.
What I haven't ever mentioned is that the work of artist Salvador Dali had a strong influence in formative years. My mother and father bought their first Dali block-mounted print when I was nine. In those days you could buy them from the Tate Gallery in London and also some Athena outlets. The first picture they bought was one called "Espana", which I have hanging on the wall of my front room. They went on to have perhaps as many as fifteen hanging on the walls in their house at one point.
Another of their early purchases was called "Swans reflecting Elephants". I am not quite sure how I got there but along the way of thinking of the Om whilst laying in my relaxed state the image of the swans and Ganesha must have popped in there somewhere. Dali is the master of the contrived image where it can portray two separate meanings, so here is the picture.
Now, I should focus on another Dali. "Sleep". It's great gear though!
The pain from the stent has been substantial today and I was advised to take some oral morphine before retiring. I have previously only used the drug when in experiencing the worst of the radiotherapy effects and that was a few weeks ago. Nevertheless, I took quite a large dose when I went to bed and it did a very good job of stopping me from feeling the pain and also produced a soothing relaxing feeling. In my current mood it is like a kind of "pure melancholy", which is not a sad or unhappy feeling. Rather it is a very honest reflection a bit like walking through the autumn leaves in the woods with the sun striking low through trees from behind. Like a guiding hand.
The only problem is that whilst it has relaxed me it has made my mind active and taken me on a little meditative journey, which has been interesting but has kept me awake. That is why I am sitting here typing. I thought that it would be interesting to write with a different flow, whilst clearly influenced and that it would also provide a break that would be of benefit in eventually getting back to sleep.
I make no apologies if this comes out like gobbledygook, but thought it slightly humorous to share a certain train of thought I had when laying in my bed. My reason for doing so it because it reflects the way that I tend to think, chaining things together and it also reflects the effect that taking oral morphine can have on you!
I having mentioned on many occasions my regular listening to, writing of and generally affinity with the Om and have discussed its relationship to the Hindu elephant god Ganesha. For a while I found it hard to keep cartoon images of Ganesha from popping up whenever listening to the Om or talking around the subject and that was on nothing harder than water and milkshakes. I have also discussed how I describe the nature of the Om as being like two swans face to face, with their necks and heads faced into heart shape. Like yin and yang I think of the swan as seeming symbolic of silence and serenity, but also as a perfect example of attack minding aggression in its wings flared hissing and upright stance.
What I haven't ever mentioned is that the work of artist Salvador Dali had a strong influence in formative years. My mother and father bought their first Dali block-mounted print when I was nine. In those days you could buy them from the Tate Gallery in London and also some Athena outlets. The first picture they bought was one called "Espana", which I have hanging on the wall of my front room. They went on to have perhaps as many as fifteen hanging on the walls in their house at one point.
Another of their early purchases was called "Swans reflecting Elephants". I am not quite sure how I got there but along the way of thinking of the Om whilst laying in my relaxed state the image of the swans and Ganesha must have popped in there somewhere. Dali is the master of the contrived image where it can portray two separate meanings, so here is the picture.
Now, I should focus on another Dali. "Sleep". It's great gear though!
Monday 22 November 2010
A Different Point of View
Since encountering illness in my late twenties I have taken a somewhat different viewpoint on life than I had previously. Although the tumour that I had then turned out to be benign it was a long time before that was understood and the treatment had major physical risks.
It was that journey that guided me into a more philosophical and spiritual outlook on life and it hasn't ever left me. For a while the spiritual took over and thinks got a little crazy, but then I found the balance between the everyday normality and just having a slightly different take on things to the ordinary Joe Bloggs. As I have mentioned before on the blog, over the years I seem to have grown a natural and organic ability to utilise, adapt and develop different philosophies as well as creating my own. It's like having a little extra tool box that I can pick up and put down whenever I want to.
All that isn't going to make me better, but it makes me continue to enjoying learning through the process and feel that I am still getting much out of life. It is somewhat of a paradox that as you decline physically you have the opportunity to grow spiritually.
It is quite funny how drastic news like the news I received last week can impact on your everyday thinking. There is a whole sense of rearrangement of priorities and the perception of events around you. What it does, and indeed what the whole process of illness does, is reduce your viewpoint to the basics and what your intrinstic values are. It becomes quite funny just watching the television and seeing lifestyle focused products being relentlessly pushed at you as if they are important and yet most of us, including me, are sucked in by the illusion.
From a perspective of the self it is now my roots and essence that are important to me. It is not that I need to have a journey of reconcilation, rather it is a change of focus onto what hides behind the facade of everyday life with which we engage.
So, what did I do today? I took a trip to the shops. Irony is great, isn't it?
It was that journey that guided me into a more philosophical and spiritual outlook on life and it hasn't ever left me. For a while the spiritual took over and thinks got a little crazy, but then I found the balance between the everyday normality and just having a slightly different take on things to the ordinary Joe Bloggs. As I have mentioned before on the blog, over the years I seem to have grown a natural and organic ability to utilise, adapt and develop different philosophies as well as creating my own. It's like having a little extra tool box that I can pick up and put down whenever I want to.
All that isn't going to make me better, but it makes me continue to enjoying learning through the process and feel that I am still getting much out of life. It is somewhat of a paradox that as you decline physically you have the opportunity to grow spiritually.
It is quite funny how drastic news like the news I received last week can impact on your everyday thinking. There is a whole sense of rearrangement of priorities and the perception of events around you. What it does, and indeed what the whole process of illness does, is reduce your viewpoint to the basics and what your intrinstic values are. It becomes quite funny just watching the television and seeing lifestyle focused products being relentlessly pushed at you as if they are important and yet most of us, including me, are sucked in by the illusion.
From a perspective of the self it is now my roots and essence that are important to me. It is not that I need to have a journey of reconcilation, rather it is a change of focus onto what hides behind the facade of everyday life with which we engage.
So, what did I do today? I took a trip to the shops. Irony is great, isn't it?
Food Frontier
With the stent fitted eating is definitely becoming easier. The diet is still soft but the food is going down without retching over a sink every few mouthfuls. Believe me that is a huge improvement and exerts much less of a day to day toll on the body.
The stent will take a while to settle into the body though, so I have the spin-off pain to deal with. 1 gram of dissolvable paracetamol four times a day doesn't even come close. To put that in perspective, Lemsip flu strength is 650mg. I have been advised that, even though I am not keen on the oral morphine, I should take a little before bed every evening to have a fighting chance of a good night sleep.
Overall the experience is positive and it is early days yet.
A definite positive over the last day is that one of our neighbours kindly brought over some homemade soup for me last night. Said lady is French and fits the stereotype of being a very good cook. Suffice to say that I have been thoroughly enjoying the soup and there is another batch on the way.
I am looking forward to the mash challenge tonight. In days of old that might have been eighteen hours in Ibiza non-stop with Notoplip. Now that means that I will be attempting to eat some mashed potato.
How the mighty have fallen!
The stent will take a while to settle into the body though, so I have the spin-off pain to deal with. 1 gram of dissolvable paracetamol four times a day doesn't even come close. To put that in perspective, Lemsip flu strength is 650mg. I have been advised that, even though I am not keen on the oral morphine, I should take a little before bed every evening to have a fighting chance of a good night sleep.
Overall the experience is positive and it is early days yet.
A definite positive over the last day is that one of our neighbours kindly brought over some homemade soup for me last night. Said lady is French and fits the stereotype of being a very good cook. Suffice to say that I have been thoroughly enjoying the soup and there is another batch on the way.
I am looking forward to the mash challenge tonight. In days of old that might have been eighteen hours in Ibiza non-stop with Notoplip. Now that means that I will be attempting to eat some mashed potato.
How the mighty have fallen!
Sunday 21 November 2010
Energy Levels Rising
I have been able to get in and keep in some calories today. The "heaviest" food that I have consumed is rice pudding but I am going to try some mashed potato later on.
Getting the food in is the hardest part of the process and it does seem that I am moving in the right direction as the stent continues to settle.
After the draining effect of being laid up and not eating much for the last few days I managed a ten minute walk to the newsagent to pick up a paper. It was a "one foot in front of the other" kind of affair but mentally it was still a quantum leap. I can offer no excuse for not having opened my delivered Sunday Times and opting instead for a quick browse of the News of the World, but perhaps I just want an easy life at the moment.
I have also had a welcomed visit from my good friend "Car Crash". He has recently had car crash number 24, which is phenomenal in anybody's book. I am assured that the latest one was not his fault and I have to accept that as the other party drove off and was tracked down by the police, but car crash holds a superb record there.
Car Crash is a busy man, not only in presumably spending a lot of time filling in insurance claim forms and visiting car body shops but also operating a chain of stores around the country that sell gifts for men. He has built the "Menkind" brand up over the last ten years or so and I have enjoyed watching him struggle hugely whilst ultimately reaching a good level of success.
My friendship with Car Crash goes back to my late teens when we both were regular drinkers at a Kingston riverside pub and keen darts players, a hobby which is a clear reflection of both of our South Wales roots. Also being best man at his wedding has been one of my proudest moments. Needless to say that I have plenty of juicy stories to tell about Car Crash (as he found out on his wedding day) and should I become a little bored and I could trot out a few more.
I have spoken with Car Crash on several occasions over the last few months but this is the first time that we have met up for a while and it provided me with good lift.
Getting the food in is the hardest part of the process and it does seem that I am moving in the right direction as the stent continues to settle.
After the draining effect of being laid up and not eating much for the last few days I managed a ten minute walk to the newsagent to pick up a paper. It was a "one foot in front of the other" kind of affair but mentally it was still a quantum leap. I can offer no excuse for not having opened my delivered Sunday Times and opting instead for a quick browse of the News of the World, but perhaps I just want an easy life at the moment.
I have also had a welcomed visit from my good friend "Car Crash". He has recently had car crash number 24, which is phenomenal in anybody's book. I am assured that the latest one was not his fault and I have to accept that as the other party drove off and was tracked down by the police, but car crash holds a superb record there.
Car Crash is a busy man, not only in presumably spending a lot of time filling in insurance claim forms and visiting car body shops but also operating a chain of stores around the country that sell gifts for men. He has built the "Menkind" brand up over the last ten years or so and I have enjoyed watching him struggle hugely whilst ultimately reaching a good level of success.
My friendship with Car Crash goes back to my late teens when we both were regular drinkers at a Kingston riverside pub and keen darts players, a hobby which is a clear reflection of both of our South Wales roots. Also being best man at his wedding has been one of my proudest moments. Needless to say that I have plenty of juicy stories to tell about Car Crash (as he found out on his wedding day) and should I become a little bored and I could trot out a few more.
I have spoken with Car Crash on several occasions over the last few months but this is the first time that we have met up for a while and it provided me with good lift.
Getting a Grip - Food
The advice that I have had from the hospital regarding food intake can only be considered as being based around a short-term requirement to get me into theatre.
It has been set upon the simple premise that it is very difficult for me to eat and the need to get calories in. In this situation fortified milkshakes have been the central focus but processed foods have also been key. Given that it is difficult for me to get enough calories into the body processed foods are considered better because the body absorbs them more easily (hence the reason why so many people get fat on that kind of diet).
This type of diet may be considered for the short-term but I don't want to base my life on such a structure going forward. I can't see that living like that is going to increase my life expectancy and I hope that the stent will provide some physical benefit in widening the scope of the diet.
So, where to from here? Well, the objective is to try and get a better base to the diet but I will have to see how well things improve from here with the stent. There is also the option of supplements, whether mass manufactured or herbs. I have received some good advice in this department from a number of people and it is an area with which I am already familiar.
I have been a regular visitor to the gym for much of my adult life, but during my late teens and early twenties I enjoyed pushing free weights (i.e. barbells and dumbbells) and reading around the sport including nutrition and diet. My sister and mother and wife are also well versed in the area of diet. My mother has been involved in alternative medicine for twenty five years and that is before it became a media circus. Not only does she harbour a wealth of knowledge but she is also well connected. There is also a family illness based knowledge of diet because of the degree to which coeliac disease runs through my mother's side of the family. There are others, such as the Mad Canadian osteopath, who are wise in these areas.
What I need to do is to find out what I can eat and take a structured approach to diet and supplements to get the best possible base. I will be exploring this with my family and other connections.
It is this sort of action which I think of as being positive. From a medical perspective I am now a terminal case and have been told by the best people that there isn't any recognised medical treatment for my particular condition. However, that does not mean that I have to roll over and let the disease tickle my tummy. I certainly don't intend to do that but, at the same time I have to respect it and know that if it rears its head with venomous intend the coming period will be a real test of mettle.
It has been set upon the simple premise that it is very difficult for me to eat and the need to get calories in. In this situation fortified milkshakes have been the central focus but processed foods have also been key. Given that it is difficult for me to get enough calories into the body processed foods are considered better because the body absorbs them more easily (hence the reason why so many people get fat on that kind of diet).
This type of diet may be considered for the short-term but I don't want to base my life on such a structure going forward. I can't see that living like that is going to increase my life expectancy and I hope that the stent will provide some physical benefit in widening the scope of the diet.
So, where to from here? Well, the objective is to try and get a better base to the diet but I will have to see how well things improve from here with the stent. There is also the option of supplements, whether mass manufactured or herbs. I have received some good advice in this department from a number of people and it is an area with which I am already familiar.
I have been a regular visitor to the gym for much of my adult life, but during my late teens and early twenties I enjoyed pushing free weights (i.e. barbells and dumbbells) and reading around the sport including nutrition and diet. My sister and mother and wife are also well versed in the area of diet. My mother has been involved in alternative medicine for twenty five years and that is before it became a media circus. Not only does she harbour a wealth of knowledge but she is also well connected. There is also a family illness based knowledge of diet because of the degree to which coeliac disease runs through my mother's side of the family. There are others, such as the Mad Canadian osteopath, who are wise in these areas.
What I need to do is to find out what I can eat and take a structured approach to diet and supplements to get the best possible base. I will be exploring this with my family and other connections.
It is this sort of action which I think of as being positive. From a medical perspective I am now a terminal case and have been told by the best people that there isn't any recognised medical treatment for my particular condition. However, that does not mean that I have to roll over and let the disease tickle my tummy. I certainly don't intend to do that but, at the same time I have to respect it and know that if it rears its head with venomous intend the coming period will be a real test of mettle.
Saturday 20 November 2010
Kitten Works "The" Ticket
After the bad news earlier this week Kitten was trying to think of things that she could do to help make things a little brighter.
She has been in touch with Chelsea and told them that she understands that it can be several seasons' wait for children to be match day mascots but wondered whether they could make an exception given my condition.
I am, of course, sorely disappointed to find out that she wasn't enquiring on my behalf but I don't think that I could pass for under thirteen even given my recent weight loss. Naturally, she was referring to Huffty and Chelsea have come up trumps because he will be a mascot in Tuesday's Champions League match against MSK Zilina. He will be leading out with the Zilina captain. The match is being shown on Sky Sports 4 / HD4
The package, which is free, includes tickets for Huffty plus two others, pre-match refreshments for the party plus meeting with the players beforehand in the dressing room where he can get autographs. He will be accompanied into the Chelsea dressing room by a male guardian (guess who !!!!).
I can't say that I have ever been a big fan of gaining advantage in this manner, but I had nothing to do with it. I am just here to pick up the reward and my morals are easily disposed with :-)
Well done Kitten. There is going to be a very happy Huffty.
Now what can we do for Boogle?
She has been in touch with Chelsea and told them that she understands that it can be several seasons' wait for children to be match day mascots but wondered whether they could make an exception given my condition.
I am, of course, sorely disappointed to find out that she wasn't enquiring on my behalf but I don't think that I could pass for under thirteen even given my recent weight loss. Naturally, she was referring to Huffty and Chelsea have come up trumps because he will be a mascot in Tuesday's Champions League match against MSK Zilina. He will be leading out with the Zilina captain. The match is being shown on Sky Sports 4 / HD4
The package, which is free, includes tickets for Huffty plus two others, pre-match refreshments for the party plus meeting with the players beforehand in the dressing room where he can get autographs. He will be accompanied into the Chelsea dressing room by a male guardian (guess who !!!!).
I can't say that I have ever been a big fan of gaining advantage in this manner, but I had nothing to do with it. I am just here to pick up the reward and my morals are easily disposed with :-)
Well done Kitten. There is going to be a very happy Huffty.
Now what can we do for Boogle?
Friday 19 November 2010
That was the Week that Was
Well that was a hell of a week.
No sooner had we received the bad news about the latest state of my physical plight than I was carted off into hospital.
The trip to the hospital fitted perfectly with the sense of the saying "needs must when the devil rides". I would not have chosen the timing of it but, I was not in control of the situation and sometimes it is better to just get these things over and done with.
Fortunately, they dosed me up so much that there wasn't anything harrowing about it like previous experiences. I really don't remember anything of the main procedure.
I had hoped that the stent would allow me to eat a semi-solid diet but it is really geared to make me better equipped to deal with a soft diet. It will still be a vast improvement though.
The support that I have had all-around me is helping me to keep my spirit up and I really want to get to a point quickly where I can focus on how to get the best out of my life rather than being immersed in the disease. Of course there are practical issues to deal with to maintain that attitude because pain and nausea can ruin even the most go-forward of attitudes.
I have thrown myself into this journey at every level i.e. emotionally, mentally and physically and it now becomes a test of spirit. I hope that I am able to dig hard and deep into my boots to face my journey with a smile on my face and a feeling of being at peace with myself. I feel comfortable that I have done my best at every level to tackle my condition and that avoids any negative feeling, such as guilt, creeping over the horizon.
I am going to start with what I hope to be a decent night's sleep. That is something that is not possible in a hospital!
No sooner had we received the bad news about the latest state of my physical plight than I was carted off into hospital.
The trip to the hospital fitted perfectly with the sense of the saying "needs must when the devil rides". I would not have chosen the timing of it but, I was not in control of the situation and sometimes it is better to just get these things over and done with.
Fortunately, they dosed me up so much that there wasn't anything harrowing about it like previous experiences. I really don't remember anything of the main procedure.
I had hoped that the stent would allow me to eat a semi-solid diet but it is really geared to make me better equipped to deal with a soft diet. It will still be a vast improvement though.
The support that I have had all-around me is helping me to keep my spirit up and I really want to get to a point quickly where I can focus on how to get the best out of my life rather than being immersed in the disease. Of course there are practical issues to deal with to maintain that attitude because pain and nausea can ruin even the most go-forward of attitudes.
I have thrown myself into this journey at every level i.e. emotionally, mentally and physically and it now becomes a test of spirit. I hope that I am able to dig hard and deep into my boots to face my journey with a smile on my face and a feeling of being at peace with myself. I feel comfortable that I have done my best at every level to tackle my condition and that avoids any negative feeling, such as guilt, creeping over the horizon.
I am going to start with what I hope to be a decent night's sleep. That is something that is not possible in a hospital!
Thursday 18 November 2010
A Swordfish update
It's been a long old day and I'm pleased to say that Swordfish had the stent fitted late morning.
It was a long time before he was allowed any food or drink but he finally managed to have soup, jelly and ice cream - I hasten to add not all in the same bowl! It still took quite some time to eat but he said it felt much smoother.
I hope to have him home tomorrow. The children have taken over our bed with instructions that I sleep between them. Ha ha! Although I'm so tired I think I probably will manage.
Thank you all for the wonderful messages. We have taken great strength from the kind words and thoughts.
Sleep well and you'll be delighted to know that the blog will return tomorrow in its more familiar and eloquent manner! love Kitten x
It was a long time before he was allowed any food or drink but he finally managed to have soup, jelly and ice cream - I hasten to add not all in the same bowl! It still took quite some time to eat but he said it felt much smoother.
I hope to have him home tomorrow. The children have taken over our bed with instructions that I sleep between them. Ha ha! Although I'm so tired I think I probably will manage.
Thank you all for the wonderful messages. We have taken great strength from the kind words and thoughts.
Sleep well and you'll be delighted to know that the blog will return tomorrow in its more familiar and eloquent manner! love Kitten x
Wednesday 17 November 2010
Moving On
Kitten and I have an early start tomorrow with admission to the hospital at 7:15am.
Tomorrow's procedure will be a physical move away from Monday's bad news and I hope that it is successful. The ability to eat, if only semi-normally, will provide me with some much needed respite.
Kitten and I are starting to the frame the overall situation and are beginning to be able to get our heads around the future and our approach.
The key from here is to get the most that we can from each day and that is something that everyone should do. Of course, when we are fit and healthy we never stop to give anything real thought.
I will be in hospital all day and all night tomorrow.
Tomorrow's procedure will be a physical move away from Monday's bad news and I hope that it is successful. The ability to eat, if only semi-normally, will provide me with some much needed respite.
Kitten and I are starting to the frame the overall situation and are beginning to be able to get our heads around the future and our approach.
The key from here is to get the most that we can from each day and that is something that everyone should do. Of course, when we are fit and healthy we never stop to give anything real thought.
I will be in hospital all day and all night tomorrow.
Stenting Procedure to Go Ahead Tomorrow
I am going to be admitted to hospital tomorrow at 7:15am to have a stent fitted.
There isn't a guarantee that the procedure will be completed because the consultant has to be of the opinion that the oesophagus is narrow enough to hold it in place. He will not know that until he has the endoscope in the passage.
If the stent is fitted then I will be kept in overnight to ensure that the stent is working and does not slip.
The thought of having something other than liquid is quite appealing, so I hope that it is a success.
There isn't a guarantee that the procedure will be completed because the consultant has to be of the opinion that the oesophagus is narrow enough to hold it in place. He will not know that until he has the endoscope in the passage.
If the stent is fitted then I will be kept in overnight to ensure that the stent is working and does not slip.
The thought of having something other than liquid is quite appealing, so I hope that it is a success.
Starting A Process of Reconciliation
When you get news like we had on Monday there are people that you have to relate it too before you have even managed to process it fully yourself.
Firstly, there are calls to be made to very close relatives and friends and I also try and blog news as quickly as possible because all of my family except my sister live in South Wales. All of Kitten's family are based outside London too.
On Monday my parents had come to town to offer their support regardless of the news and hence our visit to see them in the evening.
Yesterday provided the first opportunity to reflect. My parents were amongst the visitors and I was good to be able to spend time with them after the shock of the previous day and before their lunchtime journey home. I had lots of well wishes to reply too and my apologies for not replying on an individual basis to the comments on the blog. It is suffice to say that I am touched deeply by the affection and concern that has been showed to me.
Although I was prepared for bad news on Monday the worst that I was expecting was that the cancer could have become metastatic (secondary). I had factored this in because I could not reconcile all of my recent symptoms to the the treatment process. Having factored that I thought that it could not be any worse because that alone would have meant that there was no hope of cure for me through conventional channels. So my surprise was based in how much the cancer had advanced in the face of rigorous treatment. It is the pace of its progress which is so concerning.
It was said to me when discussing palliative options that it is up to me to call the shots now and I have to make some quick decisions. I have already decided to go ahead with the stent option because that is an obvious potential way in which to make immediate improvements. The possibility of being able to eat some semi-solid food seems very attractive now even if it takes a piece of spring metal to be permanently sited in my body to achieve it. I also have to decide within the next couple of days whether to participate in a chemotherapy trial.
I am yet to read the literature on the chemotherapy trial, but should stress that it is to improve quality and quantity of life rather than being cure focused. It is also a randomised trial, so there is a fifty percent chance that I will receive a placebo even if I enter the trial.
There have also been a number of kind suggestions from people, all of which I will look into and I will also do my own research. I haven't ever researched the treatment of this cancer at this stage of development, simply because I decided that it was only worth doing if I arrived at this point.
The most important thing to me at this point is to get myself out of the mindset of the hospital process as quickly as possible. It would foolish to deny the severity of my position because if I were to continue as if everything is fine I could be missing the opportunity to get the best out of my life. This is where the balance needs to be struck and Kitten and I will find that balance as the dust settles.
First off though there is the issue of the stenting process tomorrow, should my cancer nurse be able to coordinate the two hospitals and transport that must be arranged in time for the event. I must also attend the hospital today for some pre-procedure blood tests.
There really isn't any peace for the wicked, is there?
What weighs most heavily for me is the impact of all this upon my children. When we visited Notoplip and Sushi on Monday I was talking to Notoplip about my children and I started to cry. This was the first time that I have been able to shed tears throughout the whole process. I often well up when talking about my children in this respect or just when they sit with me and praise me but I always "pull myself together". I do this because it is in my nature not because it is contrived. I am sure that if I was drinking alcohol then I would have cracked on a number of occasions before.
The fact is that no parent ever wants to say goodbye to their children, especially before their children have grown up and I will be doing my level best to preserve not only my relationship with them but also everyone else.
Firstly, there are calls to be made to very close relatives and friends and I also try and blog news as quickly as possible because all of my family except my sister live in South Wales. All of Kitten's family are based outside London too.
On Monday my parents had come to town to offer their support regardless of the news and hence our visit to see them in the evening.
Yesterday provided the first opportunity to reflect. My parents were amongst the visitors and I was good to be able to spend time with them after the shock of the previous day and before their lunchtime journey home. I had lots of well wishes to reply too and my apologies for not replying on an individual basis to the comments on the blog. It is suffice to say that I am touched deeply by the affection and concern that has been showed to me.
Although I was prepared for bad news on Monday the worst that I was expecting was that the cancer could have become metastatic (secondary). I had factored this in because I could not reconcile all of my recent symptoms to the the treatment process. Having factored that I thought that it could not be any worse because that alone would have meant that there was no hope of cure for me through conventional channels. So my surprise was based in how much the cancer had advanced in the face of rigorous treatment. It is the pace of its progress which is so concerning.
It was said to me when discussing palliative options that it is up to me to call the shots now and I have to make some quick decisions. I have already decided to go ahead with the stent option because that is an obvious potential way in which to make immediate improvements. The possibility of being able to eat some semi-solid food seems very attractive now even if it takes a piece of spring metal to be permanently sited in my body to achieve it. I also have to decide within the next couple of days whether to participate in a chemotherapy trial.
I am yet to read the literature on the chemotherapy trial, but should stress that it is to improve quality and quantity of life rather than being cure focused. It is also a randomised trial, so there is a fifty percent chance that I will receive a placebo even if I enter the trial.
There have also been a number of kind suggestions from people, all of which I will look into and I will also do my own research. I haven't ever researched the treatment of this cancer at this stage of development, simply because I decided that it was only worth doing if I arrived at this point.
The most important thing to me at this point is to get myself out of the mindset of the hospital process as quickly as possible. It would foolish to deny the severity of my position because if I were to continue as if everything is fine I could be missing the opportunity to get the best out of my life. This is where the balance needs to be struck and Kitten and I will find that balance as the dust settles.
First off though there is the issue of the stenting process tomorrow, should my cancer nurse be able to coordinate the two hospitals and transport that must be arranged in time for the event. I must also attend the hospital today for some pre-procedure blood tests.
There really isn't any peace for the wicked, is there?
What weighs most heavily for me is the impact of all this upon my children. When we visited Notoplip and Sushi on Monday I was talking to Notoplip about my children and I started to cry. This was the first time that I have been able to shed tears throughout the whole process. I often well up when talking about my children in this respect or just when they sit with me and praise me but I always "pull myself together". I do this because it is in my nature not because it is contrived. I am sure that if I was drinking alcohol then I would have cracked on a number of occasions before.
The fact is that no parent ever wants to say goodbye to their children, especially before their children have grown up and I will be doing my level best to preserve not only my relationship with them but also everyone else.
Tuesday 16 November 2010
Stent to be Fitted Pronto
Arrangements are being made for me to have a stent fitted into my oesophagus on Thursday morning. These are to be confirmed as the care will involve two different hospitals.
The stent is a springy device that will sit in my oesophagus and hopefully make it easier to eat. This will help me to broaden what is a very limited diet and will also help raise my energy levels on the assumption that I will be able to consume more calories.
Whilst this is a fairly straight-forward procedure I will be kept in overnight to ensure that the stenting has worked. As the bulk of the tumour is at the junction of the stomach and oesophagus there is a danger that the stent can slip downwards.
The other issue is how the stent is put into place. This is done via an endoscopy (i.e. a tube into the mouth and down the oesophagus). This an unpleasant experience normally but is very unpleasant when you have a long and thick tumour running a good length of the oesophagus.
Some of you will have read my previous experiences. The first experience was a simple endoscopy as a diagnostic to test me for an ulcer / coeliac disease. This was the original line of enquiry. I elected to have the procedure without any form of sedation, which was a mistake given the then unknown factor that I had a large tumour present. I am not a fusspot, but that experience has scarred my mind and put fear in there.
The second endoscopy I had was a an ultrasonic endoscopy to measure accurately the tumour size and nodal infections. For this I had heavy sedation, which included an analgesic and and amnesiac but it still was not a pleasant experience.
All in all I am not looking forward to it and wonder what it will be like to have a substantial foreign body permanently situated in the oesophagus.
I have no qualms about going forward though as it has to be for the best.
The stent is a springy device that will sit in my oesophagus and hopefully make it easier to eat. This will help me to broaden what is a very limited diet and will also help raise my energy levels on the assumption that I will be able to consume more calories.
Whilst this is a fairly straight-forward procedure I will be kept in overnight to ensure that the stenting has worked. As the bulk of the tumour is at the junction of the stomach and oesophagus there is a danger that the stent can slip downwards.
The other issue is how the stent is put into place. This is done via an endoscopy (i.e. a tube into the mouth and down the oesophagus). This an unpleasant experience normally but is very unpleasant when you have a long and thick tumour running a good length of the oesophagus.
Some of you will have read my previous experiences. The first experience was a simple endoscopy as a diagnostic to test me for an ulcer / coeliac disease. This was the original line of enquiry. I elected to have the procedure without any form of sedation, which was a mistake given the then unknown factor that I had a large tumour present. I am not a fusspot, but that experience has scarred my mind and put fear in there.
The second endoscopy I had was a an ultrasonic endoscopy to measure accurately the tumour size and nodal infections. For this I had heavy sedation, which included an analgesic and and amnesiac but it still was not a pleasant experience.
All in all I am not looking forward to it and wonder what it will be like to have a substantial foreign body permanently situated in the oesophagus.
I have no qualms about going forward though as it has to be for the best.
A Changing Landscape
I have had many well wishes and much kind advice asking me not to give up hope.
I am not the sort of person to do that, but I am rationale in my approach and it is important to understand the gravity of my situation.
The main site of the cancer is my oesophagus, which is the food pipe to the stomach. The fact that I cannot eat properly causes complications of its own but, hopefully, there will be some relief with the addition of a stent to open the pipe up.
Aside from that there is no real way back from what is an aggressive type of cancer that has also gone secondary. That is also not the end of it. I have large nodes (some an inch plus) of infection local to the oesophagus (but outside it) that are sitting directly between my lungs and are also close to my heart.
It also the rate at which the cancer has increased in the face of radical treatment that is of concern. It seems to be on a mission.
The good thing from all this is that I can relax in the knowledge that the last few months have been a struggle for good reason. My body has been fighting on two fronts, fighting both the advancing cancer and the treatment. I can now forget about the illness and not let it dominate my psyche.
I have flecks of my spiritual nature in the blog and that is an inate and self-propogating quality that I have. It will help keep my strong emotionally and I hope that it will also have an impact in a physical sense.
At this point it is important to understand that what is important does not change but the priority does and the priority is now to ensure that I plan to get the best out of my life rather than focusing ALL of my resource on getting better. When you focus all of your resources on getting better it is of short-term detriment to those around you and the balance must be redrawn.
Kitten and I will continue to discuss the best way forward and particularly how we manage the childrens' perception.
The children stayed with Notoplip and Sushi last night and enjoyed a sleepover, whilst still being ignorant of the situation. It may be some time before we elect to tell the the harsh reality, but we also have to make sure that they do not find out inadvertantly from another source.
Our policy has been to be honest and upfront with our children all the way through, but there are some things with which one needs to be economical. With Christmas now looming perhaps it would be better to get that over first and not let the situation spoil the party.
I am not the sort of person to do that, but I am rationale in my approach and it is important to understand the gravity of my situation.
The main site of the cancer is my oesophagus, which is the food pipe to the stomach. The fact that I cannot eat properly causes complications of its own but, hopefully, there will be some relief with the addition of a stent to open the pipe up.
Aside from that there is no real way back from what is an aggressive type of cancer that has also gone secondary. That is also not the end of it. I have large nodes (some an inch plus) of infection local to the oesophagus (but outside it) that are sitting directly between my lungs and are also close to my heart.
It also the rate at which the cancer has increased in the face of radical treatment that is of concern. It seems to be on a mission.
The good thing from all this is that I can relax in the knowledge that the last few months have been a struggle for good reason. My body has been fighting on two fronts, fighting both the advancing cancer and the treatment. I can now forget about the illness and not let it dominate my psyche.
I have flecks of my spiritual nature in the blog and that is an inate and self-propogating quality that I have. It will help keep my strong emotionally and I hope that it will also have an impact in a physical sense.
At this point it is important to understand that what is important does not change but the priority does and the priority is now to ensure that I plan to get the best out of my life rather than focusing ALL of my resource on getting better. When you focus all of your resources on getting better it is of short-term detriment to those around you and the balance must be redrawn.
Kitten and I will continue to discuss the best way forward and particularly how we manage the childrens' perception.
The children stayed with Notoplip and Sushi last night and enjoyed a sleepover, whilst still being ignorant of the situation. It may be some time before we elect to tell the the harsh reality, but we also have to make sure that they do not find out inadvertantly from another source.
Our policy has been to be honest and upfront with our children all the way through, but there are some things with which one needs to be economical. With Christmas now looming perhaps it would be better to get that over first and not let the situation spoil the party.
Monday 15 November 2010
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.
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.
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
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.
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
- They did not want to "quash optimism"
- I am in general "good nick"
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.
Sunday 14 November 2010
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.
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.
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.
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.
Saturday 13 November 2010
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.
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.
Friday 12 November 2010
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.
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.
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.
Thursday 11 November 2010
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
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.
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
- 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
- The length of the tumour must have shrunk
- The depth of the tumour in the oesophageal wall must have shrunk
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.
Wednesday 10 November 2010
kitten here...
OUCH!!!!
I read and hear that there have been many good wishes and thoughts sent my way over the last few days. I thought I should let everyone know that I'm doing well, hobbling around as well as resting as much as possible.
When I mentioned to a friend that I was having some faulty valves removed, she likend me to an old boiler! Friends hey!
I'm very much like my mother - Vera as Swordfish likens her to - and find it difficult to rest and do, well, very little. However, I realise this time, the importance of letting the leg heal slowly and in good time. My surgical stockings are the sexiest available and will be a part of my life for the next 3 weeks. Thank goodnes it's winter!!
Boogle and Huffty are taking it in turn playing doctor for the day, dishing out medication and regular cups of tea. Huffty had said he was worried in case I ended up with crutches but I believe he is secretly disappointed that I don't have any for him to swing from! Boogle has been 'suffering' arm ache, leg ache, head ache and toothache to name but a few ailments. Hmmm! I wonder if she needs some attention!
Anyway a huge thank you to all for the kind messages and calls. I'm sure it won't be long before I'm running - ha ha - around after everyone again. And I can't wait! x
Finally, just a short reminder ...................OUCH!!!!
I read and hear that there have been many good wishes and thoughts sent my way over the last few days. I thought I should let everyone know that I'm doing well, hobbling around as well as resting as much as possible.
When I mentioned to a friend that I was having some faulty valves removed, she likend me to an old boiler! Friends hey!
I'm very much like my mother - Vera as Swordfish likens her to - and find it difficult to rest and do, well, very little. However, I realise this time, the importance of letting the leg heal slowly and in good time. My surgical stockings are the sexiest available and will be a part of my life for the next 3 weeks. Thank goodnes it's winter!!
Boogle and Huffty are taking it in turn playing doctor for the day, dishing out medication and regular cups of tea. Huffty had said he was worried in case I ended up with crutches but I believe he is secretly disappointed that I don't have any for him to swing from! Boogle has been 'suffering' arm ache, leg ache, head ache and toothache to name but a few ailments. Hmmm! I wonder if she needs some attention!
Anyway a huge thank you to all for the kind messages and calls. I'm sure it won't be long before I'm running - ha ha - around after everyone again. And I can't wait! x
Finally, just a short reminder ...................OUCH!!!!
Tuesday 9 November 2010
Positives and Negatives
Jack and Vera are at Tesco's picking up a few bits and pieces and Kitten is resting her poorly leg on the sofa whilst watching television.
So, it is "all quiet on the Western Front".
I am trying to get myself back into a fit state to work. The main obstacle is food and I don't think that there is much chance of me making it into the office near-term, unless it is just for a few hours.
Things have got more difficult from the point of view of just swallowing over the last few days and I have been largely living off milkshakes. The problem is that this is consolidating my weight loss after the cold rather than rectifying it. I attempted to eat some rice pudding this morning just to get a few more calories in and my stomach was doing cartwheels for the next two hours.
Going into next week I have a few major worries. All of these could have been caused by the treatment itself, so there is no need to panic but they do give me reason for concern
1) Swallowing is becoming more diffcult and at this stage I would have thought it would ease a little
2) The constant dull ache that I get from the main site of the tumour seems to have extended down into the stomach
3) My stomach really doesn't seem to like many foods at all any more
From a positive perspective
1) I am not experiencing pain in my oesophagus when eating. This because the ulceration from the radiotherapy will have eased
2) Although I am finding it difficult to find things to eat and having to constantly tamper with my diet there always seems to be a route out
3) My position seems much more stable that a few weeks ago
4) All of the symptoms that I am experiencing could be attributable to the treatment
So, it is "all quiet on the Western Front".
I am trying to get myself back into a fit state to work. The main obstacle is food and I don't think that there is much chance of me making it into the office near-term, unless it is just for a few hours.
Things have got more difficult from the point of view of just swallowing over the last few days and I have been largely living off milkshakes. The problem is that this is consolidating my weight loss after the cold rather than rectifying it. I attempted to eat some rice pudding this morning just to get a few more calories in and my stomach was doing cartwheels for the next two hours.
Going into next week I have a few major worries. All of these could have been caused by the treatment itself, so there is no need to panic but they do give me reason for concern
1) Swallowing is becoming more diffcult and at this stage I would have thought it would ease a little
2) The constant dull ache that I get from the main site of the tumour seems to have extended down into the stomach
3) My stomach really doesn't seem to like many foods at all any more
From a positive perspective
1) I am not experiencing pain in my oesophagus when eating. This because the ulceration from the radiotherapy will have eased
2) Although I am finding it difficult to find things to eat and having to constantly tamper with my diet there always seems to be a route out
3) My position seems much more stable that a few weeks ago
4) All of the symptoms that I am experiencing could be attributable to the treatment
Monday 8 November 2010
Another Comedy Moment
So, Jack and I went to pick up Kitten from the hospital.
We were met by a nurse as we approached the ward and were asked to sit in the waiting room until Kitten was ready.
A couple of minutes later a different nurse came and told me that my wife wanted me to help her get dressed.
I was relaxed and looking forward to seeing Kitten and as the nurse and I were walking through the ward I was quipping "It's nothing that I haven't seen before anyway". "I should hope so", she replied.
So she pulled back the curtain to the cubicle. I looked in and said....
"That's not my wife!"
Sure enough the nurse had confused me with one of the other men who was waiting to pick up his wife.
The nurses and I thought it was funny, but I am not sure how the poor woman reacted. Fortunately she was in a perfectly decent state when I saw her.
Anyway, Kitten is back and upstairs in bed with her leg elevated as per instructions
We were met by a nurse as we approached the ward and were asked to sit in the waiting room until Kitten was ready.
A couple of minutes later a different nurse came and told me that my wife wanted me to help her get dressed.
I was relaxed and looking forward to seeing Kitten and as the nurse and I were walking through the ward I was quipping "It's nothing that I haven't seen before anyway". "I should hope so", she replied.
So she pulled back the curtain to the cubicle. I looked in and said....
"That's not my wife!"
Sure enough the nurse had confused me with one of the other men who was waiting to pick up his wife.
The nurses and I thought it was funny, but I am not sure how the poor woman reacted. Fortunately she was in a perfectly decent state when I saw her.
Anyway, Kitten is back and upstairs in bed with her leg elevated as per instructions
Kitten Ready for collection
Kitten is out of theatre and I will be "ready for collection" at 5:15pm.
Perhaps I should take her a saucer of milk?
Jack and I will be going to pick her up.
Many thanks to everyone for the well wishes for both Kitten and me today. We have had many texts, emails and calls.
Perhaps I should take her a saucer of milk?
Jack and I will be going to pick her up.
Many thanks to everyone for the well wishes for both Kitten and me today. We have had many texts, emails and calls.
Positive Thinking
When you have a serious illness such as cancer the phrase that gets wheeled out the most is that you "have to think positively".
Some people say it because they don't know what else to say, some people say it with a conviction that borders on a crusade and some to lift you when they can see that you are struggling.
I am a lucky person, not just because of the strong network of support that I have around me but also because I am surrounded by open people. Being surrounded by open people means that they do not feel uncomfortable knowing that I am ill and they communicate freely with me. There is little sense of stigma around me and there is a generosity of spirit which is not implied because individuals express it freely whether with words, hugs or by deliberately trying to incentivize me.
We live in different times to thirty or forty years ago when the the "Big C" was something that was whispered much like Lord Voldermort is in the Harry Potter franchise. That was because of both different attitudes prevailing in society and because there was less hope of cure from even non-advanced states of the disease.
I am a positive person by my nature but I am also pragmatic. I have spent my working lifetime solving problems and realising that they don't get solved by thinking positively about them. More often they get solved by hard graft, determination and creative solution. Having said that, one cannot solve anything without having the desire and belief that it can be done.
The type of cancer I have is a pernicious and voracious one. Having failed to be suitable for surgery after the standard treatment it is clear that the odds are not stacked in my favour. Having been a borderline case to start with I was reclassified as a "locally advanced" case and that isn't the sort of language that one wants to hear.
When I was going through the standard chemotherapy treatment I was breezing it. I was being told how well I was doing, not just by the people around me but also people at the hospital. I was praised for my positive approach and my willingness to engage with the process and my level of understanding. Inside I was happy to feel comfortable that I would have an operation, more chemotherapy and then I would be better. It would be a bad year and nothing more.
That wasn't an effort to think positively it was simply how I felt.
Then came the shock. No operation and a week of deliberation as to whether there was prospect of any further treatment.
Positive thinking is of benefit but it does not cure a rampant cancer. The stage and type of disease and the body's ability to rebound are all factors.
In this second stage of treatment I have been utterly hammered, which is what I thought I was originally in for. There have been so many difficulties to deal with and there is no doubt that it has challenged my spirit. I have felt helpless, hopeless and just plain fatigued physically, mentally and emotionally.
Regardless of the duress I have been under, it is in my nature to believe that somehow I will pull through. The difficult times have called me to question that but whilst there is still a decent shred of hope I will continue to believe it.
The odd thing is that having had a difficult time I am more optimistic about the outcome because I have little expectation. There are still doubts though primarily because of the symptoms I have been experiencing. There is nothing to stop this cancer going secondary whilst I am waiting. That has been clearly spelled out for me and the symptoms I have been experiencing in my stomach would cause worry for the most evangelistic positive thinker.
I remain pragmatic. This treatment was billed as the last throw of the dice and I hope that I have enough luck to pull me through.
If I can come through and be fit for surgery then there is still a gruelling road ahead, but one that will once again be filled with optimism. Optimism, positive thinking (call it what you want) makes the load feel much lighter but the darker days broaden one's horizons and are the essence of the journey.
Some people say it because they don't know what else to say, some people say it with a conviction that borders on a crusade and some to lift you when they can see that you are struggling.
I am a lucky person, not just because of the strong network of support that I have around me but also because I am surrounded by open people. Being surrounded by open people means that they do not feel uncomfortable knowing that I am ill and they communicate freely with me. There is little sense of stigma around me and there is a generosity of spirit which is not implied because individuals express it freely whether with words, hugs or by deliberately trying to incentivize me.
We live in different times to thirty or forty years ago when the the "Big C" was something that was whispered much like Lord Voldermort is in the Harry Potter franchise. That was because of both different attitudes prevailing in society and because there was less hope of cure from even non-advanced states of the disease.
I am a positive person by my nature but I am also pragmatic. I have spent my working lifetime solving problems and realising that they don't get solved by thinking positively about them. More often they get solved by hard graft, determination and creative solution. Having said that, one cannot solve anything without having the desire and belief that it can be done.
The type of cancer I have is a pernicious and voracious one. Having failed to be suitable for surgery after the standard treatment it is clear that the odds are not stacked in my favour. Having been a borderline case to start with I was reclassified as a "locally advanced" case and that isn't the sort of language that one wants to hear.
When I was going through the standard chemotherapy treatment I was breezing it. I was being told how well I was doing, not just by the people around me but also people at the hospital. I was praised for my positive approach and my willingness to engage with the process and my level of understanding. Inside I was happy to feel comfortable that I would have an operation, more chemotherapy and then I would be better. It would be a bad year and nothing more.
That wasn't an effort to think positively it was simply how I felt.
Then came the shock. No operation and a week of deliberation as to whether there was prospect of any further treatment.
Positive thinking is of benefit but it does not cure a rampant cancer. The stage and type of disease and the body's ability to rebound are all factors.
In this second stage of treatment I have been utterly hammered, which is what I thought I was originally in for. There have been so many difficulties to deal with and there is no doubt that it has challenged my spirit. I have felt helpless, hopeless and just plain fatigued physically, mentally and emotionally.
Regardless of the duress I have been under, it is in my nature to believe that somehow I will pull through. The difficult times have called me to question that but whilst there is still a decent shred of hope I will continue to believe it.
The odd thing is that having had a difficult time I am more optimistic about the outcome because I have little expectation. There are still doubts though primarily because of the symptoms I have been experiencing. There is nothing to stop this cancer going secondary whilst I am waiting. That has been clearly spelled out for me and the symptoms I have been experiencing in my stomach would cause worry for the most evangelistic positive thinker.
I remain pragmatic. This treatment was billed as the last throw of the dice and I hope that I have enough luck to pull me through.
If I can come through and be fit for surgery then there is still a gruelling road ahead, but one that will once again be filled with optimism. Optimism, positive thinking (call it what you want) makes the load feel much lighter but the darker days broaden one's horizons and are the essence of the journey.
Back on t'internet and the Day's Events
No need for an engineer. The Internet provider "fessed up" that they had a problem and it is sorted.
I've had my scan and, of course, there is nothing to report until I have the consultation next Monday. That will be the most important day of the process since the last most important day of the process. Whilst that may sound flippant it is important to stay stoical in the face of what are life deciding events. If it was something like my Internet not being fixed I would probably be in a flap.
Kitten is getting ready for her trip to hospital now. We are a National Health conveyor belt system here this morning. She maintains that she is always cool when approaching an operation but always looses it when she meets the anaesthetist and breaks down into a blubbering wreck.
She should be in and out during the course of the afternoon and then the focus will just be on getting her better as quickly as possible.
Hopefully we will both be in a much better place by next Monday.
I've had my scan and, of course, there is nothing to report until I have the consultation next Monday. That will be the most important day of the process since the last most important day of the process. Whilst that may sound flippant it is important to stay stoical in the face of what are life deciding events. If it was something like my Internet not being fixed I would probably be in a flap.
Kitten is getting ready for her trip to hospital now. We are a National Health conveyor belt system here this morning. She maintains that she is always cool when approaching an operation but always looses it when she meets the anaesthetist and breaks down into a blubbering wreck.
She should be in and out during the course of the afternoon and then the focus will just be on getting her better as quickly as possible.
Hopefully we will both be in a much better place by next Monday.
What - No Internet!!
Our Internet connection is broken and is scheduled to be fixed on Wednesday afternoon.
I will keep things updated but brief as I am tapping away on my iPhone.
My scan is at 8:40am this morning then Kitten goes in for surgery on her leg at midday.
Jack and Vera have settled nicely.
I will keep things updated but brief as I am tapping away on my iPhone.
My scan is at 8:40am this morning then Kitten goes in for surgery on her leg at midday.
Jack and Vera have settled nicely.
Friday 5 November 2010
The Outlaws from North Wales
The "Outlaws from North Wales" is how I like to refer to the in-laws and it plays on the Clint Eastwood film name "The Outlaw Josey Wales".
They are, of course, wonderful people and it is a good job because I have toput up with them (ahem) I mean put them up for the next week. They have kindly offered to help whilst Kitten is incapacitated by the operation that she is having on her leg this coming Monday.
I didn't meet Kitten's parents until nearly a year and a half after we started dating, which was add odds with the fact that she was introduced to mine very quickly. In fact when I said that we would be visiting it seemed that the news reverberated around the villages of South Wales because many of them turned up to Cymraes' house to check her out. OK, so I exaggerate a little and it was in fact the the usual "culprits", but there are plenty of them!
It was only a year after meeting Kitten that I went to Ibiza for the summer on my sabbatical from work. I went on my own as that was what I had always planned to do but, as I have said before, Kitten and I revised the plans and she came out to join me for the last three months.
We were engaged on our return and so we thought it more than about time that I met the prospective outlaws.
I remember the introduction very well because, having driven for four hours to get there around midnight the opening chit-chat was about our summer. At this point I guess that I should give Kitten's mum and dad individual names so, how about Jack and Vera. That will carry some significance for Coronation Street fans.
Whilst we were still milling around on arrival and offers of tea and coffee were being made, Kitten's mother said "Did you both come back on the ferry?". This was a reasonable question as I had driven out there but Kitten and I had flown out together after I had come back for the weekend for the Boxer's wedding.
I told her that we had and her next question was "Did you have a berth?".
I replied without any prior thought (as is my normal way) "No, it's OK we used contraception".
This is, perhaps, not a line you should use when meeting your fiancee's parents but her dad "Jack" quickly covered me by saying "You asked for that".
There was a huge irony behind this exchange because, unbeknown to Kitten and I she was already pregnant with the Boogle and we only found out a month later.
The tone was set for my relationship with the in-laws and the fact is that we have always got on very well. They are very accommodating and have the appropriate measure of tolerance to deal with me. I believe that they have also very much enjoyed the addition of two grandchildren to their family and the stability that Kitten and my relationship has afforded.
So, they are here for a week. Yes a whole bloody week :-)
Both their visits to us and our visits to them are normally accompanied by large quantities of vino tinto consumption, but that has been off the menu for me for quite some time now. It was their Christmas visit of last year that finally drove me to the doctor's. It wasn't the company, rather it was that after just one or two glasses of wine each night I was suffering from restless legs and feeling tired by 8-9pm. We now know that was caused by the anaemia and was one of the key symptoms in getting me to diagnosis.
So they will have to glug the odd glass themselves, but their help in ferrying the children around and generally in the house will be very much appreciated for the next week.
Kitten's mum has been poorly herself recently, so we also need to make sure that she doesn't overdo it. If you knew her then you would know that is easier said than done.
They are, of course, wonderful people and it is a good job because I have to
I didn't meet Kitten's parents until nearly a year and a half after we started dating, which was add odds with the fact that she was introduced to mine very quickly. In fact when I said that we would be visiting it seemed that the news reverberated around the villages of South Wales because many of them turned up to Cymraes' house to check her out. OK, so I exaggerate a little and it was in fact the the usual "culprits", but there are plenty of them!
It was only a year after meeting Kitten that I went to Ibiza for the summer on my sabbatical from work. I went on my own as that was what I had always planned to do but, as I have said before, Kitten and I revised the plans and she came out to join me for the last three months.
We were engaged on our return and so we thought it more than about time that I met the prospective outlaws.
I remember the introduction very well because, having driven for four hours to get there around midnight the opening chit-chat was about our summer. At this point I guess that I should give Kitten's mum and dad individual names so, how about Jack and Vera. That will carry some significance for Coronation Street fans.
Whilst we were still milling around on arrival and offers of tea and coffee were being made, Kitten's mother said "Did you both come back on the ferry?". This was a reasonable question as I had driven out there but Kitten and I had flown out together after I had come back for the weekend for the Boxer's wedding.
I told her that we had and her next question was "Did you have a berth?".
I replied without any prior thought (as is my normal way) "No, it's OK we used contraception".
This is, perhaps, not a line you should use when meeting your fiancee's parents but her dad "Jack" quickly covered me by saying "You asked for that".
There was a huge irony behind this exchange because, unbeknown to Kitten and I she was already pregnant with the Boogle and we only found out a month later.
The tone was set for my relationship with the in-laws and the fact is that we have always got on very well. They are very accommodating and have the appropriate measure of tolerance to deal with me. I believe that they have also very much enjoyed the addition of two grandchildren to their family and the stability that Kitten and my relationship has afforded.
So, they are here for a week. Yes a whole bloody week :-)
Both their visits to us and our visits to them are normally accompanied by large quantities of vino tinto consumption, but that has been off the menu for me for quite some time now. It was their Christmas visit of last year that finally drove me to the doctor's. It wasn't the company, rather it was that after just one or two glasses of wine each night I was suffering from restless legs and feeling tired by 8-9pm. We now know that was caused by the anaemia and was one of the key symptoms in getting me to diagnosis.
So they will have to glug the odd glass themselves, but their help in ferrying the children around and generally in the house will be very much appreciated for the next week.
Kitten's mum has been poorly herself recently, so we also need to make sure that she doesn't overdo it. If you knew her then you would know that is easier said than done.
Thursday 4 November 2010
Nebulisers and Diet
I have been continuing to try and find some kind of equilibrium after my cold last week but it is not proving to be easy.
The constant sickness caused by the combination of eating and the cold's aftermath have been particularly trying and I have taken two courses of action
Virtually the only medication I take is a standard antacid tablet, but in dissolvable form. That has been aggravating the problem so I have not been taking it. It is probably the removal of this which has been causing the stomach gripes, which are now at such a level that they could be described as rampant and are my major problem. So, I have started back on the tablets and hope that the combination of a more varied diet and the nebuliser will get me back on track.
It has been a long and difficult week though and perhaps it shows why I am not just sitting here fretting about the events of the next couple of weeks. Often there is enough to cope with on a day to day basis.
The constant sickness caused by the combination of eating and the cold's aftermath have been particularly trying and I have taken two courses of action
- Kitten has been shopping for alternatives to my predominantly dairy based diet
- I have contacted the hospital and they have provided me with a saline nebuliser
Virtually the only medication I take is a standard antacid tablet, but in dissolvable form. That has been aggravating the problem so I have not been taking it. It is probably the removal of this which has been causing the stomach gripes, which are now at such a level that they could be described as rampant and are my major problem. So, I have started back on the tablets and hope that the combination of a more varied diet and the nebuliser will get me back on track.
It has been a long and difficult week though and perhaps it shows why I am not just sitting here fretting about the events of the next couple of weeks. Often there is enough to cope with on a day to day basis.
Tuesday 2 November 2010
Battling away
When I started the blog I said that I did not see my journey through cancer as being a "fight" against the illness.
My rationale was that the illness is part of me and I cannot be fighting myself.
I am still of that opinion but, what I have found is that, there are battles to be fought along the way (such as with the blood transfusion and last round of chemotherapy) and that there are periods (such as the last ten weeks), which have become a constant battle.
The battle in the last 10 weeks or so has seemed as being never-ending and the problems have been largely caused by the treatment. It is a moot point as to whether I am battling the disease or battling the treatment. The salient point is that I am really having to dig in.
The most recent obstacle is that since my cold of last week swallowing has been very difficult without the food becoming stuck. This applies to liquid form as well as slightly heavier foods such as rice pudding. There are nasty side effects to this but the primary issue of concern is that I have lost weight. I have lost about five or six pounds in the last week and it is weight that I can ill-afford to lose.
The last place I want to be is to be considered to be operable from the viewpoint of the cancer but not to be operable because of the weight loss.
The net result is that through the difficulty of eating I am virtually force feeding myself, but it is difficult to get through a meal without being ill. I am currently eating lots of small meals and just keeping it going.
It would be nice to think that conditions will soon be back to pre-cold conditions of early next week, but I am not counting on it.
When I come to the scan there are no guarantees that the results will be favourable and it must be remembered that I started the whole process as a borderline case and also only sneaked in for the latest round of treatment rather than being considered a palliative case.
What I can do is hold my head high and be proud that I have done everything in my power to get myself to the operating table and on to cure. I have changed elements of my behaviour, habits and anything else you care to mention to achieve success for the best of reasons.
The outcome is "in the lap of the gods", but I hope that I have at least given them something to think about and I will be happy with even a marginal nod of approval from them.
My rationale was that the illness is part of me and I cannot be fighting myself.
I am still of that opinion but, what I have found is that, there are battles to be fought along the way (such as with the blood transfusion and last round of chemotherapy) and that there are periods (such as the last ten weeks), which have become a constant battle.
The battle in the last 10 weeks or so has seemed as being never-ending and the problems have been largely caused by the treatment. It is a moot point as to whether I am battling the disease or battling the treatment. The salient point is that I am really having to dig in.
The most recent obstacle is that since my cold of last week swallowing has been very difficult without the food becoming stuck. This applies to liquid form as well as slightly heavier foods such as rice pudding. There are nasty side effects to this but the primary issue of concern is that I have lost weight. I have lost about five or six pounds in the last week and it is weight that I can ill-afford to lose.
The last place I want to be is to be considered to be operable from the viewpoint of the cancer but not to be operable because of the weight loss.
The net result is that through the difficulty of eating I am virtually force feeding myself, but it is difficult to get through a meal without being ill. I am currently eating lots of small meals and just keeping it going.
It would be nice to think that conditions will soon be back to pre-cold conditions of early next week, but I am not counting on it.
When I come to the scan there are no guarantees that the results will be favourable and it must be remembered that I started the whole process as a borderline case and also only sneaked in for the latest round of treatment rather than being considered a palliative case.
What I can do is hold my head high and be proud that I have done everything in my power to get myself to the operating table and on to cure. I have changed elements of my behaviour, habits and anything else you care to mention to achieve success for the best of reasons.
The outcome is "in the lap of the gods", but I hope that I have at least given them something to think about and I will be happy with even a marginal nod of approval from them.
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