I went ice-skating with my daughter on Sunday morning. This a routine that has been going on for a while and we both enjoy our fun together. We also share ice time with one of my oldest friends and colleagues and his wife and daughters. More on the Italian clan later when I have thought up a suitable collective reference for them.
What is less routine is that when I came home I could hear the words "Oy Freak" emanating from my house in my direction.
I recognise the dulcet tones of Notoplip (most likely distinctive because of the clue in his name). What I didn't expect was to find not only him but also "Dangerous Doug" and "Bloody Nice Bloke" at work in mine and Kitten's bedroom.
At this juncture I should probably pause and point out that Kitten was at a party for one of my son's school friends, so the chaps were concentrating on the job in hand, which was lining paper all round and Kitten's choice of paper for a single wall.
Bloody good job chaps (and to Sushi for her motivating and organisational skills). I hate decorating!
Special mention must also be made of "Billy the Fish". Billy the Fish and his Mrs "Saucy Sue" have not been mentioned yet because they are standing quietly but firmly in the background. But the support is there and it is much appreciated. I am also thoroughly looking forward to inheriting "Billy's" aquarium for my newly decorated bedroom. Now I know what it is like to be a celebrity when everyone wants to give you things. It gives you a "Ready Brek" feeling.
A cryptic message must also be sent to the "Enochians" for the gift of sound. I guess that only they will understand that particular reference. Ah well, there must be some secrets between souls.
Sunday 28 February 2010
The Power of Laughter
In case you were wondering where the Shogun was in the previous post, it was only there in spirit.
The Shogun I am referring to is the vehicle Notoplip drove back and forth to Wales.
When we met up at the start of the journey I got in the Shogun and we started to talk b*ll*cks. When I got out some 21 hours later we were still talking b*ll*cks. We had had a good laugh though and that is just what the doctor ordered.
My thanks to everyone who accommodated us on our way (especially my mam and dad) and I hope we didn't corrupt the the Serious Barman; though I think that very unlikely as he is a strong-minded young fella. If we did corrupt him with our tales of old then I am sure that "Lucky Coat" (his dad and my uncle) will be having words with me in times to come.
The Shogun I am referring to is the vehicle Notoplip drove back and forth to Wales.
When we met up at the start of the journey I got in the Shogun and we started to talk b*ll*cks. When I got out some 21 hours later we were still talking b*ll*cks. We had had a good laugh though and that is just what the doctor ordered.
My thanks to everyone who accommodated us on our way (especially my mam and dad) and I hope we didn't corrupt the the Serious Barman; though I think that very unlikely as he is a strong-minded young fella. If we did corrupt him with our tales of old then I am sure that "Lucky Coat" (his dad and my uncle) will be having words with me in times to come.
Notoplip the Shogun and the kebab frenzy
The match in Cardiff was entertaining enough and the second half atmosphere reflected a much better Welsh performance.
Notoplip is a football lad, uninitiated in the ways of the egg-chasing fraternity so I had wanted him to sample the unique dynamics of a rugby crowd and occasion.
It was frustating that the traffic we encountered on the way down curtailed the preliminaries, as we did not arrive in Cardiff town centre until one hour before kick-off.
On the way to meeting up with Lady Dai, Mrs Stockholm, the Serious Barman and friends, Notoplip was asked directions by a Welsh lady. That was the gateway for his one-night acceptance into "Welshness".
A bit of chit-chat in a Mill Lane bar then it was off for the serious business of the match. Time afforded little other than to touch base and collect tickets from Lady Dai and Mrs Stockholm (Cheers for passing them in my direction).
The thing about the Millennium Stadium in Cardiff is that it really is in Cardiff. Bang slap on the river Taff and running the length of Westgate Street it strikes an impressive pose to the surrounding landscape. Inside the ground the tiers of seats are banked closely to the ground, which provides an intimate atmosphere especially when the Stadium roof is also closed.
Mixing the home and away support, who chat and banter with each other, is not something that can be seen in football at any level. The argument that alcohol is to blame for trouble at football matches doesn't gain a lot of support here either because opposing fans sit and drink alcohol in the stadium without a whiff of trouble. It pained me to have to turn down the offer of a beer from the French supporters sitting next to me. I felt it would have been rude not to take the offer so I settled for a coke.
So Notoplip broke his rugby virginity and, by the time we left the stadium, Cardiff looked a completely different place.
Rugby internationals often provide an even flow to the day in Cardiff. I can remember being on the lash at 10:30am in the capital for an afternoon clash and carrying on into the small hours, so I want to make it clear that I am not sitting in judgment of anyone in the following passage.
The town centre looked like a different landscape with a Friday night kick-off. You have to understand that a rugby day in Cardiff is very different from a rugby day in, for example, Twickenham. The day in Cardiff will have just as many women as men in the in the pubs and bars. The culture in South Wales is such that rugby internationals permeate into the overall public conciousness much more than rugby and even football do in England. In order to understand this you have to realise that there are rugby clubs in even the smallest of villages in South Wales and they often have a strong focus within the local community.
It appeared to me that Cardiff on Friday was a mixture of a match focused crowd and a Friday night going out crowd, which is entirely logical. But it is an interesting mix.
St. Mary's street in Cardiff has a reputation as being the most drunken street in the whole of the UK. You would think that people were exaggerating if they said that there are a host of first-aid portacabins and ambulance parked in the street but it is perfectly true. A quick search on Google will give you a feel for the place. There are very few perks to being sober but watching people stagger around completely paralytic from one bar to another is quite amusing in its own little way. The pinnacle for me was at the end of the night when walking back to the Serious Barman's car. We stopped off in "Chip Alley" (yes it is self-explanatory) for Notoplip to grab a kebab.
Chip Alley is a unique place after midnight. I had laughed out loud earlier in the evening when the Serious Barman had relayed an Aussie comic's comments about Cardiff to a Portsmouth crowd. He said something along the lines of
"You think you are all drinkers but you have nothing on the Welsh. In Cardiff a bloke will have a piss, order his chips and pull a bird at the same time. The women who are wearing next to nothing in the freezing cold will be impressed that he has in own bag of chips".
Now some of you may not understand that and some may not appreciate it, but when you are there in Chip Alley after midnight it carries a certain resonance with it.
The jewel of my own Friday night experience was people watching in Chip Alley. There was the bloke ordering a kebab that he was in no fit state to eat. Outside the kebab shop he made a brave attempt (with a fork from his box) but half of it was down his arm. When he noticed, he picked a bit of lettuce off without noticing half of the kebab shop sitting on the rest of his arm.
Better still was a bloke who was at least managing to get it into his mouth but he had forgotten the basic use of a fork. Most of us know that when you use a fork you put a bit of food on it and then you lift it to your mouth. This bloke was so pissed that he would get the food on his fork and then lean forward to get the food off the fork whist simultaneously moving the fork further away from himself. Part of me was inwardly praying that he would fall over. Not because I wanted any harm to come to him but because I was convinced that if he had fallen over then he would have done so face first into his kebab box and would have continued chomping on tasty donor oblivious to the world around him.
For a moment I felt like the picture of good health!
Notoplip was content with his kebab and Serious Barman and I nicked a couple of chips.
Thanks to Serious Barman for the lift home to my parents
Notoplip is a football lad, uninitiated in the ways of the egg-chasing fraternity so I had wanted him to sample the unique dynamics of a rugby crowd and occasion.
It was frustating that the traffic we encountered on the way down curtailed the preliminaries, as we did not arrive in Cardiff town centre until one hour before kick-off.
On the way to meeting up with Lady Dai, Mrs Stockholm, the Serious Barman and friends, Notoplip was asked directions by a Welsh lady. That was the gateway for his one-night acceptance into "Welshness".
A bit of chit-chat in a Mill Lane bar then it was off for the serious business of the match. Time afforded little other than to touch base and collect tickets from Lady Dai and Mrs Stockholm (Cheers for passing them in my direction).
The thing about the Millennium Stadium in Cardiff is that it really is in Cardiff. Bang slap on the river Taff and running the length of Westgate Street it strikes an impressive pose to the surrounding landscape. Inside the ground the tiers of seats are banked closely to the ground, which provides an intimate atmosphere especially when the Stadium roof is also closed.
Mixing the home and away support, who chat and banter with each other, is not something that can be seen in football at any level. The argument that alcohol is to blame for trouble at football matches doesn't gain a lot of support here either because opposing fans sit and drink alcohol in the stadium without a whiff of trouble. It pained me to have to turn down the offer of a beer from the French supporters sitting next to me. I felt it would have been rude not to take the offer so I settled for a coke.
So Notoplip broke his rugby virginity and, by the time we left the stadium, Cardiff looked a completely different place.
Rugby internationals often provide an even flow to the day in Cardiff. I can remember being on the lash at 10:30am in the capital for an afternoon clash and carrying on into the small hours, so I want to make it clear that I am not sitting in judgment of anyone in the following passage.
The town centre looked like a different landscape with a Friday night kick-off. You have to understand that a rugby day in Cardiff is very different from a rugby day in, for example, Twickenham. The day in Cardiff will have just as many women as men in the in the pubs and bars. The culture in South Wales is such that rugby internationals permeate into the overall public conciousness much more than rugby and even football do in England. In order to understand this you have to realise that there are rugby clubs in even the smallest of villages in South Wales and they often have a strong focus within the local community.
It appeared to me that Cardiff on Friday was a mixture of a match focused crowd and a Friday night going out crowd, which is entirely logical. But it is an interesting mix.
St. Mary's street in Cardiff has a reputation as being the most drunken street in the whole of the UK. You would think that people were exaggerating if they said that there are a host of first-aid portacabins and ambulance parked in the street but it is perfectly true. A quick search on Google will give you a feel for the place. There are very few perks to being sober but watching people stagger around completely paralytic from one bar to another is quite amusing in its own little way. The pinnacle for me was at the end of the night when walking back to the Serious Barman's car. We stopped off in "Chip Alley" (yes it is self-explanatory) for Notoplip to grab a kebab.
Chip Alley is a unique place after midnight. I had laughed out loud earlier in the evening when the Serious Barman had relayed an Aussie comic's comments about Cardiff to a Portsmouth crowd. He said something along the lines of
"You think you are all drinkers but you have nothing on the Welsh. In Cardiff a bloke will have a piss, order his chips and pull a bird at the same time. The women who are wearing next to nothing in the freezing cold will be impressed that he has in own bag of chips".
Now some of you may not understand that and some may not appreciate it, but when you are there in Chip Alley after midnight it carries a certain resonance with it.
The jewel of my own Friday night experience was people watching in Chip Alley. There was the bloke ordering a kebab that he was in no fit state to eat. Outside the kebab shop he made a brave attempt (with a fork from his box) but half of it was down his arm. When he noticed, he picked a bit of lettuce off without noticing half of the kebab shop sitting on the rest of his arm.
Better still was a bloke who was at least managing to get it into his mouth but he had forgotten the basic use of a fork. Most of us know that when you use a fork you put a bit of food on it and then you lift it to your mouth. This bloke was so pissed that he would get the food on his fork and then lean forward to get the food off the fork whist simultaneously moving the fork further away from himself. Part of me was inwardly praying that he would fall over. Not because I wanted any harm to come to him but because I was convinced that if he had fallen over then he would have done so face first into his kebab box and would have continued chomping on tasty donor oblivious to the world around him.
For a moment I felt like the picture of good health!
Notoplip was content with his kebab and Serious Barman and I nicked a couple of chips.
Thanks to Serious Barman for the lift home to my parents
The Power of Events
Given the effort put into attending sporting events on the weekend there was little return.
A Friday night defeat for Wales, crafted by their lamentable first half performance and a handsome defeat for Chelsea on Saturday.
From my viewpoint it is often single or a cluster of closely knit events that can shape the outcome of any situation and hindsight shows them to be significant turning points. Sometimes there can also be the feeling that events are heavily influenced by past actions i.e. Karma.
If you are going to be a winner you need to have the self-belief, the ability, a good team around you and a measure of good luck.
There were pivotal events in both matches but let's start with the Karma.
A few weeks after the revelations of yet more indiscretions by the Chelsea captain Chelsea were facing Manchester City and the unfortunate Mr Bridge. If ever a script was written for "Karmic revenge" then this was it. The gods were with City and they deserved their victory.
I felt that the match turned within a minute. Chelsea 1-0 up and Joe Cole created a chance out of nothing. He failed to put the chance away and City raced up the other end and scored, helped schoolboy defending by Chelsea (guess who was culpable).
No karma in evidence at the Millennium Stadium in Cardiff on Friday but Wales literally "threw the game away" with an error strewn performance.
At half-time I was fearing an absolute hammering but, as the Welsh often do, they rallied strongly to run the French close. There is huge talent in the Welsh but it oftens seems that it only emerges when the backs are to the wall. Almost as if there must be a drama of our own making before inspiriation can be invoked.
The French were reeling at 21-13 and Wales had two clear cut chances to level but failed to take them. You could feel the momentum start to swing and the transition was completed as the first half school boy mistakes started to creep in again. Despite being 20-0 down at half-time this will definitely go down as an opportunity missed.
The magic of Shane Williams in the dying moments of the game confirmed the disappointment of "what should have been" with a class try that is the hallmark of one of Wales greats.
Well done to the French and also to there supporters who were fantastic throughout.
A Friday night defeat for Wales, crafted by their lamentable first half performance and a handsome defeat for Chelsea on Saturday.
From my viewpoint it is often single or a cluster of closely knit events that can shape the outcome of any situation and hindsight shows them to be significant turning points. Sometimes there can also be the feeling that events are heavily influenced by past actions i.e. Karma.
If you are going to be a winner you need to have the self-belief, the ability, a good team around you and a measure of good luck.
There were pivotal events in both matches but let's start with the Karma.
A few weeks after the revelations of yet more indiscretions by the Chelsea captain Chelsea were facing Manchester City and the unfortunate Mr Bridge. If ever a script was written for "Karmic revenge" then this was it. The gods were with City and they deserved their victory.
I felt that the match turned within a minute. Chelsea 1-0 up and Joe Cole created a chance out of nothing. He failed to put the chance away and City raced up the other end and scored, helped schoolboy defending by Chelsea (guess who was culpable).
No karma in evidence at the Millennium Stadium in Cardiff on Friday but Wales literally "threw the game away" with an error strewn performance.
At half-time I was fearing an absolute hammering but, as the Welsh often do, they rallied strongly to run the French close. There is huge talent in the Welsh but it oftens seems that it only emerges when the backs are to the wall. Almost as if there must be a drama of our own making before inspiriation can be invoked.
The French were reeling at 21-13 and Wales had two clear cut chances to level but failed to take them. You could feel the momentum start to swing and the transition was completed as the first half school boy mistakes started to creep in again. Despite being 20-0 down at half-time this will definitely go down as an opportunity missed.
The magic of Shane Williams in the dying moments of the game confirmed the disappointment of "what should have been" with a class try that is the hallmark of one of Wales greats.
Well done to the French and also to there supporters who were fantastic throughout.
Saturday 27 February 2010
annstonefamily
Hi "annstonefamily".
I am not sure whether you saw my reply to your Friday morning post, which was buried in the comments, so I thought that I would respond directly to your generous offer of assistance.
Firstly, I would like to wish your husband a full and speedy recovery. It seems that you are coming near to the end of your journey and I hope that this year is a much better one for you and all of your family.
If I am lucky enough to come through the remaining investigations without any additional "discoveries" it would seem that your husband's situation has been very similar to the one I am facing.
I would be grateful if I could draw from your experience in what ever manner suits you. Personally, I feel that a chat would allow me to "pick your brains" and provide you with a wider arena than responding to topics that I have chosen, but I would be pleased to hear your thoughts through any medium.
Your colleagues have my contact details, so perhaps you could drop me an email and we can take it from there.
Many Thanks
I am not sure whether you saw my reply to your Friday morning post, which was buried in the comments, so I thought that I would respond directly to your generous offer of assistance.
Firstly, I would like to wish your husband a full and speedy recovery. It seems that you are coming near to the end of your journey and I hope that this year is a much better one for you and all of your family.
If I am lucky enough to come through the remaining investigations without any additional "discoveries" it would seem that your husband's situation has been very similar to the one I am facing.
I would be grateful if I could draw from your experience in what ever manner suits you. Personally, I feel that a chat would allow me to "pick your brains" and provide you with a wider arena than responding to topics that I have chosen, but I would be pleased to hear your thoughts through any medium.
Your colleagues have my contact details, so perhaps you could drop me an email and we can take it from there.
Many Thanks
Friday 26 February 2010
Rest and Recuperation
Charging up and down motorways going to rugby and football matches is probably not the ideal physical form of rest and recuperation, but this weekend will be a useful outlet. There will be activities with all of my immediate family members and I will be stopping over tonight at my parents in South Wales.
There are a few topics that I want to write on next week as I feel that it is worth talking more about the levels of care that I am receiving and the selflessness of those around me.
The stage of the game that I am at currently is just a "phoney war" and the business end is yet to arrive, so everything is a little surreal, particularly as I look and seem reasonably healthy.
I also want to add a piece on clinical trials as, in this situation, there is a dilemma between whether you participate in an unproven treatment program or whether you go with the tried and tested. It is important to realise that your treatment program has arisen from previous clinical trials but also that you have a duty to yourself and your family to minimise risks as much as possible. I have been doing my homework and have also received some very helpful input from my GP on the current trial, so this is something for me to mull over.
Have a great weekend everyone.
There are a few topics that I want to write on next week as I feel that it is worth talking more about the levels of care that I am receiving and the selflessness of those around me.
The stage of the game that I am at currently is just a "phoney war" and the business end is yet to arrive, so everything is a little surreal, particularly as I look and seem reasonably healthy.
I also want to add a piece on clinical trials as, in this situation, there is a dilemma between whether you participate in an unproven treatment program or whether you go with the tried and tested. It is important to realise that your treatment program has arisen from previous clinical trials but also that you have a duty to yourself and your family to minimise risks as much as possible. I have been doing my homework and have also received some very helpful input from my GP on the current trial, so this is something for me to mull over.
Have a great weekend everyone.
Thursday 25 February 2010
D.A. Decorator
Whilst I was out this morning D.A. showed up at the house in his latest incarnation as bedroom decorator. Notoplip has been organising behind the scenes!!
Nice one D.A. Help yourself to biscuits, coffee, tea and beers etc. but note that Kitten has an implanted chip and that I do a computer read out of her activity every evening :-)
Nice one D.A. Help yourself to biscuits, coffee, tea and beers etc. but note that Kitten has an implanted chip and that I do a computer read out of her activity every evening :-)
Radioactive
I've had a busy but good day (with the MRI liver news).
I started with a nuclear heart scan (MUGA) and kidney test (EDTA) which lasted from 9am to 2:30pm (Only 20 minutes in a scanner but prep and repeated blood tests). Whilst all this was going on I fitted in a visit to the psychologist with Kitten to talk about how we help the children through this difficult period (more on that another time).
I then had a dash into Central London to the Fulham Road Marsden for a prep op assessment. Thanks to SuperSal for the lift to the tube as I was running late from one appointment to another (thanks also to our local French auditor for the lift in his monster truck this morning). If only all NHS hospitals were like the Marsden. It's amazing what money can do when it is used wisely. Oh, and thanks to all of you for paying your taxes all these years - one of us had to reap the benefits :-)
My case nurse has been a star in linking together all the appointments for me.
By the time I got back I was cream crackered. I never new that lounging around having needles stuck into you could be so tiring.
Strangely though the only time recently that I have felt this tired was last Friday and on both days I have had tests which have involved the injection of radioactive dyes. I am not allowed to sit with the children for the rest of the day and it brings to mind the Jack Nicholson line from "One Flew Over the Cuckoo's Nest"
"The next woman who takes me on is gonna light up like a pinball machine and pay out in silver dollars"
Off to the Wales vs France rugby tomorrow with Notoplip and meeting in Cardiff with family members Lady Dai, Mrs Stockholm and the Serious Barman (there you go, I have christened you and you know who you are). It will be good to have a bit of normality though I guess that it won't be a night of beer and Jack Daniels.
Oh well, you can't have everything and I give thanks to my liver for being such a trusty companion over the years.
I started with a nuclear heart scan (MUGA) and kidney test (EDTA) which lasted from 9am to 2:30pm (Only 20 minutes in a scanner but prep and repeated blood tests). Whilst all this was going on I fitted in a visit to the psychologist with Kitten to talk about how we help the children through this difficult period (more on that another time).
I then had a dash into Central London to the Fulham Road Marsden for a prep op assessment. Thanks to SuperSal for the lift to the tube as I was running late from one appointment to another (thanks also to our local French auditor for the lift in his monster truck this morning). If only all NHS hospitals were like the Marsden. It's amazing what money can do when it is used wisely. Oh, and thanks to all of you for paying your taxes all these years - one of us had to reap the benefits :-)
My case nurse has been a star in linking together all the appointments for me.
By the time I got back I was cream crackered. I never new that lounging around having needles stuck into you could be so tiring.
Strangely though the only time recently that I have felt this tired was last Friday and on both days I have had tests which have involved the injection of radioactive dyes. I am not allowed to sit with the children for the rest of the day and it brings to mind the Jack Nicholson line from "One Flew Over the Cuckoo's Nest"
"The next woman who takes me on is gonna light up like a pinball machine and pay out in silver dollars"
Off to the Wales vs France rugby tomorrow with Notoplip and meeting in Cardiff with family members Lady Dai, Mrs Stockholm and the Serious Barman (there you go, I have christened you and you know who you are). It will be good to have a bit of normality though I guess that it won't be a night of beer and Jack Daniels.
Oh well, you can't have everything and I give thanks to my liver for being such a trusty companion over the years.
De"Liver" ing Good News
Good news today.
Yesterday's MRI scan showed my liver to be clear.
No secondary cancer there then.
Just the abdomen to check now in the laparoscopy next Tuesday.
Happy dayz, but feet still on the ground
Yesterday's MRI scan showed my liver to be clear.
No secondary cancer there then.
Just the abdomen to check now in the laparoscopy next Tuesday.
Happy dayz, but feet still on the ground
Wednesday 24 February 2010
Toons for the Day - "The Sun Stylee"
1. Not Fade Away - Buddy Holly
2. Don't Fear the Reaper - Blue Oyster Cult
3. Doctor Doctor - UFO
4. Don't Upset the Rhythm - The Noisettes
5. Paraniod - Black Sabbath
6. I've Got you Under my Skin - Cole Porter
7. Welcome to the Machine - Pink Floyd
8. I Believe in Miracles - Hot Chocolate
9. I Will Survive - Gloria Gaynor
10. If you Want Blood (You've Got It) - AC/DC
2. Don't Fear the Reaper - Blue Oyster Cult
3. Doctor Doctor - UFO
4. Don't Upset the Rhythm - The Noisettes
5. Paraniod - Black Sabbath
6. I've Got you Under my Skin - Cole Porter
7. Welcome to the Machine - Pink Floyd
8. I Believe in Miracles - Hot Chocolate
9. I Will Survive - Gloria Gaynor
10. If you Want Blood (You've Got It) - AC/DC
First Appointment with "Dr Fear"
The first appointment of the day was an MRI scan http://en.wikipedia.org/wiki/Magnetic_resonance_imaging of my liver.
I am not at all squeamish about needles, so I wasn't bothered that I had to have yet another cannula stuck into my arm so that a dye could be flushed around me for the scan. However, after inserting the needle into the fleshy side of the elbow the nurse seemed determined to push it this way and that in the hope that she might strike blood without really connecting to the fact that you have to put it in a vein first.
When the nerve in my wrist start to hurt, tingle and jiggle around in rhythm with the needle, which was sited some eight inches away, I thought it was best to let her know that she wasn't having a lot of luck. So we tried the other arm.
The MRI scanner in the above link is a good resemblance to the piece of equipment that I had to be popped into. It's a fairly tight space to be in for half an hour but I am not claustrophobic. However, before I went in I must confess to being a bit apprehensive. The PET scan http://en.wikipedia.org/wiki/PET_scan I had last Friday is a much shorter and spacious affair but it is silent and a little eerie and so it does feel a little uncomfortable and this played on my perception of what was in store for me.
I needn't have been bothered because it is so noisy in there that at times it feels like you are in the middle of an electro house rave.
Eyes shut, relax, nice and calm. Now that seemed a good strategy for the MRI and they seemed please to get all the scans in a single take. The problem is that it doesn't do much good if you are having an ECG http://en.wikipedia.org/wiki/ECG immediately after.
Apparently my ECG results showed an abnormality and I had to sweat it out for the afternoon at my desk at work whilst a cardiologist took a look at the results.
This is when I met "Dr Fear". We didn't have a Sopranos style "sit-down" he merely let me know that he was out there waiting for me. My worry stemmed from that fact that my heart-rate has always been nice and slow and blood pressure always spot on. I wouldn't have fancied trying to navigate the next few months with a dodgy ticker.
As it is, it may well be that there isn't an issue at all. Apparently, the nub of the problem was that my heart rate was "abnormally low" and I was quoted a rate of 47 bpm. But around 52 is normal for me and when I was younger and fitter it was sub 45. So not really surprising when I had been laying around on my back for a good part of the morning.
Still, apparently there were a "couple of other anomalies" which the cardiologist didn't care to elaborate on. I was not party to the conversation but, as I am having a pre-laproscopy assessment tomorrow, I will be able to pick brains then. I will be able to find out if I have anything to be concerned about or whether these are just other "normal abnormalities". I guess this is a by-product of benefiting from a whole raft of tests in quick succession before having another consultation. It is worth mentioning again that the levels of care I am receiving are top notch (both on technical and human levels)
My ship pitched and rolled a little until I heard about the "abnormality", especially as I am yet to discuss the issues around my lung capacity readings. Thanks to Kitten, Sam the Eagle, Big G and Jules for providing a listening ear whilst I prattled on about the subject.
I am not at all squeamish about needles, so I wasn't bothered that I had to have yet another cannula stuck into my arm so that a dye could be flushed around me for the scan. However, after inserting the needle into the fleshy side of the elbow the nurse seemed determined to push it this way and that in the hope that she might strike blood without really connecting to the fact that you have to put it in a vein first.
When the nerve in my wrist start to hurt, tingle and jiggle around in rhythm with the needle, which was sited some eight inches away, I thought it was best to let her know that she wasn't having a lot of luck. So we tried the other arm.
The MRI scanner in the above link is a good resemblance to the piece of equipment that I had to be popped into. It's a fairly tight space to be in for half an hour but I am not claustrophobic. However, before I went in I must confess to being a bit apprehensive. The PET scan http://en.wikipedia.org/wiki/PET_scan I had last Friday is a much shorter and spacious affair but it is silent and a little eerie and so it does feel a little uncomfortable and this played on my perception of what was in store for me.
I needn't have been bothered because it is so noisy in there that at times it feels like you are in the middle of an electro house rave.
Eyes shut, relax, nice and calm. Now that seemed a good strategy for the MRI and they seemed please to get all the scans in a single take. The problem is that it doesn't do much good if you are having an ECG http://en.wikipedia.org/wiki/ECG immediately after.
Apparently my ECG results showed an abnormality and I had to sweat it out for the afternoon at my desk at work whilst a cardiologist took a look at the results.
This is when I met "Dr Fear". We didn't have a Sopranos style "sit-down" he merely let me know that he was out there waiting for me. My worry stemmed from that fact that my heart-rate has always been nice and slow and blood pressure always spot on. I wouldn't have fancied trying to navigate the next few months with a dodgy ticker.
As it is, it may well be that there isn't an issue at all. Apparently, the nub of the problem was that my heart rate was "abnormally low" and I was quoted a rate of 47 bpm. But around 52 is normal for me and when I was younger and fitter it was sub 45. So not really surprising when I had been laying around on my back for a good part of the morning.
Still, apparently there were a "couple of other anomalies" which the cardiologist didn't care to elaborate on. I was not party to the conversation but, as I am having a pre-laproscopy assessment tomorrow, I will be able to pick brains then. I will be able to find out if I have anything to be concerned about or whether these are just other "normal abnormalities". I guess this is a by-product of benefiting from a whole raft of tests in quick succession before having another consultation. It is worth mentioning again that the levels of care I am receiving are top notch (both on technical and human levels)
My ship pitched and rolled a little until I heard about the "abnormality", especially as I am yet to discuss the issues around my lung capacity readings. Thanks to Kitten, Sam the Eagle, Big G and Jules for providing a listening ear whilst I prattled on about the subject.
Tips for using the blog
I realise that many of you are not familiar with using the internet let alone a blog. I am also a blog virgin so I thought I would pass on a couple of tips that will help you get the best out of the site. Perhaps those of you who know more about the subject can pass on any tips and specific guidance via the comments on this post?
I have set the blog up so that anyone can view it but only registered users can comment. That gives me control should any cranks show up as I will be able to disable their privileges.
If you read "Sushi & Notoplips" CHARLIE CHEEKY BUM story in the comments of yesterday's post you will know that there will be plenty of humour and banter to come with my mates. Everyone, who is registered should feel free to use the comments I only ask that you consider where the line is in imparting information in a public forum (you will know that I have broad limits but others may be more sensitive). Note that if you use an XML feed (such as atom) you may not see the comments.
If you register for the blog then you can do so privately if you wish. I know that a number of you have done this and your details will not appear in the list of followers.
If you subscribe as a normal follower of the blog then you still have the ability to control the information that is displayed about you, but I will know that you are there.
I suggest that everyone uses a pseudonym rather than showing their real name. Anonimity is best in cyberspace.
Of particular note, please don't use anyone's real name in your postings.
Happy posting and welcome to the blog.
I have set the blog up so that anyone can view it but only registered users can comment. That gives me control should any cranks show up as I will be able to disable their privileges.
If you read "Sushi & Notoplips" CHARLIE CHEEKY BUM story in the comments of yesterday's post you will know that there will be plenty of humour and banter to come with my mates. Everyone, who is registered should feel free to use the comments I only ask that you consider where the line is in imparting information in a public forum (you will know that I have broad limits but others may be more sensitive). Note that if you use an XML feed (such as atom) you may not see the comments.
If you register for the blog then you can do so privately if you wish. I know that a number of you have done this and your details will not appear in the list of followers.
If you subscribe as a normal follower of the blog then you still have the ability to control the information that is displayed about you, but I will know that you are there.
I suggest that everyone uses a pseudonym rather than showing their real name. Anonimity is best in cyberspace.
Of particular note, please don't use anyone's real name in your postings.
Happy posting and welcome to the blog.
Tuesday 23 February 2010
Ramble On
Nothing much doing today, so I think it is time for an unadulterated ramble.
The only medical issue of note today was that I had a lung function test. I haven't discussed the results yet but it did seem to confirm that they are functioning. I was certainly able to breath (and am still doing so) but I did note that whilst some of the readings were looking good, one of the readings suggested that there may be some more discussion on the subject (i.e. I refer to the capacity / volume). Along with the haemaglobin levels (already discussed) that might explain why my body felt like it was about to spontaneously combust when running two miles on the treadmill in December.
Since realising that I wasn't feeling too well I have made a number of changes. Some of the changes weren't rationalised e.g. I haven't felt like drinking alcohol so I haven't drunk any. Now that may seem like commonsense but please raise your hand if you have never drank for the sake of it.
Kitten is making sure that I am getting my fair sure of mainstream superfoods (e.g. blueberries, mackerel, honey) whilst other notables are offering wackier suggestions (e.g. Chlorella, Spirulina). I can't say that green algae are the first item on my menu wish list but if it feels right then I am open to suggestions.
My commonsense list of dos and don'ts is simple
Now, not only did Lance have tumourous testicles but he also had tumours in his brain. Apart from admiring Lance's recovery from the brink to the pinnacle of athleticism it also occured to me that this might be proferred as conclusive proof that there is a direct link between mens' sexual organs and their brains. A White House style red telephone link if you like. I suggest that this offers men a bona fide excuse for many a seemingly irrational aberration. I call Bill Clinton as my first witness. QED
Now back to listening to my CD of "Aum".
The only medical issue of note today was that I had a lung function test. I haven't discussed the results yet but it did seem to confirm that they are functioning. I was certainly able to breath (and am still doing so) but I did note that whilst some of the readings were looking good, one of the readings suggested that there may be some more discussion on the subject (i.e. I refer to the capacity / volume). Along with the haemaglobin levels (already discussed) that might explain why my body felt like it was about to spontaneously combust when running two miles on the treadmill in December.
Since realising that I wasn't feeling too well I have made a number of changes. Some of the changes weren't rationalised e.g. I haven't felt like drinking alcohol so I haven't drunk any. Now that may seem like commonsense but please raise your hand if you have never drank for the sake of it.
Kitten is making sure that I am getting my fair sure of mainstream superfoods (e.g. blueberries, mackerel, honey) whilst other notables are offering wackier suggestions (e.g. Chlorella, Spirulina). I can't say that green algae are the first item on my menu wish list but if it feels right then I am open to suggestions.
My commonsense list of dos and don'ts is simple
- Do get lots of sleep
- Do unclutter the house and get a space ready for rest and recuperation
- Do eat well and lots (I have been told to get plenty of calories down by the professionals)
- Don't get caught doing anything that I shouldn't do (or at least have a good excuse ready)
- Do believe that I will make a full recovery
Now, not only did Lance have tumourous testicles but he also had tumours in his brain. Apart from admiring Lance's recovery from the brink to the pinnacle of athleticism it also occured to me that this might be proferred as conclusive proof that there is a direct link between mens' sexual organs and their brains. A White House style red telephone link if you like. I suggest that this offers men a bona fide excuse for many a seemingly irrational aberration. I call Bill Clinton as my first witness. QED
Now back to listening to my CD of "Aum".
Monday 22 February 2010
Some light Relief
My wife (kitten) had an operation last year and she was in hospital for two weeks.
Our friends helped whilst I juggled work, hospital visits and the kids.
As a reward for the kids being angels through this difficult time I bought both of them a Nintendo DS (something that I had sworn they would not have).
Last weekend we told them about my condition and that I would have to go to hospital.
My son's initial reaction was priceless..
"Does that mean that we'll get a new DS game?"
Oh to have such innocence.
Our friends helped whilst I juggled work, hospital visits and the kids.
As a reward for the kids being angels through this difficult time I bought both of them a Nintendo DS (something that I had sworn they would not have).
Last weekend we told them about my condition and that I would have to go to hospital.
My son's initial reaction was priceless..
"Does that mean that we'll get a new DS game?"
Oh to have such innocence.
How Am I Feeling?
I promised to be honest so this post is for the many people who I care about and who care about me who have all asked the same questions "How am I feeling" or "How am I coping".
Peoples' reactions to illness (whether subject or onlooker) are all different and are formed by their experience, their nature and other issues that are currently affecting them. I feel that my previous experiences have had a direct impact on my reaction to the situation.
I have had a tumour once before (and I still have it). Whilst the tumour is benign, I did not know that for several months until it was operated on. So I have lived with the fear of something worse and, just as importantly, I have had first hand experience of seeing how it affects those close to me.
This experience changed my outlook on life. It made me realise that not everyone lives until 70+ and that life isn't always plain sailing.
I feel that this previous journey has helped me adapt to my current situation much more quickly. Of course I fear that other secondary sites will be found during the MRI liver scan or laparoscopy, because then I will have a much more difficult time ahead. But that does not affect my willingness to face this problem head on.
I don't see this illness as some kind of alien force that has invaded my body; rather I see it as a flaw in my own make up that I have to rectify in order to survive. What is uncomfortable is that I am also reliant on other people and events to help me out of the situation.
The news did not come as a complete shock when it was delivered because I received a patient's copy of the endoscopy form which bordered on the tactless. It contained information such as "urgent CT staging scan required". I'm not a medical guru but a quick "Google" will tell you that a staging scan is used to determine the spread of cancer, rather than whether or not it is present. My assumption was that the endoscopist looks down into the oesophagus of many patients and probably has a good feel for what is going on without waiting for the results of a biopsies. Regardless, of whether my interpretation of this and other information on the form was correct, my instinct was.
The next couple of days were dark and emotional as I discussed the possibility with my wife and the biggest emotional issue to deal with is having two children.
Over the period leading to my consultation on 9th February there was a lot of input from those close to us that we kept informed about how the lesion could be any number of things and our mood lightened, but our worst fears were confirmed.
My wife was with me when I was informed of the diagnosis and, whilst it is a difficult thing to come to terms with, I found it harder to pick up the phone and tell my parents. We sat and mulled over the situation and my wife's protestation that she had a bad headache were met with a "well go and get a f*cking tablet because I've got cancer". The joke punctured the gloom and I started to get my head around making the call which had to be done because they were waiting for news and there are miles between us.
That first phone call was probably the most difficult I have made.
I think I showed sense by asking work for a couple of days off to visit the family in Wales and those couple of days were a period of reconciliation.
I was glad that I had only discussed the possibility with a small circle of friends, family and colleagues as it meant that I only had to tell a small circle. Everybody reacts to the news differently, but I found it useful to talk and to listen to what everyone had to say.
It is important to realise that whilst you are in the eye of the storm the news is often more difficult to absorb for those close to you, especially parents and partners.
On my return to work a colleague asked how I was feeling and said that I felt that I had parachuted into a different "room" and was still packing away the parachute (i.e. emotions). My point was that when you land you have to get your feet on the ground and get grip as quickly as possible so that your emotions do not blow you from pillar to post.
Those first few days were difficult but the important thing is to get focused on what is going to happen rather than what has happened, otherwise you are ill-prepared to face the future. In my mind there is no one to blame and I don't feel anger. I also feel that you are lost if you feel sorry for yourself. However, everyone's situation is unique and I realise that this kind of news can be very destructive for many people.
For me it is important to be pragmatic rather than foolishly optimistic, so I have been sorting out issues like finance that will be important to my family should the worst happen. However, I'm not going to dwell there and would rather look to the fantastic support I am receiving form family, friends and medics.
This will be a challenging period for me and those close to me. I thank everyone for their support but also wish to reassure them that I am in good spirit and ready to rise to a difficult challenge.
Peoples' reactions to illness (whether subject or onlooker) are all different and are formed by their experience, their nature and other issues that are currently affecting them. I feel that my previous experiences have had a direct impact on my reaction to the situation.
I have had a tumour once before (and I still have it). Whilst the tumour is benign, I did not know that for several months until it was operated on. So I have lived with the fear of something worse and, just as importantly, I have had first hand experience of seeing how it affects those close to me.
This experience changed my outlook on life. It made me realise that not everyone lives until 70+ and that life isn't always plain sailing.
I feel that this previous journey has helped me adapt to my current situation much more quickly. Of course I fear that other secondary sites will be found during the MRI liver scan or laparoscopy, because then I will have a much more difficult time ahead. But that does not affect my willingness to face this problem head on.
I don't see this illness as some kind of alien force that has invaded my body; rather I see it as a flaw in my own make up that I have to rectify in order to survive. What is uncomfortable is that I am also reliant on other people and events to help me out of the situation.
The news did not come as a complete shock when it was delivered because I received a patient's copy of the endoscopy form which bordered on the tactless. It contained information such as "urgent CT staging scan required". I'm not a medical guru but a quick "Google" will tell you that a staging scan is used to determine the spread of cancer, rather than whether or not it is present. My assumption was that the endoscopist looks down into the oesophagus of many patients and probably has a good feel for what is going on without waiting for the results of a biopsies. Regardless, of whether my interpretation of this and other information on the form was correct, my instinct was.
The next couple of days were dark and emotional as I discussed the possibility with my wife and the biggest emotional issue to deal with is having two children.
Over the period leading to my consultation on 9th February there was a lot of input from those close to us that we kept informed about how the lesion could be any number of things and our mood lightened, but our worst fears were confirmed.
My wife was with me when I was informed of the diagnosis and, whilst it is a difficult thing to come to terms with, I found it harder to pick up the phone and tell my parents. We sat and mulled over the situation and my wife's protestation that she had a bad headache were met with a "well go and get a f*cking tablet because I've got cancer". The joke punctured the gloom and I started to get my head around making the call which had to be done because they were waiting for news and there are miles between us.
That first phone call was probably the most difficult I have made.
I think I showed sense by asking work for a couple of days off to visit the family in Wales and those couple of days were a period of reconciliation.
I was glad that I had only discussed the possibility with a small circle of friends, family and colleagues as it meant that I only had to tell a small circle. Everybody reacts to the news differently, but I found it useful to talk and to listen to what everyone had to say.
It is important to realise that whilst you are in the eye of the storm the news is often more difficult to absorb for those close to you, especially parents and partners.
On my return to work a colleague asked how I was feeling and said that I felt that I had parachuted into a different "room" and was still packing away the parachute (i.e. emotions). My point was that when you land you have to get your feet on the ground and get grip as quickly as possible so that your emotions do not blow you from pillar to post.
Those first few days were difficult but the important thing is to get focused on what is going to happen rather than what has happened, otherwise you are ill-prepared to face the future. In my mind there is no one to blame and I don't feel anger. I also feel that you are lost if you feel sorry for yourself. However, everyone's situation is unique and I realise that this kind of news can be very destructive for many people.
For me it is important to be pragmatic rather than foolishly optimistic, so I have been sorting out issues like finance that will be important to my family should the worst happen. However, I'm not going to dwell there and would rather look to the fantastic support I am receiving form family, friends and medics.
This will be a challenging period for me and those close to me. I thank everyone for their support but also wish to reassure them that I am in good spirit and ready to rise to a difficult challenge.
Saturday 20 February 2010
Emotional Leverage
The wife (and kids) are getting started on decorating the bedroom in order to spruce it up for both of us and so that I have a useful retreat. I will be joining the throng later.
Naturally, I suggested that a tele would be useful, but there was some debate over screen size.
I'm a pragmatic sort and my argument that you can move a larger screen downstairs when things return to normal was falling on deaf ears.
In these situations it is "emotional leverage" time. You don't even have to say anything, just let the argument sit for a while.
What an accommodating wife I have!
I feel an upgrade from Sky Plus to Sky HD coming next! Perhaps multi-room too?
There have to be a few perks to this game.
Naturally, I suggested that a tele would be useful, but there was some debate over screen size.
I'm a pragmatic sort and my argument that you can move a larger screen downstairs when things return to normal was falling on deaf ears.
In these situations it is "emotional leverage" time. You don't even have to say anything, just let the argument sit for a while.
What an accommodating wife I have!
I feel an upgrade from Sky Plus to Sky HD coming next! Perhaps multi-room too?
There have to be a few perks to this game.
Serendipity
I mentioned "Lady Luck" in my last post and she often manifests in a serendipitous way.
"Serendipity is the greatest healer
It's the light.....I'm the feeler
And I would walk into its arms.
Forgive me if I appear surprised
But,
That is its magic charm"
"Serendipity is the greatest healer
It's the light.....I'm the feeler
And I would walk into its arms.
Forgive me if I appear surprised
But,
That is its magic charm"
Friday 19 February 2010
Friday Resume
It has been a busy and enlightening day but there are still some serious issues to be answered.
First some good news; the iron tablets have been doing their job and my haemaglobin levels (related to the red blood cells' ability to carry oxygen around the body) are now at 11.7. They should be between 14-18 but they are off a low of 7.5 (which is at transfusion levels). The net result is that I haven't been feeling as sh1t as I was at the beginning of the year. Severe iron deficiency anaemia makes you fatigued and listless, so commuting in the harshest weather we have had for years and badly disrupted transport was no fun at all.
So onwards and upwards from the haemaglobin problems.
The PET scan was just "one of those things you have to go through" literally. You have to stay still for what seems like an eternity, but was in fact 45 minutes. The majority of the time you spend is in prep as they inject the radioactive solution into your bloodstream and you have to wait for 50 minutes before you either turn into the Incredible Hulk and burst through the door or "mince" your way in your blue gown down to the scanning room. Despite other aspirations, I minced meekly.
I saw the surgeon at the Marsden at 4pm having taking a detour via work and this is where the real events of the day took place.
My situation is not yet clear in that, although I am optimistic, an operation may not yet be available to me. The PET scan showed that there aren't any major secondary cancerous growths but there is still a question mark over my liver. The Marsden team feel that something is present on one of the liver's ligaments but they do not know what yet. The surgeon commented that if there is a secondary growth on the ligament then he is likely to operate provided that is the only site of spread.
Where things get tricky is if the MRI liver scan that I am having next Wednesday shows up more problems with the liver OR if the laparoscopy that I now have scheduled for the 2nd of March shows any significant spread of the cancer into the stomach. If either of these proves to be the case then there will not be surgery for me and the outlook will be much more difficult. I think that belief systems are very powerful in determining your future and, if I end up without surgery, I will have to prove to myself what I believe.
So I am left waiting until after the laparoscopy to know where I stand and I invite Lady Luck to walk into my life and shine her light on me.
The meeting at the Marsden was a constructive one and I was seen by different members of the team including the Head surgeon, Dietician, Physio as well as my case nurse.
I am being told to load with calories because I will lose a lot of weight during the period of surgery (because of physical issues) and possibly during chemotherapy (because of appetite issues). Also, because the haemoglobin levels are up I will increase the exercise regime to get myself as fit as possible (without overdoing it).
My mood is still very upbeat but I guess the overriding message of this post is that even when you are in this situation there often aren't clear cut answers and there is still a waiting game to be played.
In the meantime we got a new camcorder to get some footage before I enter the treatment phase (and start looking like the meerkat posted earlier). Every man needs a new toy! My thanks to "Big G" for helping me sort that one out.
First some good news; the iron tablets have been doing their job and my haemaglobin levels (related to the red blood cells' ability to carry oxygen around the body) are now at 11.7. They should be between 14-18 but they are off a low of 7.5 (which is at transfusion levels). The net result is that I haven't been feeling as sh1t as I was at the beginning of the year. Severe iron deficiency anaemia makes you fatigued and listless, so commuting in the harshest weather we have had for years and badly disrupted transport was no fun at all.
So onwards and upwards from the haemaglobin problems.
The PET scan was just "one of those things you have to go through" literally. You have to stay still for what seems like an eternity, but was in fact 45 minutes. The majority of the time you spend is in prep as they inject the radioactive solution into your bloodstream and you have to wait for 50 minutes before you either turn into the Incredible Hulk and burst through the door or "mince" your way in your blue gown down to the scanning room. Despite other aspirations, I minced meekly.
I saw the surgeon at the Marsden at 4pm having taking a detour via work and this is where the real events of the day took place.
My situation is not yet clear in that, although I am optimistic, an operation may not yet be available to me. The PET scan showed that there aren't any major secondary cancerous growths but there is still a question mark over my liver. The Marsden team feel that something is present on one of the liver's ligaments but they do not know what yet. The surgeon commented that if there is a secondary growth on the ligament then he is likely to operate provided that is the only site of spread.
Where things get tricky is if the MRI liver scan that I am having next Wednesday shows up more problems with the liver OR if the laparoscopy that I now have scheduled for the 2nd of March shows any significant spread of the cancer into the stomach. If either of these proves to be the case then there will not be surgery for me and the outlook will be much more difficult. I think that belief systems are very powerful in determining your future and, if I end up without surgery, I will have to prove to myself what I believe.
So I am left waiting until after the laparoscopy to know where I stand and I invite Lady Luck to walk into my life and shine her light on me.
The meeting at the Marsden was a constructive one and I was seen by different members of the team including the Head surgeon, Dietician, Physio as well as my case nurse.
I am being told to load with calories because I will lose a lot of weight during the period of surgery (because of physical issues) and possibly during chemotherapy (because of appetite issues). Also, because the haemoglobin levels are up I will increase the exercise regime to get myself as fit as possible (without overdoing it).
My mood is still very upbeat but I guess the overriding message of this post is that even when you are in this situation there often aren't clear cut answers and there is still a waiting game to be played.
In the meantime we got a new camcorder to get some footage before I enter the treatment phase (and start looking like the meerkat posted earlier). Every man needs a new toy! My thanks to "Big G" for helping me sort that one out.
Chemo Hats
I once had my head shaved (more or less) for a £50 bet and I looked like an alien. It is also still very cold, so I feel that it will be good to have a Chemo hat (or selection) at hand.
My first choice might create a furrowed brow or two in the Marsden waiting rooms but my wife has bet me that I won't wear it :-)
My first choice might create a furrowed brow or two in the Marsden waiting rooms but my wife has bet me that I won't wear it :-)
Collateral Damage
This blog is is intended to be an articulation of my journey through this illness. Like any journey, it isn't just a matter of going from A to B and describing each intermediate stage. It is about the impact it has on me and the people who surround me and the resulting change that it brings. Dealing with the impact and change is where the individual retains most control over the situation, whilst much of your physical well-being is out of your control.
I want to bring an honesty to the description of my emotional and mental state and my approach to it because I feel that it will be a good source of reflection and reconcilation.
I will be writing on the subject this weekend but, in the meantime, I would like to thank everyone for the wonderful support that I have received so far. I extend that thanks to family, friends and those involved in my medical care.
Before I get going for my appointment I think we need to talk about Chemo Hats.
I want to bring an honesty to the description of my emotional and mental state and my approach to it because I feel that it will be a good source of reflection and reconcilation.
I will be writing on the subject this weekend but, in the meantime, I would like to thank everyone for the wonderful support that I have received so far. I extend that thanks to family, friends and those involved in my medical care.
Before I get going for my appointment I think we need to talk about Chemo Hats.
Friday - the day ahead
A busy day today.
First there is the PET scan http://en.wikipedia.org/wiki/Positron_emission_tomography in London (a short walk from Bond Street tube). This starts at 8:15am and should last 3-4 hours. The scan has been arranged in a private clinic because the Marsden facilities are fully booked. It is good to feel that everything is moving as quickly as possible and that a lot of professionals are working together to give me the best possible outlook.
As work is relatively nearby, I will go there after the scan for a few hours work before heading to the Marsden to meet my Surgeon. My appointment is at 4pm but I have been advised that the clinic often runs late. Waiting isn't a problem when you understand the effort that is being made on your behalf and also that other patients need the same levels of care that you want.
An MRI liver scan has been scheduled for next Wednesday at 8:40am at the Marsden.
Both my parents brought my daughter back from South Wales yesterday and endured a terrible journey. They encountered everything from snow blizzards to a bomb squad presence on the Severn Bridge. The two and a half to three hour journey took seven hours!
Anyway it was good to see them both and my wife and I both enjoy having our daughter back. I am sure that the house will be much more "lively" now that both my daughter (8) and son (5) are both in situ.
My parents are returning today. They are mindful of giving us "space" as a family whilst we come to terms with the situation and also get organised in the house.
I am disappointed that I will not be travelling to Wales this weekend to go to my cousin's wedding evening. Apart from wanting to wish her the best, in person, it would have been good to have seen the family together. However, the combination of my daughter having already been away for over a week and the amount we have to do here proved to be the overriding factor.
The only major issue for us now is to work out how to bring our children into this situation. We have not yet told them anything definite and have decided to use the support that is available through the hospital to discuss the issue and form an approach. We both feel it extremely important that we make the best choices in how to nurse them through this, whilst also realising that children a very resilient.
First there is the PET scan http://en.wikipedia.org/wiki/Positron_emission_tomography in London (a short walk from Bond Street tube). This starts at 8:15am and should last 3-4 hours. The scan has been arranged in a private clinic because the Marsden facilities are fully booked. It is good to feel that everything is moving as quickly as possible and that a lot of professionals are working together to give me the best possible outlook.
As work is relatively nearby, I will go there after the scan for a few hours work before heading to the Marsden to meet my Surgeon. My appointment is at 4pm but I have been advised that the clinic often runs late. Waiting isn't a problem when you understand the effort that is being made on your behalf and also that other patients need the same levels of care that you want.
An MRI liver scan has been scheduled for next Wednesday at 8:40am at the Marsden.
Both my parents brought my daughter back from South Wales yesterday and endured a terrible journey. They encountered everything from snow blizzards to a bomb squad presence on the Severn Bridge. The two and a half to three hour journey took seven hours!
Anyway it was good to see them both and my wife and I both enjoy having our daughter back. I am sure that the house will be much more "lively" now that both my daughter (8) and son (5) are both in situ.
My parents are returning today. They are mindful of giving us "space" as a family whilst we come to terms with the situation and also get organised in the house.
I am disappointed that I will not be travelling to Wales this weekend to go to my cousin's wedding evening. Apart from wanting to wish her the best, in person, it would have been good to have seen the family together. However, the combination of my daughter having already been away for over a week and the amount we have to do here proved to be the overriding factor.
The only major issue for us now is to work out how to bring our children into this situation. We have not yet told them anything definite and have decided to use the support that is available through the hospital to discuss the issue and form an approach. We both feel it extremely important that we make the best choices in how to nurse them through this, whilst also realising that children a very resilient.
Thursday 18 February 2010
A little break
PET scan has been reschedule for tomorrow morning at 8:15am, so just a visit to the GP this afternoon at 2:40pm.
My daughter has been in Wales with my mother for the last week, so my wife and I are looking forward to seeing her.
My daughter has been in Wales with my mother for the last week, so my wife and I are looking forward to seeing her.
Wednesday 17 February 2010
Back from the Hospital
Back from the Marsden after 3 and a half hours and met the Head of the department and registrar.
The tumour has been staged as being stage 3 and T3 N1 M0 (where T is the size on a scale of 0 to 4, N is the spread to lymph nodes on a scale of 0 to 3 and M describes the spread to another part of the body - M0 is no spread and M1 is spread).
Things seems to be shaping up but before I start chemotherapy I have to undergo a number of tests over the next two weeks. The tests have to be scheduled but they start with a PET scan tomorrow at Baker Street London.
Here's a list
If these tests are ok then the following should take place in chronological order
In the meantime (time permitting) I hope to make a blog entry on the emotional impact that different phases have had on me and my friends and family. It is this area which differs so much for everybody, but whilst reactions are different the events are the same.
The tumour has been staged as being stage 3 and T3 N1 M0 (where T is the size on a scale of 0 to 4, N is the spread to lymph nodes on a scale of 0 to 3 and M describes the spread to another part of the body - M0 is no spread and M1 is spread).
Things seems to be shaping up but before I start chemotherapy I have to undergo a number of tests over the next two weeks. The tests have to be scheduled but they start with a PET scan tomorrow at Baker Street London.
Here's a list
- PET scan (Positron Emission Tomography)
- Lung functions
- EDTA (Kidney test)
- MUGA (Heart scan)
- MRI (Liver scan)
- Laparoscopy
- EUS (Endoscopic ultrasound
- Blood Tests + ECG
If these tests are ok then the following should take place in chronological order
- 3 cycles of three weeks of chemotherapy
- Operation
- Another 3 cycles of three weeks of chemotherapy
In the meantime (time permitting) I hope to make a blog entry on the emotional impact that different phases have had on me and my friends and family. It is this area which differs so much for everybody, but whilst reactions are different the events are the same.
Tuesday 16 February 2010
Skipping to the present
There's more to write about the lead up but I am due to meet the head of Oncology at the Royal Marsden tomorrow, so it is worth detailing my appointments. I will update the blog as soon as I return from them.
Appointment at Royal Marsden 15:30 GMT 17/02/2010 with the head of the Gastrointestinal Unit
Appointment at the Royal Marsden 16:00 GMT 19/02/1010 with the Surgeon.
I guess by the end of week I will know what they want do to with me assuming that further exploratory tests allow them to.
The suggestion as I understand it currently is chemotherapy followed by surgery followed by chemotherapy.
Time to roll the sleeves up and start focusing on the job in hand - it is going to get messy!
I'm not sure whether the treatment books they give you in advance are meant to inform you or give you a self induced colonoscopy. Probably the latter as I feel pounds lighter already.
My good friend (who we shall refer to as Notoplip) now refers to me as Chemo Boy and thinks I will look like this in a year's time!
Appointment at Royal Marsden 15:30 GMT 17/02/2010 with the head of the Gastrointestinal Unit
Appointment at the Royal Marsden 16:00 GMT 19/02/1010 with the Surgeon.
I guess by the end of week I will know what they want do to with me assuming that further exploratory tests allow them to.
The suggestion as I understand it currently is chemotherapy followed by surgery followed by chemotherapy.
Time to roll the sleeves up and start focusing on the job in hand - it is going to get messy!
I'm not sure whether the treatment books they give you in advance are meant to inform you or give you a self induced colonoscopy. Probably the latter as I feel pounds lighter already.
My good friend (who we shall refer to as Notoplip) now refers to me as Chemo Boy and thinks I will look like this in a year's time!
Symptoms and Diagnosis
Before launching into a daily blog there needs to be some appreciation of how I got here. In many ways its not really relevant to the present, but I would like to document it in case it is of use to others. This entry will be concerned with the some of the signs and there will be be a separate entry to record the emotional impact. Its a bit of a dry topic, so you prepare for lengthy tome or skip it.
The most important piece of advice I can give regarding my condition is that if you ever have difficulty in swallowing your food, without experiencing any pain then go and see a doctor. If you are confronted by such a symptom then there is no need to run around your room shouting "I've got cancer" because it could be caused by many different factors. However, I think that there is a tendency to get checked out when we experience pain or symptoms that put us on our backs but not to check out basic mechanics like this.
I have not been able to get through a meal without an accompanying glass of water for a few months but my situation was clouded by another symptom that I have ignored for years. I have been experiencing what my consultant termed as "bland reflux" for years. Nothing worse than my food popping back into my mouth after eating it, with the same taste as it went down. No acid feeling or heartburn pain or "sicky" feeling. I didn't read anything into this because I've never been a great chewer of food and it was suggested by those near and dear that this was the likely reason. The net result was that when I started having difficulty swallowing the same likely reason was tabled though I did make a conscious effort to start thinking about what I was doing.
The swallowing issues are the most specific symptoms but on a general note I haven't been feeling fantastic for a while. There hasn't been anything specific and nothing that couldn't be put down to perhaps slowing down as I enter deeper into my forties (I am 44). I'm settled, so I don't lead a wild life style but I have partied plenty in the past. Forget medical issues and symptoms, I have noticed that in the last three or four years my recovery from a good night out has dipped considerably and my capacity to go out and binge on beers and Jack Daniels has waned in equal measure. However, I do generally look after myself fairly well. My weight is prone to drift up, as I enjoy a glass of wine and enjoy my food, but when it becomes excessive I get in the gym and take it off again (a touch of the Ricky Hatton's - but without the talent).
I've also had one or two issues. Recurring ear infections have been a problem though I never had one until my mid to late thirties and also a urinary infection a couple of years ago that I remember the doctor commenting on it being unusual in someone my age.
Things have built up over the last couple of years ago and I have noticed people saying that I don't look well when I am on a night out. It hasn't been pointed out in a gentle way but rather a spur of the moment, blurted and undiplomatic way.
This year when I decided to get in the gym and get fit I was struggling with cardio exercise at levels that I normally warm up at but put this down to the fact that I was ice-skating regularly - a hobby that I took up to spend time with my daughter. I just assumed that my legs were tired from ice-skating so my capacity to push myself was lessened.
Then I had a number of triggers last December which were fired in quick succession. Banter with a friend at work lead to a running challenge. We shall refer to him as "Super Frank" who was in training for the marathon and who had recently run a half-marathon. His time was just under 10 minute mile pace, which to my mind is just above walking pace. So the banter started and I thought I'd better get into training.
I haven't run for a good 10 to 15 years but thought that for 4 or 5 miles seven minute miles should be easily achievable in a couple of months. The first time I got on the treadmill I did a mile in 10 minutes and felt like I was going to pass out. I'd lost over a stone and was weighing around 11st 4lbs so, regardless of how long I hadn't run for I shouldn't feel like I was just about to have a heart attack.
I dismissed it and tried a two mile run a couple of days later thinking that I was out of practice, but that was no better and I walked / ran the second mile. A third run saw two ten minute miles and I could see my £50 bet wafting in Super Frank's direction. I was a little bemused.
I'd been off the "pop" for a couple of months whilst I lost weight but didn't really feel like getting in the Christmas party spirit, but a night out in London with friends for show and a drink set the alarm bells ringing. A few drinks before the show including a strong cocktail made me feel restless in my seat and struggling to hold my attention. I hadn't had a lot to drink but it was more a case of having "restless legs" something that I had been suffering with more in the evenings and the feeling of becoming tired suddenly.
A few drinks after the show and these, my closest friends, were telling me that I looked very pale. I then got drunk quickly and grouchy. I always seem to get grouchy after a good drink these days.
I skipped other nights out over the Christmas period and didn't bother with drink until Christmas itself. A couple of glasses of wine in the evenings and I was strolling around the living room with "restless legs" and off to bed at 10pm feeling drained.
At that point I decided to get a blood test done that had been assigned for my recurring ear infections and then went to the doctors.
The first stab at diagnosis was dyspepsia i.e. my problems were caused by acid reflux from the stomach which may be caused by a number of factors but the most common being a peptic ulcer or a bacterial infection H. pylori. Despite pressing, no explanation was offered for the fatigue I was suffering. I guess that the assumption was that the suggested condition could cause the other symptoms. I was prescribed "lansoprazole" tablets for a month to see how I did.
The next day I remained unconvinced by the diagnosis, especially as when I looked closer the symptoms and diagnosis could be caused by coeliac disease which is prevalent in my mother's side of the family.
I went back to a doctors and was allocated a different doctor who had already received my blood test results. My haemaglobin levels were low enough for me to be considered severely anaemic. There was a check to request that I undergo a "rectal" examination so I "lost my virginity" despite protestations that I had only come down for a chat. There were calls to the hospital to see whether I should be admitted but instead I had an appointment arranged to see a gastric consultant on the 12th January and was left to dwell on my circumstance walking home with KY Jelly dripping down my leg. It was New Year's Eve and, unsurprisingly, celebrations were muted.
The appointment on the 12th January suggested the likely cause as being coeliac given the prevelance in the family and I had an endoscopy arranged for the 25th. It was here that the alarm bells started ringing.
The endoscopy was uncomfortable enough given what the condition transpired to be but the patient's copy of the results form was fairly suggestive. It included terms such as severe lesion and stricture in oesophagaus and urgent CT staging scan required. To my undertanding a staging scan is used to determine how far a cancer has spread. It was suggested to me that the endoscopist may be being thorough but I assumed that when you spend your day looking down peoples' throats you get a fairly good sense of what you are seeing down there. My wife and I were therefore prepared for the worse.
The CT scan was a formality. It's a non invasive procedure and they scanned by chest, abdomen and pelvis. It took place on Wednesday, 3rd February.
D-day was with my consultant on Tuesday 9th Feb. The hospital I had visited for my initial consultation, endoscopy and CT Scan was a few minutes drive so we left it until the last minute to drive there. It was only when I got to the unit where my original consultation was that I realised I was in the wrong place. It was like a magician's trick; play the same move three times and the mind assumes that same event will be replayed.
So, a dash to the otherside of town and we were in the right place.
A short wait then into the room with the consultant, a nurse and a case nurse.
The most important piece of advice I can give regarding my condition is that if you ever have difficulty in swallowing your food, without experiencing any pain then go and see a doctor. If you are confronted by such a symptom then there is no need to run around your room shouting "I've got cancer" because it could be caused by many different factors. However, I think that there is a tendency to get checked out when we experience pain or symptoms that put us on our backs but not to check out basic mechanics like this.
I have not been able to get through a meal without an accompanying glass of water for a few months but my situation was clouded by another symptom that I have ignored for years. I have been experiencing what my consultant termed as "bland reflux" for years. Nothing worse than my food popping back into my mouth after eating it, with the same taste as it went down. No acid feeling or heartburn pain or "sicky" feeling. I didn't read anything into this because I've never been a great chewer of food and it was suggested by those near and dear that this was the likely reason. The net result was that when I started having difficulty swallowing the same likely reason was tabled though I did make a conscious effort to start thinking about what I was doing.
The swallowing issues are the most specific symptoms but on a general note I haven't been feeling fantastic for a while. There hasn't been anything specific and nothing that couldn't be put down to perhaps slowing down as I enter deeper into my forties (I am 44). I'm settled, so I don't lead a wild life style but I have partied plenty in the past. Forget medical issues and symptoms, I have noticed that in the last three or four years my recovery from a good night out has dipped considerably and my capacity to go out and binge on beers and Jack Daniels has waned in equal measure. However, I do generally look after myself fairly well. My weight is prone to drift up, as I enjoy a glass of wine and enjoy my food, but when it becomes excessive I get in the gym and take it off again (a touch of the Ricky Hatton's - but without the talent).
I've also had one or two issues. Recurring ear infections have been a problem though I never had one until my mid to late thirties and also a urinary infection a couple of years ago that I remember the doctor commenting on it being unusual in someone my age.
Things have built up over the last couple of years ago and I have noticed people saying that I don't look well when I am on a night out. It hasn't been pointed out in a gentle way but rather a spur of the moment, blurted and undiplomatic way.
This year when I decided to get in the gym and get fit I was struggling with cardio exercise at levels that I normally warm up at but put this down to the fact that I was ice-skating regularly - a hobby that I took up to spend time with my daughter. I just assumed that my legs were tired from ice-skating so my capacity to push myself was lessened.
Then I had a number of triggers last December which were fired in quick succession. Banter with a friend at work lead to a running challenge. We shall refer to him as "Super Frank" who was in training for the marathon and who had recently run a half-marathon. His time was just under 10 minute mile pace, which to my mind is just above walking pace. So the banter started and I thought I'd better get into training.
I haven't run for a good 10 to 15 years but thought that for 4 or 5 miles seven minute miles should be easily achievable in a couple of months. The first time I got on the treadmill I did a mile in 10 minutes and felt like I was going to pass out. I'd lost over a stone and was weighing around 11st 4lbs so, regardless of how long I hadn't run for I shouldn't feel like I was just about to have a heart attack.
I dismissed it and tried a two mile run a couple of days later thinking that I was out of practice, but that was no better and I walked / ran the second mile. A third run saw two ten minute miles and I could see my £50 bet wafting in Super Frank's direction. I was a little bemused.
I'd been off the "pop" for a couple of months whilst I lost weight but didn't really feel like getting in the Christmas party spirit, but a night out in London with friends for show and a drink set the alarm bells ringing. A few drinks before the show including a strong cocktail made me feel restless in my seat and struggling to hold my attention. I hadn't had a lot to drink but it was more a case of having "restless legs" something that I had been suffering with more in the evenings and the feeling of becoming tired suddenly.
A few drinks after the show and these, my closest friends, were telling me that I looked very pale. I then got drunk quickly and grouchy. I always seem to get grouchy after a good drink these days.
I skipped other nights out over the Christmas period and didn't bother with drink until Christmas itself. A couple of glasses of wine in the evenings and I was strolling around the living room with "restless legs" and off to bed at 10pm feeling drained.
At that point I decided to get a blood test done that had been assigned for my recurring ear infections and then went to the doctors.
The first stab at diagnosis was dyspepsia i.e. my problems were caused by acid reflux from the stomach which may be caused by a number of factors but the most common being a peptic ulcer or a bacterial infection H. pylori. Despite pressing, no explanation was offered for the fatigue I was suffering. I guess that the assumption was that the suggested condition could cause the other symptoms. I was prescribed "lansoprazole" tablets for a month to see how I did.
The next day I remained unconvinced by the diagnosis, especially as when I looked closer the symptoms and diagnosis could be caused by coeliac disease which is prevalent in my mother's side of the family.
I went back to a doctors and was allocated a different doctor who had already received my blood test results. My haemaglobin levels were low enough for me to be considered severely anaemic. There was a check to request that I undergo a "rectal" examination so I "lost my virginity" despite protestations that I had only come down for a chat. There were calls to the hospital to see whether I should be admitted but instead I had an appointment arranged to see a gastric consultant on the 12th January and was left to dwell on my circumstance walking home with KY Jelly dripping down my leg. It was New Year's Eve and, unsurprisingly, celebrations were muted.
The appointment on the 12th January suggested the likely cause as being coeliac given the prevelance in the family and I had an endoscopy arranged for the 25th. It was here that the alarm bells started ringing.
The endoscopy was uncomfortable enough given what the condition transpired to be but the patient's copy of the results form was fairly suggestive. It included terms such as severe lesion and stricture in oesophagaus and urgent CT staging scan required. To my undertanding a staging scan is used to determine how far a cancer has spread. It was suggested to me that the endoscopist may be being thorough but I assumed that when you spend your day looking down peoples' throats you get a fairly good sense of what you are seeing down there. My wife and I were therefore prepared for the worse.
The CT scan was a formality. It's a non invasive procedure and they scanned by chest, abdomen and pelvis. It took place on Wednesday, 3rd February.
D-day was with my consultant on Tuesday 9th Feb. The hospital I had visited for my initial consultation, endoscopy and CT Scan was a few minutes drive so we left it until the last minute to drive there. It was only when I got to the unit where my original consultation was that I realised I was in the wrong place. It was like a magician's trick; play the same move three times and the mind assumes that same event will be replayed.
So, a dash to the otherside of town and we were in the right place.
A short wait then into the room with the consultant, a nurse and a case nurse.
Sunday 14 February 2010
Why "The Book of Silence"?
Without ever dwelling on the subject, I have always thought that there are two ways in which your life can be taken
It is easy to question some of my symptoms retrospectively, but there was a build up of issues that eventually led me to take action rather than one obvious sign. My condition crept up on me without showing me its hand.
Once you find yourself in the postion that I am in the question is "How do I get out of it".
Just as this condition developed by stealth I expect to have to find a strong centre of inner peace - "emotional silence".
To be surrounded by a solid and supportive team is a good start.
Just as in everyday life, I expect to find fun, humour, hope, pain, sorrow and despair along my near-term journey. The only difference is that I expect the roller-coaster to reach higher highs and lower lows.
I hope that anyone who joins me on this journey is able to take something positive from the experience.
- The lightening bolt - e.g. heart attack or whilst in sleep
- Like a deciduous tree gradually shedding it leaves
It is easy to question some of my symptoms retrospectively, but there was a build up of issues that eventually led me to take action rather than one obvious sign. My condition crept up on me without showing me its hand.
Once you find yourself in the postion that I am in the question is "How do I get out of it".
Just as this condition developed by stealth I expect to have to find a strong centre of inner peace - "emotional silence".
To be surrounded by a solid and supportive team is a good start.
Just as in everyday life, I expect to find fun, humour, hope, pain, sorrow and despair along my near-term journey. The only difference is that I expect the roller-coaster to reach higher highs and lower lows.
I hope that anyone who joins me on this journey is able to take something positive from the experience.
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