Showing me his new film taster:
Friday, 25 September 2009
Friends of Anchor
I've still heard nothing from the Pharmacy as yet. So no Sorafenib to take.
At the same time i feel wonderful and rolled in the BJJ class last night! No side effects but for cramps in the forearm due to making the mistake of rolling with a white belt, who's interpretation of 'light' was to go balistic! Yes You Alan!
I'm more alert and energetic. Its a wonderful sunny day and the bike run in was a blast!
Still, need to reduce this damn tumour! And heres an email telling me the new months supply awaits me.
The company i work for, Subsea7 asked me where they could put some money for charity. Since they refused my bank account as a charity, i suggested the Anchor Unit at ARI.
Wednesday, 23 September 2009
Feel pretty good after a busy day. I'm seeing life how it would be without the Sorafenib as its been a week since my stock ran out. I'm much clearer, feel energised and I put a 5 hour shift in the office today!
The Sorafenib has a role to play and i may readdress that if I don't get onto the Transplant list. Right now, that list is a strong game plan.
This was filmed by Erik Paulson in December. I'd not long got home after serious surgery and I was heavily sedated. I now know the Doctors were expecting me not to last! I wouldn't have listened to them anyway! ; )
Monday, 21 September 2009
Mondays blues
Not very well today. Feel nauseous.
But what a great day yesterday!
Took the Fighters Training and what a great session it was. Everyone put in 100% and really did themselves credit!
Then i went out on my bike with three others. Just short a 100 mile blast, on the back roads out to Alford, across to Aboyne, and home again. I don't normally go out in a group so that made a nice change.
Got to listen to the radio with the chels beating spurs and then had tea!
Gil Scott Heron has a new album out next years - try here for a sample
Back to bed time. : (
J Krishnamurti
If I had no concept about myself, what would happen to me?
Why have I, who have lived forty, fifty, sixty - or whatever number of years it is that one has lived - why have I gathered this store-houseful of what I think, what I feel, what I am, what I should be, this accumulation of experience, knowledge?
And if I had not done that, what would happen?
Do you understand? If I had no concept about myself, what would happen to me? I would be lost, wouldn't I? I would be uncertain, terribly frightened of life. So I build an image, a myth, a concept, a conclusion about myself, because without this framework life would become for me utterly meaningless, uncertain, fearful: there would be no security. I may be secure outwardly; I may have a job, a house, and all the rest of it, but inwardly also I want to be completely secure. And it is the desire to be secure that compels me to build this image of myself, which is verbal. Do you understand?
It has no reality at all; it is merely a concept, a memory, an idea, a conclusion.
But what a great day yesterday!
Took the Fighters Training and what a great session it was. Everyone put in 100% and really did themselves credit!
Then i went out on my bike with three others. Just short a 100 mile blast, on the back roads out to Alford, across to Aboyne, and home again. I don't normally go out in a group so that made a nice change.
Got to listen to the radio with the chels beating spurs and then had tea!
Gil Scott Heron has a new album out next years - try here for a sample
Back to bed time. : (
J Krishnamurti
If I had no concept about myself, what would happen to me?
Why have I, who have lived forty, fifty, sixty - or whatever number of years it is that one has lived - why have I gathered this store-houseful of what I think, what I feel, what I am, what I should be, this accumulation of experience, knowledge?
And if I had not done that, what would happen?
Do you understand? If I had no concept about myself, what would happen to me? I would be lost, wouldn't I? I would be uncertain, terribly frightened of life. So I build an image, a myth, a concept, a conclusion about myself, because without this framework life would become for me utterly meaningless, uncertain, fearful: there would be no security. I may be secure outwardly; I may have a job, a house, and all the rest of it, but inwardly also I want to be completely secure. And it is the desire to be secure that compels me to build this image of myself, which is verbal. Do you understand?
It has no reality at all; it is merely a concept, a memory, an idea, a conclusion.
Sunday, 20 September 2009
Are you a card carrier?
Last week I pointed you to the Donor issue and we read about writer Frank Deasy who told of his urgent wait for a donor liver. His account of his plight sparked a huge demand for organ donor cards. Last Wednesday his wait ended but, tragically, he died on the operating table. Read here.
In his death there will be life! Each year 1,000 people die while awaiting a transplant, an average of three a day. Sign up here!
"`I want a clean cup,' interrupted the Hatter: `let's all move one place on.'
He moved on as he spoke, and the Dormouse followed him: the March Hare moved into the Dormouse's place, and Alice rather unwillingly took the place of the March Hare. The Hatter was the only one who got any advantage from the change: and Alice was a good deal worse off than before, as the March Hare had just upset the milk-jug into his plate."
In his death there will be life! Each year 1,000 people die while awaiting a transplant, an average of three a day. Sign up here!
You can register as an NHS organ donor in a matter of seconds online at uktransplant.org.uk, or call 0300 123 23 23
A night full of cramps again and I didn't do much exercise yesterday. Maybe with the Sorafenib not being put into the body - who knows. About 30 minutes during the night.
Still i hear that the Banana Splits are coming back to TV !
Still i hear that the Banana Splits are coming back to TV !
"`I want a clean cup,' interrupted the Hatter: `let's all move one place on.'
He moved on as he spoke, and the Dormouse followed him: the March Hare moved into the Dormouse's place, and Alice rather unwillingly took the place of the March Hare. The Hatter was the only one who got any advantage from the change: and Alice was a good deal worse off than before, as the March Hare had just upset the milk-jug into his plate."
-Lewis Carroll, Alice in Wonderland
With the talk of the next election already being inserted in every sentence, the Mad Hatters tea party comes to mind. The disenfranchisement of huge sections of the popultion to the parliamentary process sees less that 50% voting and with the recent MP's expenses uproar, will that drop further? Whatever it is, it isn't working, although some seem to be making a fortune out of it.
People who favour a radically different society do not write much about health care. I’m not speaking of liberals or social democrats, but individuals who prefigure a society that empowers communities in which decisions are made directly by people in said communities.
People who favour a radically different society do not write much about health care. I’m not speaking of liberals or social democrats, but individuals who prefigure a society that empowers communities in which decisions are made directly by people in said communities.
It’s understandable why they are reluctant to write about health care at great length; for a real, democratic, free health care system based on the needs of the community, in which decisions are decided collectively by health care personnel together with members of the respective community, a complete transformation of extant communities is required.
Remember, just because you only hear two voices, it doesn't mean there is not a third! YOURS!
Saturday, 19 September 2009
Andy T
Feeling a bit sickly at the moment. My prescription hasn't yet come through for the next batch of Sorafenib and so I have a few days off from it. I can't wait for the Chelsea Spurs game tomorrow! Up The Chelsea!
Andy T was a punk poet in the early 80's. We share a common bond of having done several tours with Crass. When he was going into surgery for a brain hemorrhage issue, he had to sign forms to say that he might die or be crippled and they would not be held liable.
His missus Cheryl was beside herself with worry. Andy slipped a piece of paper with a short poem on into her hand on the way into the operating room. He sent me the poem on recently hearing of my predicament!
Andy T was a punk poet in the early 80's. We share a common bond of having done several tours with Crass. When he was going into surgery for a brain hemorrhage issue, he had to sign forms to say that he might die or be crippled and they would not be held liable.
His missus Cheryl was beside herself with worry. Andy slipped a piece of paper with a short poem on into her hand on the way into the operating room. He sent me the poem on recently hearing of my predicament!
Saint Peter's waiting by the gate
He offers me his hand
I'm sorry Pete It all looks great,
But you don't understand....
It might be written,
It might be fate
But you haven't got enough big mates
To get ME through the pearly gates
So sling your hook you bastard
1982 On tour with Crass. Two Welsh lads and me
The moment there is accumulation
He offers me his hand
I'm sorry Pete It all looks great,
But you don't understand....
It might be written,
It might be fate
But you haven't got enough big mates
To get ME through the pearly gates
So sling your hook you bastard
1982 On tour with Crass. Two Welsh lads and me
The moment there is accumulation
To understand conflict, we must understand relationship, and the understanding of relationship does not depend on memory, on habit, on what has been or what should be. It depends on choiceless awareness from moment to moment, and if we go into it deeply, we shall see that in that awareness there is no accumulative process at all. The moment there is accumulation, there is a point from which to examine, and that point is conditioned; and hence, when we regard relationship from a fixed point, there must be pain, there must be conflict. JKrishnamurti
Thursday, 17 September 2009
Wednesday, 16 September 2009
The Living Dead
I have had two entertaining [sic] trips to the hospital in the last two days after a weekend of poorly days.
Tuesday was a result of the Tumour Doctor finding e-mails i had sent a few weeks before in her junk inbox. She asked if I was" able to pop up even tomorrow to ward xx where I’ll be doing a ward round until 1030?"
So in i went, on my motorcycle, on a lovely Tuesday morning. The nurse said she'd give the Doctor a call and I went to the waiting room. I ended up falling a sleep for over an hour and had a really quality catnap! Never saw the Dr but the rest of the day was great and I taught two classes at night.
Wednesday and I have a busy day in the office. My energy is good and after a 5 hour stint, I head off to the hospital to see Mr Liver Doctor. This one gives me it straight and I want to know if I can get onto the transplant list.
The reason I am not already on the transplant list is because if you are receiving treatment for a tumour then you don't qualify as the potential of other tumours are greater. Liver transplants, as we discussed a post ago, are hard to come by because of the lack of donors. With increased car safety that production line is restricted and with society's binge drinking habits most livers are unsuitable.
So I say, why not check for other tumours? It would appear that this is not easy but the Dr has arranged a CT scan to measure the current size of my tumours and also a chest examination to see if any evidence of them are there. If its clear he will fight my case with the transplant team using the argument that I'm young, fit and otherwise healthy, i have responded to the treatment in a positive way.
You see, i just found out that I wasn't expected to survive three months from the moment the tumour was identified. I am meant to be pushing up the daisies right now, but my resolve has changed that destiny. I am the Living Dead!
By letting it happen without a fight...
You're already dead, You're already dead.
With your endless debates about wrong and right...
You're already dead, You're already dead.
Nothings going to change if you're not prepared to act,
There's no point complaining after the fact,
Content to be a number, branded X and neatly packed...
You're already dead, You're already dead.
Crass 1984
You're already dead, You're already dead.
With your endless debates about wrong and right...
You're already dead, You're already dead.
Nothings going to change if you're not prepared to act,
There's no point complaining after the fact,
Content to be a number, branded X and neatly packed...
You're already dead, You're already dead.
Crass 1984
So the prognosis is that I have already broken the expectations and with responding to treatment I can prolong my life for a period unknown. I've already broken the statistical norm but with chronic liver disease without a transplant there's not much mileage left in the tank.
With transplant who knows but there are people out there 25 years and going. The fight for a transplant means putting yourself in a fight with all the others who are applying. Survival of the strongest. So the impetus to get fitter and put myself up there is never greater.
I'm rewriting the book and i need to realign with all those examples of survivors to keep motivated. With this in my head, I taught class tonight. There's no surrender, there's no bucket of sand to stick my head into and there is no time for self pity.
With transplant who knows but there are people out there 25 years and going. The fight for a transplant means putting yourself in a fight with all the others who are applying. Survival of the strongest. So the impetus to get fitter and put myself up there is never greater.
I'm fighting for my f*cking life!
I'm rewriting the book and i need to realign with all those examples of survivors to keep motivated. With this in my head, I taught class tonight. There's no surrender, there's no bucket of sand to stick my head into and there is no time for self pity.
I'll enjoy the moments i have with the ones i love doing the things i love!
Monday, 14 September 2009
I don't hate Monday
It was slightly cooler than the gloves were designed for on my trip into the office this morning, but the thump of the Triumph's engine still put a smile on my face. With the harmony of Cerys Mathews on the iPod the Monday morning has started very well.
I haven't been too good this weekend. I come alive in the gym, but my liver was inflamed and I was uncomfortable in my movement. I didn't feel well enough to teach the Saturday morning class but was able to conduct the fighters session on Sunday. There's a group off to Brazil this week and I hope they have a great trip.
Male Breast Cancer Symptoms
The most common symptom for men with breast cancer is a lump in the breast area. This is nearly always painless. Other symptoms can include
I haven't been too good this weekend. I come alive in the gym, but my liver was inflamed and I was uncomfortable in my movement. I didn't feel well enough to teach the Saturday morning class but was able to conduct the fighters session on Sunday. There's a group off to Brazil this week and I hope they have a great trip.
Male Breast Cancer Symptoms
The most common symptom for men with breast cancer is a lump in the breast area. This is nearly always painless. Other symptoms can include- Oozing from the nipple (a discharge) that may be blood stained
- Swelling of the breast
- A sore (ulcer) in the skin of the breast
- A nipple that is pulled into the breast (called nipple retraction)
- Lumps under the arm
Sunday, 13 September 2009
Presumed Consent - Be a donor
Imogen Shillito of the British Liver Trust, a charity which helps the two million people with liver problems and represents doctors in the field, said: "At the moment 20 people die of liver disease for every one that receives a transplant. With so few organs available, sometimes there will be shortages for less common blood groups. That can cause life-threatening delay, and the British Liver Trust is very concerned about this shortage. We need to see changes of NHS organisation and public attitude to help boost the supply of organs and allow more patients to benefit from transplants." Read the article from The Observer here.
Around 65% of British people say they are prepared to donate an organ after their death – but only some 27% are registered donors. Around 1,000 people every year die for want of transplant surgery. While the number of registered donors has more than doubled in recent years, from 8 million in 2001 to 16.45 million today, the increase has not kept pace with lengthening waiting lists.
Britain has one of the lowest Doner rates in Europe, but one change – the move to "presumed consent" could change everything. Instead of relying on people to volunteer, registration would be automatic, but with an easy opt-out where families would still be entitled to prior consultation, and have a right to refuse.
Frank Deasy explains how a system in crisis could be transformed if more of us registered for organ donation
Like Frank I have a primary liver tumour and my liver is in a chronic state. I shall be asking on Thursday - at last - why I am not on the list yet or whether that will never happen. Imagine if i make the list and I die before a suitable donor is found?
There are 8,067 patients on the transplant waiting list: 6,974 need a new kidney, 380 need a liver, 279 need a kidney and pancreas, 240 need a lung or pair of lungs and 105 need a heart.
Around 65% of British people say they are prepared to donate an organ after their death – but only some 27% are registered donors. Around 1,000 people every year die for want of transplant surgery. While the number of registered donors has more than doubled in recent years, from 8 million in 2001 to 16.45 million today, the increase has not kept pace with lengthening waiting lists.
Britain has one of the lowest Doner rates in Europe, but one change – the move to "presumed consent" could change everything. Instead of relying on people to volunteer, registration would be automatic, but with an easy opt-out where families would still be entitled to prior consultation, and have a right to refuse.
Frank Deasy explains how a system in crisis could be transformed if more of us registered for organ donation
Like Frank I have a primary liver tumour and my liver is in a chronic state. I shall be asking on Thursday - at last - why I am not on the list yet or whether that will never happen. Imagine if i make the list and I die before a suitable donor is found?
There are 8,067 patients on the transplant waiting list: 6,974 need a new kidney, 380 need a liver, 279 need a kidney and pancreas, 240 need a lung or pair of lungs and 105 need a heart.
For more information or to sign up to the NHS Organ Donor Register, call the 24-hour donor helpline on 0300 1232323, or visit organdonation.nhs.uk
I rolled briefly on Thursday with Ben El Legendo Randall who's just reached the young age of 40! However I've been knocked out most of the weekend feeling sick and I can feel an inflamed liver.
"I've always believed that if you put in the work, the results will come. I don't do things half heartedly. Because I know if I do, then I can expect half-hearted results."
Wednesday, 9 September 2009
the wait
Fingers drumming on the table. I am not getting a response from the doctor about my prescription for Sorafanib as it runs out next week. I do get to see the Liver dr next week which at least will be the first face to face for a while
Meanwhile I look to 73 year old Guro Inosanto for inspiration and hope i see him soon:
Meanwhile I look to 73 year old Guro Inosanto for inspiration and hope i see him soon:
Friday, 4 September 2009
It's raining it's pouring..
80mm of rain yesterday recorded at the Airport! The Met Office said the area was being swamped by the remnants of Tropical Storm Danny, which caused dangerous conditions in America last week.
Aberdeen saw 0.75in (17mm) of rainfall overnight Wednesday to Thursday morning. The average rainfall for Aberdeen in September is 2.7in (68.3mm) – that’s 25% of the month’s rain in one night.
Hopefully this means the rest of September will be fantastic!
The deluge was on a day when i had a van to take the hedge cuttings to the recycling depot. Three full vans later, i was tired and soaked right through. I have one more trip today.
In lower lying ground around Aberdeen, flooding has closed roads and seen cars abandoned.
John Maitland, pictured below, came around and finished off putting up the new doors and what a difference it makes to the house!
Think I'll get myself this automatic garage opener:
Aberdeen saw 0.75in (17mm) of rainfall overnight Wednesday to Thursday morning. The average rainfall for Aberdeen in September is 2.7in (68.3mm) – that’s 25% of the month’s rain in one night.
Hopefully this means the rest of September will be fantastic!
The deluge was on a day when i had a van to take the hedge cuttings to the recycling depot. Three full vans later, i was tired and soaked right through. I have one more trip today.
In lower lying ground around Aberdeen, flooding has closed roads and seen cars abandoned.
John Maitland, pictured below, came around and finished off putting up the new doors and what a difference it makes to the house!
Think I'll get myself this automatic garage opener:
Wednesday, 2 September 2009
A man can do only what he can do
I'm dropping weight again, well not dropping but keeping it constant more. It's down to the change in my timing of the tablets.
It can affect my mood at times. There are depths that i am yet to go in despair or depression. I simply won't allow myself to wallow there in self pity or allow depression to take a grip. These are the building blocks to success that I will revel in.
I was in London recently on day trip, watching the mighty Chelsea play, and afterwards I was completely exhausted. Standing talking to friends on a sunny afternoon outside a pub post match and I start cramping all over my body. Head to toe, I was in agony. I stumbled to the tube out to the airport, happy to stretch out on the seats to relieve the pain. Great day though!
I'm feeling better during the days but have to get more sleep to make sure I keep the strength up. I'm good in concentrated spurts, as long as i get my sleep in. I see the Liver doctor in a week and a bit which I can't wait to get back to an interface with consultants again.
Redecoration of the house is going well, with new internal doors going up tonight and tomorrow.
"A man can do only what he can do. But if he does that each day he can sleep at night and do it again the next day."
Tuesday, 1 September 2009
Open Up - Leftfield
Leftfields' Open Up couldn't have predicted this when Lydon's lyric screeched out from the stereo! I hope friends are safe.
A few have asked me about Mythanwy and what it means. I suggest you look at Under Milk Wood by Dylan Thomas. In the meantime, i have decided that Mythanwy and I are ill suited at this moment and am looking at something different since the Bonneville has sold its whares elsewhere. A MZ Mastiff is my next option allthough a Triumph Scrambler would also attract my attention were it not so expensive. It has to be a different ride from my ST1050.
"Ninety-nine percent of the failures come from people who have the habit of making excuses."
I've been tired and have been sleeping a lot more than usual, to the extent that I am feeling pretty good today. Had a great blast coming to work, so am sitting feeling good.
Krishnamurti: Humility cannot be pursued, and that is the beauty of humility.
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