Hey
Someone gave me a gift of the two words " Leukaemia" and " Leukemia".
The Big Word Project was set up by Paddy Donnelly and Lee Munroe, two Masters students from Northern Ireland, who are exploring what different words mean to different people. The project allows people to purchase a word from their list to represent their site. So my blog now represents the words Leukaemia / Leukemia in their list and when people click on it they will be taken to my site. The project is aimed at changing definitions and creating a new tapestry of words, meaning altogether different things.
Just click on http://www.thebigwordproject.com/ if you don't believe me!!!
So there you go!!!
Bye for now
Tuesday, 22 September 2009
PLATELET PARTY!
Hi everyone!!
I am thinking of throwing a " Platelet Party".... A what, I heard you say? Yes, a Platelet Party to celebrate my excellent blood counts at my 6 month check up last week. I love my Platelets and look after them as best I can. After all, they are what keep me in the land of living. The type of leukaemia that I was diagnosed with affected my Platelets. As a result all eyes are always on the Platelet count when I get the blood check done!
Of course, there are so many different types of leukaemia that not everyone is in the same boat as me! Do you know what Platelets do? When I was diagnosed with leukaemia I had lower than normal platelet counts, way lower... believe me. This led to extensive bleeding. Although in fairness, I didn't look like something out of a horror movie with blood pouring out my body! No, with me me it just looked like I had been in about ten rounds with a World Champion Boxer.... I had tiny bruises on my arms, hands, chest, legs and feet! I also had a few big whoppers of bruises too.... quite impressive I have to say....
I have a vision of lots of people dressed up as gigantic Platelets at my Platelet Party but didn't really know exactly what they looked like! I know that sounds crazy but it would be a fancy dress party with a difference! I always like to see what things look like - it takes the fear out of it - don't you think? We don't have to be afraid of our blood - no we need to find it more about how it works and what it looks like!
Platelets help to stop bleeding and help to heal all of our wounds! Thats it, plain & simple.
Bye for now
I am thinking of throwing a " Platelet Party".... A what, I heard you say? Yes, a Platelet Party to celebrate my excellent blood counts at my 6 month check up last week. I love my Platelets and look after them as best I can. After all, they are what keep me in the land of living. The type of leukaemia that I was diagnosed with affected my Platelets. As a result all eyes are always on the Platelet count when I get the blood check done!
Of course, there are so many different types of leukaemia that not everyone is in the same boat as me! Do you know what Platelets do? When I was diagnosed with leukaemia I had lower than normal platelet counts, way lower... believe me. This led to extensive bleeding. Although in fairness, I didn't look like something out of a horror movie with blood pouring out my body! No, with me me it just looked like I had been in about ten rounds with a World Champion Boxer.... I had tiny bruises on my arms, hands, chest, legs and feet! I also had a few big whoppers of bruises too.... quite impressive I have to say....
I have a vision of lots of people dressed up as gigantic Platelets at my Platelet Party but didn't really know exactly what they looked like! I know that sounds crazy but it would be a fancy dress party with a difference! I always like to see what things look like - it takes the fear out of it - don't you think? We don't have to be afraid of our blood - no we need to find it more about how it works and what it looks like!
Platelets help to stop bleeding and help to heal all of our wounds! Thats it, plain & simple.
Bye for now
Monday, 14 September 2009
HOPE FLOATS ON THE WINGS OF A CRANE
Hello everyone.
I recently read the story of Sadako and the Thousand Paper Cranes, a non- fiction children's book written by American author Eleanor Coerr and first published in 1977.......... I followed this up with some research on the internet and have included the links and source of information at the end of this article. Please read on....
Sadako Sasaki, the daughter of Fujiko and Shigeo was diagnosed with the Atomic Bomb Disease when she was eleven years old. The atomic bomb was dropped on Hiroshima in 1945 when Sadako was two years old. Her Grandmother had died during the War and she did not remember much about but took part in the Peace Celebrations in Hiroshima. No-one ever told Sadako what disease she had. She went into the Hiroshima Red Cross Hospital on 21st February, 1955, where she was often visited by the “ Bamboos”, her classmates from Elementary School. One day Sadako’s best friend Chizuko came to visit her and told Sadako a story to cheer her up. The story was about a bird, a crane which was supposed to live for 1,000 years. Chizuko told Sadako that the story said that anyone who was ill should make 1,000 paper cranes and the gods would grant them a wish.
Sadako hoped that the gods would grant her wish to get well so that she could run again. A couple of months earlier, in November 1954, she had been preparing for a big race when she became dizzy and fell down. She had no idea that the atomic bomb disease was tightening its grip on her small little body. The lumps which had developed behind her ears, on her neck and her face had got gradually got bigger as if she had the mumps. Soon after the New Year, she went to a nearby clinic to get more tests carried out. By the end of January, 1955 she had developed bruises on her left leg.
In Japan the crane is known as 'the bird of happiness' and is often drawn with pine trees, tortoises, stones and bamboo, which are all symbols of long life. Cranes are also associated with good fortune and prosperity so they are often painted with the sun, which is a symbol of social ambition. Inevitably the crane's reputation for long life and prosperity became a symbol of good health, and origami cranes became a popular gift for those who were ill.
Chizuko carefully showed Sadko how to make a crane using origami, the ancient Japanese art of paper folding, and Sadako set to work. All her visitors brought brightly coloured pieces of paper for her to make the cranes as paper was costly in those days. She made do with wrappings for medicine and went around to other patients’ rooms and asked for the gift wrap on their get well presents. The arrival of a bunch of cellophane paper cranes sent from Nagoya launched a flurry of crane folding in the hospital. Sadako's brother, Masashiro hung the finished ones from the ceiling of her room in the hospital Besides brightening sickrooms with a rainbow of colours, folding cranes was a pastime welcomed by patients required to stay quietly in their beds. By the time she finished , Sadako's cranes were smaller in size. They were so small she used a needle to shape the folds, intently folding one crane after another as if it were a prayer.
Sadako Sasaki entrusted all her hope to the paper cranes and into each crane she folded her desire to live.
On 6th August, 1955 , Sadako was allowed to leave the hospital to attend the Peace Memorial Ceremony with her family. On the way to the park, however, Sadako gums starting bleeding and she felt ill. She had to return to the hospital right away, without attending the ceremony. Toward the end of September, Sadako's condition gradually deteriorated until she could no longer walk unassisted. One night Sadako told her mother, "You'd better hurry home so my little brother and sister won't be sad." But her eyes welled with tears as her mother started to leave. "How can I leave you when you're crying?" asked Mrs. Sasaki, weeping herself. Mrs. Sasaki decided not to leave her alone at night any more. Starting the next day, she began to spend the nights at the hospital. Sadly, the story goes that Sadako only managed to complete 644 paper cranes before dying on the morning of the 25th October, 1955, at the age of 12, surrounded by her family. The remaining 356 cranes were folded by her school friends so that she could be buried with 1,000 paper cranes.
When Sadako's bed linen was being changed after her death, a piece of paper containing figures from Sadako's blood tests was found. Sadako seemed to understand that she had a disease of the blood. The note of the blood test results ended on the 4th of July. It is not known whether or not her record-keeping continued after that date. One of her classmates remarked “ When we went to see her, it was with the idea of cheering her up, making her happy. When we learned that she had kept a record of her blood test results, we were shocked. If she knew she was going to die all that time, what was the point of all our cheerful talk?”
Sadako's parents were devastated, heartbroken and overwhelmed with emotion when Sadako died. She had been enrolled as a first year in High School but was never to attend. After her death, Sadako’s classmates, formed the Unity Club and came up with the idea of building a statue to console the spirits of Sadako and all the other children who died from the atomic bombing. On 12th November, 1955 they attended the Conference of the National Junior High School’s Principals’ Association in the Hiroshima City Auditorium and handed out leaflets asking for support for building a monument. It stated that the call came from: Hiroshima Municipal Nobori – cho Junior High School 1st Year Students . All the classmates of the late Sadako Sasaki.
After she died, the Children’s Peace Monument was built close to the spot where the atomic bomb was dropped. Books by Karl Bruckner, Eleanor Coerr and others depict the young girl who put her hopes in paper cranes and these have spread her story around the world. Sadako made a powerful statement concerning the sanctity of life. She has become associated with “ peace” which is a common and eternal human theme. Sadako's friends were inspired by her courage and determination. They collected the letters that she had written and published them in a book called Kokeshi. In 1958 the memorial was unveiled. It is a statue of Sadako holding a golden crane and is in the Hiroshima Peace Park, in Hiroshima, Japan. Children from all over the world still send folded paper cranes to be placed beneath Sadako’s statue. In so doing, they make the same wish which is engraved on the base of the statue:
"This is our cry, This is our prayer, Peace in the world".
Every year on Peace Day people from all over the world fold paper cranes and send them to Sadako's statue in Hiroshima. The Peace Monument is also known as the Tower of a Thousand Cranes.
Visitors to Peace Memorial Park see brightly colored paper cranes everywhere. This connection between paper cranes and peace can be traced back to Sadako Sasaki. The Children's Peace Monument that stands in Peace Park was built with funds donated from all over Japan. Later, this story spread to the world, and now, approximately 10 million cranes are offered each year before the Children's Peace Monument. Anyone may place paper cranes to the Children's Peace Monument in Peace Memorial Park. However, if you are unable to visit the park, the Peace Promotion Division of the City of Hiroshima will be happy to offer your cranes to the monument on your behalf. Your name and message for peace is entered into the Paper Crane Database just as Sadako wanted.
A special exhibition entitled “ Sadako and the Paper Cranes – Message of Life Transcending Time was on display at the Hiroshima Peace Memorial Museum from July to December, 2001.
It recalls how the story of Sadako Sasaki began to spread through the world as "the story of Sadako and the paper cranes. " This began when Austrian journalist Robert Junk visited Hiroshima in 1956 and heard the story. Junk told the story to the world in his book Light in the This it was said helped turn Sadako, a girl from Hiroshima who was exposed to the atomic bomb, into the immortal Sadako. The Peace Division of the City of Hiroshima summed it up well:
“ Sadako transcended barriers of historical time, language, ethnicity, and nationality, Sadako goes out from Hiroshima to the world, where she now lives in people's hearts.”
www.bbc.co.uk/dna/h2g2/A302202 accessed 28/01/09
www.sadako-jp.com/sub6.html accessed 02/02/09.
Bye for now. .................
I recently read the story of Sadako and the Thousand Paper Cranes, a non- fiction children's book written by American author Eleanor Coerr and first published in 1977.......... I followed this up with some research on the internet and have included the links and source of information at the end of this article. Please read on....
Sadako Sasaki, the daughter of Fujiko and Shigeo was diagnosed with the Atomic Bomb Disease when she was eleven years old. The atomic bomb was dropped on Hiroshima in 1945 when Sadako was two years old. Her Grandmother had died during the War and she did not remember much about but took part in the Peace Celebrations in Hiroshima. No-one ever told Sadako what disease she had. She went into the Hiroshima Red Cross Hospital on 21st February, 1955, where she was often visited by the “ Bamboos”, her classmates from Elementary School. One day Sadako’s best friend Chizuko came to visit her and told Sadako a story to cheer her up. The story was about a bird, a crane which was supposed to live for 1,000 years. Chizuko told Sadako that the story said that anyone who was ill should make 1,000 paper cranes and the gods would grant them a wish.
Sadako hoped that the gods would grant her wish to get well so that she could run again. A couple of months earlier, in November 1954, she had been preparing for a big race when she became dizzy and fell down. She had no idea that the atomic bomb disease was tightening its grip on her small little body. The lumps which had developed behind her ears, on her neck and her face had got gradually got bigger as if she had the mumps. Soon after the New Year, she went to a nearby clinic to get more tests carried out. By the end of January, 1955 she had developed bruises on her left leg.
In Japan the crane is known as 'the bird of happiness' and is often drawn with pine trees, tortoises, stones and bamboo, which are all symbols of long life. Cranes are also associated with good fortune and prosperity so they are often painted with the sun, which is a symbol of social ambition. Inevitably the crane's reputation for long life and prosperity became a symbol of good health, and origami cranes became a popular gift for those who were ill.
Chizuko carefully showed Sadko how to make a crane using origami, the ancient Japanese art of paper folding, and Sadako set to work. All her visitors brought brightly coloured pieces of paper for her to make the cranes as paper was costly in those days. She made do with wrappings for medicine and went around to other patients’ rooms and asked for the gift wrap on their get well presents. The arrival of a bunch of cellophane paper cranes sent from Nagoya launched a flurry of crane folding in the hospital. Sadako's brother, Masashiro hung the finished ones from the ceiling of her room in the hospital Besides brightening sickrooms with a rainbow of colours, folding cranes was a pastime welcomed by patients required to stay quietly in their beds. By the time she finished , Sadako's cranes were smaller in size. They were so small she used a needle to shape the folds, intently folding one crane after another as if it were a prayer.
Sadako Sasaki entrusted all her hope to the paper cranes and into each crane she folded her desire to live.
On 6th August, 1955 , Sadako was allowed to leave the hospital to attend the Peace Memorial Ceremony with her family. On the way to the park, however, Sadako gums starting bleeding and she felt ill. She had to return to the hospital right away, without attending the ceremony. Toward the end of September, Sadako's condition gradually deteriorated until she could no longer walk unassisted. One night Sadako told her mother, "You'd better hurry home so my little brother and sister won't be sad." But her eyes welled with tears as her mother started to leave. "How can I leave you when you're crying?" asked Mrs. Sasaki, weeping herself. Mrs. Sasaki decided not to leave her alone at night any more. Starting the next day, she began to spend the nights at the hospital. Sadly, the story goes that Sadako only managed to complete 644 paper cranes before dying on the morning of the 25th October, 1955, at the age of 12, surrounded by her family. The remaining 356 cranes were folded by her school friends so that she could be buried with 1,000 paper cranes.
When Sadako's bed linen was being changed after her death, a piece of paper containing figures from Sadako's blood tests was found. Sadako seemed to understand that she had a disease of the blood. The note of the blood test results ended on the 4th of July. It is not known whether or not her record-keeping continued after that date. One of her classmates remarked “ When we went to see her, it was with the idea of cheering her up, making her happy. When we learned that she had kept a record of her blood test results, we were shocked. If she knew she was going to die all that time, what was the point of all our cheerful talk?”
Sadako's parents were devastated, heartbroken and overwhelmed with emotion when Sadako died. She had been enrolled as a first year in High School but was never to attend. After her death, Sadako’s classmates, formed the Unity Club and came up with the idea of building a statue to console the spirits of Sadako and all the other children who died from the atomic bombing. On 12th November, 1955 they attended the Conference of the National Junior High School’s Principals’ Association in the Hiroshima City Auditorium and handed out leaflets asking for support for building a monument. It stated that the call came from: Hiroshima Municipal Nobori – cho Junior High School 1st Year Students . All the classmates of the late Sadako Sasaki.
After she died, the Children’s Peace Monument was built close to the spot where the atomic bomb was dropped. Books by Karl Bruckner, Eleanor Coerr and others depict the young girl who put her hopes in paper cranes and these have spread her story around the world. Sadako made a powerful statement concerning the sanctity of life. She has become associated with “ peace” which is a common and eternal human theme. Sadako's friends were inspired by her courage and determination. They collected the letters that she had written and published them in a book called Kokeshi. In 1958 the memorial was unveiled. It is a statue of Sadako holding a golden crane and is in the Hiroshima Peace Park, in Hiroshima, Japan. Children from all over the world still send folded paper cranes to be placed beneath Sadako’s statue. In so doing, they make the same wish which is engraved on the base of the statue:
"This is our cry, This is our prayer, Peace in the world".
Every year on Peace Day people from all over the world fold paper cranes and send them to Sadako's statue in Hiroshima. The Peace Monument is also known as the Tower of a Thousand Cranes.
Visitors to Peace Memorial Park see brightly colored paper cranes everywhere. This connection between paper cranes and peace can be traced back to Sadako Sasaki. The Children's Peace Monument that stands in Peace Park was built with funds donated from all over Japan. Later, this story spread to the world, and now, approximately 10 million cranes are offered each year before the Children's Peace Monument. Anyone may place paper cranes to the Children's Peace Monument in Peace Memorial Park. However, if you are unable to visit the park, the Peace Promotion Division of the City of Hiroshima will be happy to offer your cranes to the monument on your behalf. Your name and message for peace is entered into the Paper Crane Database just as Sadako wanted.
A special exhibition entitled “ Sadako and the Paper Cranes – Message of Life Transcending Time was on display at the Hiroshima Peace Memorial Museum from July to December, 2001.
It recalls how the story of Sadako Sasaki began to spread through the world as "the story of Sadako and the paper cranes. " This began when Austrian journalist Robert Junk visited Hiroshima in 1956 and heard the story. Junk told the story to the world in his book Light in the This it was said helped turn Sadako, a girl from Hiroshima who was exposed to the atomic bomb, into the immortal Sadako. The Peace Division of the City of Hiroshima summed it up well:
“ Sadako transcended barriers of historical time, language, ethnicity, and nationality, Sadako goes out from Hiroshima to the world, where she now lives in people's hearts.”
www.bbc.co.uk/dna/h2g2/A302202 accessed 28/01/09
www.sadako-jp.com/sub6.html accessed 02/02/09.
Bye for now. .................
Friday, 11 September 2009
Travel Insurance - Don't Worry Be Happy!
Hi Guys,
Back to blogosphere with a bang. Every time we turn on the telly we are faced with more doom and gloom about the credit crunch! Can anything put an end to our misery? Mmmmmm.... a holiday of course... ..... just think about that walk along the beach, someone to grant your every wish,stunning views, magical moments, candelit dinners, sunglasses and smiles!
Then think about travel insurance................ Did I take that smile off your face? We all know that obtaining travel insurance before we head off on our holidays can be difficult. For people affected by cancer it can become a huge problem. I was diagnosed with Acute Myeloid Leukaemia in November, 2004 and was disappointed to discover that my old reliable insurance company now excludes cover for Acute Myeloid Leukaemia. Shocking!!! No, not really, I discovered that several companies have a cancer related exclusion which means that I am covered for everything except medical treatment related to my condition. Then of course, if I am unfortunate to get sick from anything else eg. food poisoning, malaria, heart attack .....I will have to prove that the illness which I developed is not related to my pre- existing medical condition.
It is a huge personal risk to travel without any form of cover. It might seem the easy option - take out a basic policy ( approx £ 20.00 for a single trip in Europe), hop on the plane and hope for the best! Probably not the wisest thing to do though? What happens if you get sick on holidays or need to be flown home? But what do you do if some insurance companies don't want to know ... what if they won't even provide a quotation......?
When I was looking for a quotation, the Insurance Companies usually went through a few standard questions about my pre- existing medical condition (i) what date was I diagnosed (ii) did I go into remission (iii) have I been an inpatient in the last six months (iv) have I got a terminal prognosis..... It was frustrating when I provided all the information, had gone through all the hoops and was then told that acute myeloid leukaemia is simply not covered at all. Why, I asked - when it is almost five years since diagnosis?
It is just another problem that the recession has created. Insurance markets are setting the premiums higher or they are reducing the availability of insurance to those affected by cancer....even five years after diagnosis.
However, all hope is not lost and there are some specialist companies still providing cover for acute myeloid leukamia patients... at a price of course. It seems to be that the average price for a single trip policy for travel within Europe is approximately £ 20 - £ 30 ..... that is basic cover... ie., lost luggage, lost passport etc., In order to get covered for a pre- existing medical condition it is necessary to go through medical screening where you will be asked a series of standard questions like those mentioned above. Hopefully at the end of the conversation you will be provided with a quotation..... I was quoted £ 52.77 which in the big picture is not too bad and at the end of the day is peace of mind when you are on holidays. So the total cost of travel insurance ( to include cover for my AML) was £ 72.77. The Insurers would not give me a quotation for the annual multi- trip policy so it looks like I will have to go through the whole process again the next time I am planning some holiday adventures!
Back to blogosphere with a bang. Every time we turn on the telly we are faced with more doom and gloom about the credit crunch! Can anything put an end to our misery? Mmmmmm.... a holiday of course... ..... just think about that walk along the beach, someone to grant your every wish,stunning views, magical moments, candelit dinners, sunglasses and smiles!
Then think about travel insurance................ Did I take that smile off your face? We all know that obtaining travel insurance before we head off on our holidays can be difficult. For people affected by cancer it can become a huge problem. I was diagnosed with Acute Myeloid Leukaemia in November, 2004 and was disappointed to discover that my old reliable insurance company now excludes cover for Acute Myeloid Leukaemia. Shocking!!! No, not really, I discovered that several companies have a cancer related exclusion which means that I am covered for everything except medical treatment related to my condition. Then of course, if I am unfortunate to get sick from anything else eg. food poisoning, malaria, heart attack .....I will have to prove that the illness which I developed is not related to my pre- existing medical condition.
It is a huge personal risk to travel without any form of cover. It might seem the easy option - take out a basic policy ( approx £ 20.00 for a single trip in Europe), hop on the plane and hope for the best! Probably not the wisest thing to do though? What happens if you get sick on holidays or need to be flown home? But what do you do if some insurance companies don't want to know ... what if they won't even provide a quotation......?
When I was looking for a quotation, the Insurance Companies usually went through a few standard questions about my pre- existing medical condition (i) what date was I diagnosed (ii) did I go into remission (iii) have I been an inpatient in the last six months (iv) have I got a terminal prognosis..... It was frustrating when I provided all the information, had gone through all the hoops and was then told that acute myeloid leukaemia is simply not covered at all. Why, I asked - when it is almost five years since diagnosis?
It is just another problem that the recession has created. Insurance markets are setting the premiums higher or they are reducing the availability of insurance to those affected by cancer....even five years after diagnosis.
However, all hope is not lost and there are some specialist companies still providing cover for acute myeloid leukamia patients... at a price of course. It seems to be that the average price for a single trip policy for travel within Europe is approximately £ 20 - £ 30 ..... that is basic cover... ie., lost luggage, lost passport etc., In order to get covered for a pre- existing medical condition it is necessary to go through medical screening where you will be asked a series of standard questions like those mentioned above. Hopefully at the end of the conversation you will be provided with a quotation..... I was quoted £ 52.77 which in the big picture is not too bad and at the end of the day is peace of mind when you are on holidays. So the total cost of travel insurance ( to include cover for my AML) was £ 72.77. The Insurers would not give me a quotation for the annual multi- trip policy so it looks like I will have to go through the whole process again the next time I am planning some holiday adventures!
Wednesday, 18 June 2008
Human Issues on the Political Radar!
The American Cancer Society (ACS) state that cancer is not just a medical issue, it is a political issue as well. From the local City Council to the US Congress the American Cancer Society is engaged with elected and appointed officials to ensure that cancer remains a top local, state and national priority. The American Cancer Society Cancer Action Network which is the non-profit, non-partisan sister advocacy organisation of the ACS is dedicated to eliminating cancer as a major public health problem through voter education and issue campaigns aimed at influencing candidates and lawmakers to support laws and policies that will help people fight cancer. A close eye is being kept on where the Presidential Candidates stand on important cancer research, treatment and prevention issues.
This morning, BBC Breakfast Television presenters focused their attentions on a breast cancer patient who has been successful in her quest to co-fund her treatment with the NHS and so have access to expensive treatment that is not available to all patients. This has led to a debate about the risks involved in having a two-tiered system for breast cancer patients.... Again, human issues on the political radar!
On Monday evening I heard on RTE Radio 1 News that a new pilot project has been launced by the Irish Cancer Society aimed at helping patients who are unable to travel independently for treatment. It is called the "Care to Drive" campaign and its catchment areas range from Gorey in Wexford to Ballsbridge in Dublin. Basically, volunteer drivers will transport patients who cannot travel alone due to financial difficulties or location problems. This has been developed to help deal with the problems associated with the centralisation of services.
Hopefully Northern Ireland will follow this pilot project and we will see buses and taxis ferrying people to Belfast and Altnagelvin for check ups and treatment sooner rather than later.......
This morning, BBC Breakfast Television presenters focused their attentions on a breast cancer patient who has been successful in her quest to co-fund her treatment with the NHS and so have access to expensive treatment that is not available to all patients. This has led to a debate about the risks involved in having a two-tiered system for breast cancer patients.... Again, human issues on the political radar!
On Monday evening I heard on RTE Radio 1 News that a new pilot project has been launced by the Irish Cancer Society aimed at helping patients who are unable to travel independently for treatment. It is called the "Care to Drive" campaign and its catchment areas range from Gorey in Wexford to Ballsbridge in Dublin. Basically, volunteer drivers will transport patients who cannot travel alone due to financial difficulties or location problems. This has been developed to help deal with the problems associated with the centralisation of services.
Hopefully Northern Ireland will follow this pilot project and we will see buses and taxis ferrying people to Belfast and Altnagelvin for check ups and treatment sooner rather than later.......
Monday, 16 June 2008
Island Life!
So how is life in the blogosphere! I have been very busy working and generally having a good time lately! We visited a beautiful island located off West Donegal at the weekend! We took our car over on the ferry from Burtonport to Árainn Mhór and enjoyed the culture, wildlife, quiet country roads and spectacular scenery. The weather was gorgeous and the company was pretty good too! We visited a little Church and I noticed a poster about Cancer Awareness pinned up on the noticeboard. I couldn't help but wonder how an islander diagnosed with cancer could manage the trips over and back on the ferry when they were ill or receiving treatment. I made a promise to myself that I would try and do a little research on cancer services and support on Árainn Mhór as I put on the sunglasses and positioned myself up on the rocks on the hills looking out over the Atlantic Ocean. It is truly well worth a visit this summer!
I managed to do a little bit of research but as it is slightly out of date I am hungry for more information! In the Official Reports for the Dáil Debates on 27/04/ 99 the then Minister for Health And Children Mr Cowen stated the following:
" Our inhabited offshore islands lie within the areas of responsibility of three health boards and it is the statutory responsibility of these boards to provide health services to the population. I have been advised by the North Western Health Board that is has established a steering committee which is in discussion with island representatives to agree an action plan for service enhancements... At present the Board is considering a proposal from the Community Group on Aranmore Island for a small nursing unit on the island."
In the Official Reports for the Dáil Debates on 8th February, 2001 a Mr Mc Ginley quoted from the report of Prof Niall O' Higgins in which he recommended the creation of a number of specialised breast cancer treatment centres throughout the country:
" There is serious concern in County Donegal about the rumoured downgrading of the breast cancer clinic in Letterkenny General Hospital".... If patients had to travel long distances to Galway, Sligo or Dublin from places such as Buncrana, Fanad, Gweedore, Glencolmcille or the islands, the inconvenience would be so prohibitive that some women may delay seeking advice and diagnosis and leave it too late for effective treatment.... The Islanders especially those living on Tory, AranMore, Inishbofin and Inishfree, have the extra worry of their journey being weather dependent for at least six months of the year. ... When one's life is under threat from this dreadful disease, not only is the best medical care available needed but also the support of family and friends and not the trauma of isolation from home, family and community. Donegal women want and are entitled to the option of staying close to their families and friends....."
To be continued .....
Next is another blast from the past!
I managed to do a little bit of research but as it is slightly out of date I am hungry for more information! In the Official Reports for the Dáil Debates on 27/04/ 99 the then Minister for Health And Children Mr Cowen stated the following:
" Our inhabited offshore islands lie within the areas of responsibility of three health boards and it is the statutory responsibility of these boards to provide health services to the population. I have been advised by the North Western Health Board that is has established a steering committee which is in discussion with island representatives to agree an action plan for service enhancements... At present the Board is considering a proposal from the Community Group on Aranmore Island for a small nursing unit on the island."
In the Official Reports for the Dáil Debates on 8th February, 2001 a Mr Mc Ginley quoted from the report of Prof Niall O' Higgins in which he recommended the creation of a number of specialised breast cancer treatment centres throughout the country:
" There is serious concern in County Donegal about the rumoured downgrading of the breast cancer clinic in Letterkenny General Hospital".... If patients had to travel long distances to Galway, Sligo or Dublin from places such as Buncrana, Fanad, Gweedore, Glencolmcille or the islands, the inconvenience would be so prohibitive that some women may delay seeking advice and diagnosis and leave it too late for effective treatment.... The Islanders especially those living on Tory, AranMore, Inishbofin and Inishfree, have the extra worry of their journey being weather dependent for at least six months of the year. ... When one's life is under threat from this dreadful disease, not only is the best medical care available needed but also the support of family and friends and not the trauma of isolation from home, family and community. Donegal women want and are entitled to the option of staying close to their families and friends....."
To be continued .....
Next is another blast from the past!
Monday, 2 June 2008
Start Spreading the News!
I am now back from my trip to New York. We arrived just in time for the Memorial Day Sales and we shopped until we dropped in Macys!
It seems like everyone is spreading the news about cancer and raising awareness about the disease in New York. There are cancer prevention messages flashed across t- shirts, documentaries in diners, posters, tv programmes in hotel lifts, magazines, newspapers everywhere. We have got a lot of work to do in Ireland to catch up with the all out community effort that I witnessed in the USA.
The grand finale of American Idol was shown on May 21st and the winner was a Missouri rocker called David Cook. His victory was bittersweet, as his brother Adam, 36 has been battling brain cancer but David was delighted that Adam could join him onstage after his win. David wept openly as he spoke about his brother's stuggle with cancer during the competition and one couldn't help but think that a cure for his brother would have been top of his list rather than a win on American Idol.
Patrick Swayze also spent Memorial Day weekend engaging in what the Americans call PDO - Public Display of Optimism. He cheered on the Los Angeles Lakers at the LA's Staples Center on May 23rd. Swayze is responding well to pancreatic cancer treatment and is reacting positively to chemotherapy treatment. It is all over the news that he is a tough dude that doesn't let anything get him down.
As we sat on a diner on 7th Avenue I noticed a programme about how people were coming together as a community in New York to find a cure for all women diagnosed with breast cancer. The programme, which was subtitled, gave the clear message to viewers firstly about the importance of early detection of breast cancer and secondly information about diagnosis, prevention and treatment. Wow, I thought, wouldn't it be great if we could get Irish cafes and bars to roll out programmes at lunchtime providing information like that! Women were shown how to carry out self- examinations and checks and look for warning signs & symptoms. Triple negative breast cancer disproportionately affects African-American women than white American women. I have never heard of triple negative breast cancer in Ireland but it was certainly in the news over there.
In our hotel, the tv screen in the elevator was broadcasting all sorts of information for hotel guests but also included a health slot and we again received further information about cancer prevention, early detection and self examination checks!
I know there is the Fashion Targets Breast Cancer ( FTBC) Campaign in the UK and we are all familiar with the t- shirts, but there is so much more that we can do. The actress Anna Friel is now making a name for herself in the States as she has got a new role in the US comedy Pushing Daisies. She is involved with FTBC Breakthrough Breast Cancer and the message she is giving is early detection is the way forward and people must attend their screening appointments. FTBC's vision is a future free from the fear of breast cancer.
So as FTBC say - target a cause close to your heart!
Now I must go back to managing my jetlag & reorganising my wardrobe!
Next on the blog is another installment of blast from the past & some piccies from New York!
.........................................
It seems like everyone is spreading the news about cancer and raising awareness about the disease in New York. There are cancer prevention messages flashed across t- shirts, documentaries in diners, posters, tv programmes in hotel lifts, magazines, newspapers everywhere. We have got a lot of work to do in Ireland to catch up with the all out community effort that I witnessed in the USA.
The grand finale of American Idol was shown on May 21st and the winner was a Missouri rocker called David Cook. His victory was bittersweet, as his brother Adam, 36 has been battling brain cancer but David was delighted that Adam could join him onstage after his win. David wept openly as he spoke about his brother's stuggle with cancer during the competition and one couldn't help but think that a cure for his brother would have been top of his list rather than a win on American Idol.
Patrick Swayze also spent Memorial Day weekend engaging in what the Americans call PDO - Public Display of Optimism. He cheered on the Los Angeles Lakers at the LA's Staples Center on May 23rd. Swayze is responding well to pancreatic cancer treatment and is reacting positively to chemotherapy treatment. It is all over the news that he is a tough dude that doesn't let anything get him down.
As we sat on a diner on 7th Avenue I noticed a programme about how people were coming together as a community in New York to find a cure for all women diagnosed with breast cancer. The programme, which was subtitled, gave the clear message to viewers firstly about the importance of early detection of breast cancer and secondly information about diagnosis, prevention and treatment. Wow, I thought, wouldn't it be great if we could get Irish cafes and bars to roll out programmes at lunchtime providing information like that! Women were shown how to carry out self- examinations and checks and look for warning signs & symptoms. Triple negative breast cancer disproportionately affects African-American women than white American women. I have never heard of triple negative breast cancer in Ireland but it was certainly in the news over there.
In our hotel, the tv screen in the elevator was broadcasting all sorts of information for hotel guests but also included a health slot and we again received further information about cancer prevention, early detection and self examination checks!
I know there is the Fashion Targets Breast Cancer ( FTBC) Campaign in the UK and we are all familiar with the t- shirts, but there is so much more that we can do. The actress Anna Friel is now making a name for herself in the States as she has got a new role in the US comedy Pushing Daisies. She is involved with FTBC Breakthrough Breast Cancer and the message she is giving is early detection is the way forward and people must attend their screening appointments. FTBC's vision is a future free from the fear of breast cancer.
So as FTBC say - target a cause close to your heart!
Now I must go back to managing my jetlag & reorganising my wardrobe!
Next on the blog is another installment of blast from the past & some piccies from New York!
.........................................
Wednesday, 14 May 2008
Post Chemotherapy Fatigue is a way of life ....... but I have never been as active!
Being sick during treatment was for me a temporary way of life. Every day spent in hospital was a day closer to getting home! The management of post chemotherapy fatigue is a way of life............but I have never been as active!
I am not sure if the fatigue that I experience now is strictly speaking "post chemotherapy fatigue". The medical experts might just label it "fatigue", but one thing is clear, I would not have it if I hadn't had the treatment.
The fatigue during treatment was debilitating to the extent that I spent most of the time lying in bed looking at ceilings. The fatigue I have now is a manageable condition.
Every stage of recovery has its own hurdles to overcome, and the hurdles are not the same for everyone. People experience different things at different times. In my opinion, it is virtually impossible for someone who hasn't had leukaemia to understand the long term impact of the disease and the treatment.
When you look well, people can assume that you are 100% physically fit and 100% fully recovered. I have read many articles and leaflets about post chemotherapy fatigue. Whilst they all touch on parts of the problem, I have yet to find something that deals with the matter in its entirety.
The one thing that the experts are agreed on is that there is no cure for post chemotherapy fatigue. That is the crux of the issue, as it affects so many people in so many different ways. All I can talk about is my own fatigue.
The fatigue I suffer from is not simply a physical tiredness. Apparently the Americans call it chemo brain and it usually manifests itself as a fuzzy head, headaches and a desire to be alone to chill out!
Fortunately, it usually passes after an hour's rest or so and is something that can be managed quite easily with a little bit of forward planning. Some people also speak of difficulties concentrating and irritability when the fatigue kicks in.
The good news in my case is that the fatigue is a manageable condition - I rule it rather than letting it rule me. It seems that periods of proper rest and time out work quite well when the batteries need to be recharged or more petrol is needed in the tank!
I have a fatigue managment programme for myself - I save energy before big occasions such as weddings, nights out with friends, holidays etc., .....I usually cut down on the running around, long journeys and late nights so that I am full of beans when I need them!
Most importantly of all! Friends! The friends who understand my fatigue are invaluable. These are the people who take me out for lunch, tell me all the latest gossip and take me on holidays! They are not demanding and go with the flow when the tiredness starts! Never underestimate the power of friendship and laughter to help conquer fatigue! I have never been as active and am planning another trip to New York at the end of this month! Roll on the Big Apple!
I am not sure if the fatigue that I experience now is strictly speaking "post chemotherapy fatigue". The medical experts might just label it "fatigue", but one thing is clear, I would not have it if I hadn't had the treatment.
The fatigue during treatment was debilitating to the extent that I spent most of the time lying in bed looking at ceilings. The fatigue I have now is a manageable condition.
Every stage of recovery has its own hurdles to overcome, and the hurdles are not the same for everyone. People experience different things at different times. In my opinion, it is virtually impossible for someone who hasn't had leukaemia to understand the long term impact of the disease and the treatment.
When you look well, people can assume that you are 100% physically fit and 100% fully recovered. I have read many articles and leaflets about post chemotherapy fatigue. Whilst they all touch on parts of the problem, I have yet to find something that deals with the matter in its entirety.
The one thing that the experts are agreed on is that there is no cure for post chemotherapy fatigue. That is the crux of the issue, as it affects so many people in so many different ways. All I can talk about is my own fatigue.
The fatigue I suffer from is not simply a physical tiredness. Apparently the Americans call it chemo brain and it usually manifests itself as a fuzzy head, headaches and a desire to be alone to chill out!
Fortunately, it usually passes after an hour's rest or so and is something that can be managed quite easily with a little bit of forward planning. Some people also speak of difficulties concentrating and irritability when the fatigue kicks in.
The good news in my case is that the fatigue is a manageable condition - I rule it rather than letting it rule me. It seems that periods of proper rest and time out work quite well when the batteries need to be recharged or more petrol is needed in the tank!
I have a fatigue managment programme for myself - I save energy before big occasions such as weddings, nights out with friends, holidays etc., .....I usually cut down on the running around, long journeys and late nights so that I am full of beans when I need them!
Most importantly of all! Friends! The friends who understand my fatigue are invaluable. These are the people who take me out for lunch, tell me all the latest gossip and take me on holidays! They are not demanding and go with the flow when the tiredness starts! Never underestimate the power of friendship and laughter to help conquer fatigue! I have never been as active and am planning another trip to New York at the end of this month! Roll on the Big Apple!
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