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Non
Hodgkin's Lymphoma VAULT
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Coping is an endless process and I find
myself costantly learning. Over time I developed this template to help
me deal with living with a non curable cancer. When I first
started out in my battle little information was out
there, web pages took forever to load and you needed a computer
background to get around in DOS (computer operating system). Today
that's all changed and computers are now user friendly, but its an
information nightmare out there!
If
your not organized you'll find
yourself getting lost in knowledge.
The following headings came about from
years of searching for relevant, time saving information sources that
helped me to enjoy remission. I got
tired of losing links and decided to get organized which resulted in my
own cancer related web page, which evolved in a decades time from
information oriented to
a humanistic approach. I went from a
gatherer of information, to a binder creater, to an author of a hard
copy of organized
information and thoughts, to a web editor and a web page. I had the
luxury of a six year
period to grow, before I became hungry for
knowledge (major decision time). Now I use this template as a crutch
for coping and when I
find something new I have a place to keep me up todate and ahead of
the game, which helps keep my sanity.
Definite Senior/Edgewalker characteristic,
being prepared.
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COPING VAULT HEADINGS
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Today you really only need a few sites for general
information because
they are very information specific. Over time I've found out that
cancer is a world wide issue and thus have also linked to several
international sites. A fellow Senior/Edgewalker of the STOP Non
Hodgkin's Lymphoma
message board, Shirls
from Australia, who I consider a life long friend, once referred to my
personal cancer related web page
"NHL Playing In The Wrong League" as "her bible", that helped get her
through another bout with cancer. Cancer knows no boundaries.
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Canadian
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National
Canadian
Cancer Society
Overview:
A national, community-based organization of volunteers, whose mission
is the eradication of cancer and the enhancement of the quality of life
of people living with cancer.
CCS web page is a well
organized, easy to get around site, including a worksheet on "
questions to ask your health team",
which you can print out and review before your appointment. The
Canadian Cancer Encyclopedia is a good general search tool. Also
included is the Cancer Services and Programs search engine, two good
sources to find relevant information about everything that is cancer.
National
Cancer Institute of Canada
Overview:
Funded by the
Canadian Cancer Society and The Terry Fox Foundation, the National
Cancer Institute of Canada is
the country's premier research
organization dedicated to supporting outstanding cancer research and
advancing cancer control.
Good
site for finding research news.
Canadian Cancer Society
Regional
Overview:
Cancer Care
Ontario
is an umbrella organization that steers and coordinates Ontario’s
cancer services and prevention efforts.
Great information
site for everything from drug coverage to
phone numbers and contacts eg.Cancer Information Service at
1-888-939-3333
Overview:
This
web site contains the most currently available information about wait
times in Ontario, including a breakdown by individual hospitals for
five specific health services : Cancer surgery, Cardiac procedures
(bypass surgery, angioplasty, angiography), Cataract surgery, Hip and
Knee replacement, Diagnostic scans (MRI and CT scans).
Specific
Leukemia and Lymphoma
Society of Canada
Overview:
The Leukemia & Lymphoma Society is the world's largest voluntary
health organization dedicated to funding blood cancer research,
education and patient services.
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International
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Heavyweights
Overview:
With chartered divisions throughout the country and over 3,400 local
offices, the American Cancer
Society (ACS) is committed to fighting cancer through balanced programs
of research, education,
patient service, advocacy, and rehabilitation.
The NexProfiler Treatment Option Tools, which can help you make an
informed decision about your treatment looks interesting.
National
Cancer Institute
Overview:
The National Cancer Institute (NCI) is a component of the National
Institutes of Health (NIH), one of eight agencies that compose the
Public Health Service (PHS) in the Department of Health and Human
Services (DHHS).
Good section on clinical trials and how to find one.
Wikipedia,
the free encyclopedia
Overview:
Wikipedia (pronounced We-key-pee-de-ah) is a Web-based
free-content multilingual encyclopedia project.
Hard to beat Wiki for information.
Specific
Overview:The
Lymphoma Research Foundation (LRF) is the nation’s largest
lymphoma-focused voluntary health organization devoted exclusively
to funding lymphoma research and providing patients and healthcare
professionals with critical information on the disease. LRF’s mission
is to eradicate lymphoma and serve those touched by this disease.
Lots of information and suggestions on how to get involved.
Individual
Lymphoma
Information Network
Overview:
These pages are for those seeking
information on Hodgkin's and Non-Hodgkin's Lymphoma. Welcome! This site strives to do
three
things: put a bit of humanity and understanding to this
disease, to gather lymphoma information and resources
in one
place, and to present information in an easy to understand and logical
format.
This was one of the first
sites I used regularily.
Overview:
Welcome to Stop Non-Hodgkin's Lymphoma (aka: Stop
NHL), one of the oldest lymphoma support communities on the Internet.
Although we've grown tremendously in size since our conception in 1997,
and we have world-wide appeal with posters from the United States,
Canada, Australia, England, Germany and other countries, we've managed
to retain our small-town appeal. If you search hard enough you
eventually find what you are looking for.
I was looking for the reality that me beating cancer could be done.
Here I found Bruce who I claimed as a blood brother, with the same type
of NHL and a similar background. The rest is history and for nearly a
decade we fought the beast together. His "Twin" through the
battle Trudi, his wife is a truely inspirational caregiver to not only
Bruce but
also to numerous others across the world. The site is definetly worth a
visit. On my last visit since she updated her webpage I got a very
warm surprise.
Definite Senior/Edgewalker characteristic,
communicator.
PatientCenters
Overview:
Questions answered, experienced shared.
Has several interesting articles worth reading.
Professional
Professional
Help
Overview:CancerConsultants.com Inc. is the leading
developer of cancer program web sites, cancer related internet-based
educational resources and marketing
consulting services
for cancer
programs. CancerConsultants.com Inc. also manages
www.cancerconsultants.com, the
leading cancer information portal for
patients and oncology professionals on the Internet. Educational
content found on www.cancerconsultants.com
is also distributed
to over
200 leading providers of cancer care in the United States in both
English and Spanish.
Betsy's story is inspirational.
Technology
NHL
pdf file from American Cancer Society
Overview:
Most larger organization are providing
information in pdf format.
Adobe
Reader provides a free download for pdf files.)
If you intend on becoming a true
searcher on the internet better get use to working with pdf files.
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My Treatments - Like most unique cancer
patients I was given an individual
treatment plan for each occurance of cancer that took into
account my type of cancer, its characteristics, the stage of cancer and
my personal health situation. For each fight with cancer I worked with
my doctor to decide on a treatment plan, however the initial battle was
all the doctor's doing. My treatments varied based on my medical
history
and this is a common occurance, because sometimes two people with the
same cancer can be given very different treatments.
Each treatment has a GOAL, which
you and your medical team hope to reach and I'll give examples of goals
based on my medical history.
1st Remission (1990) - Because
my cancer was not curable the GOAL
of my treatment was to CONTROL
the beast, and it was
everywhere. The hope was to prevent the growth of cancer cells and to
reduce the risk of my cancer recurring
(at one time I hated that
word). Despite the primary treatment working and getting
rid of my cancerous nodes I was given another dose of chemo (Leurkeran)
Adjuvant Therapy, to
destroy any remaining cancer
cells and to reduce the risk of the cancer recurring (there's that word again).
2nd remission (1993) - In this
recurrance
the beast was only found locally or only in one spot
and the chemo (Leurkeran) did what it was suppose to do, CONTROL. The chemo was the primary
(main) treatment.
When
I was first diagnosed the definition of Recurrent Non Hodgkin's
Lymphoma was that the cancer came back in shorter
and shorter periods, until you were
out of luck. My history of remissions was 3 years - 1 year - 1/2 a year
(out of luck ? I think not!).
3rd remission (1997) - This is
where all hell broke loose. In this
battle I
used a combination of treatments. The first stage
of my Stem Cell Transplant was
to receive Neoadjuvant Therapy, or
chemo that was given
before the primary treatment to reduce the size of the tumours, so that
it
was not only easier to treat with the chemo and radiation later, but
also in
my case to promote the primary treatment of harvesting of my stem
cells. Before receiving my
stem cells back I was given major chemo and major radiation and in this
case the transplant was the primary treatment, not the chemo or
radiation.
You can see why I once despised the word
recurrent, but now that I and others like me have given new meaning to
the
word in dealing with NHL (Non Hodgkin's Lymphoma), it doesn't have the
effect on me that it once
had.
It's interesting to note that my medical team used both Local and Systemic treatments. Local radiation
was used to relieve the pain from the node in my spine and I went from
barely being able to move, to dancing in the streets virtually
overnight. Systematic was
used to get rid of all the other painless
nodes that were still there and going no where fast. I like to think,
although no one will tell me, that the treatment was given to CURE my cancer. February 18th (Stem
Cell Transplant day and also my
moms birthday) 1997 was the last time I physically had NHL.
4th remission (2004) - With
this remission from a second type of cancer
(Malignant Melonoma) my treatment team used Surgery as the primary treatment.
My system paid off because I had the tools
in place this time to quickly gather information
and realize that because it was caught early it would be an easier
battle, why over worry for nothing.
My General Practioner
found the skin cancer as a result of treatment for a blood cloth in my
lung, who's source was never determined. Thus my NHL medical team went
into high gear to see if their was another type of sleeping beast
elsewhere, namely had my NHL returned. I also found this time that
because I was leading the charge and informed, new acquaintaince
doctors were very receptive to discuss and clarify previous cancer
involvment in the sway away from normal expedations. Today I'm more
concerned with side effects from treatments, that my NHL coming back.
another Senior/Edgewalker characteristic: informed
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MY TREATMENT
SUMMARY
Treatment
Goals
Treatment
decisions
are based on: type, grade,
stage
of disease and a person's age
and well being.
Cancer
treatment various with individual wants and needs and can change over
time.
CONTROL -
stop
cancer from growing and spreading or coming back.
CURE - treatment is given as the main treatment to cure the
cancer.
PREVENTION- prevent the growth of cancer cells or to remove
precancerous tissue that could turn into cancer.
PALLATIVE - Treatment is given when cure is not possible.
Treatment Plans
Treatment
plans are designed to
meet the unique needs of each person with cancer.
PRIMARY therapy
is your main
weapon
in fighting the beast.
ADJUVANT therapy is used to destroy any
remaining cancer cells and to reduce the risk of the cancer recurring.
NEOADJUVANT therapy is
treatment that is given before the primary treatment, so that it is
easier to treat with the primary treatment.
Treatment
Targets
LOCAL treatments
are directed at a specific part of the body and are often used when
cancer is limited to that area.
SYSTEMATIC treatments
are given to travel through the bloodstream to reach cells throughout
the body.
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Chemotherapy is the
use of anti-cancer (cytotoxic) drugs to treat cancer. I have had a single agent chemotherapy drug
for treatment (Leukeran) and a chemotherapy combination. As part of Adjuvant treatment for my
Stem Cell Transplant I received Cisplatin and Cytarabine
and then
received Etoposide (my personal non favorite chemo) and Melphalan
before
the stem cell infusion (CHOP
is the most
common chemotheraphy combination).
As you can see there are many types of chemo and
unfortunately all have side effects. Leukeran
(what I refer to as a light chemo) came in pill form and was the
easiest to handle. I found if I kept something in my stomach I was all
right . To get Cisplatin (middle of the road
chemo) I was hospitilized to prevent dehydration, but remember limited
side effects. The chemo Etopisode (heavyweight) I now really respect. It knocked me down bigtime and has
lingering effects even today. If I had to take chemo again I would be
really interested in looking at options, other than going through
another Etopisode journey.
Drugs
Drug
Information For Patients
Cancer
Care Ontario
Overview:
This is a drug information site for patients that goes into how and why
the medication is used and the precautions to look out for. Man I wish
this site was around in my learning days.
The
Internet Drug Index
RxList
Major Sites
Overview:
These are just a few
of the many sites out there that have sections on chemotherapy.
Chemotherapy
Overview:
Welcome to Chemocare.com, my new website designed to provide the latest
information about chemotherapy to patients and their families,
caregivers and friends. We are here to help by supplementing what you
may already have learned from your healthcare professional.
-- Scott Hamilton
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Radiation therapy uses
high-energy x-ray beams to destroy cancer cells. I have had both Local Radiation and Total Nodal Irradiation
Radiation Therapy.
Local (Pallative - reduce tumor bulk) Radiation was used to bring down the size of a cancerous
node that was in my spine severing my nerves. I received 4 treatments
with instant results. In fact I received the last treatment in an out
patient bases, coming a long way from the bedridden sole a few days
earlier. Local Radiation can also be used as the primary treatment,
when the disease is localized.
Total Nodal Irradation was used as part of a treatment plan for
my Stem
Cell Transplant. It's the heavyweight of Radiation therapy because all Radiation fields are radiated at the same time. A
Radation Field is the term used to describe the area being radiated. Combination therapy is where
radiation is
used as part of a treatment plan along with other treatments, such in
my case chemotheraphy and the stem cell transplant. The dose and schedule for the
radiation therapy is determined by the type of cancer, the extent of
the disease, and whether the goal of treatment is to cure the disease
or relieve symptoms. One particular side effect from Total Nodal
Irradation is that the patient
will become sterile, so if your planning on a family better save some
swimmers.
On a NHL Message Board I once mentioned
that I had the "pleasure" of receiving radiation. Some stated that
they would never have
associated "radiation and pleasure"
and then made reference to my glass is half full attitude or positive
nature, which they said turned their day
around and noted that this attitude
made my life easier to take and loved once around me lifes easier to
take. How true!
another Senior/Edgewalker characteristic: positive most of the time
Don't get me wrong I respect
radiation for I have seen its full force. Pallative radiation therapy can be
used when chemotherapy is no longer effective to relieve
symptoms. My Dad for an example, went to radiation limits in his
battle with prostate cancer and it wasn't pretty and that's why I know
and appreciate my successful, pleasurable experiences with Radiation.
Overview:
These are just
a few
of the many sites out there that have sections on radiation.
Major Sites
National Cancer Institute
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Surgery
Up until doing a section on Surgery I
never realized the role that
surgery played in my recovery process.
Diagnostic surgery was the first type of surgery I had. It
is used to get a tissue sample to tell whether or not it is
cancerous or to tell what type of cancer it is. When only a sample of
tissue is removed, the procedure is called an incisional biopsy. When an entire
lump or suspicious area is removed, the procedure is called an excisional biopsy. When a sample of
tissue or fluid is removed with a needle, the procedure is called a needle biopsy, core biopsy, or
fine-needle aspiration.
Next came Supportive surgery which is used to help with
other types of treatment. For example, a catheter port was surgically
placed into a large vein in my chest and used to deliver chemotherapy
treatments, replace stem cells and to draw blood for testing, reducing
the number of needles needed.
Then I had Curative surgery which is the removal of a tumor
when it appears to be confined to one area, or in my case the Malignant
Melonoma. It was done as the primary treatment of the cancer.
Preventive (prophylactic) surgery is done to remove body
tissue that is not malignant (cancerous) but is likely to become
malignant. For example, this type of surgery was used to remove
precancerous condition polyps in my colon.
My Dad had Restorative (reconstructive) surgery which is
used to restore a person’s appearance or the function of an organ or
body part. In his case his arm needed to be
reconstructed to recieve additional radiation.
Staging surgery helps determine the extent and the amount of
disease. Lucily I never needed this type of surgery.
Major Sites
Surgery
American
Cancer Society
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Immunotherapy/Clinical
Trials
Immunotherapy (biologic
therapy) is a treatment that uses the immune system to fight cancer. It
is the new tool in fighting cancer and can be used alone or with
another type of therapy.
Immunotherapy Tyes include:
Monoclonal
Antibody Theraphy (Passive - they use immune system components
like antibodies created outside of the body to attack the disease).
Cancer Vaccines
(Active -
stimulate the body’s own immune system to fight the disease).
Nonspecific
Immunotherapies
and Adjuvants
Clinical Trial is the
studies of promising new or experimental treatments in patients.
Phase
I clinical trials: The purpose of a phase I study is to
find the best way to give a new treatment and find out how much of it
can be given safely.
Phase
II clinical trials: These are designed to see if the drug
works. Patients are given the highest dose that doesn’t cause severe
side effects (determined from the phase I study) and closely observed
for an effect on the cancer.
I was involved in a Phase
III clinical trials with Monoclonal
Antibody Theraphy: Phase III studies involve large
numbers of patients. One group (the control group) receives the
standard (most accepted) treatment. The other group receives the new
treatment and all patients in phase III studies are closely watched.
Back in 1997 I was reluctant to move on to strong chemo so I researched
my options and found out about Clinical Trials. My Onchologist
Specialist recommended a Phase III Clinical trial at a research
hospital and I quickly jumped at the chance to avoid chemo. The
treatment was not beneficial to me but when my condition got worse I
had an in with the same research hospital and had my Stem Cell
Transplant done by some of the best NHL specialist doctors in the
country.
Another Senior/Edgewalker characteristic: not scared to take a chance.
Major Sites
Overview:
These are just a few of the many sites out there that have sections on
clinical trials and immunotherapy.
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Communication sources are very
supportive in nature because knowledge is divine. When I first started
out in my cancer journey you didn't need
Support Groups. In a support
group you will find people with problems similar to yours. Group
members will offer you emotional support, practical information and
tips on how to cope with your unique situation. Support groups format
centers around those led by professional facilitators such as a nurse,
and those led by group members, which are often called peer or
self-help groups and can be educational and structured. As more and
more people survive cancer the need for a structured guide to coping is
materializing and individuals like myself are putting together "
Coping Workshops" to help others
cope.
In
addition to traditional in person support groups the Internet offers
online
support groups and communities.
Newsgroups are like
virtual
bulletin boards, with lists of messages on similar topics posted by
users.You can read the messages called posts. You can post a
message or simply browse the list.
Electronic mailing lists are different
from newsgroups and operate by e-mail. To participate you join a
mailing list and, as a member, you receive e-mails from other members.
Each time anyone in the group sends an
e-mail you also get a copy. If you send an e-mail then a copy goes to
everyone.
Chat rooms operate on the same premise as
newsgroups and electronic mailing lists. The difference is that they
operate in real time, and there's no delay in the exchange of
information. It's like being in
a room talking to others who have a similar interest. But you're not
talking out loud. You're talking through your keyboard.
Personal Web Pages/Blogs are
usually a good source for all that is your cancer including personal
stories.
Message Boards are
like newsproups but done in a community setting.
Books are the
traditional source for communicating messages.
Communication is vital to a
health
recovery. I learned this early.
Message
Boards and Support Groups
For years the
STOP NHL
Message Board was my path to understanding what I was going
through. A place to find out that I was not alone and that I could be
down and had the right to feel down. A place to draw strength and
guidance from. It was and still is so real because you will
always find fellow Non Hodgkin's Lymphoma'ers there in battle. This is
a great site with
friendly, caring and informative NHL patients and caregivers, who can
be a wealth of support in times of need. The STOP NHL Message Board
helped me and many others become and stay NHL PROUD.When you pay
attention long enough special people emerge to the
forefront. Dealing with NHL was no different and over the years special
folks from around the world help me to cope, and even help today. There
are larger
lymphoma message boards on the Internet, but like large cities, they
are fast-paced, cold, impersonal and easy to get lost in. In contrast,
the Stop Non-Hodgkin's Lymphoma community is like a small town, where
the pace is slower and almost everyone knows your name and cares about
you. I may not post as much any more but I visit often to check on
friends and to keep up with any news and even after what's closing in
on a decade removed from active Non Hodgkin's Lymphoma, I am still
considered a senior of the board.
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Workshops
are becoming more
common in dealing with all the cancer related information out there.
The
workshop in Ottawa is being facilitated by one of my Stem Cell
Transplant Doctors.
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Personal Web
Pages, Stories and Blogs
I
also like to read about other similar cancer battle stories.
There is something for everyone in the documentation of the cancer
journey.
Recently diagnosed : Learn what
others have experienced with your type of cancer and the types of
cancer treatment they have undergone.
Experienced patients: Share your
cancer experiences about cancer treatments and other concerns with the
newly diagnosed and help others understand what it is like to have the
cancer you have and what effects the treatment has on your body and
lifestyle.
Friends and family: Deepen your
understanding of the issues facing the patient.
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Books have always been a
source for information and today with the internet they are much easier
to find.
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Blogs
are now the in thing
for keeping track.
Lymphoma Invotations
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News
is something that gives
hope for a future.
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Anything that helps to
cope is
valuable.
Tech
Adobe
Reader for pdf files
Overview: Upgrade today by
downloading free Adobe Reader 7.0 software to view, print, and search
Adobe PDF files. Whether you use it at home or in your business, on
your computer or on a mobile device, upgrading to Adobe Reader 7.0
helps you work faster and better.
Overview:
Cope with Cancer is
a new computer CD-ROM designed especially for newly diagnosed cancer
patients.
Specialty
NCI
Dictionary of Cancer Terms
Overview:
Welcome to the NCI Dictionary of Cancer Terms, which contains
more than 4,000 terms related to cancer and medicine. Type the word or
phrase you are looking for in the Search box and click "Go". If you are
not sure of the spelling, type in a few letters and click "Go". Or
browse through the dictionary by clicking a letter in the alphabet.
Canadian Cancer Society
Cancer Checkup
Overview:Reducing
your risk of cancer involves making healthy lifestyle choices and being
proactive about screening and early
detection. Answer the following questions and we’ll provide you with a
personalized Checkup Checklist that you can take to your doctor. All it
takes is a few minutes of your time. It’s completely anonymous and
confidential.
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Researching
and Documentation Tips
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Over the years I've developed my own style for searching on the
Internet and because cancer is such a "HOT" topic loads of information
and information sources are available.
TIP #'er ONE
Stay focused and keep it topic
specific.
What
I've discovered in my internet journeys is that it is easy to get off
topic. To avoid this I use a documentation process that allows me to
keep track of everything I find. It is a simple approach that is based
on the gathering and classification of information so that a more in
depth analysis can be done later. I do this by using a browser (ex.
Internet Explorer) and a source for documentation (ex web editor such
as Netscape Composer - or a word processor such as Word -where you can
hyperlink or Notepad where you will have to copy wep page addresses
in). At this point I can go into the history of searching but because
searching is becoming so user friendly I'll keep it basic.
First thing I do is a basic search on the topic on several search
engines
My initial goal is to find a
reliable
subject directory which is a service that offers a collection of
links to Internet resources submitted by site creators or evaluators
and organized into subject categories. Directory services use selection
criteria for choosing links to include, though the selectivity varies
among services and most directories are searchable. Using this site I
begin the documentation process and begin to categorize based on their
recomendations on the topic.
DOCUMENTATION
CATEGORY TYPES
Major Sites - Must Reads - Catch All (A to Z) section
Major Sites are looked at quickly for
additional avenues of research or classification and are added to the
documentation page for analysis later. Must reads are not of the major
sites classification but attracted my interest enough that they warrant
a view later. The catch all section is just what it says and as I find
related information on the topic, I put the link where it belongs (ex
under
B you might find a
link to
Books on the topic,
under
I you might find links
to
Inspiration Stories, under
N you might find links to
News, etc ...) You classify to your
needs and wants and thus it is easier for you to remember where things
are.
TIP #'er TWO
Document to your needs and wants.
An important part of the Internet search is keeping track where you
search, especially if you plan on making a thorough search. To me a
thorough search is examining the results of the search engine until the
results are becoming off topic. However I have found several gem web
pages by having the patience to find "needle in the hay stack" web
pages that don't register as often with the search engines.
another Senior/Edgewalker characteristic: patience
Once I have done the basic search on my search engines I now refine my
search by using the same topic, but enclose the topic in quotation
marks. This usually will find more topic specific information.