Saturday, August 29, 2009

Summit - Day 1 summary











My apologies for not getting a post up earlier. We had some very long days at the summit and I found my brain just couldn't give up the info yet! I have started working on summaries of the presentations and will add some of my ideas later on. It was an amazing 3 days and I am still processing and making sense of what I have learned. The summaries are a bit academic - as I said, I will add my opinions and ideas later on.

Summit - Day 1

Global Summit – Day 1

Across the world, 33,000 people will be diagnosed with cancer – today.

We really only know about ½ of the causes of cancer, but of what we know:

· 80-90% of cancer have origin in environment or lifestyle behaviours

· Infections cause a high number of cases cancer in developing countries – ex. Hepatitis B causes liver cancer

· 30% of cancers in rich countries are caused by tobacco

Cancer is the most preventable and most curable of chronic diseases.

Cancer is as much a political issue as medical one.

In the U.S., a 10% decrease in cancer cases = $1 trillion in health savings

Does focus on prevention lead to blame or guilt? We must empower people, it is important not give too much personal responsibility.

Tobacco is only co-op that can market an addictive and lethal disease.

Cancer is not only life-threatening – it is an act of violence. You have to fight for your life and fight for your care.

3 things that can save lives:

- Eliminate exposure to tobacco

- Get exercise

- Be active – become an activist

We must put site-specific things aside and provide a unified front to politicians, etc.

Cancer must be approached in an intersectoral manner – across all areas of government. This is not only a health issue. Some governments allocate funding based on evidence based treatments and best practices. We can use some preventative strategies – eliminate tobacco use, eliminate use of tanning beds, use screening programs – there needs to be buy in from all levels and areas of government.

One suggestion to making a difference for access to medication is to change the length of time a drug company can have monopoly on intellectual property – perhaps 2 years, and government subsidizes any losses to company for the other 3 years.

In Belgium people are reimbursed 40 – 60% of treatment costs after consultation and negotiation with government and industry.

We should utilize current infrastructure and use electronic transfer of images/diagnostics.

We may need to take this issue to United Nations to address this on a global level.

Sometimes even free programs don’t have 100% participation – often lower socio-economic groups don’t participate

Prevention and early detection = better quality of life.

We need solidarity in fight – address fears of being ill and dying.

Our plan and vision need to be based on best possible outcomes for patients and access for patient to receive best treatments available.

We must give hope – cancer does not mean death.

World Cancer Targets

Many levers of cancer lie outside medical system.

There are shared risk factors for other non-communicable diseases.

INCP – only 14% of population has access to opiate pain medication – ie. Morphine.

We can increase quality of care by creating specialty health centres and specialized services.

Countries need to develop a National Cancer Plan.

All layers need to be involved.

Educate professionals

Continuum of stakeholders.

Corporate responsibility

- now match employees contribution with time off

- loan Pfizer employees for up to 6 months

- “social opportunity vs. social responsibility

Power of bringing together unusual events – i.e. NIKE Stages art project

Business philosophy – “profits with a purpose” -becomes part of profile of company

The Global Burden of Cancer

Today, 33,000 people around the globe will be diagnosed with cancer. We are facing an epidemic, especially in the developing countries. In my opinion, this is quickly becoming a humanitarian crisis. And we must respond. People all over the world have recognized the urgency of the situation and have found creative ways to address the issues arising in their countries. But it is not enough. We must have a global, intersectoral, governmental, multi agency and grassroots response so that everyone, regardless of where they live, will have access to diagnostic tools and treatments that will save their life and give them a better quality of life.

Currently, we know approximately ½ of the causes of cancer. We know:

· 80-90% of cancer have origin in environment or lifestyle behaviours

· Infections cause a high number of cases cancer in developing countries – ex. Hepatitis B causes liver cancer

· 30% of cancers in rich countries are caused by tobacco

Cancer is the most preventable and curable non-communicable disease yet it is underfunded and under resourced. and the response needs to come from beyond medical boundaries. According the CEO of American Cancer Society, cancer is a violent disease – you have to fight for your life and fight for your treatment. He estimates that if the U.S. could reduce the number of cancer cases by 10% the would save $1 trillion in medical costs.

There were some discussions on how best to provide information and education on prevention strategies. While we want to empower people to make healthy personal choices that reduce the risk of getting cancer, we must be careful to not blame the patient. It does not help our cause to have people feel guilty while fighting the disease. Some prevention strategies that can save live

· eliminate exposure to tobacco - Tobacco is only co-op that can market an addictive and lethal disease.

- Get exercise

- Be active – become an activist

It became evident that government around the world would need to become actively involved in this fight, both in their own countries, and finding some way to work together to ensure all people in the world have to medical treatments that will save their lives, give them a better quality of life, and for those who are not curable, let them life pain free, with respect and dignity. Some suggestions on how governments can make a difference are:

· Cancer must be approached in an intersectoral manner – across all areas of government. This is not only a health issue. Some governments allocate funding based on evidence based treatments and best practices.

· We can use some preventative strategies – eliminate tobacco use, eliminate use of tanning beds, use screening programs – there needs to be buy in from all levels and areas of government.

· change the length of time a drug company can have monopoly on intellectual property – perhaps 2 years, and government subsidize any losses to company for the other 3 years.

· We should utilize current infrastructure and use electronic transfer of images/diagnostics.

· We may need to take this issue to United Nations to address this on a global level.

· Sometimes even free programs don’t have 100% participation – often lower socio-economic groups don’t participate. We need to find ways to address the barriers these groups have to accessing screening tests.

· We need solidarity in fight – address fears of being ill and dying.

· Our plan and vision need to be based on best possible outcomes for patients and access for patient to receive best treatments available.

· We must give hope – cancer does not mean death.

· Countries should create a national cancer plan (Canada has one)

Monday, August 24, 2009

Summit - Day 2 or 1?

Today was the first real day of the summit. A long, be very informative day of panel discussions. We heard from many world leaders about cooperation, prevention and the increase of cancer cases in developing countries. We heard about the difficult decisions countries must make with funding, and how important it is to address the funding needs. To tell the truth, my mind is full of information and I am very tired. I will finish this tomorrow. I need some sleep. 

TTFN

Sunday, August 23, 2009

The Summit, Ireland, Day 2

Entrance to Dublin Castle                                              Sand sculpture                                                                                  
                                                                                                                                                                                            
 One of the castle rooms







Today was a "get ready" day for summit. Registration was in the afternoon and the opening reception at 6:30. We have a great summit bag - a nice LIVESTRONG bag with a portfolio and pen, water bottle, pin, bracelets, flash drive, an "Atlas on Tobacco" and  couple of other things. Quite a nice treat! The reception was held at Dublin Castle and we were warmly welcomed by LAF CEO Doug Ullman. While at the reception I chatted with people from Austin, Texas, Boston Mass, Miami Florida, and a couple of other places I don't remember! We heard greetings from the Irish Ministry of Health and the U.S. Ambassador to Ireland.  Ireland is one of the world leaders on cancer control - something of which I was not aware. There is more learning to come tomorrow. I feel like a minnow in a sea of whales! Most people here are affiliated with organizations and their paid job is the reason they are here. There are doctors, psychologists, researchers and many more professions represented.  There are a few LIVESTRONG leaders here - I hope to find them soon!  It is definitely overwhelming at the moment to be surrounded by such intelligence and wisdom. I sure hope I can manage to absorb a whole load of information! Unfortunately there has been nothing organized for spouses/family members who are accompanying delegates.  It will be a couple of long days for Callum.  I am sure he will find something to do while I am busy - hopefully he finds some friendly people along the way.

TTFN

Saturday, August 22, 2009

Ireland Day 1

We arrived in Ireland and were greeted by sunshine and the warmth of Summit volunteers.  We never had to look far for help when we needed it. Everyone here is quite friendly and helpful. So far it has been a good trip, although we have some jet lag.  Our hotel is quite lovely and comfy so will feel quite at home.  The coffee, however, is coffee in Europe! Only 1 week of it this time, though! Tomorrow I can register and the opening reception is at Dublin Castle in the evening.  I need to check to see if Callum can come for the dinners - it will be a couple of long days if he can't. 

Check out www.livestrong.org for updates!

Sunday, August 16, 2009

Happiness is.....


Welcome Cade Scott Bonneville!!!

It has been a whirlwind of the past six weeks or so.  I am hearing from many people that they have been checking my blog - to no avail!

For those who remember, this blog will be in the spirit of that famous song, and Charlie Brown book....Happiness is.....

HAPPINESS IS.....GRANDCHILDREN!!
Since my last blog, we have been to Saskatoon, Medicine Hat, back to Saskatoon, Medicine Hat, Alameda, Medicine Hat......are you starting to see a pattern? I have a new guy in my life.  Fear not, Callum is still my main squeeze!  Cade Scott Bonneville was born July 7, 2009. He was 7 lbs, 7 oz. We had fun with the numbers game - born on 7/7, weighed 7/7. And if you take 9 -2 (in 2009) you come up with 7! What a lucky boy! 

He has been the brightest spark in our life since his arrival. He spends some time each day talking to Grandad, well, OK - cooing.  He loves to hear his Grandad's voice and intently gazes at him when he speaks. They have spoken of the ways of the world, what he should aspire to be as he grows up, and other important life lessons.  Luckily, he is still eager to hear the wisdom of Grandad.

Stuart and Vanessa are doing well. They have definitely risen to the occasion in the parenting world. Cade couldn't have more loving and caring - and very smart! - parents. It is a joy to see such a loving couple share their love with a wee being.  They could be a new definition of family and we are very proud of them.



Cade
5 weeks old






HAPPINESS IS.....STABLE HEALTH!
Callum has continued to feel very well. He has continued with the 5 - FU chemo and leucovorin. He generally has fewer side effects and has a quicker recovery. He had a CT scan mid-July and it shows no change from the April CT scan. We are absolutely thrilled! This means that it has now been 1 year since a CT scan showed any disease progression.  Could this be the miracle?Unfortunately, our elation was short lived, to an extent.  Blood tests in early August showed some fluctuations in his liver enzymes. Dr. A is a bit concerned that it is a result of some cancer spread that hasn't yet shown up on the CT. So Callum had oxaliplatin chemo added to his last treatment, just in case the fluctuations are due to cancer.  To put this into context though, the enzyme levels that Dr A is concerned about are still lower than they were in early spring! We are optimistic that the fluctuations are due to chemo or something else, and not cancer. And even if it is cancer, we feel extremely confident that the oxaliplatin will once again take care of it. A follow up blood test post chemo treatment showed some decrease in some levels, and minor increase in the others. Nothing major. We are not worried....nor should you.

HAPPINESS IS......MEDICAL TECHNOLOGY
Dr A has also ordered an ultrasound to see how the blood clot is doing. Callum has had absolutely no issues with it, but it hasn't been checked since the end of January, so I guess it is time. The ultrasound is on August 19, so we should know early Sept what is happening with the clot.

HAPPINESS IS.....IRELAND!!
I think I have mentioned that I started a community group - Saskatoon Supporting LIVESTRONG, as part of the global action on cancer started by the Lance Armstrong Foundation. On behalf of our group, I submitted a commitment to bring the Giant Colon Tour, an education exhibit of the Colorectal Cancer Association of Canada, to Saskatoon.  I am priveleged to be one of the 225 or so committments (out of 300) to be invited to attend the Lance Armstrong Global Summit on Cancer in Dublin, from Aug 24 - 26! So, Callum and I are off to Ireland on Aug 21 and will return to Saskatoon on Aug 28. Unfortunately we have no extra time to hop over to Scotland.....but Callum will be by himself while I am at the conference, so if anyone in Scotland wants to pop over, just drop us an email or give us a call! I am very excited to be part of the positive action that will make cancer history.  

HAPPINESS IS......GREAT FRIENDS
Saskatoon Supporting LIVESTRONG is a new group making giant leaps! Along with the Giant Colon Tour, we will have a Wear Yellow Day, to help offset the costs of the Giant Colon and hopefully to have some funds to donate to worthy cancer causes in Saskatoon and area. None of this would not be possible if not for some great friends we have found in Saskatoon. You know who you are - THANK YOU!!!

HAPPINESS IS.....WONDERFUL FAMILY
We spent a few days in early August helping my mom prepare for an auction sale. She and my step-dad, Earl, have decided to move into a seniors apartment in Alameda. We are happy to see them move into town and closer to other people. It was a busy few days, but so nice to be with my sisters and brother, sister in law and brothers in law for that time. We got to have short visits with some Aunts and Uncles, and cousins.  The sale went well and both Mom and Earl were quite pleased at the end. 

"People become really quite remarkable when they start thinking that they can do things. When they believe in themselves they have the first secret of success."   
  Norman Vincent Peale

TTFN
Lorna