Cancer is a frightening word for anyone: Today we meet Grant Baker – Australia’s Empowered ePatient. Despite a frightening diagnosis of signet cell adenocarcinoma, a rare and aggressive form of cancer, Grant’s story and his approach to taking charge of his journey is truly inspiring and with Grant’s permission we share it with you today.
Grant Baker is the Managing Director of ContentStream, a company that provides healthcare content through a joint venture with Health24.com (part of the NASPERS Group). Grant has an extensive strategic marketing background including holding the roles of Strategic Director of McCann Erickson, and Managing Director of Red Nail Leo Burnett.
His own health journey has been inspired by e-Patient Dave’s philosophy of being an empowered patient and he is set to become Australia’s leading advocate for such. A passionate speaker and facilitator, Grant is on a mission to empower Australian Healthcare Consumers.
His message is clear:
Be equipped, empowered and engaged in your health care journey. It is about participation and partnership with your medical team.
Grant’s life was saved by his wife when she was diagnosed with Colorectal cancer and insisted that he be fully tested to ensure that he was healthy to take care of their two teenage daughters. These tests included an endoscopy that showed a small ulcer in the gastro esophageal junction. The biopsy surprisingly came back positive for , a rare and aggressive form of cancer that has a survival rate below 10% because it is mostly diagnosed too late. This was the beginning of what has been both a fascinating and inspiring journey.
He read Dave’s book – Let Patient’s Help! during a very dark window in his life and it changed his perspective. I started to think about my engagement with the health system in a completely different way. As he says: “I knew could be in the drivers seat and I had still choices. That was empowering”.
“At this point I believed that I could play an active role in my recovery or I could passively go through a process that might, or might not save my life” says Grant.
And a active role it was which included research, meeting with multiple specialists, consulting with patients who had themselves survived the journey to gain an understanding of what to expect (which was invaluable for post operative care), and inspecting surgical wards and ICU facilities to ensure that the correct hospital with the best level of care and facilities were in place and there would be minimal disorientation post surgery.”
The two other key factors in being empowered was ownership of records which allowed for the seeking of a second opinion, and understanding that it is the patients right to seek a second opinion. Few patients understand that they own all medical records on them -not all medical practices are comfortable with this and there are such varying systems of how patient records are held, that this in itself is a challenge.
Secondly, many people talk of a second opinion, but few pursue them out of fear, guilt or ignorance. In Grants case, after not feeling entirely comfortable with his initial surgeon, and with the help of a few medical specialists, they created a shortlist of other potential surgeons. He set about interviewing them and it came down to two, and understanding that the success of his particular surgery was based on the least postoperative complications. Grant chose Dr Charbel Sandroussi.
Now working with his new surgeon he began training for his surgery (both physically and mentally), adjusting diet to ensure that all other organs including the heart and liver were optimized to deliver the best outcome.
On the 10th May 2013 Grant Baker underwent one of the most invasive surgery techniques known, the Ivor Lewis two-stage oesophago-gastrectomy, which included removing 10cm of the oesophagus and much of the stomach. It is one of the top three invasive surgeries performed today along with Heart Transplants and Live Transplants. For this father of two, his journey not only focuses on his health but also the demanding financial requirements of providing for his family as the primary household earner during a very difficult time.
And so the story begins.
Grant’s 10 tips to being an empowered healthcare consumer
The human mind is the most powerful organ in the body. Your attitude is the single biggest impact that you can have on your recovery. Attitude is everything, even when you don’t feel that great.
Research, research, research. Empower yourself with information, understand what is happening with your body, and what it is you will go through. Research what your options are. When you find something that you think is special or relevant to a better diagnosis, share it with your medical team, they will listen and ask lots of questions.
Research is not just about finding definitions on the internet (which in itself can be scary and varied), speak to past patients, speak to patient organizations, speak to other doctors, care givers and join patient forums.
For convenience ask your health care team if you can make appointments with them via new online tools such appointment booking services.
Do not just focus on the disease or the surgery, get to understand pain management tools, techniques to assist you prior to surgery, and gain a strong understanding of what you will require post operative recovery. This is often where the biggest surprises are.
Ask about the medication you will be required to take, possible side affects and if relevant other options available to you. Remember knowledge is power.
Own your records. They are yours, and if you ever need a second opinion or move, they are invaluable and will save a fortune in not having to redo the same tests for different doctors. Check that you have all data and where relevant that it is accurate.
Don’t be scared or apologise to ask questions of anyone. Be this your doctor, a technician, a nursing sister. You are the patient and it is your right.
Work with your doctor to support your recovery. Discuss with him what you can do to prepare for a procedure and what you can do post. This can take many forms including exercise, diet and planning.
Get to know your medical team. All of them. They are human too. By knowing them better in a professional manner, you will feel more comfortable to communicate, and they will build an understanding of what your preferences are.
Be comfortable with your surgeon. If you are not get a second opinion. This is not to question the initial surgeons ability, but you must have a positive relationship if you are going to trust him to manage your care.
Never never never give up. Its your life to live