Shock and Awe... Celebrating Two Years!
This photograph of my third surgery incision is 3 days post op... two years ago this week after being diagnosed with stage two cancer. These 27 staples helped me heal to the point where today
there is little tell-tail scar from a procedure that just a few years ago would have taken a lot of
muscle, a Jugular vein and several important nerves.
Following surgery the pathology reports were indicating that I had graduated to Stage 4
cancer and required chemotherapy and radiation. This is my hardened plastic mask and acrylic mouth piece, made by my caregivers, that was formed to keep me still during radiations treatments. It clips into place and one can't move for
about twenty minutes as the radiation does it's work.
... celebrating two years post surgery and communicating on some of the issues around cancer that might be helpful to those who experience its impact(s), is the simple answer. I have started writing a document that may one day turn into a book. It will be intended to help people work through what we like to call the Shock and Awe of a cancer diagnosis. I am an optimistic person, and when we kept getting bad news about my cancer, we decided to document the experiences, and to treat them like challenges; hurdles to get over before returning to the goodness of life. I had decided to fight like hell, and end up stronger for the experience.
The hurdles and the necessity of getting over them are at the core of cancer and practically every health problem. Since I have had several health issues including open heart surgery, knee surgery and having had several unnecessary organs removed, I probably have some experience that may help others over their challenges. Add to that, over 30 years in the medical device industry, and I have a perspective shared by even fewer people. Lynnda and I have hundreds of pages of notes and pictures describing what was happening through many of these trials and we hope they will one day help others.
In a short post here, I can relate to a few things that might be helpful to someone getting a diagnosis similar to mine. The most significant point I can make is don't panic! While a critical health issue is a serious challenge to our lives, they are seldom issues that are immediate... exceptions such as heart attacks and acute accidental injuries do require immediate and clear thinking (probably some strategic planning on what would happen 'if', is in order). In the main however, we usually have time to think through the problems and their various options.
Another point is to share the situation with others, until you find partners that can help in the many ways necessary to make the experience as best it can be. This includes the need for medical second opinions... if there is a chance that death is an outcome to an illness, it is especially important to get medical second opinions, not just for the diagnosis, but for the prognosis and the treatment options. In a socialized medical community, this is a challenge. My experience is that the physicians here will openly refer you for second opinions, and if they won't, it is worth reconsidering who you are letting be your doctor.
We have found it is important to communicate pro actively with others. Initially, it is good to get email addresses and phone numbers of all your care professionals. We were able to have questions answered very rapidly by the seven different specialty professionals involved in my case, by asking them through email... we could do this in a timely manner, and it allowed more considered questions and answers... if your physician won't do this, reconsider your care. Also, we found that others who were concerned about my health were well informed with the truth if we pro actively wrote them about what was happening on a regular basis. It saved unnecessary worry, and stopped any inaccurate rumors.
Learn as much as you can about the way your cancer or other challenge will proceed... and what to expect from the treatments. We found several side-effects that were well controlled by things we learned on the internet, in disease specific chat rooms, and from Chinese alternative medicine specialists. The internet can be very helpful... careful however, it is not always accurate, and each item needs to be vetted before letting it become part of your internalized belief.
As a patient, don't forget that your family is going through the disease with you... they are frightened, concerned and wanting to help. They don't live the feelings you have, but they have serious feelings, of their own, that need your care. Communicate with them, help them understand your situation, your feelings and prognosis, as best you can. Make certain that they are aware of all the risks, downsides and so on... but at the same time, ensure that the optimistic side of you is still intact. Be your own champion, and wear it on your sleeve. When I realized that the worst thing that could happen to me was that I could die, I started to understand that my wife, family and friends would have to go on... how could I make that the best for them? I also found that once the death thing became an alternative, I found creative rationalizations for life in most of its forms... and I found new reasons and ways to fight for my life.
There is a saying that if you live life with a storm cloud over your head... your family, friends (and in this case your care givers) will get wet. Many patients that are in for health care treatment have storm clouds over their heads. It is natural that if you arrive bringing sunshine, your care-givers will greet it with optimism, and you'll be special. These are people that have the capability to make us better... there is never any reason to dump rain on them! No way, ever, ever, should we get upset with the care-givers. In a take-off on the entrepreneurs creed, I would say something like this should guide our way...
Rule #1... if something goes wrong in your treatment, don't show anger toward your care-giver.
Rule #2... if your care-giver seemed to be at fault, read Rule Number One.
May you live a life free of health challenges... but if you become ill, I hope that these little ditties will help. The shock of being diagnosed needs to be rationalized. The awe of the alternatives for care is even harder to get through... it takes clear thinking, persistence, a sense of humour, and support.
SUCCESS NOURISHES HOPE