I am relieved to say that the bag of lettuce mentioned in my previous blog post was not on the recall list. I checked with the store and they had already pulled off the recalled produce before I purchased it and I double checked the UPC code. I still threw the bag of lettuce in the trash and my family is staying away from salads for awhile. They closed down a distribution plant that is about 15 miles from us due to a voluntary recall. The whole listeria outbreak is under investigation. I can't wait to plant my garden in the spring, at least we know where our produce is coming from. My husband is wanting to make the garden even bigger this year. I say let's do it.
January was a long month and ended with some unusually warm days. We managed to get outside last Saturday and walk. It felt so good to be outside. I can tell I am out of shape as my stamina is poor. We should have been walking at the university this winter, but we have gotten into a bad habit of hibernating. It was three years ago that we did the half marathon in San Antonio, Texas sponsored by LLS. I still am amazed by my medal. The time has flown by quickly.
The LLS sent us some info on an out of state conference in March. It is not far from us, so we are hoping to attend. We look forward to hearing what is new with lymphoma. I listened to a conference given by the chief medical officer of the American Cancer Society. He made me think about the care my husband had received at a major cancer center.
I am still angered by some remarks that were made to my husband at the cancer center. It has made it difficult for him to decide what he should do about follow up care. Between the patient advocate that told him in 2013 it was no concern of center what happened to him and the doctor that told him he didn't care what happens to his patients, my husband and I are still are in disbelief. Imagine people telling you that they just don't care after you just went through hell to try and survive cancer. He did see a new doctor, but has had no follow up since. The new doctor was respectful, but it is hard to get an appointment with him and suddenly a year and half is upon us.. We think it is just a bad dream. Still pondering what the heck we lived through.
The communication at the center still reminds me of the game telephone. The game starts with you whispering something in some one's ear and then it continues to be told to others and when it gets back to you it is so misunderstood and it is so unbelievably different than what you actually said. I guess we will never understand what the heck was going on. All we know is that we are very disappointed in the patient advocacy department and the social work department. We have learned that we will always make sure that it is perfectly understood and in writing that we can speak for each other. It is the patient's right to designate a spouse to relay information to a medical team. The medical team should respect the patient's spouse and never shame or disrespect them in front of the patient. This is still a very raw and emotional memory for my husband and I. Now that we both feel better and the shock of the whole journey has settled down, we are both angry about what we went through and hope that no other patients were subjected to this kind of treatment. A cancer patient has many psycho social things to deal with and so does the family. It is not a game of shaming them or discriminating against them. It is about letting them express their fears and helping them. I guess people don't get the fear, anger, and anxiety of fighting cancer until it personally happens to them.
I pray that the decisions my husband makes for his future care will be exceptional and the love of god will be with us. No one is perfect and everyone has the right to be heard. We are grateful to the health care professionals who did help us and not pass judgment against us. The past is over but not forgotten. We lift our selves up and we learn from our mistakes and move forward to be better and stronger people.
Life is beautiful !
Elizabeth:)
No comments:
Post a Comment