Author: Lisa Hyde-Barrett
CaringBridge Keeps You Updated on Mesothelioma Patient’s Progress
I have recently been following a friend through CaringBridge.org. It is a free, web-based site where family members can inform friends about a patient’s status. I think it is such a useful tool for families to utilize while their loved one is sick. It is difficult to call friends and family to give updates at the end of the day, when all you really want to do is take a deep breath and close your eyes. But with CaringBridge, you can type in updates when it is convenient to you, and those following you will receive an email indicating the information has been updated.
CaringBridge is a non-profit organization that allows you to write updates about your loved one and explain the patient’s status. In addition, the site also allows users to keep an online journal, offer a guestbook where friends and family can check-in and leave comments, and even maintain a personal planner where friends can sign up to help you in your day-to-day tasks such as picking up a prescription, or taking your kids to sports practice.
The beauty of this is that you don’t have to deal with the questions that come at you from everywhere – you can direct everyone to your CaringBridge site for the answers. People can sign the guestbook and offer words of encouragement, prayers, pictures or just support. I have to tell you, I am constantly waiting for the next update on my friend. It is as informative as you want it to be.
I know that where I work a lot of families use this site. It allows people to update their loved ones at home and around them. Oftentimes, patients will go back and read the comments. It is a good way to keep a diary of how you are enduring your journey. I have spoken with people about this site, and they seem happy that they have utilized this program.
If you have a loved one who is battling mesothelioma, consider using CaringBridge as an option for keeping your friends and family updated on his or her progress. The site has privacy settings to allow you to manage who can see the information.
For more information see CaringBridge.org.
Also, if you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
Mesothelioma Survivors Learn to Manage Their Chronic Condition
Recently, I was talking to a patient who has been battling mesothelioma for the past 3.5 years. During our conversation it struck me that in his case mesothelioma has become a chronic condition that he is now living with. The good news for him, and other long-term survivors of mesothelioma, is that progress has been made. Mesothelioma treatment is prolonging some people’s lives past the grim statistics of survival with mesothelioma.
According to the U.S. Centers for Disease Control and Prevention, cancer is the second leading cause of death in the United States, exceeded only by heart disease. In 2010, nearly 575,000 people died of cancer, and more than 1.45 million people had a diagnosis of cancer. Mesothelioma comprises approximately 1% of these cancers.
What does it mean to have a chronic condition? About one- fourth of people with chronic conditions have one or more daily activity limitations. Chronic diseases are the leading cause of death and disability in the U.S. Heart disease, cancer and stroke account for more than 50% of all deaths each year.
For this mesothelioma survivor, what living with mesothelioma means to him is dealing with pain, recurrences, infection, chemotherapy, and radiation. It has been a difficult road for both him and his wife. They have spent countless hours at appointments with many doctors, have endured too many procedures, and have ridden the proverbial roller coaster with their emotional highs and lows. Yet, through it all, he has seen another grandchild born, and has enjoyed many special times with his family. Would he do it again? Today he would, but ask him on his down days and he might not be so sure.
As you give thanks during this holiday season make sure to include the mesothelioma patients that are forging ahead and blazing a trail as the search for a cure for mesothelioma continues. No one mesothelioma patient is a statistic, they all have stories that we are privileged to hear. Thanks to all of the mesothelioma survivors for their courage and inspiration.
Know more about Mesothelioma and how you can deal with it.
Mesothelioma Nurse Explains Importance of Taking Prescribed Medications
Mr. W is an intelligent, 62-year-old man who recently had a pleurectomy for treatment of his malignant pleural mesothelioma. His post surgery course was smooth, with no unusual complications. He has a very supportive wife and children. He seemed to understand the importance of following the post-op instructions. He was enthusiastic about walking, understood and complied with his fluid restriction, knew his medications, and pain was not an issue.
His beta blocker, ASA, lasix, and magnesium, had all been reviewed with him, and he had taken some before his surgery and immediately after discharge from his surgery. Knowing all that, and the support he had from both his family, and his home primary care physician who had referred him to the mesothelioma center, why then, when he got home, did he stop taking all his medications?
Adherence refers to how consistently a patient takes his medication exactly as prescribed. The reasons people don’t take their medicine as prescribed are varied: the patients do not want to deal with the side effects; patients don’t feel well enough to take them; they can’t see the benefits of the medication; or the cost of medications is an issue.
Another reason may be that the patient simply forgets to take meds as prescribed. Still other patients are actually in denial believing if they take the medicines then there really is something wrong with them. Yes, your cancer is real. But taking your medicines can help you fight it.
Studies have shown that for patients with chronic conditions like high blood pressure and diabetes the non-adherence rate can be as high as 50%. Cancer has now progressed to a chronic disease, and with that distinction comes other issues.
In asking Mr. W why he stopped his meds, he did not really have an explanation. He had not discussed it with either his family or his health care team. Intellectually, he knew the reasons and importance of taking his medications, but he stopped taking them. Upon further discussion with him, though, he revealed his depression with his cancer diagnosis. He agreed to talk to his PCP and get some help.
Adherence to the treatment plan is important in the care of all patients, especially mesothelioma patients. Nurses realize that every patient is different and every circumstance might not be what it appears. Being open and honest with your health care team is vital to ensure that your mesothelioma is being treated according to your needs.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
Comparing Your Mesothelioma with Another Patient’s May Not be Helpful
On Black Friday a lot of people shop, but only after they study the ads and plan out carefully where they are going and what they will buy. For some, it is a fun tradition that kicks off the start of their holiday shopping. For others, it is the comparison shopping and the hunt of a bargain that drives them. Mesothelioma patients often prepare for their treatment in much the same way – studying articles, stories and their treatment options. However, many also compare their mesothelioma with other patients.
Recently, I heard two mesothelioma patients discussing their experiences. Knowing that both had different types of mesothelioma, had different therapy, and were at different stages in their journey, I was surprised at what they had taken away from their experience so far. It is understandable that people want to compare how they are progressing with someone else that also has mesothelioma, but it is important to keep in mind that everyone’s case is different.
There are many studies that support the importance of support groups in dealing with life-threatening diseases. The groups can provide a lifeline and much needed hope to the patient, family, and caregivers during this time. Many survivors of mesothelioma have had more of a positive impact on patients and families than just about anything or anyone else.
It is important to remember that mesothelioma comes in different sizes and shapes. The location of the primary site of the tumor can be pleural (lung), the most common making up around 85% of malignant mesotheliomas; peritoneal (abdomen) comprising around 5% of tumors; and pericardial and testicular, both very rare, making up the other potential cancer sites. Once the location, is identified the type is tested for either epithelial, sarcomatoid or mixed. Once identified, the disease is staged by biopsy of the surrounding lymph nodes. From there the results are compiled and the best treatment is suggested. Some possibilities include chemotherapy, surgery, radiation, complementary therapy, or alternative therapy.
Like the bargains on Black Friday, remember that your specific mesothelioma is different than someone else’s, and that different people respond differently to treatments. Just because a treatment modality did not work for someone else, doesn’t mean it won’t work for you. Be positive and trust your treatment team.
Mesothelioma is no bargain. But neither is advice that is not accurate. Take a lesson from the expert shoppers, compare and study all the facts about what you might accept as fact, and hunt for information from reliable sources.
Mesothelioma Specialists Offer Best Care, According to Nurse Lisa Hyde-Barrett
After last week’s Thanksgiving holiday, I am going to write about being thankful. I am sure it does not take long for all of us to come up with a few reasons to be grateful. Of course, I am always thankful for my family, my friends, and my health. I recently had something happen to me that was not so pleasant, and I was on the other side of the fence. I was not the healthcare professional, I was the patient.
It gave me new insight into just how people must feel when they are dealing with a new medical condition. Most often, people feel out of control and uninformed when they or their loved ones are sick. Perhaps, even powerless. These feelings can be scary and overwhelming. But you don’t have to feel that way.
I work in a big facility that is a world renowned mesothelioma center. Oftentimes people make comments about how aggressive we are as a medical facility. Yes, we are aggressive. We are like other facilities around the United States that are vigilant in fighting this disease. We don’t give up easily, and we are in it for the fight.
There are so many mesothelioma patients who may not think about going to a specialist or they think their primary care physician can give them the best care. They are right, they will get good care. But they may not receive the newest, cutting-edge care specialists can offer who work with mesothelioma patients on a daily basis. When things are not going so well, patients can be thankful that this group of physicians nurses and scientists can brainstorm together.
I always tell patients who come to our facility that one thing is for sure – when you go home you will know that there was no stone left unturned. This group of professionals offers every bit of treatment they can possibly offer. Some journeys are long and stressful regardless of the care you receive. I just recently visited with a patient from three and one-half years ago. Yes, he does have mesothelioma, but he is up every day thanking his lucky stars that he has another day with his family. Of course, he has his aches and complaints, as we all do. Currently, he is receiving radiation and he has started to feel relief. I know every situation is different, and not all end up so favorably. I sure am grateful that I am associated with a top mesothelioma center that is aggressive and in it for the fight.
If you read this, please take yourself to a specialist who knows mesothelioma, and can possibly make a difference. I cannot tell you how many people I cared for that they were told to get their affairs in order, yet here they are living – three, five, even 10 years after their original diagnosis. One thing is for sure – this is your life and you deserve the best care. If you think I cannot travel because it is too expensive or you are too sick, there are avenues to help you. Just contact me and let me talk with you.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
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