Category: Uncategorized
Mesothelioma Widow Adjusts to New Routine
Day-to-day life has changed greatly for my whole family since Dad passed away, but no one’s more so than Mom’s. She and Dad spent all of their time together and she has had to adjust to not having him always there.
Every morning, my parents sat and had coffee. Now, Mom has a cup without him. They would go and run errands together – everything from going out to eat to going to the post office. Now, these are things that Mom has to do by herself.
Little things that Dad always took care of now fall to Mom. Dad always cut the grass, took out the garbage, fixed anything and everything that might need fixing. Thankfully, other people have been filling in to help out with a lot of these kinds of things, but it was still different when Dad would do them.
Mom has been spending a lot of time visiting us at our home, spending time with family and friends, and doing her best to enjoy her new retirement. But it’s still not the same. There will always be a void there that only Dad could fill.
I have mentioned many times how much I admire my Mom and how strong she is. She inspires me every day to do my best to handle every situation and challenge with grace. Please pray for her and for all who have lost a loved one. Every one of us needs your prayers.
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 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.
No Regrets for Family Who Lost Loved One to Mesothelioma
The natural human reaction to losing a loved one is to start asking “what if?” You start to have regrets. You wonder why you didn’t stay five more minutes during a visit, why you hung up that phone call, or what you could have done to protect the one you lost. Living with regret is something that can have a negative effect on every aspect of your life. Try to remember that someone that loved you would never want you to live with that awful feeling.
Life has a funny way about it. It keeps going on for some when it ends on earth for others. Dad had been diagnosed for one year and eight and a half months when he passed. One year and eight months to the day after his surgery. Looking back, I know that we did everything that we could to help him fight mesothelioma.
My parents traveled constantly for surgery, doctor appointments, a clinical trial, and radiation. They were so hopeful with every good result. We researched and read as much as we could about new treatment options, side effects, and others who were also battling this horrific disease.
Losing Dad was the most heartbreaking event of my life, but we can take comfort in knowing that we literally did everything that we could to give him the best quality of life possible while he was sick. Dad promised me that he would never give up, and he didn’t. He is an inspiration to me and I am so proud to have the opportunity to share his story with so many. His faith is what carried him through, and has allowed us to carry on knowing that we gave it our best. My prayer is that we may all find comfort in our journeys, no matter what they may be.
Free Mesothelioma Patient & Treatment Guide
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