Mesothelioma Help Cancer News
Nurse Encourages Mesothelioma Families to Advocate for Their Loved Ones
I have taken care of mesothelioma patients for many years. To be honest, some patient’s stories stay with me more than others. I recently cared for this woman who had a high school degree and had a pretty simple life. I mean she was not consumed like the average American about having material things and constantly wanting more. We will call her Sally. Sally accepted life on life’s terms.
Unfortunately, she was diagnosed with mesothelioma with a routine chest X-ray. She was not symptomatic and was able to work, but she had become one of the many victims of this dreaded disease. As I cared for her she had been in the hospital for one month after being discharged for a few days to rehab. Her surgery had not gone along as planned, and basically her cancer was unresectable, or in other words, her cancer was inoperable. Sally was short of breath and it was difficult for her to do much. She also had a very poor appetite.
Her family loved her very much, but like her, they all just accepted her symptoms as normal. I felt like there was no one person who was advocating for her. We all know how important nutrition is. Her wound was poorly healed, secondary to lack of nutrition and her disease progress. I felt like I needed to speak for Sally and to help her overcome some of these issues. I don’t think she knew the importance of nutrition, and I felt that giving her some basic information could make a difference.
Although she refused a meal tray, I offered her a frappe and encouraged her to drink it. I even held the cup to her lips so it would be easy for her to drink. Sure enough within a few hours she had drank the high calorie frappe. I consulted a nutritionist to get her input as well. I believed that Sally’s wound could heal, but she would need some dressing changes and careful observation. We called the thoracic surgeon so he could give his input. I guess when I think of Sally, I feel like someone has to watch and advocate for her and for all mesothelioma patients.
The definition of advocate is to speak, plead or argue in favor of someone. There are people who are available to be advocates. Advocates can sometimes be a significant other, family or friend. The nurse can be the advocate while a person is in the hospital, but once they leave they need someone to travel the road with them. It is difficult to think of everything someone needs during a battle with mesothelioma, but having someone fighting with the patient and for the patient can help keep the patient’s recovery progressing.
If you don’t have a family member who can advocate for you, consider asking your primary care physician, friend, legal team or your mesothelioma medical team for support or suggestions.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
Coping to Changes After Death of a Loved One to Mesothelioma
When you lose someone you love, everything about life as you know it changes. I never have dealt well with or been fond of change, and this kind rocks me to my core. When Dad passed away, the home that I grew up in that was always so full of love and laughter, became four walls that encased the memory of the man who made that house a home. Dad built the house with hammer and nails, but also built it into a home with his unconditional love for my Mom and me.
The guitar that Dad used to produce beautiful music that brought joy to so many now sits in the corner, just a stationery object. The yellow coffee cup Dad always drank from hides in the back of the cupboard. Never again will it be found left outside, in the garage, or any of the various places that it traveled on its’ adventures with Dad.
These inanimate objects seem to have lost their “personality” – I must say that sometimes, I feel the same way. The biggest change of my life was losing my father. I know that a part of me left with him that day, but a part of him remained here in its place. The part of me that would have been wracked with so much grief that I couldn’t function, was replaced by the part of him who knew that I needed to try to be strong to help the rest of my family. The part of me who would never have felt like it was alright to laugh again was exchanged for his good-natured, laid back spirit, allowing me to smile at our memories.
I won’t say for one second that I have been brave or courageous throughout this experience; that would be a lie. That being said, looking back on these past five months, I know that Dad is with me, helping to guide me through. Other than losing Dad and attempting to somehow adjust to this new way of life, the biggest change has been the one within myself.
I have realized that it is possible to be strong but caring, sad but joyful, and broken but whole at the same time. These conflicting emotions don’t make sense, but it is possible; I’ve lived it. These are the parts of me and my Dad that have melted into one. Emulating his amazing personality and generosity is a tall order, but one that I intend to reach for. Even the most negative change can spark a positive one.
Dad took care of everything, not just his estate but all the memories that he will leave behind.
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Communicating with Mesothelioma Medical Team Can Help Ease Discomfort
“I am a little short of breath, but I didn’t call anyone because I was thinking it would get better.” “I am still having pain, but I thought it would go away.” Two very different patients; two very common problems for patients with mesothelioma.
This past weekend I saw two patients who had both undergone surgery a month ago, and both had very different symptoms that could be helped. Except they did not bring these issues to the medical team’s attention, instead they suffered in silence at home until their next scheduled appointment. While I know it is scary to leave the hospital where you are surrounded by professionals who know what is typical and what is not, it is important that mesothelioma patients be aware of subtle, bothersome changes that can be treated before they develop into bigger problems.
Recovering from surgery is a very stressful time. Dealing with pain, dietary restrictions and exercise guidelines are tough enough, but add to them management of suture lines, fluid balance, weakness, and even bowel function, and patients can easily become overwhelmed. Although a patient may not know what is “not normal” after surgery, any time you are concerned about something, it is best to call your medical point of contact to help allay your fears, and maybe even get relief through a medication or additional information.
The first patient had developed shortness of breath over a couple of days. In her case, she was not discharged with a diuretic- intentionally. But after a call to her doctor and a short discussion, a prescription was ordered and she was “much better” the next day.
For the patient suffering from pain, ongoing discussions between him and the medical team has allowed the doctor to monitor dosage and adjust medication as needed. Adding an additional medication, taking the medication as needed, and developing a plan all helped to ease the pain and allow the patient to rest easier.
Every patient’s journey with mesothelioma is different, but all of them will experience bumps along the way. Open communication with your medical team, your family, and your caregivers is essential. Your team will be responsive to your needs – but they need to know about them. If something is bothering you, ask. Your team wants you to feel the best you possibly can!
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please contact us.
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Family, Friends, Coworkers Come Out to Celebrate and Support Mesothelioma Patient
After seeing what Dad went through in the hospital after his surgery, the mental and physical stress he has been under, and not being able to work, I decided to plan a benefit for him. Throughout the summer I gathered items for baskets through many of the local companies in my parent’s hometown and items from places down at the shore. I contacted good family friends of ours, Lex, Patty, Jessie and Carrie Wilkinson, who just opened a sports bar very close to my parent’s house named Dub’s on 5th. I also contacted Sal Ritz, a high school friend of my parents who has his own band, and plays locally at many different events. They were all on board and wanted to help in anyway they could.
August 14 was the day I had planned. I did not go into much detail with my parents about what this night would be like – I just told them that I wanted to do this for them and to just show up. I wanted this to be an evening of happiness, and to enjoy being around friends that my parents haven’t seen in years. The main reason for this benefit was to get family, friends and neighbors, new and old, all together. A lot of our family and my parent’s friends were either unaware that Dad was sick or they did not know how his treatments were going.
After all the preparing, the day finally arrived. A few close friends of mine came to my parent’s house with me to finalize the baskets and get everything in order. I arrived at Dub’s on 5th with my brothers and a few friends to set up. The Wilkinsons helped me get situated and were very warm and welcoming to me, as always. To my surprise a few of my dad’s old coworkers and friends were there already. Dad’s old coworker introduced himself and told me how he remembered me as a little girl running around. That just shows how long it’s been since Dad has seen some of his friends, and they had no idea what my dad was going through.
People started pouring into Dubs and buying tickets for the baskets and the 50/50. Within an hour the place was packed with so many familiar faces. Even all my friends from Philadelphia and some of their families made the two-hour drive to be there. Sal Ritz started playing while everyone was ordering dinner and drinks as well as enjoying each other’s company.
My parents finally arrived and walked into Dubs. When they saw the people in the room they froze and their mouths dropped. They had no clue what to expect, and they were blown away by the turn out. There were people there that they haven’t seen in 20 years that came to show their support to my parents. The smiles on Mom’s and Dad’s faces were priceless. After all the stress they have been under in the months prior, it was so good to see them smiling, having conversation, and enjoying company of everyone there. My dad is a man of few words at times, but he was so touched by the amount of people that were there for him. He stood up with Sal Ritz and thanked everyone for coming and I remember him saying, “This night shows me how much support I really have and I couldn’t be more thankful for that.”
Dad was able to stay until after the announcements of the prizes; although he said that he wanted to go before them because he was getting tired. He was happy to see who some of the prizes went to: Box seats to a Phillies game went to two of his best friends growing up, an autographed Flyers photograph to a new friend, a fruit basket to an old neighbor from when he was growing up, and many more.
This night helped raise awareness for mesothelioma and also raised money to help fund the travel expenses to and from Philadelphia for Dad’s treatments and toward some medical bills. But most importantly, it showed my parents the support that they have. So many people were offering to help in anyway that is needed.
This is the positive support any family dealing with cancer needs. When you are going through tough times, just the gathering and closeness of family and friends can lift you up. I can definitely say that this night lifted my family’s spirits and showed us the huge support that we really have.
Gratitude for Mesothelioma Specialists on National Doctor’s Day
March 30 marks National Doctor’s Day in the United States. The goal of the day is to celebrate and recognize the physicians who so valiantly serve Americans with mesothelioma, and to thank them for their contributions. From my point of view, this is a beautiful way to acknowledge the medical community and show them our sincere gratitude for all that they do.
Many doctors spend countless hours working – putting their own interests aside for the good of their patients. Whether they are in the office having clinical visits, doing research, speaking at an event, or completing continuing education, they are constantly striving to be better for us.
We here in the U.S. are so lucky to have world class doctors at our fingertips. My family has become well acquainted with some of them over the past two-and-a-half years and we do recognize that we are blessed by them. From Dad’s primary care physician in southwestern Pennsylvania to the mesothelioma specialists in New York City, each one has been a beautiful example of what a doctor should be.
We have been treated wonderfully by these individuals throughout this entire journey. Dad was treated as a person, not a number. Every question was answered with the utmost respect… even when I asked some obvious ones that made my husband laugh and shake his head. These physicians truly advocated for Dad and for our family. They did their best to understand our nerves and apprehensions. They shared in our joys and in our sorrows.
I have been lucky enough to see the human side of medicine through these amazing men and women, and I thank them for their tireless work and dedication from the bottom of my heart. Reach out to your friends and colleagues in the physician community and let them know that you appreciate them. Their life-saving work should not go unnoticed.
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