Category: Nurse’s Corner
Mesothelioma Nurse Encourages Patients to Find Their Strength
Most patients who have mesothelioma will need to go to rehab facilities after surgery, or at different points on their journey. These experiences are as varied as the patients themselves. Recently, while visiting a patient in rehab, I noticed a sign that read, “Find Your Strength.” Having been to this rehab many times, it struck me that I had never noticed this sign before.
Reflecting on the message, and the mesothelioma patient I was visiting, it struck me how much physical and emotional strength is required to deal with mesothelioma. The physical strength can be quantified by how the patient is breathing, his oxygen level, how well he is walking, appetite, pain level, and generally how they are feeling. The physical strength to deal with mesothelioma often comes with time, therapy, and patience.
The strength to deal with mesothelioma on an emotional level, however, can be daunting. What are your coping mechanisms? Are you a talker? Do you exercise, run, swim, walk, and did that help you to deal with stress before your diagnosis? Do you know what your emotional strengths are?
During crises in your life, you deal with things that you never thought you had the strength to get through. Your support system may be helpful at this time, but you need to let them know what you need.
The mesothelioma patient that I was visiting seemed to have found his strength. Tucked away in a sunny corner of his room, with his eyes closed listening to his wife reading to him, I found it hard to believe he was the same person that had left the mesothelioma hospital one week ago. He had been weak physically and emotionally withdrawn. He had reluctantly agreed to rehab.
Now, the scene in front of me was of someone at peace. His wife was reading from a book of spiritual readings. He appeared to be reflecting on the message and her voice. As the visit progressed and we talked of all they had been through, he made a request: “Say a prayer for me.” As I responded yes, the sign at the entryway came to mind.
“Find Your Strength.” This patient and his wife found theirs together.
Deja Vu: Woman Faces 2nd Mesothelioma Diagnosis in the Family
One of the most rewarding parts of being a nurse is meeting different people, hearing their stories, and learning from them. This past week a couple in their late 60’s, he has pleural mesothelioma, were sharing how mesothelioma had been a part of their lives for quite a while. Unlike most victims of mesothelioma, though, they had been aware of the devastation that mesothelioma causes: the woman’s father had died of mesothelioma nearly forty years ago.
At that time, her father was told by his doctor to go home and get his affairs in order. She remembered how devastating the news, and his subsequent death, had been on her family. Her father’s diagnosis turned into a death sentence that happened within six months of his diagnosis.
In the fall of 2015, after her husband had not been feeling well, he was diagnosed with pleural mesothelioma. He was told by his local doctor that he should go home and get his affairs in order. But once this wife and daughter of mesothelioma victims was able to process the latest news, she sprung into action. Her husband’s diagnosis and care was going to be different.
Thirty years ago we did not have the internet, and this woman refused to believe that no progress had been made and that, still, nothing could be done. She found some very helpful web sites, researched some leading doctors in the field, and attempted to find any clinical trials that might apply to her husband. Together they set their plan into motion.
She also located support for herself and her husband in dealing with mesothelioma. None of these resources were available to her father or her family so long ago. As she talked about what options they now had with mesothelioma, she shared her shock that her husband and father had been told the same thing. Now, with the benefit of the internet, and progress with mesothelioma, they felt they had options.
Listening to her story, I was struck by how much still needs to be done to help the newly diagnosed mesothelioma patient. It is not easy to wade through all the on-line information, it it time consuming and not all the information is current or accurate. Clinical trials are sometimes difficult to understand, and the process to becoming enrolled in a trial, and researching options can be overwhelming. Dealing with a new cancer diagnosis and all the changes that brings in your world is a very stressful time.
The chances of a woman having a father die of mesothelioma and then her husband being diagnosed with the same disease have to be astronomically low. But this time the woman and her husband have different options and are going to fight back. Hopefully, the outcome will be much different.
If you have any questions regarding any aspect of your mesothelioma treatment, feel free to email me at [email protected].
Know more about Mesothelioma and how you can deal with it.
The Uncertainties of a Mesothelioma Diagnosis
Receiving a mesothelioma diagnosis, for some patients, is like having a bomb explode in their life. It is unexpected, unwanted, and destroys the way their life had been going. It also wipes out any future plans they may have had.
Recently, this point was made by clear to me by a couple, when the husband was diagnosed with mesothelioma. He explained that his new world, the mesothelioma world, is like being on another planet. His sense of community is different, the language is different, terms he had never heard before are now too much a part of his vocabulary. And his friends and family cannot really help them.
As I listened to the couple talk about their experience with mesothelioma, they spoke about what their journey had been, and where they thought it might go. They were unsure of what was really in store for them. They are an open-minded couple, but the fear of the unknown makes everything hard to plan for. Not knowing what to expect, or how the man would react to treatment was overwhelming.
He was considering participating in a clinical trial, but their list of questions was growing. What does that clinical trial involve? Will insurance pay for it? How much travel would be required? What are the unforeseen expenses? And most importantly, what will it do to him physically?
Some of these questions can be easily answered. The questions regarding the specifics of the clinical trial, like expenses and travel, can be easily answered by the team conducting the trial. But how his journey would go, how he would react to treatment are questions no one can answer for them.
Emotionally it’s hard to keep up a positive attitude and mental fight when there are so many uncertainties. As the two sit and wait, we concentrate on those things that are in their control. For example, nutrition.
They can work hard to increase their focus on eating good, solid food to maintain the man’s weight. Another area that they could work on is exercise. Walking and moving around is a great tool for keeping up energy levels during treatments. Sleep hygiene was another area that he can focus on. They can also look into some mind-body exercises such as meditation, and alternative medicine like acupuncture or Reiki. When things seem out of control it can be encouraging to spend time exploring those options that can be controlled, if just a little.
Every journey begins with one step. It is hard to be on the mesothelioma journey, but it is important to work through the experience, and to reach out to friends and family and your medical team to find the support to help manage the experience.
If you have any questions regarding any aspect of your mesothelioma treatment, feel free to email me at [email protected].
Mesothelioma Nurse Hopes for Good Things from “Moonshot” Inititative
Recently, during President Barack Obama’s State of the Union address he announced the “Moonshot” program, led by Vice- President Joe Biden, to help “cure” cancer. There have been other wars on cancer, but research had yet not evolved to where it is today. President Obama pledged $1 billion to fund the program over two years. We applaud this initiative and hope that the spending is approved swiftly by Congress.
As mesothelioma victims and their families know, research, like clinical trials, takes time and money before the potential promising therapy can be offered to patients. The Food and Drug Administration’s approval process, together with the stages of the clinical trials’ process takes an average of 10 years to bring a new treatment to market.
This 10 year timeline reminds me of a woman from Minnesota who is celebrating 10 years on her journey of living with mesothelioma. She has shared her journey with so many others, supported many caregivers, and has been very open about her thoughts and fears. Some of the attributes that she possesses – her positive attitude, the fight to never give up, faith, unwavering family support – we have seen in other mesothelioma patients who have not survived 10 years. What makes her a survivor?
At this point no-one knows. There are theories, maybe her age, cell type, operation that she had, or timing. Does her continuous giving back to others somehow make a difference? The “moonshot” initiative leaves us with the hope that ten years from now, this same woman will be explaining to a large group of long-term mesothelioma survivors, how she has lived a full, blessed life.
We wish her many more years of good health and happiness!
Know more about Mesothelioma and how you can deal with it.
Home is Sometimes the Best Place for Mesothelioma Patients
Home is where the heart is. There is no place like home. Home sweet home. One could say these are clichés, but I would disagree. We all say them, but sometimes it is what makes the difference.
We recently took care of a patient, who, unfortunately, had more than his fair share of complications. He was discharged from the hospital, to the local hospitality house, but he really had a tough time of it with an inability to sleep, pain, and generally feeling miserable all the time. When I visited him there he kept telling me how fatigued he was, and what an effort it was to keep his eyes open.
With a lot of encouragement he agreed to be readmitted to the hospital. His wife was worried that he was not emotionally prepared to go back to the hospital, but with her support and encouragement he agreed. He received IV hydration, his pain medication was adjusted to alleviate symptoms, and after a few days he was discharged.
The team agreed that going home this time would be the best medicine for him. The first afternoon, he slept five hours in his own bed, and he continues to sleep well each night since he has been home. He has also begun to do light housekeeping, including vacuuming. Yes, he was tired but he is doing very well. The familiar surroundings are giving him a big emotional boost.
Sometimes going home is just what the mesothelioma patient and family need. It’s the emotional part and stress that can really weigh us down and keep us stuck. The key is to get out of that trap and do something about it. His wife was his support and with her constant encouragement, he was able to persevere through this part of his mesothelioma journey.
Situations like this one are what keep the mesothelioma team energized. It really is so rewarding to hear of someone doing well after his struggle. This makes everyone feel good about what we do. If we could say thank you to all the fighters of mesothelioma out there, we would. If we could say thank you to all the caregivers out there, we would. We are in it together and we could not do it without you.
Know more about Mesothelioma and how you can deal with it.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now