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During Asbestos Awareness Week Daughter of Mesothelioma Victim Reaffirms Commitment to Educating Others About Asbestos
“You worry too much about asbestos.” That’s what I’ve been told. To hear that I worry too much about the presence of the substance that killed my father is insensitive, cold, and inherently wrong. There is not enough concern about asbestos, which is why mesothelioma is a problem in the first place. Speaking these words to someone who has felt the snare of this disease is like pouring salt in a wound. It is painfully indescribable.
How can I explain the hurtfulness of their words? I can’t see a way, because they don’t know how I feel. They don’t feel the overwhelming sadness when I look at my daughter, knowing that her grandfather never got a chance to meet her; or the burden I carry silently to make sure that she knows everything about him that she possibly can.
They haven’t seen the countless times I’ve cried when no one was looking, just because I heard a song that brought back a treasured memory. They never picked up the phone to call my Dad to tell him something that would make him so proud, only to realize that no one is going to pick up. They haven’t noticed all the times I’ve needed them, but they just weren’t there.
They don’t understand my commitment to the mesothelioma community, and how many stories that have been shared with me, causing me to need to do more. These kinds of comments break me, but motivate me at the same time; it’s an odd juxtaposition.
No matter what, mesothelioma and its root cause will always be on my mind and the minds of those who have been impacted by this torturous cancer. We’ll pick up the slack of worrying for now…but we hope and pray that you’ll learn to care, too.
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].
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.
Mesothelioma Treatment Goals May Change as the Disease Progresses
We are all goal-oriented in some way, although some more so than others. When patients are diagnosed with mesothelioma, their goals of care are discussed. No one wants the mesothelioma patient, or their family, to suffer with interventions that are not effective. The goals of therapy are individual and are, ideally, made jointly with the mesothelioma team. While goals established in a business environment usually have a timeline and benchmarks attached, for mesothelioma patients, it is not that clear cut.
When first diagnosed with mesothelioma, many people are determined to fight. They make it their mission to learn all about the disease: where to go for treatment, clinical trials, what can do they, what can their family do. Unfortunately, for many diagnosed with mesothelioma, disease progression can be rapid.
A patient I cared for this week had been diagnosed over two years ago. He and his supportive family have fought mesothelioma aggressively. Together they had been a force. Their goal was always to keep going, don’t give up. The patient had enjoyed some good times with his family and made some memories, but time and disease progression had taken its toll. He had lost weight, did not feel well, was in pain, had no appetite and was continually nauseous. He had also changed, he was accepting and quiet. His family was not. They continued to use their resources and energy to encourage the patient to keep fighting aggressively.
As the patient’s disease had progressed, the options for his therapy became limited. At this point it, it was time to take all that energy and redirect the goals of his care. Just as the family and patient had been a force of nature fighting the disease, it was now time to become a force to fight the pain and the nausea, and to make him comfortable.
People with mesothelioma all have a unique story to tell. Unfortunately, there is not a cure at this point in time. Goals should be set with the mesothelioma team, and as the individual’s disease progresses, the goals should be re-established, as needed.
My patient and his family did re-direct their goals. Now, he is comfortable, home, and they have had conversations that they never had while fighting the disease. Conversations that will become memories as time goes on.
When the Changes Caused by Mesothelioma Slowly Creep Up
When you see someone everyday as they undergo treatment for mesothelioma, the physical changes can start gradually. As the caregiver, you accept and adjust to the changes. As your loved one changes over time, daily, you become accepting of them, and sometimes you don’t even see them or you discount them as being anything. When you are in the throes of caring for someone, you can lose perspective on how sick someone has become. You become accustomed to the symptoms of the disease progressing.
Maybe it is shortness of breath, pallor, swelling of the lower extremities, or the patient’s physical activity that has declined. When you step back and look at your loved one, away from the hospital setting, back in familiar settings, sometimes it is shocking, that you had not recognized the changes that are now glaring. How did you not see these changes?
Probably because you have been busy administering medications, providing comfort, pushing for more and better nutritional intake. It just happened. But now others are asking why you didn’t let them know, why you didn’t call or why you kept saying that everything is fine.
The truth is that the caregiver did not see it. Many people have been in this situation: the reality is that the disease is progressing. This is difficult to see and accept.
At this point, it is important to take a deep breath. Re-focus on fighting the symptoms, but accept what you cannot change and understand that time may well be limited and precious. By just being there you are providing emotional comfort and you are helping. Express your feelings, reminisce about the past, sit quietly.
Time is precious, and it only comes once, don’t miss 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.
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