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dealing with mesothelioma

Individuality

Eleanor Ericson Mesothelioma NurseWe have learned something from every patient or family member that we have met over the years. The lessons have been as diverse as the patients and family members themselves. Some have been cultural lessons; a great deal has been about human nature. how relationships are affected by being diagnosed, and how we can help and support them has been an ongoing focus of ours. Relationships and how a cancer diagnosis affect the reactions of family members, can be a source of both comfort and stress during their journey with mesothelioma.

Sometimes when faced with big, uncomfortable, situations we become overwhelmed. These feelings can lead to inaction, denial, or thoughts of overwhelming despair. The Cambridge English Dictionary has a definition of overwhelming that fits for patients diagnosed with malignant mesothelioma. It is, ”1. difficult to fight against 2. very large or very great 3. very great or very strong.”

Being diagnosed with a rare cancer can be overwhelming. The person who is diagnosed is dealing with his or her own emotions. Often, as we have witnessed they are the one in a relationship that usually leads the couple or family. The family, or the other person in the relationship looks to them for direction. As every relationship is unique what we observe to be a couple supporting each other or not supporting each other can be the way the relationship works. Not all relationships are “healthy” or supportive. A diagnosis of cancer can be a stress that is added to an already stressful situation.

At a recent meeting with newly diagnosed mesothelioma patients, one of the patients and his wife were in attendance. As the meeting progressed the wife had to leave the room. The information, what they had already been through to come to a mesothelioma center was too much for her. The patient explained that they lead a simple life and coming to the city had been something that had been difficult for her. Faced with the loss of her life partner she wanted to go home to their life.

When faced with big challenges in life, we all have our own ways of coping. We lean on those around us for affirmation that we are choosing the right path, that what we have decided is what is best for us. Malignant mesothelioma can seem like a mountain to climb, with no guarantee that you will make it to the beginning hill. This journey starts with small steps.

While talking after the meeting with the wife who was overwhelmed at the meeting, once again we realized that the journey with mesothelioma is different for everyone and making the first steps are often the hardest. The difficulty that they had experienced getting to the center, hearing the information, realizing what they were faced with had overwhelmed her. The logistics of treatment, how to return to the center, where to stay, the financial implications were all adding to their stress. Talking and drawing on the experience of the staff made it seem possible. Leaving with a plan had helped.

As our relationships are unique so is everyone’s mesothelioma. The one size fits all approach does not work for treatment of mesothelioma nor does it work when supporting patients and families.

You Are Not A Number

Lisa Hyde-Barrett, RN Mesothelioma NurseAs people progress through their journey of Mesothelioma often they believe that they just become another patient or a number. From the beginning of their journey all they hear are numbers. There are 3000 cases of Mesothelioma diagnosed a year. Your odds of survival are x percent. There are so many numbers thrown around that no doubt people wonder how they even count as a person.

Well I disagree. As we visit Mesothelioma patients, we began to know them as individuals and develop relationships with them. These patients become part of our daily thought process. We worry for them, we worry about their mental health, their own thoughts and families. Over the last few weeks this has reminded me how much we and other medical professionals are emotionally invested.

As I sat today and spoke with a doctor how various patients, outlooks, patient families, and upcoming worries it reminded me of the continual thought process that is poured into each of these individuals. We used to hear from a physician who would say you may feel like you are sitting and waiting for something to happen, but please know that things are happening despite what you see or don’t see.

When you lay awake at night and cannot fall asleep know that someone is thinking of you as well. When one patient starts their medical journey, the emotional investment begins. The mental and physical investment begins as well, but so much is poured into each and every case.
To be honest with you we speak about patients and families as if they are our own families or loved ones. This is a long journey and we see you at the most vulnerable state and try to build upon that. I don’t know of any other disease that commands such an investment that the mesothelioma team gives to each patient. It really does not seem like it is just the nurse, but it encompasses everyone from the social worker, to the chaplain, to the oncologist, surgeon etc. to the staff who can run the hospitality house.

Mesothelioma can make you feel alone, isolated and fearful. Please know you are not just a number, you are a person who someone cares for, a medical team who is working diligently to improve your life, and above all you are a fighter. You were diagnosed with this disease, which was completely baffling to you and your loved ones but there are medical centers out there who care and want you to be better. Yes, we all know there is no cure but there are treatments, that can help provide relief from symptoms and extend your life. Know that you are not a number, you are a person who is important to many.

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