Mesothelioma Help Cancer News
Facing the Fear that Comes with a Mesothelioma Diagnosis
Fear is a unique emotion. It can be crippling or liberating. It can drive you to do better, or it can inhibit all progress. It can bring families together and unite them against a disease, or it can isolate patients with depression and anxiety. As a health care provider, I have seen this emotion take many forms.
According to researchers, there are three major cancer-related fears: the fear of death, the fear of recurrence, and the fear of stigma, which is the fear of being different, being treated differently and being thought of differently.
Knowing about fear, what triggers it in you, and why you react the way you do can help you deal with it. One mesothelioma patient described to me the sleepless nights she faces leading to her yearly check-up. Every possible scenario goes through her head, she is sure that she will be admitted to the hospital and suffer a long painful, debilitating death, far away from family and friends. When this does not happen she is able to put her fears aside until the next check up. What helps her get through this? She has started writing a journal and reading what she has written in the past. This has helped her realize she has been down this road before and come out okay on the other side.
I recently received a phone call from a patient’s wife, whose husband had a recurrence of his cancer. When her husband was diagnosed their world was, understandably, shattered. They had gone through his treatments and had reached a “new normal” in their lives. Although upset about the recurrence, they both felt they were coping better because of their past experiences from initial diagnosis through all the treatments.
It helps to become an expert on your health and mesothelioma to give you some control over a very frightening time that feels totally uncontrollable. Take the fear and learn about it, recognize it and acknowledge it.
In the past, mesothelioma was seen as a “death sentence.” Even with the progress and the encouraging results that many patients have had, the diagnosis and treatment can lead to changes at work, within your family, and in your daily routine. Not wanting your roles in your life to change can also contribute to fear – fear that you will be treated differently.
Mesothelioma, and any cancer, diagnosis is frightening and scary. Learning what triggers your fear and the basis of it can help you better deal with it. Reach out and get some professional help if needed to help you deal with all you are going through. You are not alone!
If you have any questions about any aspect of your mesothelioma care, please email me at [email protected].
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Finding Peace After Being a Caregiver to a Mesothelioma Patient
One of the many major changes that occur when you lose a loved one to mesothelioma is that you are no longer needed to be a caregiver to them. Most of your time has been spent caring for that person, doing your best to give them everything they need. You have most likely neglected yourself and your personal needs. It’s an easy thing to do, and I think we’ve all been there at some point in our lives or another.
As hard as it is, it is important to realize that you need to take some time to care for yourself. Let others help you in this endeavor, as it will be a difficult time of adjustment and transition. Accepting that you have lost a loved one is never easy, but you need to keep in mind that they wouldn’t have wanted you to forget about you. Your life was precious to them, and they would want you to continue living it to the fullest.
Allowing others to help you grieve is ok; remember that. You don’t have to be alone in your sorrow. So, let yourself be with people who make you happy. Allow yourself to smile again and realize that it’s ok to be happy. It’s ok to always miss your loved one.
I miss my Dad at every second of the day, but I understand now that he is truly in a better place, free from this awful disease. I find so much comfort in knowing that Heaven is only a prayer away. This realization allows me to accept all the joy in my life, while always carrying my father in my heart.
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Each Mesothelioma Patient’s Journey is Unique
The mesothelioma journey is as individualized as each patient’s tumor. Science has come to this revelation in the past decade regarding mesothelioma- everyone’s tumor is as individualized as their fingerprints. Just like each of us has a unique fingerprint, each patient’s journey with mesothelioma is also unique. Patients and loved ones go through different emotional stages at different times.
Dr. Elisabeth Kubler-Ross published a book in 1969, “On Death and Dying,” that started discussions on how people handle personal trauma and emotional upset. She identified five stages – denial, anger, bargaining, depression, acceptance. These are not rigid categories, and individual patterns vary as to when, if ever, a person facing a serious illness will go through each of the stages.
I recently saw a gentleman who was 60 years old who had just had a pleurectomy. During his hospitalization he was quiet, anxious and appeared frustrated overall with his diagnosis, staff, length of stay, and just about everything that he encountered. After he was discharged, I visited him at a temporary housing apartment, and I was pleasantly surprised – he welcomed me into his place and acknowledged that he remembered me. I was so happy to see him and to see how well he was progressing.
His journey with mesothelioma had taken a turn, and he had moved on to another stage of healing. He had a bounce in his step, and his attitude was of gratuity and hope. He expressed that he too was surprised at how well he felt, and how far he had come from the dark days in the hospital. He was knowledgeable about his medications, fluid restriction, and dietary restrictions. He spoke about his length of stay in Boston and was completely okay with whatever he had to do. He was feeling better and he was back in a good place psychologically. I could not have imagined that this content, happy man was the same man who I encountered in the hospital.
Like researchers have realized that every mesothelioma tumor is individual and not like any other, the emotional journey is also an individual, unique, journey. As a health care worker, it is my honor to accompany patients and their families on the journey, during rough times as well as calm times.
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Keeping Advocacy Alive After Loss of Loved One to Mesothelioma
Losing someone to mesothelioma changes your life in a million ways. One way, in particular for me, was how my family looked at itself without Dad. Dad was the steady, kind, thoughtful presence who always put others before himself. Trying to redefine who we are as a unit was a daunting task; I kept trying to picture life going on without him and was unsuccessful.
In the days following Dad’s death, I felt like I was walking through a fog. I knew that it was real, I knew that we were planning my father’s funeral, but I still couldn’t face it. People came to the house and brought meals, cards, and anything they thought we may need; their generosity seemed boundless, but I couldn’t bring myself to properly thank them. I tried to smile when people greeted me, but all I could see was the sorrow in their eyes; they had lost a friend as well.
I was given a lot of encouragement from people who truly didn’t know what to say. I felt as though it was hard for people to see me; in a way, it probably was. What words can befit the loss of a parent? Still, I appreciated their outpouring of love and support, even though I wasn’t sure I wanted to accept it. I felt like if I did, it would make everything more real.
I will never forget one of my dear friends, who also sadly lost a parent, coming to the viewing. She told me that she wasn’t going to sugar-coat anything for me and that things were going to be terribly difficult. The change in my life would impact me at every moment of every day. She told me that I would miss my Dad at both major life events and during normal happenings but that she would be there for me, as would all my friends and family.
Our conversation has stuck with me, and I honestly think that speaking with her that night made me realize that I had to consent to this path that God was leading my family down. Hiding from the fact that my Dad had passed away would hold me back from living my life as fully as I could, and from working to help others in the mesothelioma community.
Allowing something positive to come from my Dad’s illness is exactly what he would have wanted. He would have wanted his family to continue to work to be a positive influence in any way we were able and to support this cause as much as possible.
For my family, the best way to honor Dad is to share his story of faith with others. I feel truly blessed to have this platform to do just that. Thank you for listening to our story.
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Nurses Inspired by Mesothelioma Families’ Strength, Love
Every year at the beginning of June, the International Mesothelioma Program at Brigham and Women’s Hospital holds a memorial service to honor the patients and families who have lost loved ones to mesothelioma. Every year, I leave more in awe of the all-encompassing feelings of love that transcends through the families for their lost loved ones.
The loved ones of the mesothelioma victims share their journey with the illness, and the loss of their loved one, in a way that we all relate to: a personal, intimate way. The staff that knows the patient and family during the snapshot in time they were being diagnosed and treated for mesothelioma, sees a different side of the patients. The man who loved to celebrate anything with a cake and candles, the woman who talked to strangers and befriended them, the romantic side of a man who appeared rough.
How do the families do it? Return and share their painful stories and relive a time and place that holds such painful memories? We look in awe at the survivors and secretly think – no way could I handle what they have handled with such grace and dignity.
You would think that this would be a very sad day. Although there is sadness, there is also hope. Hope that mesothelioma patients in the future can have a long life with the disease; that advances in science will lead to a cure. A realization that hope cannot be the plan, it comes with advances in diagnosis and treatment and research. Progress is being made, although it seems slow, it is in the right direction.
There is also recommitment to work harder, study harder, think outside the conventional way that we have been thinking about mesothelioma. There are now faces and families for the researchers to make that human connection, like the 70 year old man with epithelioid mesothelioma.
We empathize with the families for sharing their stories, we are touched by their generosity of spirit, we pray for them, and we thank them for coming and re-energizing us.
The survivors’ lives are captured in words from a Bono song, “There is no end to grief……….and there is no end to love.”
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