Author: Lisa Hyde-Barrett
Managing Your Emotions When Mesothelioma Puts You in the Hospital During the Holidays
When thinking about the holidays, most people picture themselves celebrating at home surrounded by family and friends. We often have very high expectations for the holidays and put a lot of stress on ourselves in order to make things perfect. A lot of people have traditions involving family, friends, and their comfortable home. When life or illness upsets these rituals it can be upsetting, leaving some people dreading the holidays that they once enjoyed.
For mesothelioma patients undergoing treatment in a distant city, it can be difficult to be away from home during the holiday season. How do mesothelioma patients and families, and anyone else who finds themselves away from home at holidays, cope? Some of the suggestions that other patients have found useful on their own mesothelioma journey may help.
First, acknowledge your feelings: it’s okay to feel sad. Allow yourself to acknowledge that it is difficult. This illness is not something that you can plan for or control. It is a lot to deal with a serious health diagnosis and the holidays all at once.
Reach out and seek support – you do not have to be alone. Often the social worker at the hospital, or the hospitality home that you may be staying at will be aware of others in the same situation. The chaplaincy service might also have ideas on how to celebrate. Planning ahead can make it easier for you. If your loved one is in the hospital, see what is available for the patients there. Hospitals have holiday dinners to offer their guests, and sometimes friends or relatives can join in for a small celebration. If they want to stop by, let them. Even if just for a short visit. Now is not the time to turn away people that genuinely want to help or visit.
Sometimes in situations like these you meet people and form bonds that are unexpected and welcoming during the most difficult time of your life. Be open to sharing your holiday with others that might be on the same journey.
There are no easy answers. Holidays can bring a vast amount of emotions for people. Try to focus on having the best holiday possible!
Mesothelioma Nurse Thanks U.S. Veterans For Their Service
Veterans Day, November 11, 2017, is now in the books. This was the 64th time we have taken the day to honor U.S. Veterans who served our country. Some honored our veterans with memorial services and parades. Businesses and restaurants offered free meals, movies, or other services to show thanks. Countless Americans took the time to say thank you to the people they know for their service.
What many people don’t know is that of the 3,000 Americans who are diagnosed each year with mesothelioma, an asbestos-caused cancer, approximately 33% of them are veterans. Many were exposed to asbestos while serving our country. It can take decades after exposure to asbestos for mesothelioma to develop.
As a country, we owe a debt of gratitude to these fellow citizens who answered the call. We need to reach out to these men and women and listen to their stories. For some, the experience of war and the trauma they experienced was compounded by illnesses developed years later.
How can we help? Listen. The art of listening can be challenging for a lot of people. Active listening involves listening and responding in a way that improves understanding. Day to day we are all busy and we only half listen, distracted, while waiting for our turn to talk. A true listener takes the time to listen and then repeats what he thinks the other person said in their own words. The speaker then is able to understand that they have been heard.
In addition to “thank-you for your service,” maybe this year we could follow up with, “how about a cup of coffee, would like to hear about your service experience, if you would like to talk about it.”
Thank-you to all who have served, and the families that have supported them and sacrificed for all of us.
Experience Counts When Treating Mesothelioma Patients
When you are familiar with a situation and work closely with people working on the same problem, sometimes you assume things are further along. Like with mesothelioma. I see breakthroughs in treatments for mesothelioma patients every day, yet I still see patients who are told their disease is too far along for any care other than palliative chemotherapy.
Their local doctor is telling them something they truly believe, and from their own experience it appears to be accurate. Possibly that doctor’s experience is limited by the lack of mesothelioma patients he or she has treated. With only 2,500-3,000 patients diagnosed with mesothelioma each year, only doctors at specialty centers can build their knowledge and experience through treating numerous patients.
This past week, I saw a man who was told by his local doctor to have chemotherapy because that was his only choice to extend what little time they had to offer. The patient was overwhelmed and frightened by this prognosis. He chose to seek another opinion. Through research, he found a mesothelioma center that was close to him, and decided to travel to see a specialist.
Here he was told something very different. He was told he was operable, and his disease was not advanced and he had a good chance in resuming his life as he knows it. Well, that was music to his ears. He would endure a 6-8 hour surgery and a recovery that could be difficult and painful.
He traveled alone and took on this surgery that was a gamble. He followed his medical instructions to the letter, and 10 days later is out of the hospital and is recovering from his surgery.
He is now joined by a family member. During our visit he was so pleased that he chose this option. He was planning on weaning himself off the pain medicine and was making plans to return home. His appetite and spirits are good. He is anxious to return home, but he is patient and will continue with the discharge plan.
I urge anyone reading this, who has not seen a mesothelioma specialist, to please get a second opinion about this disease. Hopefully, you will find an expert. There is a lot of information on the internet and there are many experts listed. Ask your primary care physician for the name of an expert. This is your life and you need to find the best options possible.
Medicine and science are evolving every day. There is still is no cure, there are more options than ever before. Sometimes we all need to remember that mesothelioma is a rare aggressive disease, and seeking out a second opinion at a mesothelioma center might give you and your loved ones peace of mind and a longer life.
Long-Term Mesothelioma Survivors Help Guide Research, Care
Over 25 years ago, as a young RN working nights, one of my male co-workers was diagnosed with non-Hodgkin lymphoma in his mid 20’s. He was married and wanted to start a family. Dealing with the diagnosis, and the changes it was making in his life were difficult. He sought counseling, followed his doctor’s recommendations, underwent treatments and went into remission. He and his wife had a family and he continued to work.
All of this was challenging, but he always wore a smile. He has had health challenges over the years and has undergone procedures, been treated for complications of the therapy, and tried new therapies. He has continuously given back to others who have been diagnosed with cancer. Recently, I ran into him. He said his original doctors have retired, and that his “doctors do not know what to do with me.”
He is a long term survivor, a pioneer, happy to be in the position he is in. His children are young adults, he has seen them grow, been part of their lives. He has been able to experience the important things that matter the most in life. At this point he is a survivor, and he and his doctors are learning together how to manage anything that comes up for him medically.
His story is starting to become more common. A long term survivor of malignant pleural mesothelioma recently related the same issue to me. He is glad to be in the category of survivor, but there are issues that do not seem to have guidelines. Questions get answers that are often vague.
This issue is an important one: care of long term survivors of mesothelioma cancer and their quality of life. It is a part of ongoing research. As we know, it takes time for the research to be developed and the results analyzed.
Once again, it is the brave people who have been diagnosed, treated, and survived that are leading these pioneering efforts to help others. By bringing attention to this issue, the mesothelioma community can come together and support and learn from the survivors. Not only has the community benefitted from their courage in trying new treatments over the years, it has led to a point where a small number of survivors are now living longer. As the community continues to support patients at the beginning of their journey, long term survivors also need our ongoing support.
Use Your Learning Style to Better Understand Mesothelioma
When diagnosed with malignant mesothelioma, patients and families are often entering into a new area of information. This area is complete with its own medical language, long words, and answers that are individualized and can be confusing. When gathering the information to make those important decisions regarding your health, and the course you want to choose for treatment, it is important to understand the information you are hearing and reading about.
Over the years, the approach of the medical team towards patients has changed. It used to be one of “these are your instructions, this is what the doctor ordered.” Meaning it was more do what you are told to do, and do not question your medical team. The doctor was in charge and patients and the medical staff followed orders. This approach no longer works – if it ever did.
What works is the team working with the patient, and the patient’s family, to support whatever decisions he/she makes. The patient is the manager of his or her own life – in charge of the medical decisions, based on the understanding of the medical condition. How do you make these life-altering decisions? These days most people will turn to Google. Is this the best way for you to learn new information? Is reading the information enough for you?
Do you know how you best learn new information? Here are a few different learning styles:
- Visual: You learn by sight with images, pictures, colors, or spatial organization of elements.
- Auditory: You learn by listening, speaking, sound, or rhythm.
- Reading / Writing: You learn best by reading the material, or writing the material down.
- Kinesthetic: You move your body to help you learn like tapping your toes or using your hands, including writing or drawing. You basically use your sense of touch.
We all learn in our own unique way, and when it comes to dealing with your malignant mesothelioma treatment, it is vital that you understand and comprehend your options.
You might think that your learning style has nothing to do with the diagnosis and treatment of a rare cancer such as mesothelioma. It does. Over the years many patients have not “heard” or understood what the doctor said. It is difficult to keep all the terms, and options straight. By knowing how you learn, you can then question the doctor and have a better chance of understanding.
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