When you or a loved one receives a diagnosis of malignant mesothelioma, you become part of our caring and very special community. We understand the struggles you face and are here to help. We know you do not want to be a part of this community. It is, however, a community through which you can connect, share stories and experiences, and feel strength and support behind you through the challenging times.
Many new members of our community have preconceived notions of what these experiences may entail. Being a member can help one find the answers to make a well-informed decision regarding their treatment and the goals of their care.
Treatment of malignant mesothelioma requires a team led by dedicated physicians and experts in the mesothelioma field. In our community, there is no substitution for experience.
Whether you are a patient, a nurse working in a treatment group, a researcher or physician treating the disease or a family member, what unifies the mesothelioma community is the common purpose to help each other. Our community is a safe place to support each other and remind ourselves we are not alone in this battle.
Belonging and connecting is how a community becomes stronger. Humor can also help to strengthen a community, regardless of its intent or purpose. There is a movement called the “pink socks tribe” started by Nick Adkins, a former health care executive. Adkins gives away pink socks with mustaches to facilitate connections with each other. When he gives away a pair of pink socks, he connects with the person, looks them in the eye and shares the moment. With his pairs of pink socks, Adkins is connecting and making someone smile, opening a connection, helping the person to enjoy some silliness and inviting them to tell their story.
The mesothelioma community is an active group that will continue to work together to strengthen our connections with each other and win the battle against mesothelioma. For any new members reading, welcome, and continue to reach out and share to strengthen the bonds.
Being an advocate is one of the most giving and selfless things you can do to help your loved one. From our years of experience, we have found advocates are critically important to both doctors and patients. It is wonderful when patients have a family member or friend who can take on this role. It is not an easy job and requires one to be on their toes and stay level-headed. It is very important that advocates understand their responsibilities and are ready for this position. Being an advocate often includes accompanying a loved one to medical appointments, monitoring medications, scheduling appointments, overseeing nutrition, planning exercise, and helping with overall well being.
There is no rule for who steps up to be an advocate. It is often a patient’s significant other, but can be their child, relative, neighbor or very close friend. While you might find classes and information on advocacy, most of learning how to be an advocate happens on the job. It can be very difficult to suddenly become the person who needs to remind their loved one to eat, drink, walk or take medicine. It helps when this is done with compassion and love.
As an advocate, it is very important that you communicate with the medical team and take the stress off of your loved one. Even scheduling appointments can be very difficult and emotionally stressful for a patient undergoing chemotherapy and battling mesothelioma. As an advocate, fight for your loved one calmly and with the strength that your loved one does not have at the moment. It is important that you be your loved one’s rock throughout this often stressful, confusing, and chaotic. Although your heart might be breaking, by remaining focused and calm you are performing an invaluable role. It is one of the most sincere and important things you can do for your loved one.
We have seen the truly inspiring relationships between patients and their advocates. Although this is a very difficult time, you can become very close, create cherished memories, and help your loved one feel comforted and loved.
The holidays can be very difficult times for anyone, but these weeks are extremely difficult when loved ones are suffering with an illness. It is difficult, even impossible to focus on the traditional ideas of holidays, shopping, cooking and family time. As the holiday season approaches many people will be in the midst of treatment, away from home and not feeling well. Some of our loved ones are no longer with us.
I spoke with a physician last week about what really matters to our patients, and to everyone – time with people who we love. Most people who are not well or who have lost loved ones to illnesses mostly want time with people. If you are the relative or friend of someone who is suffering from Mesothelioma it would be a blessing to spend some time with them to brighten their day. It would also be a blessing to let a caregiver know that you care and support them. Most of us want to know that others think about us. Spending time together is the most valuable and memorable gift you can give someone. It is so important to visit people who are isolated because of illness. It means more than gifts. Even a friendly telephone call is a blessing. Young children stopping by to say hello bring energy, life and laughter. Time together simply cannot be measured.
As nurses we often visit with Mesothelioma patients and experience firsthand how grateful a patient is to receive a visit from a new or familiar face. We can only imagine the joy a loved one will bring to a patient. The visit will help you too. Many times, we visit patients and we comment on how much better we feel after we have seen a patient. The emotions and mood elevation one may gain from visiting a loved one or friend is very surprising.
Holidays are very difficult for those who have lost someone. Feelings and emotions are complex. The absence appears to be more pronounced around the holidays and causes heartache and feelings of sadness and loneliness. One of the things a loved one should focus on is what your deceased loved one would want for you. Most would want you to be happy, and to care for yourself, and surround yourself with other loved ones. There was a time when you spent most of your waking hours, with minimal sleep, tending to your loved one who needed you. With no regret you were glad to be the one who could do this and provide the needs and love that were required. Now it is the time to take care of you. That is what your loved one would want you to do.
Allow yourself time to heal, be with others and if you need emotional care allow someone to help you. This is a time to heal. Surround yourself with loved ones, eat healthy, exercise, start walking and regain your fitness. It is difficult to lose someone or care for someone but the best thing you can do for yourself is be kind to yourself. Think of the happiest of times with your loved one and surround yourself with people who will make you feel good.
Our blessings and best wishes to you all.