Mesothelioma is a disease that has no cure but has lots of treatment options. Unfortunately, those options can run out and comfort and quality of life is what we are left to focus on. That is not a bad thing but it is not what we had hoped for. Talking about dying is one of the most uncomfortable topics that I know of. Death is the last phase of life and we are all going to be faced with it. I recently received a phone call from a patient telling me that her loved one was weak, frail and she was not sure what to do. She thought if she took her to the hospital she possibly would not be able to come home again because she thought the end was near. Although her caregiver could not say that she thought she would die she said everything but that. We are so filled with fear when it comes to death. As we progress in our lives we know that we will all age and be faced with this transition.

I agreed that her mother sounded like she was in poor shape and she may not survive a hospitalization. To be honest I too never used the words dying either. The one thing I did suggest was that she talk to her Mom and see what she wanted. These discussions are difficult but in the end, it may give clarity as to what is important to her.

As a cancer diagnosis is given I am sure self-evaluation takes place. Even a scare of a cancer diagnosis can cause reflection. The question is what do you want for the rest of your life. Do you want to spend your time with loved ones at home or would you prefer to pass at an institution? There are no wrong or right answers, it is all what you want. The questions are very overwhelming. Sometimes the end of life is dominated by what is expected by a culture. This is a lot to think about and it can be overwhelming.

If a person can make some decisions prior to these moments it provides some sense of control. We have taken care of patients that are at the end of their lives and have gone as far as making their final resting arrangements. Some of these conversations are hard but with more discussion it allows understanding of what the sick person would like. Often when it is our loved ones we try to change the conversation, ignore the elephant in the room and pretend that the end is not coming. Please try to allow these conversations to be spoken and ask questions. This is the time to allow someone’s ending be the way they want.

– Lisa

At the Harvard School of Education Dean James Ryan gave a speech at graduation that has made the rounds on the internet. He said there are 5 questions plus a bonus question that we should ask ourselves every day. They are:

1. Wait? What?
2. I wonder? Why? Or What?
3. Couldn’t we at least?
4. How can I help?
5. What truly matters to me?

• And the bonus question: Did you get what you wanted out of life – even so?

Thinking about the patients and families that have been diagnosed with mesothelioma these questions asked about their lives, seems to put mesothelioma into perspective. Mesothelioma is an aggressive cancer. The diagnosis throws patients and families into a world that they never planned on being involved in. How can they make sense of this diagnosis and go forward? These questions can prepare us for anything life throws our way, including a cancer diagnosis.

Imagine you have just been diagnosed with malignant mesothelioma. You and your families first response is wait? What? By asking this question you are looking for clarification. You are looking for answers, but asking for time to process what you have been told. You want time to slow down get the facts, make sure you understand.

Then you wonder why? Or if? – the second question. With the diagnosis of mesothelioma, you might think- when was I exposed to asbestos? Or what if we seek expert opinions- where and how? How might you improve the situation?

The third question – Couldn’t we at least? – can help you to get moving. Maybe get an opinion at a mesothelioma center, investigate a clinical trial, explore your options. This question enables a patient and family to move forward. Maybe there is fear in travelling or leaving your comfort zone, but by recognizing these things you can then make progress toward some action.

The fourth question, How can I help? – this can be a time for families to respect what the patient wants. The patient is the expert in their lives- you recognize that and help with what they want to do.

The fifth question is what really matters to me? How do you want to spend the time you have left- what relationships are important?

The bonus question is- Did you get what you wanted out of life- even so? This question is the one that sums it all up. Have you lived your life how you wanted? Despite being diagnosed with cancer has your life been fulfilling? Are you happy with how you have lived? Your relationships? Before, and during your cancer diagnosis. Even so- in spite of the ups and downs of life are you happy with your life?

By reviewing these questions in the context of your everyday life it could help us all prepare for the time when life gives us an unpleasant unexpected surprise and be happy for all the good things in your life.

– Ellie