Category: Family

Deja Vu: Woman Faces 2nd Mesothelioma Diagnosis in the Family

• Lisa Hyde-Barrett
• Family, Mesothelioma, Nurse's Corner

One of the most rewarding parts of being a nurse is meeting different people, hearing their stories, and learning from them. This past week a couple in their late 60’s, he has pleural mesothelioma, were sharing how mesothelioma had been a part of their lives for quite a while. Unlike most victims of mesothelioma, though, they had been aware of the devastation that mesothelioma causes: the woman’s father had died of mesothelioma nearly forty years ago.

At that time, her father was told by his doctor to go home and get his affairs in order. She remembered how devastating the news, and his subsequent death, had been on her family. Her father’s diagnosis turned into a death sentence that happened within six months of his diagnosis.

In the fall of 2015, after her husband had not been feeling well, he was diagnosed with pleural mesothelioma. He was told by his local doctor that he should go home and get his affairs in order. But once this wife and daughter of mesothelioma victims was able to process the latest news, she sprung into action. Her husband’s diagnosis and care was going to be different.

Thirty years ago we did not have the internet, and this woman refused to believe that no progress had been made and that, still, nothing could be done. She found some very helpful web sites, researched some leading doctors in the field, and attempted to find any clinical trials that might apply to her husband. Together they set their plan into motion.

She also located support for herself and her husband in dealing with mesothelioma. None of these resources were available to her father or her family so long ago. As she talked about what options they now had with mesothelioma, she shared her shock that her husband and father had been told the same thing. Now, with the benefit of the internet, and progress with mesothelioma, they felt they had options.

Listening to her story, I was struck by how much still needs to be done to help the newly diagnosed mesothelioma patient. It is not easy to wade through all the on-line information, it it time consuming and not all the information is current or accurate. Clinical trials are sometimes difficult to understand, and the process to becoming enrolled in a trial, and researching options can be overwhelming. Dealing with a new cancer diagnosis and all the changes that brings in your world is a very stressful time.

The chances of a woman having a father die of mesothelioma and then her husband being diagnosed with the same disease have to be astronomically low. But this time the woman and her husband have different options and are going to fight back. Hopefully, the outcome will be much different.

If you have any questions regarding any aspect of your mesothelioma treatment, feel free to email me at [email protected].

Know more about Mesothelioma and how you can deal with it.

Be Educated About Mesothelioma at Rare Disease Day

• Joseph Belluck
• Faces of Mesothelioma, Family

February 29 was rare disease day, a day to recognize and remember all those who have been afflicted with these illnesses and to pray for a cure. Mesothelioma is one of the nearly 7,000 diseases in the United States that is considered “rare;”  however, to someone dealing with the effects of mesothelioma, there is no rarity to it at all.

Since mesothelioma is such a rare disease, it is understandable, but not acceptable, that the general public knows so little about it. I include myself in this lot, as I did not even realize that it was a form of cancer when my father was diagnosed. I find myself thinking about all of the missed opportunities to educate people on what meso really is instead of just those television advertisements.

Now is the perfect time to take a stand for this community. With faith, education, research, and fundraising, we can help take mesothelioma from being classified as a rare disease to an eradicated disease.

Contact your state and local representatives and ask them to push for legislation for more funding for mesothelioma research. Let them know that there are faces to this awful disease and that there is more to us than what may meet the eye. We may be a group that came together from something uncommon, but there is definite strength in our assembly.

Know more about Mesothelioma and how you can deal with it.

Wishes and Gifts to a Patient Traveling for Mesothelioma Treatment

• Joseph Belluck
• Faces of Mesothelioma

Many people have to travel for mesothelioma treatment, doctor appointments, clinical trials, and events.  Oftentimes, you would like to send something along with them to make the trip a little more comfortable, but you’re not really sure what that should be.

Here are a few ideas:

• Why not send along some comfort in the form of slippers, a robe, or a pair of pajamas? Whether your loved one is in the hospital or a hotel, it’s always nice to get cozy and relax.
• Send something to keep their mind occupied like a puzzle book, music, or a novel. I know that for me, my mind can be my own worst enemy at times. These items could help them keep busy and forget about the mesothelioma for a while.
• It’s always nice to have some words of encouragement; sending a card or letter can make someone’s day. When my Dad was in the Hope Lodge, his cousin would mail jokes from time to time. Dad always enjoyed that – the laughter coupled with knowing that he was being thought of made him smile.
• Send some snacks along! Before doing this, be aware of their appetite and eating habits. Some treatments might cause their favorite foods to be not quite so appetizing.

If you don’t know what could be useful to your friend or family member, simply ask!  Tell them you would like to give them something to help on their trip and see if they have anything in mind.  If not, just get creative!  Your thoughtfulness will make all the difference!  (And don’t forget about their caregivers!)

Cheer Up A Mesothelioma Patient With Some Fun Decorations

• Joseph Belluck
• Faces of Mesothelioma, Mesothelioma

The winter blues. The long, cold, winter months can seem to last forever! For someone who may be extra sensitive to the cold or unable to leave their home, like many mesothelioma patients, it can be even more vexing.

With Valentine’s Day this week, it may be a nice idea to take a card, candy, or some small gift to your loved one. On St. Patrick’s Day, wear your favorite green and greet them with a shamrock! These are small things that could brighten up their days.

If the person happens to be in the hospital, check and see if you could decorate their room. Hanging a few simple decorations could be just the thing to lift their spirits. The same thing goes for their home… a little bit goes a long way.

Besides the holidays, paying a visit to someone with mesothelioma, their caregivers, or ones who may have been left behind, can make all the difference. As I always say, let them lead the conversation – they may be up to talking about their condition, or might not want to bring it up at all! Knowing that people care is one of the best gifts you can receive when dealing with any kind of trying situation; the mesothelioma community is no different in this respect!

During this cold season, warm it up with some hot cocoa, good company, and love. Remember that even though it may be dreary outside, it doesn’t take much to make the inside inviting and full of life!

Know more about Mesothelioma and how you can deal with it.

Mesothelioma Will Not Ruin My Memories

• Joseph Belluck
• Faces of Mesothelioma

I think about my Dad all the time. He usually makes an appearance in my dreams. The problem with this is my way of thinking. No matter how happy the memory, or how funny the dream, I always seem to end my thought with, “but that was before he got sick.” Why can’t I let myself remember without the negative creeping in?

I struggle with this question often. My Dad was a funny, caring, loving man who would not want me to remember my time with him as anything but wonderful. I finally realized that by letting myself focus on the negative, I am demeaning my memories. I am depriving myself of all of the happiness that Dad brought to my life, and he deserves so much more than that. Mesothelioma didn’t define my father, why should I let it cloud my memory?

Mesothelioma doesn’t get to win anymore. This disease took my father, but I will not allow it to take his memory from me. It’s not always easy, but it’s worth the fight! From now on, I look back with fondness and with thanksgiving that I got to spend 30 years with the wonderful person I got to call “Dad.” I will reminisce with joy and not sorrow at all of the fun that we had, and I thank God that he gave him to my family.