Category: Family

Tips to Mesothelioma Patients from Rare Disease Sufferer, Sam Berns

• Nancy Meredith
• For Your Family

Dealing with a rare disease like mesothelioma is not easy. Treatments such as surgery, chemotherapy and radiation are constant reminders of the battle raging inside your body. Managing cancer and its side effects can be stressful and depressing, but finding a way to focus on the positive aspects of your life can make a difference in your physical well-being and in your quality of life.

Sam Berns, a 17-year-old who recently passed away from the rare disease progeria, which causes rapid aging, was faced daily with obstacles, health issues and pain, yet he lived a full and happy life. When asked in an NPR interview what was the most important thing people should know about him, Sam responded simply: “I have a happy life.”

During an inspiring speech hosted by TEDx just months before he passed away, Sam offered his three secrets to happiness:

• Focus on what you can do, not what you cannot do.
• Surround yourself with people you want to be around.
• Keep moving forward and continue to strive for something else.

“I try hard not to waste energy feeling badly for myself,” said Sam. He added that instead of ignoring the feelings, he “lets them in so that I can acknowledge them, and do what I need to do to move past it.”

Many long-term mesothelioma survivors are living testaments to Sam’s outlook. Mavis Nye has battled pleural mesothelioma for over four years, and she is probably one of the happiest people you’ll meet. Keeping mesothelioma in check is not easy, but Mavis believes that the key to her longevity can be attributed to her joy of life.  And, Mavis spends time with those who bring her joy.

“Ray [her husband] and I enjoy doing so much together,” said Mavis. “We are laughing all the time and enjoy camping together in the motor home. That’s when we can really relax.”

Mavis’s attitude is echoed by another mesothelioma warrior, Lou Williams. Lou, who has battled mesothelioma for nearly ten years, raised a toast to herself and other mesothelioma patients on New Year’s Day, saying: “Here’s to being here in 12 months time and to living well in the meantime – doing what we love – travelling, spending time with family and friends and fitting as much into our lives as we do now!”

Jan Egerton also offered a New Year’s resolution to all mesothelioma patients, encouraging “everyone in the mesothelioma community, whether you are a patient or a caregiver, to keep a positive attitude and to remember that for every bad day there will be a good one.”

Just like Sam, mesothelioma patients are faced with an uncertain future. But even when Sam was at his lowest and in the hospital fighting another complication, he focused his thoughts on looking forward to when he would be better. He was buoyed by his fourth philosophy, “I never miss a party if I can help it!”

Jennifer Gelsick Thinks of Her Father Three Months After He Loses His Fight With Mesothelioma

• Joseph Belluck
• Faces of Mesothelioma, Family

January 15 marked three months since I lost my Dad. A lot has changed, many adjustments have been made both internally and externally. Although life is not the same without him, we have been doing our best to carry on while carrying Dad with us.

For me, every day starts out a little differently.  I used to call Dad every morning to check in, see how he was doing, and let him know what my plan for the day was.  He loved hearing about our businesses. Where was Mikey working today?  Do you have any meetings? He was so proud and interested, it made even the worst days of work worth it, knowing that I could share my stories with my Dad.

Every time something funny or remotely interesting happens, I always want to reach for the phone to call him. On Thanksgiving morning, as we got ready to make the trip to see my family, we put our dog in a sweater. It was funny and I knew Dad would get a kick out of it. I thought to myself, “Since Dad won’t be there today to see this, I’ll text him a picture.” Instantly, I felt a pain in my heart. They say that old habits die hard – how true.

Even though I have these lapses from time to time, I have been working hard to remember that Dad would want me to enjoy every second that God blesses me with, not to worry about him, especially since he’s now in Heaven. I talk to Dad a lot and that helps me. Sometimes, when I’m not sure what to do, it’s almost like he’s telling me what path to take. This comforts me so much; Dad always gave the greatest advice.

The pain of losing my father is still very fresh, but I feel like I can now handle it a little better. Talking to family members and friends, watching home movies, and just reminiscing about how wonderful he was now brings me comfort and not so much pain.

It’s been said that time heals all wounds. I’m not sure that this wound will ever be healed, but I guess we have to learn to tolerate the pain in some sense. With faith and trust in God, all will be well. For all of us who have lost a loved one, let’s keep working to find a cure for mesothelioma, so that others can avoid this wound.

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

Five Lessons I Learned from Caring for My Father During his Fight with Mesothelioma

• Joseph Belluck
• Faces of Mesothelioma, Family, Mesothelioma

When I was asked to write about what I’d learned from living with someone with cancer, I was stumped. There are so many nuances that go along with this topic, where should I start? After a lot of thought, I came up with five things that I realize now are so important.

1. Don’t let cancer dictate every move you and your loved one make. After Dad was first diagnosed, I found myself letting my whole life revolve around cancer… not Dad necessarily, but Dad’s cancer.  It can become easy to stop treating someone like a person and start treating them like a disease.  Every time Dad would move or cough or say he was tired, I would instantly jump into action thinking that something was wrong. He finally told me that he was okay and he would let me know if there was a problem. I did my best to honor his request and not worry so much.
2. Try to relax. For your sake and for the sake of your loved one, try to take a breath and relax a little.  When you stress, those around you feel it and start to feel anxious as well. This doesn’t fare well for anyone involved.
3. Ask for help.  A cancer diagnosis comes with a lot of challenges and tough choices that you would never think of. It is way too much to try to handle them alone. Talk to other family members, trusted friends, your Priest or Pastor, and ask them to assist you. Most of the time, people want to help, they just don’t want to appear nosy or overbearing. Even having someone pick up some groceries or take a trip to the post office for you can be a huge help. It’s also wonderful just to have that support around you.
4. Cling to your faith. Dad carried a coin with him every day that said, “Lord, help me to remember that nothing is going to happen to me today that You and I can’t handle together.” Take a second to think about that. It is so true.  My family has relied on our faith in God to get us through every stage of this journey. From start to finish, God brought us to and through each point along the way.
5. Treasure every moment. I cannot stress enough how important this is. For every person, no matter what your health, our time here on earth is fleeting. Every second you spend with those you care about is special. What you might think is just a normal, boring day, is what you’ll miss when someone you love is no longer here. I would love to have even one more second to spend with my Dad, but God had a different plan. No matter what, don’t take anything for granted.

I hope that these five things will bring some comfort and help to you.  Please know that my prayers and the prayers of my family are with you always.  God bless you!

Mesothelioma Warrior Faces Declining Health

• Joseph Belluck
• Faces of Mesothelioma

One of the saddest things about dying from cancer is the realisation that you can see your body deteriorate. At first, especially with mesothelioma, it’s that little breathlessness you never had before. That small incline at the bottom of the road was easy a few months back, now you find you need to stop to take a moment before setting off on to the flat.

In all the years I have been fighting mesothelioma, my one problem was pain, not breathlessness, until last year when I noticed I got breathless walking the dogs, always after walking up an incline.

Just this summer, with a stomach full of fluid I was still marching around. Always a fast walker, on the flat I was walking without a problem, but the stairs, on the other hand, became somewhat tiresome.

Suddenly, after having the drain fitted and taking on a chest infection my breathing plummeted – I can no longer walk five yards without being breathless. Stairs are my enemy, even walking to the kitchen and back takes all my strength. This is full on realisation that makes me worry, ‘Will I always be like this?’ ‘Can the chemo reverse this,’ and lastly, ‘Is my time nearly up?’

There are some solutions to elevate the problems of mobility, such as a wheelchair for going out, a chair lift for those stairs, but mentally this doesn’t remove the fears that our bodies are weakening to the effects of the cancer.

I know bowel cancer, stomach cancer and various others do bring pain, but many are towards the very end. With mesothelioma we seem to suffer from start to finish. I guess that is what makes this the worst cancer in the world to have. Unless some high powered minister or government official ever had to suffer or watch their family member go through this, they will never see or understand the complexity of what this disease does.

I hate the fact I can see the changes taking place, I can see the pain it brings in my husband’s face, each time I have to ask him to help me. I am losing another piece of my own independence, and I face the fact that I am getting worse.

We are all holding out for that one drug that will help, but since the development of pemetrexed, which works on only 40% of mesothelioma, nothing better has come on the market. That drug was found by accident, maybe the next one is around the corner. But unless a significant amount of people get a benefit from a new drug the trials are scrapped. What happens to the 60% it doesn’t work for?

As I now battle with the spread of my cancer to the abdomen as well as both lungs and back on my pericardium, I fear the worst. I have to believe the chemotherapy I am trying now will take me back to the health I so enjoyed in May and prior. Never again would I complain about that little bit of being out of puff, I would rather that than be in a wheelchair. Never before have I felt like an invalid, but now I need to review my life and begin a new way of normal.

To those facing this same decline we must stay focused on the fact we are still here and still able to share in the life and enjoyment of our loved ones, for it is them we keep pushing ourselves on for. I must put away my own worries about my decline so that my husband can feel he isn’t helpless anymore but helping me live as full a life as normal.

Mesothelioma Warriors Offer New Year’s Resolutions

• Nancy Meredith
• Family

As another year kicks off, many of us take the time to reflect back on last year and vow to make the New Year better than last. People say things like, “This year I’m really going to lose weight,” or “I’m going to find that job that I’ve always wanted.” For patients and their families battling mesothelioma, however, just making it through another day, or month, is all they hope to accomplish.

MesotheliomaHelp.org reached out to several long-term mesothelioma survivors and asked them what their resolutions are for 2014. Jan Egerton, Lou Williams and Mavis Nye all initially responded saying, “I want to be here for another year.” All three of them underwent another cycle of chemotherapy and 2013, and faced more than their share of bad days. But, with 2014 here, they are positive and upbeat and offered up resolutions to encourage others to stay positive and to keep fighting.

Jan Egerton has offered glimpses into the daily struggles she has encountered over the last year as she continues to battle mesothelioma. Jan is entering her tenth year of diagnosis, and as she fights breathlessness and exhaustion she vows to keep fighting and to be around for her husband for many more years.

Jan’s hope for 2014 is:

• To fight with everything I have to ensure that I will be celebrating New Year’s in 2014.
• For everyone in the mesothelioma community, whether you are a patient or a caregiver, to keep a positive attitude and to remember that for every bad day there will be a good one.

Mavis Nye has been fighting mesothelioma for four and one half years. She said previously, “I love getting up each day because it is a new start, a fresh start and I will see another day.” She said although she used to start every year promising to lose weight, this year is different.

In the New Year, Mavis Nye will work to:

• Raise even more awareness of mesothelioma, and to fight for more money for research.
• Carry on helping mesothelioma warriors to travel the pathway of this disease, but to give them strength as I show them I have survived longer than my oncologist predicted.

Lou Williams faces 2014 with the same positive attitude that has helped keep her battling both pleural and peritoneal mesothelioma. While focusing on her own health is critical, Lou also believes raising awareness of the dangers of asbestos is just as important.

For 2014, Lou will raise a toast:

• To me, all the other mesothelioma warriors around the world, and to those who we have lost along the way (including my dad) through this deadly asbestos cancer. I will continue to raise much needed asbestos awareness, advocacy, education and give support on a global scale. Asbestos is deadly, there is no safe asbestos!
• To me and my beautiful husband Keith, and to all the other carers and past carers, partners and loved ones who have been/are there with us for the long haul of living with mesothelioma – a journey that is a tough one with lots of highs and lows.
• To being here in 12 months time and to living well in the meantime – doing what we love – travelling, spending time with family and friends and fitting as much into our lives as we do now!

Happy New Year and best wishes for 2014 to everyone fighting mesothelioma!