Category: Faces of Mesothelioma
Mesothelioma Patients Have Built-In Support Group in Their Family
There are many wonderful support groups out there for patients and families of those with mesothelioma. You are encouraged to share your experiences and get insight and support from others who have been in a similar situation. However, support groups aren’t for everyone, as some people prefer to keep to themselves or turn to their family.
Family is key in helping mesothelioma patients recover physically as well as mentally and emotionally. Family members should encourage their loved ones and assure them that you’re there to help in any way. A listening ear can be invaluable. Try not to push the person to talk about their diagnosis if they don’t feel up to it. They are going through a huge emotional strain and, although it’s healthy to talk about your problems, you have to let them do it on their own time.
Do your best not to push your family member too much to do things they don’t feel up to doing, or may not be physically ready to perform. As essential as it is for them to move around and exercise, you don’t want them to overexert themselves. It might take them a long time to rebound from a long day at the mall or an extended trip.
I believe that everything has a balance, and this situation is no exception. Supporting a family member with mesothelioma is an honor, but it can be tough at times as well. Hearing about their pain and suffering is a trying experience, but remember, you are there for them, not the other way around in this case.
On the other end of the spectrum, if you are having a hard time coping with the diagnosis of a loved one, there are plenty of external resources and support groups for you, too. The Mesothelioma Applied Research Foundation has many different options for caregivers as well as survivors. Take advantage of these services that are so precious.
There are other online support groups such as Cancer Buddies Network. Cancer Buddies Network is an online support network for anyone, anywhere affected by cancer. Share the ups and downs, laughter and tears with someone who knows how it feels because they’ve been there too. You can either chat 1-to-1 by private messaging onsite, or on our lively forum 24/7. Whether you have experienced cancer yourself, or you are family, friend or carer, you can search for your buddy simply and safely on their dedicated website.
Keep your chin up, and continue to pray! Remember, a cure could come at any time!
Mesothelioma Patient Finds Therapy in Making Music
If you’ve read my previous posts, you know that my Dad plays in a bluegrass band called the Dunbar Boys. He had to take some time off from playing during his mesothelioma and treatment, but he is now back playing the guitar and singing with his friends.
Dad loves his band and everything about it – the friendship, being on stage, singing, meeting new people. These are some of his favorite things and being away from them for so long was tough. At the same time, getting back to doing what he loves was great motivation for him during his recovery. Music has been great therapy for so many, and I think it was for Dad, too, maybe just in a different way.
I know that Dad missed making music. During his chemotherapy, and even while going through the clinical trial, he would talk about wanting to play from time to time, but didn’t feel comfortable going back just then. He wanted to make sure that when he made his return, he was ready. When that great return did come, it was at the Dunbar Community Fest, held in my hometown every year. We were doing a fundraiser for the Mesothelioma Applied Research Foundation during the festival and Dad would be playing for the first time back in public.
You have to understand that Dunbar is a very small town where everyone knows everyone. Dad, being a life-long resident, is recognized and loved by the whole community and everyone was so excited to see him healthy and back with the band. The newspaper did a story on him and then we received a call from a Pittsburgh news channel wanting to share his joy. All the exposure was kind of surreal, but Dad and the rest of the Dunbar Boys had a great time!
When he got on stage that Friday night, it was an emotional time for my family and friends who were present. They gave a wonderful performance and everyone was elated for Dad. Dad was happy, too. He was beaming because he was able to get back to his music.
Dad is still playing every chance that he gets, and the Dunbar Boys are all finally back together again!
Know more about mesothelioma and how you can deal with it.
Prayers and a Listener Are Priceless Support For Mesothelioma Victims
When someone you care for is diagnosed with mesothelioma, you might wonder what you can do to help. The first answer is, of course, PRAY and ask others to pray as well. Never, ever underestimate the power of prayer. Our family and our story is proof of that. You might feel as though there is nothing else you can do, but the truth is that you can.
The family that is going through a mesothelioma diagnosis and treatment is scared, tired, and exhausted in every capacity. Any help that you can offer is important. If you know that the person with the diagnosis usually does a certain task, ask if you could take that job over for a while. For example, Dad always spends a lot of time cutting grass, so family members took care of that for him. If you always see someone at the grocery store, ask if they will give you their list and pick up the items for them.
One thing that was extremely helpful was people helping to take care of my two grandmothers who my parents looked after. In this case, if you are a family member, or are close to the family, offer to help take on some, or more of, the responsibility in that regard.
Take a healthy meal over to the family. Trust me, they are too tired to cook and might forget to eat all together. Nutrition is so important for any cancer patient, and helping them eat, and eat right, is a great help.
Lastly, a shoulder to cry on and a listening ear are priceless. Spending time with the people impacted by a mesothelioma diagnosis is so meaningful and kind. Let them know that you are praying for them, that you support them, and that you are there for them whatever they may need at any time. The visits we received throughout our journey were so precious to us. Knowing that you are not going through it alone is a priceless thing.
Keep in mind that any kind of help you can give or offer is appreciated whether those involved are able to express it or not. Remember that they are going through a very difficult time. When offering your help, try hard not to overwhelm them, as they are already feeling devastated, so be sensitive to their situation. Friends and family members are an important factor in helping someone recovering from mesothelioma, so you are a cherished member of the team!
Family Shares Approach to Fundraising for Mesothelioma Research
Many people wonder what they can do to help with mesothelioma research. The answer is simple… DONATE or FUNDRAISE! The next question is often, “How?” That answer is also simple: Do what you can.
I have done several fundraisers over the past few months. Some have been more lucrative than others, but all are worthwhile. For instance, I am an independent consultant for a direct selling company. I have done two open houses and donated half of my commission to the charity of my choice, the Mesothelioma Applied Research Foundation. That was a simple fundraiser, as I set it up as I would any open house for a customer of mine. I invited family and friends and was able to send a nice donation both times.
Another fundraiser that we’ve done took a lot more time and planning. My hometown hosts a community festival every year. We spoke with the people in charge, and did a raffle table at the event where we raffle off gift baskets, gift certificates, Broadway show tickets, and even a tree stand. We started several months in advance, asking family members, friends and businesses if they would be interested in donating an item or items to our cause. People were very receptive and happy to help out, and we ended up with 31 different baskets!
We sold tickets all day at the festival and were overwhelmed with how generous people were. They purchased tons of tickets and even made extra donations to help with mesothelioma research. Everyone knew Dad’s story just from living in the town (Dad knows everyone) or by seeing the story in the newspaper or on TV on the local news. The hard work was definitely worth it.
We are currently starting to work on our next event and plan to continue our efforts. If you are interested in doing a fundraiser, I would be happy to talk with you. I am by no means an expert, but I’ve had a little experience this past year that I would be glad to share. The Meso Foundation is an amazing organization, and I am so happy to be affiliated with them and to be able to help them by fundraising and making donations. No donation is too small, as is no prayer!
Best of luck to you. Please know how grateful all those impacted by mesothelioma are for you and your efforts! God bless you!
Moving on with Life After a Year of Mesothelioma Treatment
Don Smitley and Jennifer Gelsick
Dad began his chemotherapy on March 19, 2012. His treatments were alimta and cisplatin; it was four treatments, 21 days apart, ending on May 21. During this time, he also had a port installed to make things a little easier. It was a scary time, not knowing the impact the chemo would have on Dad. Everyone is affected differently by the treatments.
Throughout the chemo, Dad continued to keep his positive attitude. He called me after the first one, saying, “One down, three to go!” Dad was very tired during this time, certain smells made him nauseous, and his stomach was uneasy more often than not. He just kept saying that no matter how bad it was, it could definitely have been worse.
Dad’s first scan was scheduled and we were all a nervous wreck. The oncologist treating Dad at home, came in and told them the good news, everything looked great! We celebrated the amazing news, the continuation of our miracle, and moved on to the next step we were hoping to take: a clinical trial.
We had been communicating with some people from the Mesothelioma Applied Research Foundation, an amazing group dedicated to finding a cure for mesothelioma, and had gotten some information about a clinical trial in NYC offered through Memorial Sloan-Kettering Cancer Center with Dr. Lee Krug. There were strict criteria to be a part of this trial, and we were praying that Dad was a candidate.
We left for New York again on June 24 for an appointment with Dr. Krug. We were happy to find that Dad was a great candidate for the trial and it would begin two weeks later. The trial was a series of six vaccines that required trips to the city every two weeks. We knew it would be a long, busy summer, but we were so excited to have another treatment option to help keep Dad cancer free.
Dad had his next scan in NYC and got more amazing results! As a part of the trial, we will travel back every three months for two years, and every six months for a period of time after. He has received excellent care at MSKCC as well as NYU Langone and we are so blessed to have these doctors.
The journey we have traveled has been long and arduous, but miraculous at the same time. I hope that Dad, a walking miracle, will inspire people to turn to God and never give up hope. There is help for mesothelioma patients and my Dad is a testimony to that and to the power of prayer.
Thank you for allowing me to share this story with you. I have learned so much this year; never take anything for granted and always keep strong in your faith. Please keep Dad in your prayers, and be assured of mine for you. May you and your families have a blessed, Merry Christmas and a beautiful, healthy New Year!
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