Category: Family
Mesothelioma Survivor Lives in the Moment
Through an email interview last week Louise “Lou” Williams, of Mt. Macedon, Australia, a wife, mother, grandmother and mesothelioma survivor, shared information about her struggles with mesothelioma, her thoughts on the disease and her advocacy efforts for the international mesothelioma community.
Louise Williams saw the devastating effects of mesothelioma when she watched her father die from the disease in 1985. In eight short months, Lou’s father, Norman, went from an active, healthy 54-year-old to a deceased victim of the asbestos cancer. Unfortunately, less than 20 years later, Lou was faced with the same overwhelming prospect when she was diagnosed with peritoneal mesothelioma at the age of 47.
Like many mesothelioma patients though, Lou’s diagnosis didn’t come until years after she began experiencing unexplained symptoms, including chronic fatigue, excruciating pain and a raised hardness in the groin area. When one doctor told her to come back in two years for a second test after finding an abnormal cell, Lou admits that “alarm bells should have gone off in my mind; however I had every faith in the medical profession.”
Nearly 18 months after that, another doctor broke the news to her that she had peritoneal mesothelioma and that she had just months to live. By then, Lou knew she had a cancer, but she was not prepared for it to be mesothelioma. They were looking for ovarian cancer.
“I knew too much about asbestos cancer, how aggressive and painful it was,” she said.
But Lou was not going to take her grim prognosis without a fierce fight. With full support of her husband and children, Lou endured major surgery to remove her tumors, followed by 18 sessions of chemotherapy (cisplatin and gemzar). The strategy paid off. Lou enjoyed five years of “reasonably good health” and lived her life on her terms.
Then in 2009, Lou received a second blow – she had developed pleural mesothelioma. Lou now has the distinction of having a very rare and unusual case of mesothelioma as her peritoneal mesothelioma is totally separate from her pleural “outbreak/strain” of mesothelioma.
Once again, Lou and her family faced an aggressive course of therapy to battle her mesothelioma. Through care from “her very brilliant oncologist (Allan Zimet) and cardiothoracic surgeon (Julian Gooi),” Lou endured three major operations, a three week stay in the hospital, and 16 sessions of alimta/cisplatin chemotherapy involving overnight stays in the hospital.
Now, it is nearly four years since completion of her last round of chemotherapy and Lou has barely missed a beat in enjoying her life with her family. Lou is “a mother to six children (2 beautiful daughters) and (4 great stepkids) and proud Nana/Nan Nan/Nanalou to four beautiful little grandchildren, seven step grandchildren and two step great-grandchildren.” She visits them every chance she gets and just returned from an extended trip into Melbourne where she was able to enjoy “special Nana time.” In addition to traveling extensively throughout Australia and Europe, Lou has traveled to the United States to Santa Monica, Los Angeles, Disneyland and San Francisco, to Chicago, up the Michigan coast, and to Niagara Falls.
When asked what her quality of life is, Lou responded with a resounding, “Excellent!” She added, “I live in the moment and let the universe take care of the big picture.”
Although Lou has endured countless surgeries and rounds of chemotherapy, it hasn’t crushed her spirit. If anything, Lou’s energy is buoyed by her passion to prevent others from having to suffer the same consequences of asbestos as she and her father. Lou is one of the best known mesothelioma advocates in Australia, and perhaps the world.
Lou will travel to Washington, D.C. later this month as a mesothelioma advocate and take part in the 9th Annual Asbestos Disease Awareness Organization’s International Asbestos Awareness Conference.
Lou has just recently started her own blog. Follow her musings and insight at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”
Stay tuned for Part II of Lou’s story as she discusses her advocacy and her hope for an international asbestos ban.
Keep Yourself and Your Paperwork Organized During Mesothelioma Treatments
A diagnosis of mesothelioma brings an overwhelming feeling to every aspect of life… including being bombarded with information, paperwork, and bills. Here are some ways that my parents stayed organized throughout the process that may also help you out.
Small things can make a big difference. One of the first things we did was start writing things down. A notebook can be an invaluable resource to you. Write down everything you can: phone numbers, doctor appointments, information about financial, emotional, and spiritual resources, and anything you think is important. It’s better to have too much information than not enough. If you’re traveling, document hotel information, places to eat, addresses, etc. Keeping all this material in one place can help so much. Don’t worry about keeping it neat and organized. As long as you know what’s in there, you can find it in a pinch.
Make copies of EVERYTHING! When you pay a medical bill, get an appointment card, or receive a report… copy it. Many computer printers are fairly inexpensive and come with a built in copier. It is a worthwhile investment to make when you consider how much easier it will be to have multiples of various types of paperwork.
Try to keep all of your correspondence together as much as you can. Mom and Dad bought a nice size wicker basket that has become the home to everything mesothelioma related. Knowing that all your information is together is a great deal of comfort… as long as you remember to put things in there.
When you are going to an appointment, take as much with you as you can. When Mom and Dad go, they remove the information from the basket I mentioned, and put it in a tote bag that has traveled with them over this past year. It has come in handy so often to be able to immediately hand someone the information they are requesting that could take days to get otherwise. (Again, those copies come in handy!)
It’s easy for things to get lost in the shuffle when so much is happening in your life and the lives of your entire family. It’s not uncommon to forget doctors’ appointments even though the appointment cards are all on the refrigerator (another great tip), and that’s ok. It has happened to my parents, and will most likely happen to you, too. People are very understanding and are there to help you, so don’t beat yourself up if you forget.
Hopefully, these little tips will help you out, or give you some ideas on how to stay organized throughout this journey. If you lose something, don’t panic! Just say a little prayer (Saint Anthony always helps me out), relax, and charge ahead. Best of luck to all of you!
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!
Free Mesothelioma Patient & Treatment Guide
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