Author: Joseph Belluck
Move Beyond the Guilt When Caring for a Mesothelioma Patient
In the days and weeks following Dad’s diagnosis, I found myself looking around at other people who weren’t dealing with mesothelioma and feeling jealous. I remember thinking that they were able to live their lives uninterrupted, unchanged, when my whole world had just been turned upside down. Then, I began to question things; how will I ever be able to smile again, how will I do my job again, how will I ever be able to do anything “normal” again?
The answer took me a long time to realize, but it was quite simple. You just do. At that point in my life, I would have loved to trade places with anyone else who hadn’t just found out that their father had cancer. I wanted to run from it and pretend that it never happened. But those things weren’t possible. It was time to “be a big girl” and face my new reality head-on.
There was so much to do and figure out, especially once we decided to go to New York City. Planning and being in a strange place seemed to distract me enough to focus my attention on what was important. Prayer brought me comfort and solace. My family and friends brought me strength. God brought all these things to me.
Once the surgery was over and we were back home, I wasn’t sure how to move on from all the trauma that my family had experienced. Adjusting to a new lifestyle was difficult. It’s easy to let yourself fall into a pattern of guilt. Why do I get to continue with things “business as usual” when Dad has been faced with this disease? How do I continue to live three hours from my parents while they are in such a tough spot?
Again, these answers took me a long time, and it was a more complex response. First, Dad wanted all of us to get back to our normal lives and not dwell on the mesothelioma, just as he wanted to move on from it. Secondly, you cannot let your life be completely consumed by a diagnosis.
Do I worry about Mom and Dad every day? Absolutely. Do I help with anything they need as much as possible? For sure. Do I feel guilty for living my life? Sometimes, but by and large, no. I was an emotional wreck for quite a while, and I really think that me getting back to my normal life was a huge relief for Dad. Mom and Dad know that I would drop everything for them at any moment and help them with whatever they need. That is what’s important. The love I have for my family, and they for me, is amazing.
I have said previously that before you can take care of someone else, you have to take care of yourself. That remains true in this situation. Be happy, be there for your loved one, and be present in every moment. Don’t feel guilty for living the life that God gave you – that’s what He intended it for!
Mesothelioma Patient Manages Memory Loss and Forgetfullness
Many years ago, I read somewhere that having anaesthesia caused the death of brain cells, especially those associated with memory.
Unfortunately, over the years since I turned 30-years-old, I have undergone quite a few surgeries. Five to treat endometriosis, including a hysterectomy, and then my gall bladder was removed. For mesothelioma it was three surgeries, one which had me out for some eight to nine hours.
Now, the latest findings report that chemotherapy can also cause memory loss and forgetfulness. Some people call that “chemo brain.” I have had 13 doses of chemotherapy, not as many as some, but more than others. On top of that, I take morphine and pregablin, both of which can adversely affect your memory.
I used to pride myself on being able to remember dates, events and information that was important to my job and things important to my friends. I would multitask at work without thinking. Today, things have really changed. No longer do I bounce between three different programs, do what I need to and take a telephone call at the same time. I have to focus my full attention on just one thing at a time. If I do talk to someone on the telephone when I am in the middle of doing a task, I forget completely what the task was. And once I go back to what I was doing I forget what I was asked to do on the telephone!
Emailing: how can you possibly forget things when you email? But when you have email accounts for work and various personal accounts, you forget which one you have used or whether your emails are in Outlook, Gmail or Windows live! You spend more time searching for things than you do reading them.
This happened the other day. I received an email requesting information on mesothelioma. I opened it on my iPad and thought I would answer it on my computer. Because I had opened it on the iPad it didn’t show up as unread mail on my computer, and I never answered it. Two months later I am clearing my emails into folders and I found it. I had to apologise profusely for not answering sooner.
My husband thinks my memory loss is quite good because he can get away with things. If he has forgotten something on the grocery list, for example, he says I never told him. Of course I can’t say I did because I am never sure whether I told him to add things or not.
These are just simple trivial things, but seriously this memory loss can be bad. It isn’t just long term memory that comes and goes but short-term as well. I was asked to ring a friend as I was leaving the room, I passed the telephone but the thought had completely gone. An hour or two later my friend rang and said, “I thought you were ringing right back, what happened?” If this had been an emergency, it could have had serious consequences.
The other strange thing is your memory does start coming back. Unfortunately for me, just as I start to improve, I have found that I am back on chemotherapy and the memory problem resurfaces.
I guess what I am trying to say is to you that this is your “new normal” if you have undergone surgery and/or chemotherapy. Maybe you will be lucky and it does not have an effect on you, but if it does, all I can tell you is to try and remember to make notes, and then keep your note pad in the same place!
Mesothelioma Patients Encouraged to Take the Time to Celebrate Life
For every person, not just those impacted by mesothelioma, each day is a cause for celebration. It is a chance to do things that you enjoy and be with people that you love. I once heard someone say that each day is another chance to “get it right.” What a profound statement! God gives us such a beautiful world full of things that we take for granted on a daily basis. It’s time that we really celebrate life!
Throughout Dad’s journey with mesothelioma, every milestone has been celebrated in some way. When he arrived home from his surgery at NYU Langone he came to our house first. We were greeted with a full refrigerator, dinners, gifts and visitors. At his home, there were balloons, cards and visitors.
When his chemotherapy was finished, there were cards. At the end of his radiation treatment, there was a party (that was sort of foiled when Mom and Dad arrived home a day earlier than planned) with cake and family. Every day, no matter the situation, you can find something to celebrate!
They say that getting life changing news, such as a mesothelioma diagnosis, can make or break you. Don’t let it bring you down! Every trying situation is an opportunity to better yourself and to find a valuable lesson in it. ’m not saying that every single day of your life will be rainbows and sunshine, but there can be good found in every obstacle. Trust God, rely on your faith, and He will bring you through!
Don Smitley Finds Comfort Spending Time with His Dog, Charley
I have mentioned my parents’ dog, Charley, in several posts. It’s time he got some attention! Charley is a five-year-old poodle-terrier mix who has become a light in Mom’s and Dad’s lives. He is sort of goofy (truth be told!) and always makes them laugh and smile.
The relationship between Dad and Charley is an interesting one. Throughout Dad’s mesothelioma, Charley has been his constant companion, never letting Dad out of his sight. He follows both Mom and Dad around the house. But once Mom leaves for work, they become a dynamic duo spending a lot of time playing, walking, watching TV, and napping in the recliner that they share.
Dogs tend to be a lot of company, and Charley is no exception. When you talk to him, he seems to understand every word that you say. So… we all find ourselves carrying on conversations with him from time to time.
He also seems to sense when you’re not feeling your best. Charley is usually pretty hyper, jumping on your lap and demanding attention. It was interesting that when Dad returned from his pleurectomy last February, Charley was extremely gentle and spent a lot of time just resting with him.
My husband and I also have a dog, Gus. He’s been a great source of comfort for us as well, always bringing happiness to our lives. Put Gus and Charley together, and you have a comedy show!
These animals are just one more aspect of our lives that we have to be thankful for. God works in mysterious ways; maybe he brought us our dogs to make us smile and realize that maybe laughter is the best medicine after all!
Caregiver of a Mesothelioma Patient Takes “Me Time” to Be at Her Best
When becoming a caregiver in any capacity for a loved one who has been diagnosed with mesothelioma, it’s easy to get caught up in your duties and forget to take some time for yourself. Remember, to be an effective “nurse,” listener, or friend, you have to be rested and centered. It’s important to give yourself some “me time.”
Even though I help Dad with his battle against mesothelioma, I make sure to take some time for myself. I spend a lot of time walking. It clears my head, allows me to relax, and exercise is always a way to make yourself feel good. My husband, Mike, and our dog, Gus, often join me, and Mike and I tend to talk a lot on our walks about anything and everything. It’s a great way to spend time together, laugh and just BE.
Now that the weather is turning warmer, I find myself on our porch swing quite a bit. To me, it’s simply relaxing. Since I was little, I’ve loved to just sit there and let my mind wander. That hasn’t changed.
Getting a massage every now and then is also something that helps me relax. It’s a more literal way of relaxation, getting all the tension out of your muscles. Yoga and Pilates are also some physical ways that help me to relax. Remember the importance of good nutrition as well.
Something else that I really enjoy that helps me on a much deeper level is attending Mass and events at our Church. God has brought us through and it’s important to keep an emphasis on your faith, no matter what. These activities help me to find clarity and peace, even when I’m at my most stressed.
In short, find something that you enjoy and do it. Read a book, go out to dinner, or watch a movie! Your loved one understands that you need some time to do things that you love. Include them if they’d like! Also, remember that there are support groups and counseling if you want to talk with others who are in your same situation. You are never alone.
Taking care of yourself will make being a caregiver easier. Also, make sure that you’re getting enough rest. Your relationship will be better (we all know how sometimes we can lose our temper when we’re tired or overworked) and your time together will be more enjoyable. Life is a gift meant to be lived and shared with others. Enjoy all aspects of it! God bless you all!
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