Author: Lisa Hyde-Barrett
Mesothelioma Caregivers May Benefit from ‘Talking it Out’
“I had no idea that my husband would be this sick.” “No one told us that he would have to go to rehab.” “We never would have imagined that this would happen.”
Recently when listening to a patient and his family talk, it reminded me that everyone needs to tell their own story. Just as every mesothelioma diagnosis and journey is unique, so too, is everyone’s story. We all bring our own perspective and expectations with us. Whether those expectations will become reality is out of our hands.
The next time a family member, friend or co-worker asks you what can they do to help, it might help to just talk to them. Tell them your experience, tell them how you felt when the treatment plan did not go as planned, how the symptoms are progressing, or how things are going better than expected. It can give you the strength to continue.
A mesothelioma patient and his family are told beforehand what the risks and benefits of all procedures are – it is required by law. When hearing the list of risks, no one wants to think it could happen to them or to their family member. When the plan goes off course, it is doubtful that you were not told of the risks vs. benefits of the treatment plan. Rather you hoped and prayed that you or your loved one would not be whom the doctor is talking about when told of the possibilities.
When things don’t go according to plan, or according to your plan, it is a good idea to take a step back and realize the caregiver may need a lot of support. Often times it is the caregiver that needs so much. This is not a time to do this alone. Let people in and tell them how you are feeling. Possibly you are scared, overwhelmed, sleep deprived and not well nourished. This all sounds so minimal but it is so important to pay attention to the caregiver and take care of them.
Trust me if the patient is in the hospital or under the care of physician he or she is well cared for. It is important to keep things in perspective and hard to if you are not well cared for. Please allow people to help. As stated before maybe you just need someone to listen to you.
Know more about Mesothelioma and how you can deal with it.
Nurse Explains Mesothelioma Support Team
When you are diagnosed with mesothelioma, you will have a team of medical professionals who will help you through your journey with cancer. After you select your specialist, you will be assigned a large group of cancer experts who will be by your side and available to you throughout your treatments. I will explain to you what kind of team we have where I work.
First of all, you have to prepare for your first appointment. Typically there is a new patient orientation that takes place on the same day as your initial visit with your physician. It can definitely be overwhelming, and there are a lot of things to do and faces to remember. But keep in mind that you can always ask questions, and it is a good idea to bring a list of them with you. In fact, one thing you should bring with you is a notebook or folder – something that is secure and can hold medical records and critical information.
The group that runs the orientation phase of the program is led by our social worker and chaplaincy service. In this brief session, they will review options to help make your journey as smooth as possible. For instance, they may be able to assist with housing options if you are out of state and need assistance. Also, they can help with paperwork filing for disability travel arrangements. If desired, they can connect you with another patient who has already traveled down this road. You will meet other patients and families who are at the same stage of life that you are: shock and disbelief.
Finally, the doctor comes in and gives a brief PowerPoint presentation about his program and explains in detail how the program works. There is time for question and answers, but by no means does this take the place of an individual appointment about your specific case. You will also be given a battery of tests and assessments about your emotional and physical health, and your needs. Do try to remember that the better picture the team has of you, the better they can handle your case. The program really caters to the needs of the individual patient.
The stage of your disease will determine your treatment plan. Possibly you will undergo chemotherapy or surgery. This is where you will be introduced to an oncologist if chemotherapy is the option. A nurse will help with your appointments and help educate you about the process. Palliative care could possibly help to improve your quality of life. If you are experiencing pain or anxiety, this will also be addressed. Many people like to choose alternative therapies and some centers offer support for this as well. Where I work, we have a Reiki specialist that can help alleviate anxiety and help you to relax. There is a chaplaincy that is available as well.
A nutritionist is provided to help improve your overall status whether it is to help you gain weight or to help you choose more nutritious food. Possibly you are having difficulty swallowing, and if so, they can help you choose foods that are easier to consume. There are many professionals that you will be involved with, but remember, this is all for you so take advantage of these resources and make the most of them.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma case, feel free to contact us.
Mesothelioma Survivor Weighs in on Being Her Own Advocate
During my long journey of battling mesothelioma I have had to be my own advocate on many occasions. I had to first find a specialist who would help me deal with my war against mesothelioma, and then I had to decide if this was the treatment path to follow.
In an ideal world, it would be wonderful to have a team of specialists behind you, giving you the advice you need to make that informed decision about what to do next. It seems though, that while some doctors want to take full lead on treatment paths, others do not. It also seems apparent that while the older generation believes they should do what the doctor says, the younger generation questions more about what the treatments can offer. In some cases, doctors do step back and allow the patient to take more control over what treatment they wish to take, and they will help them through their journey no matter where it takes them.
Having mesothelioma is not only mentally tiring to the patient but also to their families. I have discovered through friends that are dealing with a mesothelioma diagnosis, if a man is the patient, it is often his wife and daughters who are searching the internet and asking the questions on forums to find out what treatments are available, and where the specialists are. Hence, they sometimes take the role of lead decider or advocate.
When it is the woman fighting, in my opinion, we seem to want to take total control. We also ask the questions that maybe we don’t always want to hear the answers to.
It can be daunting taking control of how you will fight a cancer that you know will ultimately win, but seeking as much information as you can about all treatments should always be the first step. Take time to consider the options given.
Taking control of your destiny in illness is extremely hard. Many times I have gone back over things and wondered what if I had done this first or tried that. Whatever we have done or tried, we can’t turn the clock back and we have to face our decisions full on. I have found I still question some of the options I have taken, and all I can do is hope they were the right ones for me.
There are no easy answers in how to deal with treatment or how we control our own destiny when fighting the mesothelioma war, all we can do is hope the choices we make or the direction given by our specialist is right for us.
Holding It Together While Living with Mesothelioma
Over the many years I have been fighting mesothelioma I often have the same question asked of me, “How do you hold it together?”
To be honest it is hard. I am trying to be strong for my family and friends, but I am afraid that any sign of weakness will let them down or show that I am not willing to fight to spend more time with them.
Others I’ve talked to who are mesothelioma survivors agree that it is hard to keep smiling when the doctors knock the positivity right out of us all, always giving the grim news on diagnosis that we have less than 12 months to live. Not only does that affect us, but it also affects our loved ones. They then feel they have to be strong for us and not show any weakness either.
I have known some people who have been diagnosed with mesothelioma seemingly ignore the fact that they are sick. This approach then makes it harder for the family because they think their loved one is hiding away and not facing up to the grim prognosis given. In truth most mesothelioma patients don’t ignore it or try to hide, they just don’t know how to deal with the diagnosis and believe this way they are being strong for everyone else.
For those of us who accept it off the cuff, we decide there and then that we won’t be beaten and put on our battle face. The only problem is that we forget to take it off and reach out. Then as our treatments wear us down, we believe we can’t let our loved ones know how bad we feel; we are ‘leading by example,’ we are ‘coping and fighting.’ Yet sometimes inside we do want someone to say to us ‘It will be fine,’ or ‘You’re just having a bad day.’ Instead we find we can’t share our worries with them for fear that any mention of the word mesothelioma will end the conversation. Our partners don’t want to think those bad days or those new pains are cancer related. Doing so means they may have to face up to their own worries, and their hold over their own emotions may fall.
Who Are We Being Strong For?
We are all being strong for ourselves, our family, our loved ones who mean more to us than life itself, but then we deny ourselves those bad days when we can’t cope. The longer we keep that battle face on, the harder it is to break down and say, “Hey, I’m not coping as well as you think.” And because we have that battle face, our families and friends do too, which means they can’t say it either.
Finding a balance where partners can be truthful and honest is difficult. So how do we break this chain reaction? I’m not sure everyone can. There are families that can face up to mesothelioma together and discuss it, they share the pain, the worry and the fight. Unfortunately, not everyone can do the same. Deciding to share your battle with mesothelioma in a way that works for you can help ease some of the emotional strain.
I started a journal at first, pouring everything out, but then I was afraid my husband would read it and think I was weak or I couldn’t cope, so I started a blog, which he does not read. To me it was a release to talk about my pain, anguish and life, and I knew others were out there were feeling the same. I hope my blog will tell them realize it is ok to feel this way or that pain can be normal. Maybe by reading what I have written, they too will find a release.
So how do I hold it together? All I can say is I just do.
Anxiety Before Followup Mesothelioma Scan
The following post is Part I of an article from Jan Egerton, a long-time mesothelioma survivor. Jan has suffered many setbacks during her battle with mesothelioma, and here she discusses her last struggle with chemotherapy and the anxiety leading up to her CT scan.
After a terrible few weeks leading up to the appointment for my followup CT scan, I had set my mind that no matter what, I was having chemotherapy for the third time. I was dreading the chemotherapy, but with the choice of something that could work against me or only one trial on offer in the UK what choice did I have?
I still class myself as a healthy person, the only thing wrong with me is mesothelioma, and okay, this annoying bile problem that has developed over the years from a mixture of the side effects of chemo and having my gall bladder removed to prove a point. [Jan has been struggling with bile buildup in her stomach.] I have found I don’t ail from the normal things that people without cancer do.
On the eve of my first chemotherapy infusion I started with one of my “sessions”, this is when my mesothelioma is on the warpath and does a kind of growing surge, at least that’s what I say. My temperature drops to around 35.3C [95.5F], I can’t get comfortable and I feel like my adrenalin is pumping. When they took my temperature before commencing the infusion, again showing it was low, I was worried they wouldn’t go ahead, but I told the nurse it would be alright I was having a “mesothelioma growth spurt.”
I knew the minute the chemotherapy started pumping through my veins it would do some damage [to the cancer cells], even at the low dose of 50% of what my body could handle. That night my body hurt, each area where my mesothelioma resides told me it wasn’t happy, I could imagine each tumour opening like a flower to send its seeds out and the chemo creeping in and killing all the seeds. It was a full out war going on inside.
The second infusion wasn’t a good one [November, 2012], my body took a dislike to the carboplatin as it was pumping through my veins, and I found myself in an ambulance being transferred to a hospital with an A & E department. Needless to say that was the last chemotherapy I was allowed.
Now I really dreaded the upcoming CT scan: my aches and pains were worse, my imaginary steel cage that tightens around my left ribs had turned to a solid iron one, each movement feeling restricted, my back ached and I felt dreadful. My bile problem had also increased in intensity, and I was sure when I finally had my CT scan, some two months after my second infusion, it was going to be extremely bad news.
I was giving myself a year at most, so I looked at projects I wanted to get done before I was too ill to complete them. My life with my husband was the most important one, creating a storyboard of our time together, the happy times, the dogs we have poured our love on, the holidays we have had – I wanted it all mapped out and put onto DVD’s so if he wanted to remember me all he had to do was press play.
Read Part II of Jan’s story next week to find out the results of her scan.
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