Family Communication

It really does depend on the age of the sons. Two of mine were in elementary school and one was in preschool. My husband told all of them after school was out, in a comforting demeanor at home. Since he didn't show any alarm, they took it well. But of course we never really know how they are feeling deep inside unless they share it with us. My latest blog post is on this very topic at janhasak.com/blog.

Good question, not sure I really ever thought about it. With Ovarian Cancer they technically can not diagnosis you until they do surgery. They can't do a biopsy per say like can be done with Breast Cancer but based on all my symptoms and the physical issues I was experiencing & the visit to an oncologist I knew it was cancer 3 weeks before my surgery. I wouldn't say I was in denial, quite the contrary, but I tried to seperate my emotions from the facts. I went into research mode & spent days on end on the internet learming all I could about Ovarian Cancer, treatments, statistics & so on, all of which scared me to death. For me it was all about finding the right doctor, hospital, course of treatment etc. Doing these things let me feel like I had control over something I really had no control over. Late at night usually though the fear of the unknown that comes with a cancer diagnosis would creep up on me and I was filled with the fear of the fact that I had cancer and I was going to die. I was very frank and open with my family. I went for a CT scan on a Friday at 12 noon and at 4pm the internist called me to tell me they had found a HUGE abdominal mass and ascites (free floating fluid in the abdomen)and we set up and appointment that following Monday. When I got off the phone with her I googled "abdominal mass and ascites" & kept coming up with Ovarian Cancer links. I called my husband and my mom and told them exactly what I was finding and they were trying to tell me that I was jumping to conclusions, to get off the internet and wait until I saw the doctor on Monday. Well by Monday I had the name of an amazing world renowned gyn/oncologist and was calling his office and had an appointment set for that Wednesday. It was hard telling them this as the day I saw the oncologist was 5 years to the day that my dad received his cancer diagnosis & he passed away 6 days after that. My husband & family were and still are amazing and very supportive.

Cool MarySClem, that you found a way to compromise with each other!

I think this question gets at the heart of the issue that I am so passionate about.

So begin to answer this question with a question.

Let's say the child is named Sally. Why do you think Sally might tell her friends about her mom's cancer? Because she wants support? Hmmm, likely. Because she wants to share something at the root/heart of her life? Hmmm, certainly. And why would it be important to you that she NOT tell her friends? Because you want your private life to remain private? Because we don't talk about illness outside the family?

Yes, indeed, we all live with secrets. I'm here to say that most secrets aren't secret. Especially a secret that has such dramatic outward signs, both from how you look physically and energy levels, but also the amount of time that you are not where you usually are (because you are at the doctor appointments, or on the couch.)

There seems to be a stigma associated with cancer that isn't there with something like, for example, heart disease. Or asthma. What happens when we keep our illnesses private is that right at the time when you need your friends most, you don't allow them to help.

And people want to help. We'd all be a better community if we did help. It feels good to help, and it feels great to be loved and helped.

I tried to use humor and positive things in everything. For my daugther, I told her (because I had a wig) that instead of wearning my hair all the time like her, I got to take them off each night. SHe found that very funny and was fast saying so to enyone who would hear her (she was 3 at the time). I also told her that when my own hair would grow back on my head, it would be a sign I was getting better. She loved touching my scalp and was ecstatic when the first hair started growing back.

Just like AndreaNugent I used an image book with a story about a mom having cancer and getting better. I also tried to get as much help as possible from family and friends to keep my kids routine as stable as possible. They still went to daycare and swimming lessons, we still tried to go out once a week to eat at familiar restaurent, etc.

Debbie,
This is an excellent question...due to HIPPA laws we can only speak with the patient's family members that are listed on the patient's chart regarding the patient's specific case.
Usually I recommend everyone write their questions down to bring into the patient's appointment. This includes spouse, children, sibling, etc questions.
Unfortunately, I find that many times children are left out of the equation unless they are adult children. It is very important for all close family members to understand the patients condition and proposed treatment.
I personally am only able to answer questions of those family members who come in or call with questions and as said before they must be on the approved patient's HIPPA list.

An advance directed is often offered at the point of admission to the hospital or in a physician’s office. An individual has the option of naming a family member or friend to act as their voice should they be in a position where they are unable to communicate. Choice of care options can be communicated in writing as part of the advance directive, one can be very specific. It is also recommended that the individual has a conversation with her physician and loved ones about their specific requests. Hospital and physician will indicate the presence of the advance directive in the patient record.

Individuals with concerns about how to broach the subject of end of life care with loved ones should speak with a counselor.

Cancer is a disease of both the individual and their families. Spouses, parents, children, and significant others are profoundly affected by the diagnosis. The first step in helping our spouses/significant others to grasp the emotional changes we've been through is to understand that although it may be difficult for them to express their own feelings, in the majority of cases, they care very deeply about what has and is happening to us.

Unfortunately, just as our diagnosis was a shock to us, most often spouses and family members are tossed into the caregiving role without warning and without the necessary communication skills that are so important for providing compassionate care. Our loved ones may also be so affected about what is happening to themselves in relation to what is happening to us that their focus is inward or expressed inappropriately. For example, a spouse or loved one may be very angry about the cancer diagnosis and treatment and inadvertently project the anger towards you. Fear also underlies blocked communication and your loved ones may be afraid that they cannot meet emotional needs or provide adequate comfort. These factors often put the responsibility of effective communication on the shoulders of the individual who is experiencing the cancer. We must be able to identify our own emotional needs and then take responsibility for communicating these needs to our loved ones.

In a practical sense identifying our needs begins with "I" statements to our loved ones, such as "I want" or "I feel" or "I think." Being clear and clarifying our needs is important with statements such as "I sometimes feel frustrated when my hands ache from neuropathy and I'm unable to do the chores around the house, therefore I need you to help me." Asking your loved ones if they understand your needs is also important. An example might be, "I keep asking myself if I should share my diagnosis with my parents. What do you think?"

Finally of course, we must be receptive to the feedback that our loved ones communicate and also be receptive to their help and support without being defensive. It is a challenge for our loved ones to grasp the emotional changes we've been through when they are going through their own changes at the same time. Once a cancer is diagnosed the repercussions reverberate throughout every relationship--spouse to spouse or individual to individual. Therefore, the first step is clear understanding of these changes through effective communication. Besides taking the responsibility on ourselves alone there are support networks and support groups that can also help your loved ones understand the journey you are taking by listening and being informed by others.

Jamie, I'd like to add to your wonderful insights here. Adults sometimes hide their diagnosis because of their own experience with cancer. If they grew up with a parent going through cancer, treatments and outcomes were very different 20, 30 or 40 years ago. And if it wasn't discussed, the underlying message absorbed was, "cancer isn't something we talk about." As irrational as it sounds, it might seem easier not to talk about it. Sharing with others, especially children can be overwhelming especially when you're struggling to wrap your own mind around it. Yet, if it's not talked about children will often imagine what's wrong...as you noted they sense the unspoken. The trouble with "imagining" what's wrong is that it can lead to false conclusions, doubt and even shameful feelings. Children may think that they're somehow responsible for what's wrong in the family. It's also not uncommon for children to have drastic thoughts such as "is my mom going to die." It's a common fear that passes through adults minds, and children are no different. Cancer won't get worse by talking about it! Children (at all ages) respond well to visuals, hence picture books are very helpful. Books also afford a platform to journey through difficult emotions together. Children are the focus of all the tough topics I write about. They are alongside the adult making the journey, so it's imperative that they be included as helpers and encouragers. Equipping them with understanding on their level (as you noted) is a life-long gift for patient and child. Thanks Jamie. ---
Maryann

The simple answer is yes, my marriage changed profoundly, and for the better: but (you knew that was coming!) there was a huge price to pay. It is no joke when I say that "only the first 25 years were hard." We had a great marriage, forged in the fires of affliction, courtesy of two bouts with cancer, two unrelated hospitalizations for depression, and all of the struggle and strife necessary to prevail. One recurring theme was the spastic nature of our intimate life, which sprang from his history of emotional neglect, and my history of abuse, which we periodically addressed privately and therapeutically, with uneven success.
We faced my second bout with breast cancer with steely determination, expecting to emerge stronger for it in a few weeks, just like the first time 13 year prior. We DID emerge stronger, but not in weeks! The eruption of PTSD, triggered by the tearing of my flesh during reconstructive surgery, hurled us onto a turbulent unknown. Initially we had a surprisingly joyous reunion, completely free of the anxiety and dread that had haunted our bedroom. My delight in my newly girlish figure more than compensated for the loss of physical pleasure.
Unfortunately, with time and familiarity, old patterns returned and we resumed our miserable pas de deus, only now it was more angry and desperate.
That was four years ago, and since then we have recommitted ourselves to the hard work of facing our fears, forgiving wrongs, and opening up to each other more radically than ever. This has created a sacred space for us to discover each other anew.
That is a long answer, which I am happy to expand if you want more details.
My life is an open book!

Absolutely. I often tell my patients that variations of this question are why I have a job. It is incredibly hard for people to to watch someone they love suffer. Most of us have the impulse to try to "fix," to make it better, to take some kind of concrete step to deal with the problem. And this impulse can mean that we actually totally fail to do the most helpful thing, which is to listen in a kind and compassionate way. I wrote a blog post about this issue a while back, so feel free to point loved ones over there for some coaching on compassionate listening: http://bit.ly/ozyxg2 I specifically deal with the tendency to try to fix. However, here are a few steps to deal with someone who is not listening.
1. Does your family or friend network have a "key communicator?" That's the person who always manages to keep everyone else in the loop, who coordinates family time. If so (and if that person isn't you), I'd encourage you to sit down with that person and outline your needs. Specifically, I'd be explicit about the fact that one of the things you need most is for people to allow you to express your feelings without trying to fix the situation. Then, I'd ask that person to spread the word.
2. Sometimes, being direct is the best way to get our needs met. This won't work with everyone, but some family members will respond well to hearing, "I can hear how much you want to help me, and I know it's hard for you to watch me go through this hard stuff. The most loving, supportive help that you can give me right this minute is to let me just empty this out of my head, so that I can set it down for a while."
3. If you're noticing that you have a lot of tough feelings that you need to process, it might be appropriate to take that to a therapist (or a pastor, or another neutral party). I know that I mention this in most of my answers, but there can be a huge relief in knowing that you're allowed to say whatever you need to without having to censor yourself.
I hope that is enough to get you started. Please feel free to ask me a follow-up with a new question if you'd like more details.

I think learning of my daughter's diagnosis was much worse than facing my own cancer diagnosis. We had no family history of breast cancer so I never thought about her developing breast cancer.

Fortunately, when she developed pain and intermittent nipple discharge, she went to her doctor. At 27 yr old, they immediately told her she was over-reacting and dismissed her symptoms as related to breast feeding. Her youngest child was long past breast feeding so she wouldn't give up. Finally a nurse practitioner took the symptoms seriously and she ordered a ductogram and with the dye and compression mammograms the small areas were found, biopsied and diagnosed as early stage breast cancer. I'm not sure she would have taken these symptoms seriously if she hadn't been through the challenges of my diagnosis 9 yr. earlier.

We lived about 600 mi away from one another but she got the biopsy report while she and her family were visiting us. I was grateful to be able to be there to give support during that difficult time.

I'm called upon daily to assist women who have just received a diagnosis of inflammatory breast cancer but it's tough to give guidance to your own daughter. I helped her obtain a 2nd opinion of the biopsy slides (hoping that diagnosis was incorrect), worked with her to research treatment options, and prepare a list of questions for her surgeon. I realized that she would need to make her own decisions and while I could provide information, I needed to be careful and not overwhelm her and listen to what she wanted and needed. It had to be her choice.

In the end she opted for a bi-lateral mastectomy with sentinel node biopsy followed by reconstruction. It was a tough decision but it was what she decided and I was proud of the way she faced the diagnosis.

After her diagnosis, my oncologist suggested genetic counseling since our cancers were both aggressive and diagnosed at a young age. Ultimately I did opt for BRCA 1/BRCA 2 testing and no known mutation was found.

Thank You ... I really appreciate this. The one's who use tough love are very close to me ... husband and daughter. I learned a month ago I have stage 2 breast cancer. The good news is it did not attach itself to the nodes. I am struggling with not really knowing IF I have cancer. I had the tumor removed last week and have an appointment with the doctor to go over the results and start treatments. If I am asking whether or not I have cancer, then I think they might be asking the same thing.

It's hard on all of us. No one knows what to say really. And I don't know how to express my needs without breaking down. I have said that tough love is not what I need right now. I tell them both that I need tenderness and understanding.

I feel like I am caught in a wind tunnel and I am being spun around with no escape.

I wish I could please everyone and help them with the feelings they have too. They are just as confused as I am and I wish they didn't have to go through this at all. It's almost like I feel guilty for doing this to them.

It's such a vicious circle. I don't know what to do ...

My son was 2 years old at the time I got diagnosed, so for me it was very important not to upset our daily life and routines. I also felt it was really important to include him in every step of my journey,especially when my hair started falling out. After a week of it falling out all over the place I decided to go to the barber and shave the rest down. I took him with me so he could see mommy getting a haircut instead of shocking him and coming home with no hair. He thought it was cool and when I was finished he said "I like your haircut mommy,now you look just like me." Through it all he noticed changes especially because some days instead of playing outside we may have played in bed, but he knew mommy was still mommy. My family and friends took the news much harder than I did and I found myself comforting them when they probably should have been comforting me. However, when they saw how I handled everything and that I was determined to get through this it eased their fears. I got up each and every day with a smile on my face and they quickly realized that 1. I was going to be just fine and 2. Cancer was not going to get the best of me or change me.

Like dlebleu, I was also lucky to have my partner of now 27 years by my side through my diagnosis. Fortunately for us we had established a great relationship of communicating over the years that helps us through any difficult time. That skill served us well during our battle with breast cancer. My advice would be to talk it out and talk through it. Share your feelings and your fears and remember that even though you might personally be dealing with cancer, your partner is dealing with a lot too. They are concerned about your well being, your medical care, and often take on additional duties around the house. Sometimes they might need to talk to someone besides you to express their feelings. Organizations like the Cancer Support Community and Men Against Breast Cancer offer support for caregivers and could be what your partner needs if they are having a difficult time.

Our boys were 3 and 4 at the time. We chose not to say anything until we knew more about the plan for treatment. However, children are very intuitive. Before we told them, by four year old began asking questions. "Mommy, is one of your friends sick?" No dear.
"Is one of your friends dying?" No dear. I could tell he was affected by all the hushed conversations. When we did tell them, we explained that mommy had some stuff inside her that was making her sick and the doctor needs to take it out. The 4yr old had had some minor surgery the year prior. He asked me if I would be going to the same hosp, i said yes, He asked me if the doctor would use the same tools. I said yes. He then looked at me and said, "Oh, then you will be fine." and scampered off. When I came home, he helped with the drains, and it made him feel so important. The younger one really did not comprehend any of this, and neither remembers anything. I never said the word cancer. At the time, my mother was losing her battle, and died seven months later, and my older son's best friend's mother was losing her battle. We feared that if the boys knew I had cancer, they would think I would soon die. I would not change the way I handled it, except maybe to tell them at least something right away. I am sure the wheels were going in their heads and likely this caused some stress.

In my book, I talk a lot about this subject. In fact, I end the book with a list of Do’s and Don’ts: Things you can and cannot do to help a person who’s been diagnosed with a life-threatening illness. I’ve heard from my readers that it is one of the chapters that helped them the most.

If you are the one who has changed and you are unsure of how to reintroduce yourself to your family and friends, I think it is really important to be open about who you are now and how you are feeling.

I underwent a major metamorphosis, which I talk about in my book. Some of the things were very obvious, but others were more subtle. I was lucky in that my husband realized the differences pretty quickly and on the ones that weren’t so pleasant, i.e. lashing out in frustration, he was good to point out to me that he was in my corner and I didn’t need to be so harsh. That usually brought me back down.

For others, I found myself just being honest. I would say things like, “I just don’t think that way anymore,” or “I hope you won’t be offended but I’m not the person I used to be and it may take a while to get used to the new me.” Most of my friends were pretty wonderful about tiptoeing around me until they figured it out.

I am sure, if you are like me, there have been a lot of weepy moments. I didn’t get embarrassed by them, I would say, “You know, ever since I got cancer, my bladder has taken up residence behind my eyeballs.” Joking about what was going on put everyone, including myself at ease and I found a lot of empathy that way.

I also had to re-evaluate several of my relationships and I walked away from some of them, including the one I had with my mother. I learned that poison comes in many forms and the relationship I had with her was toxic. I could not afford to have toxins in my life anymore and so I made the decision that I had to get out of it. If I can give you one piece of advice is it to give yourself permission to do whatever you have to do to protect yourself during this vulnerable time.

The more time passes, the more comfortable you will become in your own skin and the more comfortable others will become with you. Just don’t feel guilty about what you need to do and don’t hesitate to express your desires where others are concerned.
New Answer

The first thing a loved one needs to realize is that they are no longer dealing with the same person they have known and loved their whole relationship. Once someone has been diagnosed with a life-threatening illness, their entire personification can change. They are no longer able to sort information as before. I am sure it is a coping mechanism, but the brain seems to check out. So everyone involved will have to relearn how to relate to this new person.

If you are the main caregiver, you need to be prepared to take over the role of eyes and ears. Bring a notebook with you to doctor's appointments. If you don't understand what is being said to you or your loved one, don't hesitate to ask for clarification. Write down everything because what your loved one hears and what you hear will be totally different. Patients really can only process bits and pieces and because most people are going to be dealing with terms they have never heard before, it is extremely important in those first few visitations with physicians to understand what is being said. Again, write it down and then you will always have it as a reference.

Also, a caregiver is going to find that their loved one will be more irritable than before. They will probably take their frustration out on you because you are their safety net. They know you will be there for them no matter what, so you are going to get the brunt of the emotions. When you feel that you are being overly put upon, give yourself permission to retreat. Bring in a friend to help for a day and take some time off. You can't be of help to the patient if you are too stressed too. All this lashing out comes from fear of the unknown. There are emotional stages to a cancer diagnosis, just as in a death, because in a lot of ways, it is like a death in that the patient has lost their reality as they knew it. You have too and there will be no time to categorize how to deal with it. I strongly recommend Elizabeth Kubler's "The Five Stages of Grief." It will be a roadmap to the emotional journey everyone involved will be taking.

If you are not the main caregiver, there are still plenty of ways to help. First, be a support system for the main caregiver. They are going through as many emotions as the patient and they are asked to carry the sometimes impossible burden of juggling their own responsibilities with the newfound ones from the diagnosis. They also need to vent and if they do, sometimes it seems like they are unfeeling or unsympathetic, but nothing is further from the truth. They are human and need to express their frustration, just as the patient does. Be that shoulder for them and let them know they have a safe place to fall if they need to.

Additionally, and I can't stress this enough, be supportive of whatever decision a patient may make about their care. You have not walked in their shoes and so you cannot say what is the right or wrong thing to do. Whatever you feel about it, unless it is supportive, keep it to yourself.

It was very hard to share with my parents. They live in Florida and I am in New York City. I am also the baby of the family and single. I know they would worry about me a lot and it could effect their health. I never even told them that I found a lump and I was going for tests. Didn't want them to worry if it was nothing. So much for that.

When experiencing fear of a post-treatment recurrence, I tell my friends that the best thing they can do for me is pray and meditate. It's important to find friends who can handle your expression of fear without judgment or emotion. A loved one may be too close to you to listen to those fears without panicking. A volunteer from the American Cancer Society can be an objective source of support, there just to listen and affirm any anxiety. For breast cancer the ACS offers Reach to Recovery volunteers. I've benefited from this program and now volunteer in that capacity.