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.

To explain to another person regarding the scars they are seeing on your body, one must start with one’s self. When another person wants to get involved with you romantically, they want to be with you. They feel the need and the desire of having you in their life. Seeing your scars on your body may make your partner want to be with you even more. They see your scars with a loving respect of how you endured your physical disease of melanoma.

Therefore, it appears from this question that you are more uncomfortable with the scars on your body, then your partner. “Scars” represent many things to many people. There are emotional scars, physical or visible scars. One must acknowledge the “scars” for what they are. Yes, you had melanoma; these scars are my scars, my history, that I had this disease process. I am alive and capable of having a romantic relationship with someone that I choose to be with.

If the scars are bothersome to you, there are various ways that you may cover them and not show them to your partner until you are ready to.

How comfortable are you with your romantic encounter? That is the question that you should be asking yourself. If you feel more comfortable to discuss your melenoma scars before your romantic encounter, then do so.

There is a famous model Parma Parvati Lakshmi. Her scar came from an automobile accident. At first she was reluctant to show her scar. However, over a period of time she decided not to let her scar rule her life. Now she shows her scar with digiity and respect.

Not sure why. I would ask him/her. Sometimes they may assume you already know.

I would say that this is very normal to have these difficulties, but would also say that with time most of my patients are very happy with their reconstructions, and these emotional difficulties usually go away with time. I also have a number of patients who have finished the reconstruction process and have volunteered to speak with new patients, and this can often be very helpful for new patients. Additionally, having a very understanding spouse or significant other, as well as family and/or friends, is usually very helpful.

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.

I love this question too! Thank you!

During my post surgical complications, I knew I could not continue healing at my best in my current state of mind. I also knew that I could not change my surgeon and how he interacted with me. The only change I could create was in myself and how I chose to engage with him and his staff. With the help of author Caroline Myss, (Defy Gravity), I meditated and focused on reinventing my relationship with my surgeon (and my life). I surrendered to the situation and flipped my state of mind from one of fear and anger to love and trust. I genuinely fell in love with my surgeon. I had to in order to be authentic to my new path. I softened and relaxed ………,and he did too. He slowed down and got to know and care about me as a person. This was an amazing gift that I really did not appreciate the signifiacance of at first. Actally being a person that mattered rather than one of many patients was critical to my "survival" (primitively speaking).
Needless to say, my reconstruction surgery went very well and I am continueing to heal with full appreciation for my new life that seems to be brimming with grace and opportunities.

I was fortunate to have my chemotherapy up front, which allowed us to actually see the tumor respond and shrink......therefore also get any cells that may have escaped (the REAL Bad Guys). This also allowed me time to really explore my surgical options. I had a fabulous general surgeon and interviewed 3 plastic surgeons. I learned that a nipple sparing mastectomy might be an option, even though I was told by at least one surgeon that it was not an option. I subsequently learned that very few surgeons do this new proceedure. Anyway, I found out through a friend of a friend of a friend (litterally) that there was a great surgeon at Emory who did the nipple sparing proceedure. I met with him and he felt that I would be a good candidate (small breasted and the tumor was far enough away from the nipple). Also, he was an oncoplastic sugeon, meaning he would do the entire proceedure himself, mastectomy and reconstruction. This meant a more cohesive surgey and less time under anesthesia. I have to say, the before and after photos did make a difference to me as well. No visible scar and a natural nipple, not a tatoo. I feel so Blessed to have even had a CHOICE. I am Blessed :o) I was his 50th nipple sparing mastectomy.

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

Another great question about, really, how we all communicate. And again, turning this around by asking a question can help illuminate.

Ask the child to consider what they do or how they feel when they are thinking a lot about something, or upset about something. Maybe they don't want to talk about it, or they get in a bad mood. Explain how Mommy or Daddy is no different. Tell them you understand it's hard when someone is quiet when they normally are not. Or someone is short-tempered, when normally they are not. It's the same when kids throw temper-tantrums. It's hard for the parent.

I think it's important to join them in this situation, and honor their emotions. Show them they are not alone. That you understand this new behavior is, well, scary. But also crack open the door of their own empathy toward what their parent is feeling.

Perhaps suggest that the child request time to do something together with the parent. "Hey mom, you must not be feeling great right now, but maybe when you’re feeling better we can read a book together. Or play a card game. Or go for a walk. Can we do that at 5 today?" Setting a particular time, instead of making it vague, is helpful for the child to know there is a solution, and for the parent to have time to prepare or suggest another time.

It's also important for an adult to help free the child from feeling he/she is being bad. That he/she is not acting perfect, so he/she is a bad kid and that's why Mom or Dad is being short tempered. I think there's nothing wrong with working with the child to explain that everyone is working within a crisis at home. And that sometimes in a crisis, nobody knows how to deal. By asking, "What do you think would be helpful to mommy?", you can set up an alliance with the child. Help them problem solve. Hear their ideas and worries and provide a pressure release. Then, "Would you like me to talk to Mommy? Would you like for me to be there when you talk to mommy? Would you like to talk to Daddy or have me say something?"

Don't forget that the child's school teachers and counselors are an important support system and set of watchful eyes. Grades sometimes start to slip when a child is in crisis at home.

There are also national summer camps, like Camp Okizu (www.campokizu.com) or Camp Kesem (www.campkesem.com), that are wonderful for normalizing for these kids the feelings and behaviors they have been feeling and seeing at home. Children have been transformed by these camps.

At the end of the day, it is about community. The family community and the people who love and surround them. It's about supporting the kids in this crazy time. Sometimes it takes a third person. So if you see something happening, often you can (and I encourage everyone to FIND THE COURAGE) to help do something about it.

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've been attending a support group and the therapist suggested putting a rubber band on your wrist, taking 20 min to "spend" with our negative thoughts, then pulling on the band to "snap out" and not dwell there. On the other hand if it's one of those times where it's not possible, just "go there" with a sad movie, or music that you can cry to.

Excellent question. Administrators that patients will most likely encounter are those in the records departments, receptionists, lab personnel, etc. There are many, many administrators -- a good number of whom are nice and easy to get along with. For these types of administrators, communication is easy. It is important to be polite and cooperative.

However, if there is an unsavory administrator, such as someone in the records department refusing to send records to a particular doctor (even after you have given your permission), then you have the right to employ what I term civil disobedience and speak up. Assert yourself to that administrator and refuse to be bullied. Report him or her if possible.

Do not tolerate abuse; if an administrator is badgering you or is uncooperative with your reasonable needs, then you need to speak up. I have refused to cooperate with unreasonable personnel. In one case, during a particular hard time in my medical life, a receptionist called me up to her desk and announced in front of everyone in the waiting room that I owed money.

I told her that I did not want to discuss this issue now, as I didn't know whether I had a recurrence of cancer. I also told her that she was never to talk with me like that again.

It really does depend on how administrators treat you. Be polite at first, but then speak up if you sense an injustice is being done to you.

I agree with the above answers. Statistics only tell part of the story. Medicine is a science, but it is also an art, and people overcome insurmountable odds. Feel free to tell him that you don't work well with statistics and that you cannot deal with pessimism.

You can also get a second opinion from a doctor who is hopefully more optimistic. Sometimes hearing another doctor's opinion can be healing to the soul.

Your surgeon or oncologist would be the best resources to explain your pathology report. It is helpful to obtain a copy of the final pathology report and write down the questions you have about the report prior to your appointment. This way you go into your appointment prepared to have a discussion with your healthcare provider.

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.

Part of the discussion of treatment options includes the percentage of success each treatment modality offers for a specific type of breast cancer. In an academic medical center, the physician treating patents are also researchers. They have knowledge of cutting edge treatments, and will answer all questions to the patient’s satisfaction. Bringing a list of questions to your appointments and having a friend or family member available to takes notes can be very helpful.

Ask your loved one’s nurse if it’s okay to bring in pictures and comfort objects, like blankets and stuffed animals, to help them feel more at home. You may also want to offer to help with routine care, like combing hair, swabbing the mouth, massaging or putting lotion on their arms or legs.

To learn more about ICUs, check out our Prepared Patient Feature, "Cutting Through ICU Confusion," here: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue8.cfm

Doctors recommend that one family member act as a conduit for information between the rest of the family and the medical team. This person can write down everyone’s questions and speak with the medical team at a convenient time. Don’t be afraid to ask your doctor to explain if you don’t understand the terminology they are using. If you are having trouble communicating with your loved one’s doctors, you may want to talk to a social worker or case manager. The hospital may have a social worker on staff or be able to recommend one to you.

To learn more about ICUs, check out our Prepared Patient Feature, "Cutting Through ICU Confusion," here: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue8.cfm

Talk to the ICU nurse. ICU nurses reassess pain regularly and administer medications as necessary, but it doesn’t hurt to advocate for your loved one.

To learn more about ICUs, check out our Prepared Patient Feature, "Cutting Through ICU Confusion," here: http://www.cfah.org/hbns/preparedpatient/Vol4/Prepared-Patient-Vol4-Issue8.cfm