ISRAEL: Part IV of IV: Living with Metastatic Breast Cancer
This is part two of our contributor and oncology nurse, Susie Newday’s, moving and in depth interview on breast cancer with her good friend. Grab a cup of something warm, and come be a fly on the wall with us, as two friends discuss living with metastatic breast cancer. There is something for us all to learn.
(To catch up, click here to read Part I, click here to read Part II, click here to read Part III.)
Susie: What has changed now after your husband has also been diagnosed with metastatic colon cancer?
Neta: When two parents are sick it’s something completely different. In the past when I used to feel unwell or weak, I could allow myself to go to bed because I knew he was around. In the evenings he would be with the kids and I didn’t have to be there. They saw me at lunchtime when I gave them lunch, they saw me in the afternoon and it was no big deal for my husband to make the kids dinner and be there with them. Now there isn’t that option. He goes to work. He’s also exhausted in the evenings and he climbs into bed. In the beginning he had more energy but for the past few months he’s been exhausted when he gets home from work. I don’t have back-up anymore. It’s very hard without backup because you can’t allow yourself to be tired for even one day. I have to function at a different level than what I had been functioning at before.
S: Did you tell your children when you were diagnosed?
N: Yes. All three times; when I was first diagnosed, when I had the recurrence and when my husband was diagnosed. We consulted with a psychologist about how to tell the kids. We told them the truth. We told the boys and girls separately because there is an age difference between them. I don’t remember the first conversation being very traumatic. The kids were also younger. They didn’t really understand. They were surprised and it was the first time they had heard the word cancer. We told them that mommy has breast cancer and it’s not so bad, a lot of people get better. I told them that I’m going to get treatment and I have the best doctors who are going to help me recover. There is going to be a period of time that I am going to get strong treatment so the cancer will die. I don’t remember any tough reactions or trauma.
When the cancer came back it was a little tougher because the kids were already older. My two older children cried. I didn’t tell them it was terminal. I was told not to say that because no one knows how much time I have so not to limit it by time. I told them that the cancer was back and that this time it was in my bones as well and that the doctors had found the reason for my back pain. I told them I was going to go for treatments now so that I can cope with the cancer. Again I told them that I had good doctors and that I was in good hands.
When my husband got sick less than a year ago, telling the kids was traumatic. When we told our older daughters the younger one sat there and cried. My older daughter was angry and yelled What??? It’s not fair!! You’re sick already. Now daddy? She cried and yelled at the same time. It was a very tough conversation. She already understood as this was the third conversation she had gone through. I started to cry when she started screaming “it’s not fair”. My husband spoke, my younger daughter and I cried silently and my older daughter cried and screamed. The conversation with the younger boys was easier, they didn’t really understand as much. They know that daddy has cancer in his belly and mommy has cancer in her bones
I worry a lot about the kids because obviously it’s very hard on them. My oldest is very angry with God. She’s not willing to pray anymore. I understand her anger. I’m angry too. How can this happen to both parents? With my second daughter I see more sadness.
We haven’t really had any more outright conversations about our illnesses with our kids. There is the day to day coping like if I’m not feeling well then my husband will put the kids to sleep. Or visa versa. So the kids know when we’re not feeling okay. The other day my youngest who is 6 1/2 asked me how much longer are you guys going to be sick? When are you going to be healthy again? I explained to him that it is a very tough disease and it takes a very very very long time to get better. I can’t explain to him that you don’t get well.
S: Physically, how do you manage? With yourself, with the house, the kids.
N: It’s not easy. In areas that I feel are less meaningful and more technical, we have help. We have someone who cooks and someone who cleans. We had someone to fold laundry and we will probably use her again. We used to have a babysitter in the afternoons. Now we have the kids in afternoon programs. In the areas I can release and get help, I have done so. There are certain things I’m trying to keep as is, like having everyone sit down for dinner together. I try to make sure that there is always food in the house. It comforts me to know that there is food in the house and there is what to eat.
It’s a pity to waste energy on things that are not meaningful. I save the energy for things that make me feel good, like if the kids want to go shopping, even though it’s already tough for me to walk a lot.
S: What has been the one most difficult or scary thing that you have gone through since you were first diagnosed with cancer?
N: When I lost my eyesight. Not being able to see was really scary. You lose your connection to the world. I was also very confused. It was a real trauma. After my eyesight came back I was afraid to fall asleep at night because I was afraid that maybe when I woke up in the morning I wouldn’t be able to see again. In general, the scariest thing is losing your abilities. Suddenly, I won’t be able to see. Suddenly, I won’t be able to walk. Basically, it’s about losing your independence. It’s very important to me to be independent. I’m very afraid of becoming dependent. Losing my eyesight meant losing my independence. I needed people to be with me, to go everywhere with me. It was a complete lack of control. Seeing is such an important sense and suddenly you lose it. You only hear and you lose your ability to do things. For me the fear of losing my independence was the worst. If you ask my husband, for him the fear of me being confused was worse. He was able to imagine being with someone who couldn’t see. He didn’t know how he could manage with someone who was confused. I remember the blindness as traumatic, my husband remembers my confusion as the traumatic part.
S: A lot of people want to support friends or family who have cancer but we often say or do the wrong things. Do you have any advice about what we should or shouldn’t do?
N: There is a lot of good will and a lot of people want to help but you have to remember to respect the person and the household. Like in the beginning, friends wanted to come and fold laundry for me but I didn’t want anyone to. That was something I could handle on my own. Also when people were cooking for me in the beginning, there was a constant stream of people coming in and out of the house bringing food. You feel like you have no control over what is going on in your house.
It was very important for us to return the sense of control over our household to ourselves, to conserve the sense of independence of our family. Our good friends who were a constant presence in our house beforehand did stay a constant and that was fine. Those friends also knew to ask beforehand. I told friends and family when it was okay to visit.
S: Sometimes, we say no because we don’t want to trouble other people and when someone insists on doing something anyway, sometimes in the end it is a big help and appreciated.
N: It is possible. Like the few times we’ve had company over in the past year and they wanted to wash dishes and out of manners I told them no but they did it anyways, it was appreciated.
S: Is there anything someone said to you that really bothered you?
N: It really annoyed be when people told me “Be Strong”. What? Like I wasn’t working on that enough? Another sentence was ” I’m sure it will pass.” What exactly will pass? Where is it going to pass to? I am sure there were other things but I don’t remember anymore.
S: Were there people who found it hard to talk to you afterwards?
N: I don’t think so. People tell me that because I’m so open and speak so freely that it wasn’t so hard to talk to me. There were some people who told me they were afraid to talk to me at first but when they did speak to me the conversation flowed. I talk to people about what is going on. I don’t hide it.
S: It must be quite a financial burden to have all the help with the cooking and cleaning and other things.
N: It is. I’m not working anymore and I get a small government stipend. My husband is still working which is lucky. If he has to stop working, the financial side would be very tough.
S: So what things would you suggest that people do if they want to help?
N: Always ask. What is right for me might not be right for someone else. First ask if they want the help. Like with food, say “I really want to make something for you guys, can I?” If you got a yes, then offer a choice of what to bring so the person can pick something that is right for their family. Make sure to ask first because maybe they really don’t want anything. To bring forcefully is also not good because it infringes on their domain. It also obviously depends on how close you are to the person. To bring without asking doesn’t seem to be respectful of the home.
S: Any tips about cancer in general?
N: Go get checked! Every woman needs to be checked even if there’s no family history that you know about. Just go get checked. I really don’t know why they don’t start the screening from a younger age. I was diagnosed at age 38. If they would have done routine scanning from an earlier age they would have caught my cancer sooner and I would be in a very different position right now. I found it on my own and I found it too late. The difference between early diagnosis and later diagnosis is huge. After I was diagnosed, all my friends went to get checked.
You have to gather strength. We don’t know what life holds for us. Who ever imagined that I would have breast cancer and bone metastases? If you would have asked me six years ago, that wasn’t even an option. I didn’t even think of it. When we get sick, it will always catch us by surprise. We’re never ready to be sick. Even if we know there is a possibility, we are never truly ready. When it happens you have to rally a lot of strength and understand that we can’t control our lives and we just have to do our best. That’s what I try to do. I’m fighting the best I can. I can’t do more than that. Ever new day I try to find the energy to fight and I say to myself I’m fighting this. When you succeed in having a good day, it gives you a lot of strength to continue on. If you don’t do that you can sink emotionally and that can’t possibly be healthy. I think that the reason I am not sinking into depression is because I’m invested in doing.
Sometimes it’s better not to think too much and to just be busy. When I had time to think it was really not good for me.
S: What is your wish for world moms?
N: I wish for either a way to catch cancer early or for better drugs to fight it and cure it or at the minimum turn it into a chronic disease that you don’t die from. Breast cancer rates are way too high.
I wish for mothers around the world to enjoy every minute of their parenting because we never know when it will end. I was sure that I would raise my children and live to see my grandkids grow as well. Today, I am not sure I will even see my kids grow up.
We never know when we will leave this world. Don’t push things off. Don’t say when I retire I will do this or that. Parenting is a very precious gift that has no replacement and we don’t know how long we will be parents or grandparents for. Take advantage of now and don’t push things off. We went on a family trip overseas a while back and I am so happy we did. It was a great experience. It was better than having a new kitchen done, buying a new car or having the garden done.
The experience of motherhood, parenthood, of family is the most precious experience in the world, so invest in that and less in material things.
It took a lot of openness and strength on Neta’s part to do this interview series. I want to thank her from the bottom of my heart for having the courage to share her story so that other people might benefit from it.
As far as helping people who are going through any difficult time, be it medical or emotional, I think this article about the “comfort in, dump out” theory is a must read.
Cancer can happen to everyone. Listen to your body, treat it well and educate yourself about cancer symptoms. Learn not just about breast cancer symptoms (which are varied) but also the symptoms of ovarian cancer, GI cancer, lung cancer, pancreatic cancer and all the other cancers out there. Ask your parents about your family medical history. Do the recommended screening tests that are available to you because early detection of any cancer makes a hell of a difference.
Most of all enjoy every minute of your life because there are people out there who are dying for more time.
Who hasn’t yet gotten screened and is now going to get themselves checked?