This is part three of our contributor and cancer nurse, Susie Newday’s, moving and in-depth interview on breast cancer with her close 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. (Click to catch up and read Part I and Part II.)
Susie: Your diagnosis changed your life. How did it change your life in practical terms?
Neta: When I was first diagnosed, it almost didn’t change my life at all. I had very few side effects from the treatment, and I continued to work. It was a total of nine months with surgery in the middle of those months. I had chemo, surgery and radiation. I started the treatments from a place of strength. I think that, strengthwise, I’m a strong person. I was almost never sick. I had a body image of a healthy, strong person.
I was always athletic and strong. I never felt weak. And suddenly you change from the healthiest person in your mind to the sickest person, who is getting chemo that weakens you. And you get shots and blood and everything else that’s involved. I continued to work during that whole period.
The principal in my school said to me that she had never seen anything like this, someone going through such strong chemo who continues to function like this.
I would miss work for the day of treatment and the day after, and then I would work the next two weeks until the next treatment. Also during the six weeks of radiation, I would do it after work in the afternoon. The work kept me going. I would be very tired in the evening, but I continued to function more or less like normal. I worked a few less hours at work and managed to keep the house running more or less like normal. I did go to bed very early about 8 pm.
The only trauma was the hair loss. The kids took it very hard. They were very embarrassed for me to go around bald. All the kids, even the young ones, wanted me to wear some type of head covering. I had a wig.
I went to work with a wig, and whoever didn’t know about the cancer, didn’t realize. I was diagnosed over summer vacation, and I came back to work in September with a wig already. I didn’t hide it, but it took some people time to find out.
So, during the first bout of cancer I had a lot of energy, and I was lucky to have very few side effects.
S: Did you have nausea during your pregnancies? There seems to be a correlation between people who have nausea during pregnancy and nausea during chemo.
N: No I didn’t, and my doctor also said there is a correlation. I had very little nausea, if at all. As far as other side effects, I hated wearing the wig. It really itched me and was uncomfortable. The minute I was able to, I took it off and wore a head scarf.
S: Your trauma about the hair loss was because your kids took it hard, or was it something you yourself took hard?
N: It was also because of the kids and also because you don’t want anyone to know you are sick. I didn’t like the way I looked when I looked in the mirror, but I understood that it was something temporary, that it would grow back.
It was very hard for the kids. They didn’t want their friends to see me without a head covering. At home I didn’t wear a wig only a head scarf.
I only wore the wig to work and to special events. I think if it wasn’t for the kids asking me not to go without a head covering, I probably would have gone without anything.
S: When the cancer came back, how did you feel?
N: It was very hard. When it came back there were already metastases all over my bones. I had really bad back pain. I received radiation to my neck, but it didn’t help right away. It took time. In the beginning I had to wear a neck brace; initially, only for car rides; but then I had to wear it all the time. I was in terrible pain. For a few months I spent almost all day in bed, I couldn’t move. I could barely get up to go to the bathroom. It took a long time until I found the right pain medication regimen. So yes, things were different. I was in bed and everyone came to me.
S: How did you cope with such bad pain?
N: I remember I was in shock from the pain. I don’t know if I’m someone who doesn’t do the self-pity thing, but I do pity myself sometimes. The pain was so bad sometimes that I physically couldn’t do things, but I don’t remember having a feeling of being depressed.
Once again I summoned the energy. I had no choice. In my way of thinking, I had no choice. I have four children, and I can’t give up or take a time out from this world.
S: You did and do have a choice. You choose.
N: In my mindset, I have no choice. I have to cope, and I have for what to cope. I had to be strong because I have children and they need me, so I cope. My choice is to be here.
S: There is a lot of strength in knowing that you choose and that you are in the driver’s seat.
N: Even if it is a choice, it’s an automatic choice for me. I don’t stop to think, what am I going to do now?
S: That’s your mindset because your family and your kids are important to you.
N: I know that when some mothers are sick, thinking about the children and what will be with them can be depressing. For me, thinking about my children gives me a lot of strength because I want to be there for them. I want them to see that I can cope and that I can be there with them. Even when I was in bed all the time, the kids came to lay in bed next to me, and I read them books.
The kids are very important to me and they give me a lot of strength. They are what gives me the most strength. I love a lot of people in this world, friends and parents and family, but no one comes close to my kids in regards to their meaning in my life, in regards to my love for them, in regards to my commitment to them. The kids are just different. I choose to be there for them because I want what is best for them.
Because they give me so much strength, even when I was stuck lying in bed and not moving, I didn’t sink into a depression. I knew I had to fight. Maybe I am just a doing, practical type of person. I say to myself, this is what I have to do now, and these are my priorities and that’s what I do. I do think about things. I do understand the significance. I choose my priorities and what’s most important, what’s worth fighting for and what I will invest my energy in. What’s less important will wait.
That’s something that has guided me this whole period. The strength is finding the things that give you strength, to understand what they are, to stick with them. If for me what’s important is that my children have a normal childhood without major traumas (as much as I am able to control), if that’s what’s close to my heart, I will fight for it. If it means that in order for that to happen that I have to do something like asking for help even if asking for help is not easy for me, I will do it.
I remember in the beginning how hard it was for me to ask for help. You find yourself in a place of weakness and no one wants to feel weak, and pathetic and in need of help. It’s a lot easier to be the one giving help. Once upon a time I didn’t understand how hard it is to ask for and receive help. Healthy people generally don’t ask for help. I have been helped so much that I feel like I want to give back to people what I can. If I hear someone needs something that I can help with, I try to help.
Even though receiving help is hard, when the other choice is not receiving the help and having my children hurt by that I take the help because I need my children to have the most normal life that they can. What keeps me going is trying to figure out how to create the most normal surroundings for my children. I’ve done everything I can to make things easier on my children. My community is amazing. We’ve had unbelievable generous help from our friends and community, and I’m not sure that is something that can be found everywhere. People cooked for us for months, and even now if I need help taking the kids anywhere or to run errands they help me. Now that my husband is sick as well, when he doesn’t feel well we need more help as well because all of a sudden everything falls on me.
S: Have you thought about hiring someone to help you?
N: I have thought about it. We had someone for a while but it’s not easy bringing someone else into the home. I have been trying to refrain from that. If I see that I have no choice, that’s what I’ll do.
S: Do you find that it’s taking a physical toll on you doing it all by yourself?
N: I’m tired all the time but that’s not something new. Actually when I know that I have to rise to the challenge for a few days, I surprise myself and have found the strength. I’m tired but I manage and I feel good that I was able to manage. It also keeps the stability of the dynamics in the house. I choose to function. I’m trying to keep things as normal as possible. It doesn’t do good when people are coming in and out all the time. It hurts the household routine.
If I need to bring in help I will. The kids also understand that if I bring someone in to help that means that my husband and I are not functioning anymore and it stresses them out. They ask “What? You can’t do it by yourself?”
Tune in soon for Part IV of this IV part “World Mom to World Mom” series on living with metastatic breast cancer.
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.
This is an original post by World Moms Blog Africa & Middle East Regional Editor, Susie Newday in Israel.
Photo credit to the author.