Being a survivor is a gift and an obligation to make someone else’s journey a little easier.
A survivor’s story.
My name is Kozeta Domni. My story begins with a routine mammogram, whilst I was in the US. On October 25, 2011 (2 days before my birthday), I was scheduled to have my annual mammogram.
The exam was done in less than 15 minutes. The technician asked me to have a sit in the waiting room and wait for the doctor to come with the results. I busied myself with a magazine and a few minutes later, the technician came, and said “you need to have another mammogram, because the doctor wants to have more films taken from the right breast”.
I never thought there was going to be the second…., and third time breast exam. Nobody in my family ever had breast cancer, or any other type of cancer. My heart was pounding. “Is there something wrong?” I asked her. “We do not know yet”, she said to me, “let´s not start to worry about things that we do not know”. After the third exam, I did the same thing. I went to the waiting room, hoping that it was my last mammogram. I was waiting for the doctor. This time, I was shaking. What is going to be next, I wondered. I hope I do not need any more exams. I hope nothing is serious.
The doctor came in to talk to me. There were abnormal cells, in shape and size, showing in my right breast. A stereotactic needle biopsy was scheduled for the next morning. I really do not know how I felt, except I was in total shock. After a good cry, I pulled myself together, and drove back home. I was scared for my health, and I did not want my family to know, I was facing a serious health problem. I went home, and said to my son “I am having a breast biopsy, but I do not think it is going to be serious problem”. Then I called my sister and told her the same thing.
The biopsy was taken next morning. A few days later I had a call from the doctor. The biopsy did show cancer cells, in the milk duct. I could not believe I had cancer. At 48 years old, I was diagnosed with Early Stage Breast Cancer on the right breast. The same week, I got scheduled to have lumpectomy.
From the day the mammography was done, I experienced the scariest two weeks of my life. I could not eat, sleep or concentrate on anything. I said to myself, “why is this happening to me, I am taking good care of myself: eating healthy; exercising; not drinking; not smoking…”
The surgery went well. Another biopsy was taken. The doctor told me to come back and see him a week after surgery.
I felt exhausted. So many things happened in such a short period of time. I wanted to be away from things that happened the last two weeks. A week vacation worked well for me.
By having surgery, I thought I was finished with doctors. I was wrong. I went to see the surgeon. He checked my breast, and said to me, “everything looks fine. Let’s talk about pathology. You are diagnosed with Early Stage Breast Cancer, Invasive Ductal Carcinoma, Estrogen – Receptor Positive. The advances in technology make it possible for the patient to be cured. You have to say to yourself, I have cancer, I will fight it, and I will win. You have to see an oncologist. I felt scared, and insecure. I said to myself, I will do everything I have to, no matter how hard it will be.
Next morning, I saw an oncologist who recommended 7 weeks radiation, 5 days a week, followed by 5 years hormone therapy (tamoxifen). At least it was not chemotherapy, I felt relieved.
The radiation was not a terribly hard procedure. I experienced fatigue and changing color on my breast. Sometimes I was sleeping long hours, sometimes I could not fall asleep all night long.
When I was having the treatment, I met other women, in the same condition as me, or even worse. Some of them lost their hair. I asked the secretary, “Can I bring hats for the patients who are losing their hair?” “Sure”, she said, “and specially at this time of the year“( it was December - January ). I knitted hats and left them in a basket in the waiting area. I was trying to do something for them, and feel better myself. We talked together, sharing experiences and feelings. We helped each other get through this journey. We even celebrated when some of us finished the treatment.
My family, team of doctors, my friend and my dog has been a great support for me.
I have learned that it is not a selfish thing to take care of myself. I have learned, that being a survivor is a gift and obligation to make someone else’s journey a little easier by giving them support, and love.
“You have to say to yourself, I have cancer, I will fight it, and I will win. You have to see an oncologist. I felt scared, and insecure. I said to myself, I will do everything I have to, no matter how hard it will be.”
— Kozeta Domni
A co-survivor’s story.
Cancer is life changing whether you are the patient or the person caring for the patient.
Everyone close to the patient is also a survivor.
First thoughts reactions on partner's diagnosis? The way it happens, as described in my previous statement, was a huge blow, unexpected by the surgeon and of course, by us. When it happens, the first thought is Death at the corner. But that feeling does not last. Very quickly, we switch to fight and positive mode.
What helped you to understand your partner's feelings? I think it is not about understanding. I just felt the same way. Mixed feelings of fear, optimism, anxiety, and objectivity on the situation.
What information did you find most useful? All of it. We felt we needed to know everything. Present, future, statistics, expectations, treatments, side effects. In order to stand, we needed to know as much as possible.
Did your partner's medical team provide you with information that would be vital to your role as a carer? Yes. They were completely open. But again, it seems that it is not that often they see the spouse at each appointment. I never missed one appointment or a chemo session. I was with Marian all the time. The fact we were asking questions, seeking for information, made it natural. It did not happen by saying you should do this or that. The way to help just came naturally.
Where did you find useful information or what resources were valuable? Most of the information we got was from our doctors. But on top of that, we had the chance to have close friends who are oncologists. We had access to second opinions from doctors in other Cancer Centre’s in France, and in the States.
Where did you turn for support? Was there any organization that offered help/support? We could have turned to support groups in the Cancer Centre in Nancy. Marian was part of Team Inspire, a support group on the Internet for Ovarian Cancer Patients. She was reading the posts more than interacting with this group. I, we, were helped and supported by friends and family.
What support could have helped you and or your family? I really do not know… we are a strong family, surrounded by very close friends. No matter what we needed, they were always available. Not intrusive. Just there, in case.
Did you go to appointments with your partner? As I said, I never missed one. Never missed a chemo. We went down that road together, all the way to the end.
Did you feel included? Excluded? I never felt excluded. We made all the decisions together.
What was most difficult for you? It is very frustrating not to be able to really help when the side effects struck. I was there, next to her, available for anything, but to me, it did not feel enough. Witnessing how she felt in times of very aggressive chemo, and not being able to do something, left me with frustration and anger. But she always told me in these moments, that being there, next to her was already a lot to her, to help her keep fighting.
Did you receive any "random acts of kindness" that you would like to acknowledge? In 2006 when she could not go work at ISL because of the chemo, our friend Philippe, working in Luxembourg at that time, offered to come every morning at 7am and bring the kids to school. We learned a couple months later that he was no longer working in Luxembourg at that time… we did not know. Another friend changed her work schedule, and instead of taking the train to go to work in Luxembourg, drove, so she would have her car to bring Joanna & Keenan home after school. A third friend, for the past 2 ½ years, called me every day. To check how Marian was, how I was. Talk for a minute when he was out of the surgery room. Just being there, available. No intrusive at all. He still calls me every day.
Another friend came to visit her at the Cancer Centre on the 27th of December. She knew Marian was drinking Coke when her tummy was bothering her…but she was not sure what kind of Coke. So she came with a can of each Coke available…Regular, Diet, Zero…etc. Little things mean a lot.
The team at the Cancer Centre, all of them, from the receptionist to the nurses, the doctors, all of them. I told them after Marian passed that they all had something you do not learn at school. Humanity, attention, respect. Everything was made to make her feel comfortable, physically and psychologically. They were incredibly available and kind to both of us.