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.