All of us who have been affected by cancer at some point have been both presently surprised and disappointed at times by people in our lives. Being a pediatric oncologist before I was a stage 4 cancer patient gave me the advantage of knowing the different reactions that I would encounter. It also gave me the confidence to know how to explain my health situation, which in turn helped my friends know how to react.
My Experience- a unique and lucky one
I was fortunate; I had a big group made of family, friends, and co-workers that filled my life with special moments during my cancer treatment. The care that I got from my anointed “Team Jess” far exceeded anything that I could have imagined. To this day if I relapse and eventually die of this disease, I have a happiness and contentment in my life that in part came from the privilege of experiencing such support and the validation that I chose amazing and supportive friends to be part of my life. Part of this luck was also having a large friend group at this time in my life, which meant people could take “breaks” which are needed for caregivers. In my case, I had more friends than family who acted in the caregiver role which meant less complexity and obligation than related caregivers. Both friends and family are important and capable in this role but they are different. I had co-workers and friends take me into their homes for my short stays in-between cycles. Friends came to the hospital with a fun project, a meal, or a long conversation. (I had some really amazing talks with my mentors while I was hospitalized that I wish I could remember better) Plus, I had a group of friends decorate a Christmas tree for me with lucky cats and pictures that they put for display at a theatre in downtown Houston. My situation was pretty unique and I was very well aware of it.
This is not to say that I did not have people in my life who were not as well suited for being caregivers or spending time with me as a “cancer” patient. Some acquaintances surprised me with their frequency and ease of their visits to the point where today they have became part of my inner circle; whereas others who I considered friends and were oncologists’ themselves never visited. One may expect that this group would be at more ease with a cancer patient. But when you have cancer, it is those friends who have so much in common with you who may find it too easy to see their own mortality, a fear some people are not immune too. I too had that event where I was not invited, a wedding of a close friend in my inner circle. I was told the bride did not want a sad reminder on her happy day. In general it also got harder as time went on. I was really very sick for a very long time, a year and half, which is taxing on anyone. I had 7 cycles of inpatient chemotherapy and then two large surgeries. I was on a lot of medication throughout my illness but when I had 75% of my liver removed was when things got even worse. I was not processing medicine normally, experienced a prolonged period of multiple complications, was close to death, and was not there mentally. Understandably, this was a lot for my young and mostly hospital naïve friends to deal with. A big part of my happiness was being understanding and recognizing that there would be varied reactions which was okay.
None of us is perfect at adjusting our expectations of people and empathizing, but for me my experience as a pediatric oncologist made me aware from the beginning that there would be a range of responses. I strived not to have expectations which in return increased my happiness. All of us are unique in how we show love, process our fears, deal with uncomfortable moments, and in what we expect in return for our connections. Furthermore, knowing the other people in our lives can be a tool for understanding and going through this difficult journey is an opportunity to learn more about our friends and family. I ask us to adjust our expectations and be open to different reactions for no other reason except that I think it increases our own happiness.
One husband may find that he is showing love by going to each doctor’s visit, questioning and researching treatment. Another husband shows his love by letting the doctors do their job without what he may perceive as interfering and making sure he’s at work everyday to support the family. Sometimes we use our way of showing love as the standard at which we judge the response of others. I am guilty of this too. It helps me to try to remember that maybe my loved one just shows love differently.
Processing Fear and being uncomfortable
A friend may fear saying the wrong thing so they stay silent. Fear of “catching” cancer is even a possibility, as not all fear is consistent with reality. A person may be fearful of a hospital based on an experience, but just as easily it can be based on lack of experience. Furthermore, we are all different emotional beings so that while some of us may be comfortable to allowing a feeling of overwhelming sadness, others may need to keep their emotions more restricted.
Return for our connection
Whereas, one running buddy may be able to easily transition into a role as a friend, another running budding may base their time allocation of their time according to who can participate in their shared passion. We cannot adjust other people’s expectations but only our own.
Using Our Knowledge of our Friends and Family
We can use our knowledge of friends and family to our advantage to get a total package of support. In general I try my best to remember that one person can never meet all my needs in any sort of relationship. The advantage of having several friendships is that different friends can fulfill different needs, and therefore I tried to accept the different roles that my friends took upon themselves. I think we all also naturally tailor our conversations to the listener. We also have friends that we connect more with on an emotional basis. I found a subset of those friends are okay with all kinds of emotions. For those friends I could share my fears and cry. Whereas my friends who were emotional but eternal optimists were perfect for being my cheerleader. Those were the friends that I could ask to hold on to dreams for me when I was at my weakest. We also all have friends that are uncomfortable with emotion. They may show love through concrete actions and less talk. Those friends organized my visitors, my meal deliveries, and help me with the “business” of cancer such as keeping up with bills and how to make a will.
Acceptance of different reactions
Part of the happiness is being “okay” with all these different reactions. I accepted each of my friends and did my best to appreciate the unique gift that I got from them. I often hear people express that they don’t know what is the “right” thing to say. Of course we have all had a conversation that start “I can’t believe he said that”! My best advice to friends is that there is no right or wrong thing to say, just talk. My advice to my fellow cancer warriors is to be okay that sometimes people will say things that are “wrong” or not what we wanted to hear that may make us feel sad or angry. Remembering that sometimes things don’t come out right or that they may be showing love in a way which we do not understand, can be helpful. At least the friend is making an effort to be in our life during this really difficult journey.
A note about the caregivers
We also should try to remember that the caregivers are having their own experience. The stress of seeing their loved one ill and taking on new responsibilities is struggle that we may not fully comprehend. Many of us who have had cancer may think at some point that I will never again complain about minutia in my life. During treatment priorities are defined by life and death. Part of my struggle as a survivor and having my life back has been letting myself have normal day worries. Sometimes I feel disappointed in myself for getting upset about such little normal things, but then I remember that such worries are a part of living a healthy life. This is because whatever is going on in our own life is always going to take a top priority and that is okay. At times during our illness, caregivers may empathize with our worries, but they will not experience them the same way. At the same time, they never get a break from all those other complex stresses of life. They need breaks and special treatment too. I know I could have never gotten through my illness without them. I had a friend that is a designer make me an ornament to give as a gift to many caregivers, a 3D star ornament with a lucky cat in the middle. ( http://www.melissaborrell.com/) On it, it said “Thank you for my life” and I meant it and still do.
In the future, I will post on caregivers expectations of their loved ones who are fighting cancer.
Sending you love and Strength,