One of my friend, Tanya ( a pseudonym), passed away last summer after three years fighting a cancer, leaving behind her three young children and a husband. I was very close to her during these three years, running to the emergency room multiple times, waiting with her endlessly in multiple waiting rooms, the "chemo suite", hospital rooms, etc.
I was there several times to hear the bad news shared with her with the doctors; I was there when she told me she was scared (she rarely said it though as she kept fighting the disease taking care of her family), when she worried that her youngest one might not remember her, when she could not bear the pain and "her body falling apart" (her words). ...
I gathered many insights during these three years but one thing I'd like to highlight in this post is the importance of "little things" and how these little things matter. I used to call Tanya everyday, usually on my way to work. I quickly realized, in particular during week, when she was alone at home, how it was important. She would pick up the phone quickly and I could hear in her voice that she was waiting for this. We often talk about her health, but also about the news, politics, anything... and this routine became something she could count on. It also became my routine, and for many months, I would pick up my phone on my way to work ready to call her. I recently realized I unconsciously changed my route...
These phone conversations, as well as conversations at her home, showed me the importance of finding the right balance between listening to her pains - physical and emotional, and engaging with her as the person she was - a person with a lot of interests, skills, someone I enjoyed talking with, but someone with whom I could also disagree at times. (Emily McDowell's interview by Jim echoed this point).
One day, her husband and mother-in-law told me, as we were discussing the fact that she was not eating anything, that she wanted only her father's soup. "Your father's soup?", I asked turning to her. "Yes, I want my father's soup. That's the only thing I could eat". Immediately I asked how to make it. "You won't know how to do it. It's a Vietnamese soup. Only him could do it". I told her I will figure out. I called her sister who was leaving abroad and asked her for the recipe. I went and looked for the ingredients. Tanya, when I was mentioning to her, that I would bring her the soup, explained that I could not find the ingredients. It was too complicated. Short story long, I end up making the soup and I went to her house a Sunday with a big pot of soup, anxious to see her reaction. She took off the lid, bent her head and smelt the soup. She looked up at me with a big smile, one of these smiles only her had, a smile that took up all her face, her eyes sparkling with joy, and she said: "It smells just like his soup. It makes me hungry!" I can't tell you how happy I felt at this moment and I still feel content when I remember her happiness. She ate that day and the day after. ...
The day of her birthday, at the hospital, one week before she died, I brought her a French pastry, her favorite. She smiled. She said she was not hungry but eventually nibbled it and said it was good.
I also realized how touch was important. During the last month at the hospital, we all took turn in massaging her with moisturizers. Yet, even before that I realized that simply holding her hand, caressing her forehead would soothe her.
Little things matter. These little things often involve senses: touch, smell, taste, etc.
All these things I learnt just by trusting my intuition. I sometime wish I could have asked someone for suggestions on how to make her more comfortable. Yet, I also think that there's no recipe and that this is only about listening and being there for the other - whatever that might mean: being silent, talking about what they don't want to talk, listening, arguing, laughing, talking about everything and nothing...
Other insights I gathered from Tanya's story:
- Even though doctors and nurses were always nice, they were also busy, and not always comfortable having difficult conversations. (Yet, this is something incredibly difficult and something that requires practice and also time. It seems that doctors and medical personals don't necessarily have the training, and little time). (Shoshana's post resonated with me).
- Information about Tanya's disease was not always available and clear. For some of us, it was important to understand better the situation, but I realized that for Tanya, it was not always the case. Yet, I still feel that she knew more than she seemed to show and that having the doctor articulating it for her would have helped. (This reminded me a point made by Dr Meier about the importance of telling patients news they don't want to hear, although they already know about them https://challenges.openideo.com/challenge/end-of-life/research/the-human-connection-of-palliative-care-ten-steps-for-what-to-say-and-do)
- Waiting rooms and the anxiety that rises. (I could relate with the Guardian article I posted about: https://challenges.openideo.com/challenge/end-of-life/research/you-know-when-it-starts-not-when-it-ends-the-ongoing-horror-of-cancer-survivorship)
- The chemo suite: how to describe it without shivering?
- Patients need to advocate for themselves but they usually don't have the energy, and their family does not necessarily know how to go about it either.
- How to talk to your children about death, about your death? Tanya has been struggling with this constantly. (I wish I had known about the council of dads / mums concept)
- For all of us around Tanya, figuring out what to do and not to do was not always easy and knowing where to find the information and support would have been great.