Suzanne (left) and Rosy
Ever heard that saying “the second time’s a charm”? Well, I am a bit conflicted about that when it concerns taking care of someone with a terminal illness. Almost nine years ago now, my mother died of cancer. Now my best friend is dying and I am once again the main ‘person’.
Suzanne has been my friend for over 25 years and is just about the only person that knows everything there is to know about me. All my secrets, all my sad and happy moments.
She has an especially aggressive form of breast cancer, without chance of remission. It has spread to her lungs, liver and back. All we can do is to have her on constant chemotherapy until her body gives out. Once again, I find myself in the primary decision maker position.
So, what is easier this second time around and what is not? I guess one thing I have now is the knowledge I built while taking care of my mother – the endless research about symptoms, medications, alternative therapies and miracle cures. There’s the small things like knowing that cold hands and feet will help limit permanent numbness, and cooling the head will help avoiding hair-loss. I can’t even say how many tidbits of trivia I know that I never wanted to know.
Also, this time around, we are better organized. While my friend’s only family is her mom, she has great friends and we have organized ourselves around a whatsapp group and dropbox folder. It’s how we keep track of who accompanies her to chemo every second week and who goes shopping, and cleans her house. It is also how we decide who goes with her to each destination on her bucket list.
Each of us on her caregiving team has things we’re good at and things we’re not. There’s someone to cook a Christmas meal for her and her mom; someone to help organize paperwork and finances; and, of course, there are things you can’t throw in a group. Things that are more personal.
Those fall to me. I try to hold Suzanne’s hopes and her fears. And I am the one who will need to make medical decisions once it comes to that. Another thing I know this second time around is that making those decisions won’t by any easier. Nor will it be easier to carry out Suzanne’s last wishes and all that is associated with them.
One thing that is very different than it was with my mother’s illness is that, this time, we have time to make some memories. So that is what we try to do. We handle the treatments with humor, bickering like an old married couple at chemo, making everyone in there laugh. We use what we call ‘the cancer card’ to get better seats at the cinema and try to enjoy that we get special treatment when traveling. And we ignore the ‘why’ that gets us VIP status.
I know the emotional burden that accompanies the experience of dying, both for the patient and for me. And I know it won’t be easier. Although I may know better how I react to grief, and know that I should talk about it more and earlier, that does not take away the feelings of sadness, fear, and despair.
I know that no one should have to go through this. Not once, and definitely not twice.
Technology entrepreneur and game producer. Rosy concentrates on working in social and environmental change and philanthropic projects. She uses her ‘techspertise’ to produce content she is passionate about, focusing on impact messaging in entertainment and gaming. She regularly blogs and writes screenplays. She is an investor and mentors young entrepreneurs. More info on: www.lokhorst.ch
