Professor Carol-Ann Benn tackles the tough subject of death and how looking at soul colours and always looking up helps her.
Spoiler alert! I read the last chapter of the book before I read the book; I only like happy endings. That means I read happy-ever-after and watch movies that are either fluffy or candyfloss mayhem. So, when Tia suggested a movie that I would enjoy (she has similar interests to me), I was all for it. The movie was Last Christmas; a play on that Wham song Last Christmas I gave you my heart.
Now here is the spoiler: the movie is about a troubled young girl and she meets this hot guy, who keeps on rocking up whenever she messes up and says, “Look up.” Cut to the chase, she has had a heart transplant and just when she decides she is getting it together and wants to kiss him, it turns out he was the donor. OMG! He is dead. I don’t do dead and that sounds weird because I treat cancer but the cancer I chose to treat in all the surgical oncology fields is breast cancer.
Well I cried and sobbed for hours. I was cross with Tia as this movie had opened up all the doors and windows, showing me the many people I knew who were no longer alive. This is the chapter I’ve been avoiding writing because how do I discuss the frightening concept of not being around in this dimension.
The fragility of life
Between the pandemic and managing patients with breast cancer, I’m well aware of the fragility of life. I get that we can do everything right: exercise; eat well; not drink or smoke; maintain a healthy BMI and still get scary potentially fatal illnesses.
From medical science to innovations in health, our amazing immune systems to the shear grit, spit and duct tape of our body, mind and soul, we can survive all odds and then bam! Death.
What a word, not an attractive word like passed on; no longer with us; or entered the realm of the dearly departed. But, how can we euphemise something so final? Whether we are like Oups and say, “When your Strepie is getrek.” I think that is a bad Afrikaans interpretation for line in the sand; or as Charl says, “Gone to the great country club in the sky.” Sometimes we meet those people who say things like kicked the bucket or breathed his last.
But all of us aren’t trivialising this final event but rather battling in our own way to verbalise this frighteningly final world event.
So, what do we know about death? Well, you no longer have to deal with issues from family to taxes. Basically, no more problems, pain or concerns for you to deal with. So, what is the problem then? Well death is so selfish. The hole it leaves is for those left behind (family, friends, parents and children). This hole is a black hole, a sucking vortex that can never be filled. No matter how you try to fill it, you can’t. It doesn’t plug, it doesn’t fill. You’re going to have to accept the wound and scar, the great sucking black hole and vortex in your life and know that the pain may or may not get less. Like an injury, you can learn to manage but like any injury, you’ll still feel the pain at times.
Sue knows she is going to die
I had such a cool flight back from Portugal from an oncology meeting looking at genomics of cancer and the fact that today almost 60% of breast cancer patients with Stage 4 (metastatic breast cancer) are alive and well five years later. The cool part was sitting next to Sue. Context here, we waited on the bus for so long while this lady walked up all these stairs with a cane. Why was it taking so long? Why are we all so impatient?
And then she sat next to me. I was me: a visiting Prof and she was the most amazing person I’ve ever meet. Sue has terminal breast cancer and taught me so much, including her insight that has helped me write this. Guess what? She knows she is going to die. She even told her husband that they must go book her burial plot.
She then proceeded to educate on all the discussions she had with her family. “Do you want me to die at home?” Of course, he said yes. What sensitive husband faced with a dying wife wouldn’t. Well she said, “Think about it.” “Are you selling the house the day after I die? If not, do you want to sleep in the same bed the following night that I died in? And say you meet another lass; do you want to sleep with her in our bed? Are you planning on buying another bed?”
She discussed, with her kids, whether they wanted her in the family home, nursing her when she was terminal. Initially her family said “Yes, absolutely”; they loved her and wanted to nurse her. She, however, said to them, “Really you want me sick and dying in a house that you (not me) have to walk into and live in. You want to sleep in the house the next night? How are the kids going to feel about nursing me while I’m out of it in the house and still coming to visit you there when I’m gone (another euphemism for dead). Those are your memories not mine.”
After a few weeks they said they actually would prefer if she went to a hospice near the end. Only cancer patients get a choice. Most of us don’t. Do you really think you can choose that moment? Who do you think you are? God.
How expected is expected?
I thought I would write on expected death and unexpected death but even knowing you’ve a terminal illness, how expected is expected?
A renowned cancer specialist who developed a cancer wrote, “I would rather have cancer and be prepared about my death, so I can prepare and spend time with my loved ones.” There was a media outroar about this (I don’t know what you think of this comment).
Should we not be living each day like it may be our last? This doesn’t mean irresponsible partying but realising that you can have all the stuff in the world and it isn’t going with you.
Can we prepare? Well, you see from my plane conversation, yes, we can to an extent. Particularly if we understand and live like each day could be our last.
I experienced this to an extent around the start of COVID. I was in the bush and had chatted to Charl regarding how I would work or not, and well just decided to continue as per usual, helping all the peeps that crossed my path with breast cancer. Surely, they were more scared than me? And I was scared. I changed my will, left all my debt to Tia (my middle child) to manage (she is like Hermione, responsible like her dad). I told her it doesn’t matter how irritating her brothers are, she still needs to look after them. What pressure, neh?
Don’t avoid the monster in the room
So, Sue asked those questions that really resonated. She initiated the “This is okay as I’m not around to sort out the mess of feelings and logistics.” Don’t avoid the monster in the room. If you’re dead, you’re DED. So, if you have the privilege of understanding that this is a possible line in your sand, or even knowing you don’t know, ask these questions and discuss them.
Have you discussed?
- Where do you want to die? That is if you have the choice.
- What do you want to happen with all your stuff? And boy some of us have stuff! Some we want sorted through and others we may not want sorted through.
- Do you have a will, a living will or a take-me-to-this-place-for-a-send-off-option?
- Who is responsible for things? Pets, peeps, etc.
- Hospice care (hpca.co.za)
- Palliative care (hpca.co.za)
- How do you want your send-off? Earth, wind or fire and I’m not talking about a hot curry experience.
The sudden bang
When the unexpected happens and it does all too often. Have you made provision for managing the mess? This may be finances and wills. Have you written a letter to your family and friends? A “Hi team”, as Charl would say, “Sitting in the great country club in the sky. Remember to hang up your towels, the towel fairy isn’t here. Mom needs at least four mannies to run her life.”
Dealing with grief
My advice here is flawed as is my inability to deal. I don’t attend funerals; try to live in Disney; send playlists to show I care; and cry like my heart can’t break anymore in the inside and not outside; plant living things to look at as reminders and work so hard that I don’t have nor make time to mourn.
However, I do in my own way, and what I can tell you is that I ‘look up’ every day and see the stars in the sky, the angels around the beauty, and this is the only way I can see the souls of those not around. I take solace in birds and trees, nature and the clouds, photos of silly moments and imagine them containing the spirits of those I know.
I do know that there is strength in belief systems and when you and your family have spiritual or religious beliefs, these help both with explanations to children, especially in finding some turmoiled inner peace.
I learnt about soul colours from an amazing lady, Rene (honoured to call a friend). Look at soul colours. What is your colour? I think this is why rainbows are so amazing and maybe they are those soul colours.
All I know is whether it’s writing Chronicles of a Reluctant Widower, reading, praying, music, work or social, you are not alone in your grief. From virtual hugs to real hugs, it’s truly one day at a time. Look up.
For more info on palliative care and bereavement support please visit The Hospice Palliative Care Association (HPCA)
MEET THE EXPERT – Prof Carol-Ann Benn
Prof Carol-Ann Benn heads up internationally accredited, multi-disciplinary breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established The Breast Health Foundation.
Header image by Adocbe Stock