There are some stories in your life that you love telling, and this is definitely going to be one of those for me.
Last year, around April, I got a call from a distraught daughter (let’s call her Cathy). She recently lost her beloved dad to cancer and was still reeling from his death during the revolting lockdown and all the emotional damage it entailed. Her mother had now been diagnosed with cancer too and they were all starting this journey exhausted, depleted and scared. The hospitals and their staff were still limping along trying to catch their breath after being annihilated by the pandemic, and patients and loved ones unfortunately suffered as a result.
Daphne, Cathy’s mom, was rushed to hospital after repeated falls, eventually breaking her back. Along with that, she also had unbearable abdominal pain and she was soon diagnosed with terminal ovarian cancer. The prognosis was dire, and her pain soon became unmanageable. Daphne’s son rushed back to SA from where he was living in Europe to say goodbye to his mom. As is often the case, the doctors were all looking at their own specialties and not speaking to each other. Many opinions and diagnoses were passed around but no one seemed to want to communicate to the family. There was no concrete way forward. Surgeons and oncologists and gynecologists and endocrinologists and radiologists were all called in and after three weeks in ICU between two hospitals, the only reality the family faced was that Daphne’s pain was intolerable. Surgery was a long shot and she was unlikely to survive the time on the table. They made a call: get her out of hospital and let her go with dignity. Finally, for the first time in weeks all the doctors and specialists agreed: Daphne was dying, and at a rapid speed too.
Anyway, back to the phone call I got from Cathy. She said her mom desperately wanted to come out of the hospital and asked if we could send someone to assess her. We asked a brilliant end-of-life sister to go see her and she agreed with the hospital team, that Daphne had less than a week to live. Her gut feel was around five days. We moved quickly. Cathy and her brother came to see me at the lodge. I cannot recall this, but Cathy said that I embraced her as she stepped out of the car. She thinks this was me being kind, but I reckon I probably needed a hug and she looked like a willing victim. We walked around, they chose a room with the best view of the pool and garden, as well as the patio where there is always something happening. We got the end-of-life team on board and arrangements were made for Daphne’s transfer.
I will never forget the moment the paramedics lifted her out of the ambulance on her arrival. It was the first time she had felt sunlight on her face in weeks. A trip to our lodge is a “loaded” experience for end-of-life patients. They know this is their last stop. It can be a huge relief to be somewhere safe, and often a marvelous escape from a cold, uncaring institution, but it is also juxtaposed with the knowledge that this is the last time they will go anywhere.. This is where it will end for them. Their family is acutely aware of this fact too and so, when people arrive for this journey, we are mindful to immediately just shower them with kindness. There are no polite conversations about the weather and shaking of hands. We become family immediately. We are going to walk the most beautiful, sacred journey together, and we all respect this deeply personal space we are allowed to enter.
Sorry, I am getting philosophical. (It is a winter’s night after all, and I am sipping a cabernet as I’m typing). So, Daphne arrives and her son and daughter are at once delighted that she is out of hospital, but even more delighted when they discover the home-made rusks we keep next to the coffee machine. I immediately suspected that they never ate while their mom was in hospital. In fact, such was the son’s hunger that I eventually moved the rusks fearing his constitution would pack up.
Daphne laid down the law very quickly. She only had a few days left and she knew what she wanted::
Firstly; she wanted to see her little dog Sally as much as possible. Secondly, she wanted pain control, which somehow in hospital, they never got right. Cathy said that she will be traumatised for the rest of her life by the absolute agony Daphne endured while in hospital. So, we knew this was our number one priority. Luckily with palliative care, they are spot-on with pain control and I am proud to say, Daphne has never been in pain since arriving here. Thirdly, she wanted privacy. She did not have a lot of time, so she was not going to spend it seeing anybody except our staff, some medical professionals and her two children. Absolutely no one else was to put a foot into her room. She had her pride. She was not looking her best and did not need people gawking at her. She said goodbye to everyone important already at her birthday shortly before falling ill, and no one needed the extra drama.
And so, with those three rules firmly put in place as the blueprint, we started weaving her, supposedly extremely limited and finite, life around it. Our first surprise came when she survived the first week, then the second, …then the first month. We were too scared to say it to her, but conversations had to take place as her children had put their lives on hold. Experts were called in and our dear Daphne just kept beating the odds. Eventually her son went home and her gorgeous daughter started taking deeper breaths, laughing more often, sitting a bit more comfortably, taking up a bit more space, pausing to reflect with us about her mom’s funny little idiosyncrasies. Daphne’s appetite was quite remarkable for someone so sick, but chef Dylan somehow just got her likes and dislikes perfectly figured out. Her favourite meal is a grilled lamb chop and the only meal we ever repeat on a weekly basis is on Fridays, when Dylan serves a freshly baked croissant with cream cheese and smoked salmon as this pleases Daphne. (Just tonight I saw all the other guests getting lovely crispy pork chops, except our Daphne, she got lamb!).
In the first fortnight I called in my ministers. We agreed that Daphne wanted to have holy communion one more time. It was casual and deeply personal. Her son wept. Daphne was touched, but somehow her soul was so wonderfully balanced across these two worlds of living and dying, that emotions were not important to her in the moment. Her faith managed to embrace it all, and I think secretly she almost endured it for the rest of us. A ritual that we needed more than her? Perhaps a memory for her son, to look back upon one day when he needs to cross that divide
And so, days became weeks and weeks became months. The son came to visit from Europe again. And then again. Eventually Cathy said that people kept on tip-toeing around her as her mom did not seem to be dying… and so, gently and carefully, Daphne was nudged to see some of her family. Now, more than a year after her arrival, Daphne is the only personI know who makes a hospital bed look like a throne from which she rules From that spot, so carefully selected for her many months ago, she had us all marching to her demands for the first visitors (apart from the dog and the ones to whom she gave birth). We had her hair and her nails done. This was such a huge success that it is now a weekly appointment for the hair and a bi-weekly date for the nails. A select few family members were granted an audience to see Daphne, where she always made sure that we knew what she would like to serve. Later, friends were entertained too. Every time we welcomed these people and ushered them in to her room, it was an emotional avalanche. They kind of thought they would never see her again, and at the same time thought it would be the last time… and yet, there she was looking fabulous and not like she was going anywhere. Now every week, queen Daphne entertains.
As her friends and family were invited back in to her life, her room started blossoming around her. It was like a seed buried deep under the snow which slowly came back to life. During the first few months it was beautiful and comfortable, but she left no mark in the room. It was just another room at the lodge. Slowly she started asking for her things: a book here, a vase there. Tiny step by tiny step she started owning the space. If you walk in now, it is as if there was an explosion of Daphne in the room! There are pictures on the wall of her husband and family, there are shelves for her treasures, flowers, diffusers, even a little table. Like my teenagers would say, “=That gal is owning her space!”.
In the beginning of December, when Daphne had outlived her expected life span by 8 months already, she started planning Christmas. Her grandkids were going to come from Europe and she wanted a Christmas with them and other friends and family. She planned the menu from starters to dessert with Dylan. A physio was called in to make sure she’ll be strong enough to stay in a wheelchair throughout lunch. (This may not sound impressive, but remember, Daphne had been in bed for nine months by now. She is not paralysed, but due to the illness’ progression she is in bed 24/7). On Christmas day, Daphne rose like a phoenix from the ashes. She looked gorgeous and sat at the head of the table with her loved ones. It was a Christmas I do not think any of them will forget as they celebrated a true miracle on the day on which we celebrate the miracle of miracles..
That was the last time Daphne left her bed, but she has been on our property, not leaving it even once for 375 days. Her mind is razor sharp. She summons me often with the flick of her index finger’s red nail to come and report to her on the minor details of our lives. She watches the lodge like a hawk. She knows who does what when. She has an opinion on everything. She does not suffer fools. She loved the coronation of King Charles III. She tells Cathy when she dislikes an outfit. She knows I am sad long before anyone else does. She has become an anchor to us all, A presence we love, a privilege that we are not quite sure why we were blessed to look after and a force of nature beyond contemplation.
The day after Mother’s Day we celebrated her one year anniversary with us. There was singing and cake, and after all the festivities I sat with Daphne, and now, my very good friend Cathy. Out of her own Daphne said to us: “You know, I was supposed to come here to die.” Cathy asked her, “Mom why do you think you didn’t.” She said, very pragmatically, “You know, I think I did not want to die. And you know? This is now my home.”
Later on, Cathy gave me a framed photo with a quote from Ram Dass “We are all just walking each other home”.
What an honour that we get to do this! I am loving the journey walking Daphne home. It has been much longer than any of us anticipated, but has been more beautiful than we could have imagined. What a journey! I somehow know that Cathy and I will keep walking together, long after Daphne has reached her destination. Our paths are so carefully, beautifully planned, and our fellow travelers so lovingly placed alongside us.