I am a horrific driver. It is like “Driving-miss-Daisy” meets Checkers-Sixty-60-scooter-on-tik when I’m behind a wheel. Add to that a good dose of anxiety and a spectacular lack of direction and you get a horror show with a license, which really should not be allowed on our pot-holed roads. Oh, and additionally, something happens to me the minute I get in that driver’s seat – my posture suddenly melts into the hunchback of Notre Dame, but let’s not pull that thread further today as self-drive cars are not quite here yet.
So, apart from the difficulty I have driving, I continuously get lost. I am often amazed that I can have Waze on my phone, as well as the car’s GPS, and can still not get to my destination on my first attempt. This is particularly amusing when I’ve been to the destination in the past, so when I was to meet a real life navigator this week, I thought it was solid proof that opposites attract and that God’s humour is rather dry.
The navigator I met is not your average Joe that directs a ship or aircraft or even the poor oke sitting next to the driver in an Amazing race challenge. Nope, the one I was lucky enough to meet is a real life survivor (not the kind that survives my driving) but she survived cancer and now has an amazing career/purpose/calling/ vocation/super-hero-status as a cancer navigator. Until recently I did not know this concept existed, but my gut knew that we so need this. When it was explained to me what these people did, I just felt such immense relief that they exist in this incredibly broken world, they just rise up and fix what they can.
Anyhoo, you’d swear I’m fiddling with the volume button instead of steering the wheel with the way I am digressing. The person I met and want to talk about a bit is Nicole (Landman) Fuller. It’s worthwhile Googling her, but in a nutshell, she is a bit of an over-achiever! Not only was she a Springbok athlete, but she survived cancer and now she steps in as a warrior to walk this immensely treacherous journey of navigating breast cancer with other people. I cannot imagine how scary this journey must be in a world that is geared to make money rather than heal, and a system which provides opportunities for corrupt and/or ineffectual departments to line pockets instead of save lives. Add to that the myriad of conflicting information out there which adds to the confusion, the opinion of everyone that has ever tried an essential oil, and family members insisting on a say about your decisions regarding treatment. Then we are not even talking about the financial implications and the affect it all has on your emotional wellbeing and family. This is a road no one should walk alone. Ever. Is this accreditation of becoming a cancer navigator not just the best thing since Albany sliced their white bread and made it low GI?
Nicole and other heroes like her have personally had to figure out how to walk this path. For Nicole it was overwhelming enough despite good medical aid, fantastic care (under the brilliant mind of Prof Carol-Ann Ben) and with a supportive husband and family. Now imagine you do this without all the above with your only hope an overwhelmed oncology state department? Thank God for these navigators. Somehow, they find the courage to get back on the racetrack they would rather forget and run it again, this time with and for someone else. Nicole is a marathon athlete and I get the sense that, like in those dire last moments of Comrades, she is the slim athlete pushing the tired, worn souls over the finish line. I am so grateful that these navigators go back into the war and pull out the other soldiers, by supporting them when the overburdened healthcare workers are too busy. By gently educating the patients in a world which is totally foreign to them, and then giving them tools to take their power back, they make the fight more bearable.
I’ve just come out the room of a cancer patient, Maggie. Her skin is the colour of milk chocolate. She is my age. She entered the work force at the same time South Africa entered her period of democracy. Maggie is highly intelligent and that ensured bursaries which allowed her a tertiary education. She was promptly employed by one of SA’s top banks to prove that they have embraced the new beginning of our land. She tells me for years she felt the weight of her people’s expectation to show everyone their worth in the corporate world. At work many shunned her and doubted her abilities. At home she was expected to give loans and help create opportunities. As our country started failing and systems were forced into the workplace to make things “fairer” it only became harder for her. Now she had to prove that she was there based on her merit, not her skin colour. It was worse than before. She worked hard, rose up and was consumed by work. She never had children before her divorce, and now, as an extra bonus had to be boarded due to her diagnosis (breast cancer which has metastasized to a variety of organs). She shows me the basket of snacks sent to her by the boss at the corporate giant. Firstly, she cannot eat anything which Netflorist arranged so wonderfully thoughtlessly. Secondly, the note says, “Get well soon. From the team.” It would have been better to do nothing, as the gift was simply a reminder that they do not care, have no idea what her prognosis is and that she has probably already been replaced. They are not walking this journey with her. That is abundantly clear. There are a handful of people that show up for Maggie – her sisters, her friends, a few guys from church. No one gives advice or makes suggestions. There is no need for grandiose expressions now. On good days Maggie manages a few laps around the lodge, and if it is sunny enough, she has tea outside. We are adamant that her last weeks or months will be gentle and that she will know she is loved, 24/7.
Maggie’s time from diagnosis, through treatments and many hospitalisations, has been harrowing. I wish there were a navigator for her. In an ideal world, everyone should have a person that walks the entire journey with them. We were created for community. Someone wise (clearly only wise, not impressive, otherwise I would have remembered who they were) told me that at every stage of your life you have to have a mentor and a protégé. Nicole has figured out this journey and earned her stripes. She has learned the vocabulary, and also has an ability to now understand what doctors say. (No offense to these great minds, but you guys often lose the overwhelmed patient and all they hear is what they want to hear). I wish there were this soft landing for everyone with a disease – someone to tell you and your friends to stop Googling, help you find the right people to see, make the hard decisions with the right information, put plans in place for the best possible outcome and the worst possible outcome. Just the fact that there is a navigator who is willing to talk about the ugly stuff, and who does not shy away from your frightening reality, is already such a blessing.
There are things we can do to help make our loved ones’ cancer journeys easier. Do not give advice. Do not say it will be okay. Rather, help by making sure their kids’ lives go on by picking them up from school and dropping them off at sport. Fill the freezer. Do the shopping. Send messages without wanting feedback. Sit with them when they get treatment. Go with them to doctors’ appointments so you can help remember and ask questions. Talk about the elephant in the room. Or don’t. Kate Bowler, who survived stage four bowel cancer, said the kindest thing anyone did for her was to go to her house while she was ill and simply do her family’s laundry. Other friends filled the freezer. Her grumpy neighbour that never spoke to her mowed her lawn in summer and shoveled the snow on her driveway in winter. Do what it is you do. If you are a hugger, go hug. If you are an organizer, put a schedule together. If you are a prayer warrior, go pray. If you are funny, crack a joke. Show up. Be authentic.
I think if we were all to follow in the footsteps of these brave cancer navigators and help in the areas where we can, it would help everyone, not just the patient. But I need to stop writing now and go pick up my friend and drive her to chemo. I need to show her there are other things apart from cancer that are scary.