We need to talk about cancer

How hilarious (and also not remotely possible) that sounded to a Seventies teenager with little on her mind but whether the DJ would play Funkytown at the under-18 disco at the hotel near the beach. 

On the occasions that I thought about it, I also found it cause for a smile that the shortening of my name is Di which sounds, let’s not beat around the bush, like what happens to every single one of us when our time to be alive is over and we head into the place of the souls.

So, in some ways, these past 16 months should come as no real surprise to a Cancerian who people sometimes call out “Di!” to. Because, since February last year when my partner was diagnosed with aggressive prostate cancer, my life now includes the deaths of two people I loved very, very much and three different cancers, one of which is my own. 

And, as I have found since early April when a serious-faced doctor told me I have breast cancer and that my tumour was of a high grade, it’s actually quite the opposite of hilarious when you find yourself living in what writer Siri Hustvedt called “Cancerland”. 

Hustvedt was referring to the place she travelled to – not real of course, but as defining as a physical space – after her husband, the acclaimed author Paul Auster, was diagnosed with cancer in December 2022. 

Auster died this year, at the age of 77, in the same month that I was diagnosed, and it was his tender, anguished, mysterious The Book of Illusions that was the first book I finished as a “person with cancer”. 

As Hustvedt correctly wrote on Instagram a month after she had shared news of her husband’s cancer: “No one can be reduced to the name of their illness, whether it is autism, epilepsy, or cancer.” 

But, having lived through a time when one minute you are a person without cancer and the next you are informed that you are someone with cancer, I can say that something alters; that when you walk out of the doctor’s office into the world, which feels strangely hyperreal, you know that you are both separate from the many people passing by and joined to others who are also stumbling their way through Cancerland. 

To be honest, when I went for the biannual, population-wide screening (for women aged 50 to 70) that is done in the country where I live, I had no thoughts that it would show anything amiss. There is no breast cancer in my family that I have ever known of, I have never been a smoker, and I breastfed four children for a total of a decade which offered, I always believed, some protection against the disease. 

Mostly, though, I didn’t think lightning could strike twice, by which I mean, out of the blue in February last year (and thanks to an eagle-eyed radiologist in South Africa) my partner was discovered to have prostate cancer of the very aggressive kind and I found myself entering Cancerland the other way – via the onramp signposted “supportive and loving family members”. 

So, when the doctor called the day after my mammogram to say something had been seen and I was to go for another mammogram for further investigation but not to be too concerned because five out of 10 of these turn out to be nothing, I wasn’t worried. 

Aside from all the facts above, I literally spoke these words out aloud to myself: 

There’s no possible way Jeremy and I can both have cancer. There is no chance that our family will be visiting Cancerland again so soon. 

“Is this some kind of cosmic joke?” asked our daughter Hannah when we called her and her sister Emmylou in Brussels, where Hannah lives, to share the news that the biopsy done after the second mammogram had confirmed what those examining my x-rays had suspected: I very much had breast cancer. 

We all laughed. 

We couldn’t help it because, as a close friend later pointed out, my partner and I having the quintessential male and female cancers at the same time was cosmic in a way. 

In the more than 30 years we have been together, we have never married but here we are, joined together by the emperor of all maladies, as Siddhartha Mukherjee so compellingly called it in his exceptional, Pulitzer Prize-winning book. But while it might have been cosmic, it wasn’t a joke. 

Along with my three daughters, Jami, Hannah and Emmylou, I also cried in the days after being given my diagnosis, a lot of it because the tank that holds the stuff that helps us cope with life had been just about emptied out by the death of my mom less than four months previously, followed, two weeks later, by the sudden, unexpected death of a beloved childhood friend who had been a rock during my mom’s illness. I cried again when we told our son Zachary, who works as a field guide at returnAfrica in the Makuleke Concession and so knows a great deal more than most of us about life and death as it unfolds in nature and who said everything will be as it will be, Mom.

Since then, I have been operated on and treated with radiotherapy. I finished radiation the day before I marked my 60th birthday as a Cancerian – lying so still, arms over my head, in the LINAC machine, concentrating hard on doing my Deep Inspiration Breath Hold technique correctly (to protect my heart), imagining myself on the slopes of the snow-capped mountain depicted in a big image on the ceiling above me. 

At the end of July, I start an intensive chemotherapy regime which will last until the end of this year, and which scares me in a way that is novel to me. This is less because of the known (I will lose my hair; I will feel nauseous; I will want to sleep for the days after each infusion, and the list goes on) but because of the unknown (will I be one of the lucky ones who gets side-effects but not all of them or not too badly, or will I be someone who is hit hard and so face not feeling anywhere near normal for what seems like a very long time?). 

What I do know for sure is that when you are diagnosed with cancer, you are constantly undertaking acts of configuration and calculation in your head – at least I am. 

If I have this kind of cancer and this sort of treatment, will my five- and 10-year relative survival rates be what the research says they will be? What is the possibility of being an outlier, either good or bad? Could my reaction to chemotherapy be like that of the kind friends and friends-of-friends who are sharing their own experiences with me, so at least I am prepared to some degree? If I have breast cancer, what are the chances of me having another kind of cancer (marking the start of what is a lifelong haunting for all those who have had one cancer diagnosis)? 

I also find myself engaged in acts of comparison that invoke a feeling of deep gratefulness – thankful for the screening programme that meant that my breast cancer wasn’t discovered at an untreatable stage, thankful that it is the kind that is responsive to the hormone therapy that I will be on for the five years following chemotherapy. 

I realise my good fortune all over again when I read about the 10 million displaced internally in Sudan or another hospital bombing in Gaza, because how do you access cancer care when resources are nonexistent or medical teams barely have the capacity to save life after life, amputate limb after shattered limb or you cannot stay in one place for long? 

I am also acutely aware of how privileged I am to have access to the tests (including the MammaPrint genomic test that delivered the startling news that I have a high risk of the metastatic return of my breast cancer) and treatment that I need, with no worry about how to pay for them. This is because I now live in a country that has universal social health insurance. Daily, I give thanks for my Dutch grandparents, my mom and ancestors. 

But here’s the thing about all this configuring, calculating and, mostly, comparing: when it comes from people who are not living deep inside your specific Cancerland, it is sometimes hard to bear and hear, even when they mean well (and everyone does), even when it comes enrobed with love. 

I say this without judgement because before my diagnosis, before my partner got prostate cancer, before my mom died of lung cancer – a shocking four short months between her diagnosis and death – I don’t think I knew how to talk about cancer with those who had it. 

Still, over the past year and a half, I have come to know a few things which might be of use to someone, somewhere because we are living in a time when the rate of people getting cancer seems to be at a galloping pace. 

At least I know this anecdotally, because whenever I do share my diagnosis with someone, they tell me about the one, two, three or more people they know with the disease. 

Cancer, it seems, is commonplace now. 

But this is also when it can get hard. Oh, prostate cancer, more than a few people said when I told them of my partner’s diagnosis last year, taking care to emphasise his very high Gleason score as a way of signalling this is serious. That’s the good cancer to get. My uncle has pancreatic cancer and, well, you know that’s the worst one out there. 

Oh, it’s just early-stage cancer is another one I’ve heard, as if that means there will be no further bad news or punishing treatment to come; that early stage means easy treatment and the end of the story which, in my case, it is very definitely not. 

The truth is everyone knows someone who has a worse kind of cancer or has died from the disease, but those of us who are being treated for it don’t always need reminding of this because we know it. We have done the calculation, the comparison and the configuration ourselves. 

And even though we are grateful for so much, even while we continue to relish and embrace the other parts of our full, bright lives and find the joy in small and big things, and yes, channel positivity because, please believe us, we do know that it helps, living in Cancerland is hard. 

Being placed in some kind of disease hierarchy is a denial of what it feels like to have one of the world’s most feared illnesses because there is no “good cancer”, there is no stage that doesn’t cause moments of terror, there is no “only” or “just” here.

So, what does help? 

There is so much I could write about but, honestly, I am thankful for these few simple things. 

Don’t stay silent. A simple acknowledgement from your friends and family that you are facing a disease that is not nice – and exists as much physically as existentially – feels more supportive than you will know. I heard that you have cancer. I am so sorry. It can’t be easy dealing with it. Is there anything I can do? 

Also checking in regularly, in a way that doesn’t require an immediate response because there is a lot of bone-deep fatigue that comes with cancer treatment. I am just thinking of you and sending love. I hope the treatment is not too hard. 

WhatsApp (or any other messaging platform) really is your friend here. If you live close by, cook a meal like the wonderful friend of my daughter’s did when I had surgery, the gesture of food being welcome at any hard time. 

Those I have spoken to say that during chemotherapy it helps to be held in love and care by your community who can help practically and emotionally, in consultation with partners and children. 

I am also preparing myself to ask for more help, to lean on people, to not always be the one taking care of others, to not always feel I have to be strong and positive, because even though I am lucky to generally live on that side of the road, some days I just want to tell you how angry I am, how I wish I could go back to January 2023 when I wasn’t going to be taking the onramp to Cancerland not once, not twice, but three times. 

In the end, like everything, it’s other humans we crave the most when we have cancer and I am coming to treasure those whose short missives of love or care pop up on my phone at unexpected times, sometimes from people you least imagined would have you on their mind.

One last thing. 

When your cells are discovered to have “become unhappily malignant in unique ways”, as Mukherjee puts it, and especially when those cells are aggressive but have not yet broken out in a way that already makes you sick, the living is strange. 

In the bleaker moments of comparison, contrast and mental congestion – the dark moments of the soul, when self-pity threatens to overwhelm, when feelings of abandonment and the unanswered why and why me questions swarm in your sleepless head – it is peculiar to feel not unwell, not ill and yet to know the opposite is true. 

You. Are. Not. Well. 

At this stage, when the science is at odds with how you feel, when you have to prepare yourself for a punishing medical struggle against an invading and hostile force that has not yet shown its true face, you have to laugh at the absurd cosmic joke; you have to feel that if tomorrow I feel no worse than today, well that’s as good as I can hope for. And presence – which I have long pursued – is marginally, necessarily more attainable. DM