Tanya Spink

Cancer ghosting, and the question of what I’m returning to

In the seconds before I was put under anaesthetic for my first cancer operation, I was mentally gathering loved ones around me. I was picturing the faces of everyone who had said they were thinking of me, praying for me, wishing me well, and taking some comfort from the idea that all that love and goodwill was coming into the operating theatre with me and holding me up.

Then, just before I went under, an entirely unwelcome and intrusive thought arrived: I haven’t heard from certain people. People I would have expected to hear from, without question. And suddenly there was this empty feeling that I had to wrestle with at precisely the moment I needed to feel held up and supported.

I would have preferred my brain to leave the friendship audit until I was at least out of the operating theatre, but apparently it had identified an urgent agenda item.

I still feel sad when I think about that moment. I was seconds away from going under and there was already enough to contend with, without the realisation that some of the people I assumed would be there, had been absent. I couldn’t resolve it, couldn’t do anything useful with it, and had only seconds to try to put it somewhere before the anaesthetic took over. H

“Cancer ghosting” is the term for people withdrawing or disappearing when someone has cancer. I understand the usefulness of giving it a name, although the phrase doesn’t quite capture the scale of the reassessment that follows. You find yourself reconsidering relationships, shared history and assumptions you didn’t even know you were making until you discovered they weren’t quite shared in the way that you had hoped

I had assumed the c-word was one of those events that superseded the ordinary calculations of life. Whatever the usual busyness, whatever the backlog of messages, whatever else was happening, surely hearing that someone had cancer would move them further up the list. Not to the exclusion of everything else, but enough to prompt a message, a call or some small acknowledgement that life had become a little more frightening. And if this wasn't one of those moments, I found myself wondering what would qualify.

Somewhere in my understanding of my own life, there was a group of people I considered my “in case of emergency” people. No one had signed anything, admittedly, but I thought the history of those relationships gave me reasonable grounds for the assumption. It has been difficult to reconcile that picture with what actually happened.

And yet, alongside that, there has been extraordinary kindness, which makes this difficult to write about without feeling I need to interrupt myself every few paragraphs to acknowledge how grateful I am. I am grateful. There have been so many beautiful messages, prayers and words of comfort, and people whose consistency helped me feel less alone throughout it all. Their care deserves to be described properly, without being used to tidy away the disappointment elsewhere.

My mum, my brother and my cousin have reminded me how important my family of origin is to me. My husband and children have carried far more than their fair share over the past six months, often while managing their own worries too.

I've also been struck by how many of the people who checked in consistently have known me since I was very young. There was something unexpectedly moving about hearing from people who remember me as little Tanya with glasses and piggytails. Uncles, aunties, old family friends and people from different chapters of my childhood reached out in ways that made me feel deeply cared for.

Then there was my best friend Jamie, who came from Barcelona, leaving his children in Spain and spending weeks away from his own family to be here with me. He picked me up every day for radiation with a hot chocolate in hand. He would bring his laptop over and work while I slept in my lounge room, every day for weeks. It was such an uncomplicated form of companionship: I could be asleep, he could be working, and I didn’t have to summon the energy to be good company or make his visit worthwhile. He was simply there while I rested.

A lovely woman I had met once at a seminar contacted me and ended up coming over several times with meals she had cooked for me and my family. I had met her once in my life. I still think about the generosity of that, and how someone with so little history with me recognised an opportunity to help and followed through.

Beautiful packages arrived from colleagues, childhood friends and friends. There were cards that are now Blu Tacked to the wall above my treadmill, where I can see them as I try to rebuild a bit of stamina. There is a blanket I’ve cuddled every night this winter, warm socks, MooGoo for radiation, beautiful creams, tea and face masks. People had thought about what might comfort me, what might make an unpleasant day a little easier, and sent those thoughts in forms I could hold, wear, drink or wrap around myself.

To be fair, I don't know what was happening in every life that fell silent. Some people may have been dealing with difficulties I knew nothing about. Others may genuinely not have known what to say. The older I get, the more conscious I become of how little visibility we often have into one another's private burdens. Understanding those possibilities, however, is not quite the same thing as escaping the hurt.

I have been so loved, and I have tangible reminders of it all around me. Which leaves me asking a slightly uncomfortable question: why, with all of that love, do the absences still hurt so much? I’ve wondered whether I’m being unfair by giving them any attention at all. But each relationship carries its own history and expectations; the kindness of one person can’t answer the question of what happened to another. I can cuddle that blanket, feel deeply grateful for the person who sent it, and still grieve a relationship I thought I could depend on.

The explanation I found hardest to hear was how busy people were. I believe them. I have children, weekend sports, a job, a household and, for the past six months, rather a lot of additional administration. I understand competing demands. What I’m struggling with is the expectation that busyness should settle the conversation, as though there is nothing further to consider about the choices we make within it.

Life is unlikely to become conveniently empty. If care is continually deferred until there is more time, when does it actually happen? I wasn’t expecting anyone to suspend their life for me, but I did think there would be room in it to remember that mine had become more frightening.

My treatment finished two months, and the past six months have caught up with me now. I’m tired. The positivity, drive and determination that carried me through the operations and treatment are harder to access, and I’m left with a body that needs recovery, a mind that has had very little time to absorb what happened, and the question of whether the cancer will come back...

During treatment, there was a structure to all of this. An appointment, an operation, a course of radiation, something to prepare for and get through. I could direct my energy towards the next thing. Now I’m supposed to get back to life, and I’m finding that a much more complicated proposition than it sounds.

Because what am I returning to?

I recently came across a rather extraordinary word: psychelochia. It isn't an established psychological term and, given that I learnt about it on TikTok, I should probably acknowledge the limitations of my source material. Nevertheless, I found the idea interesting.

It attempts to describe the emotional aftermath of profound trauma or disruption; the period after the immediate crisis has passed, when the consequences begin to make themselves felt. The point at which surviving something and recovering from it reveal themselves to be quite different processes. What I hadn't appreciated was how much of the emotional reckoning would arrive afterwards…

It also helps me understand why things that might once have been manageable now feel so painful. The disappointments, the silences, the questions about relationships. Perhaps my emotional skin is simply thinner at the moment. Perhaps I have less capacity to absorb what I might previously have explained away. Or perhaps I am finally allowing myself to examine things I had neither the time nor the emotional resources to confront while I was ill.

I don’t yet know.

I’m returning to the same responsibilities with considerably less energy, while trying to make sense of an experience that has changed how I understand my own life. And that is a peculiar kind of grief, because nobody has necessarily left your life. The people are still there. The shared memories are still there. What has changed is your understanding of what those relationships meant, and whether the affection you assumed existed would translate into care when it mattered.

I’m quieter now, more inclined to keep to myself and more deliberate about where my energy goes. My immediate family is getting more of my attention, and I’m less inclined to chase people or keep relationships moving through sheer administrative persistence. I can still be funny, interested and pleased to see someone, but I’m more reticent about offering up everything that’s going on inside me.

I’m not the same person I was before this, and I don’t yet know all the ways in which I’ve changed. I’m trying to restart my life with a different understanding of my time, my capacity and the people around me. That deserves a little space, rather than an expectation that the familiar version of me will reappear now that the appointments have thinned out.

I am also wary of the idea that suffering must produce some grand personal revelation to have been worthwhile. I don’t believe cancer happened to teach me anything. I would have been perfectly happy to acquire wisdom through less invasive means. But it has forced me to reconsider things I had previously taken for granted, including my own resilience, the reliability of relationships and the extraordinary amount of energy required to maintain the ordinary machinery of a life.

It feels like the aftermath of a deluge. While it was happening, I was occupied with getting through it; now I’m looking around, combing through what remains, and discovering that parts of the life I thought I had are less substantial than I believed. That takes some adjustment, especially when everyone understandably wants to celebrate that the treatment is over.

And perhaps that is the part of psychelochia that resonates most. The notion that the aftermath is not an inconvenient delay before life resumes, but an experience in its own right. That there may be things to grieve even when the outcome has been fortunate. That recovery can involve mourning parts of a life you have not physically lost.

I want to celebrate that I’ve come through it. I’m profoundly grateful to have done so. I also need to be able to say that I’m exhausted and grieving, without either being interpreted as a failure to appreciate my good fortune. I can be relieved that treatment has finished and frightened about what comes next. I can be stronger than I knew and considerably more fragile than I was. I suspect part of recovering is learning to live with those contradictions rather than trying to resolve them into a reassuring blog post.

If someone you care about is going through cancer, please reach out, even if you’re unsure what to say. “I’m thinking of you, no need to reply” is a perfectly good beginning. Ask when their next appointment is and remember to check in afterwards; offer a meal, a lift or some company, with enough detail that they can simply say yes or no. There’s already enough to coordinate without having to design and allocate the support as well.

If you’ve been absent, you can still make contact. An acknowledgement such as, “I’m sorry I haven’t been in touch. I realise I’ve left you without support I wish I’d offered,” gives the other person room to be honest. Try to resist following it immediately with an account of how busy you’ve been, or needing them to reassure you that it was fine. They may be glad to hear from you and hurt by your absence at the same time; allow them that complexity, and let rebuilding trust take a little longer than a single exchange.

And please keep checking in after treatment. In my case, this is when the exhaustion and the questions have caught up with me. If I’m quieter, slower to reply or less enthusiastic about a catch-up, leave room for that too. A gentle offer, without pressure or an expectation of the old me, is something I can receive much more easily right now.

And I think I’m beginning to understand that what I’m experiencing isn’t simply the difficulty of getting back to normal. It is the uncomfortable business of discovering that normal no longer means quite what it used to. I don’t know yet which parts of my old life I will recover, which relationships will find their way back to something familiar, or which assumptions I will have to leave behind.

For now, I am somewhere between the life I had and the life I am trying to resume. Still grateful. Still grieving. Still a little bewildered by the whole business. And perhaps not quite ready to return to anything just yet…

The night I was diagnosed, I made a decision

When I got home from the hospital the night of the diagnosis, I knew only two things: 1. I had breast cancer. 2. Treatment had come a long way in the past 5 years and so the odds of survival were in my favour.

Still, I did not know whether there were more than two tumours, whether they were in one breast or both, what stage I was, what grade the tumours were, if cancer had spread to my lymph nodes, or if it had metastasised (in fact I didn’t even know this word yet)…

It was a lot to take in. My husband Andy was away in America and so my brother took my kids to his  house so that I could be alone and process.

For a split second that night as I was getting ready for bed, I wondered if I was going to die from this and whether I would still be here at Christmas-time.

With that sickening thought came an immediate sense of guilt…if I died, I was going to ruin, or at least irrevocably change the trajectory of my kids’ lives. Their safe, cosy, fun-filled lives would be turned upside down and they would go through the most bone-deep grief that they could still feel decades later.

I knew this because this is what happened to me after I lost my dad at a young age to a terminal illness.

I think I allowed myself about 30 seconds to feel that extreme fear/pain/guilt/loss/grief…and then I made a decision.

I knew that I needed to look after my mind as deliberately as the doctors would look after my body. I couldn’t stop fear from appearing, and I certainly couldn’t guarantee what happened next, but I could try to stop it from becoming the only or the loudest voice in the room.

I couldn’t let that happen.

I wouldn’t let that happen.

At least if I could help it.

Cancer may eventually take me down, but it was going to come to know  that it had chosen the wrong one to play with.

The diagnosis would be a fact of my life, but it would not become its organising principle. Cancer could occupy my body for a time, but it was not going to colonise my identity, my family or the way my kids remembered this period of their lives.

I had my kids watching me, and children absorb far more from how we inhabit a crisis than from anything we formally tell them about resilience. I couldn’t prevent them from having a mum with cancer, but I could influence what that experience looked and felt like around them. I wanted them to see that even when you have very little control over what has happened, you still retain some authorship over how you respond to it. If it eventually didn't go my way, at least this would be my legacy.

Life/Lemons/Lemonade.

So, that first night, I decided I would do cancer my way.

This wasn’t about being relentlessly positive, denying fear or pretending that serious illness could be defeated by a good attitude. I have far too much respect for science, medicine and the indiscriminate nature of disease to believe that.

Nor do I believe that survival is a reward for those who “fight” the hardest. There were tears and fear and exhaustion all the way through this…and there are friends and family facing far more gruelling diagnoses and treatments than mine, who have summoned every resource available to them. None of us earns or fails to earn an outcome by how bravely we perform cancer. If only...

For me, it was about finding agency wherever I could. I would comply with the medicine, but I did not have to comply with the conventional script of how a cancer patient was supposed to look, behave or feel.

So, I approached the biopsies, hookwire procedures, needles, scans, surgeries and radiation as I would a dental appointment. I didn’t particularly want any of it, but anticipatory panic wasn’t going to make it disappear. I would turn up, close my eyes, regulate my nervous system, practice the Vedic meditation  I had been doing for 5 years, and let all the skilled medical people do what they had trained to do. I would surrender to that. 

Sometimes I took my daughter’s squishies (it’s a thing) with me. If squeezing a small, absurdly soft toy helped me  while somebody inserted multiple needles and/or a hook and then a wire into my breast, then my dignity could survive this compromise.

Usually, my cousin Sandy would come with me to the hospital. We would make sure we loaded up with treats, listen to some 90s R&B in the car and chat about everything else besides cancer and whatever procedure or treatment was about to happen. Then afterwards we’d go for a choc-chip muffin and hot chocolate and chat about everything else besides cancer and whatever procedure or treatment had just happened.

Strategic denial. Compartmentalisation. Queen of avoidance. Whatever. It helped me sleep at night, and Sandy understood exactly how I needed the game to be played.

Other times Andy would come with me. He carried the weight of it differently. More seriously (probably fair). While I was busy pretending I was heading to an inconvenient dental appointment, he retained a much firmer grasp on reality. Unfortunately for him, reality was not invited. So, he was therefore “gently” instructed to participate in the 90s R&B, hot chocolate and complete oblivion strategy until further notice.

I hired a limousine to take me to my first surgery and sang karaoke on the way to hospital and listened to the Rocky soundtrack (“It ain’t about how hard you can hit…it’s about how hard you can get hit and keep moving forward”). This was partly because my cousin in Melbourne had convinced me that hiring a limousine for surgery was a longstanding family tradition. It wasn't, but by the time I discovered that, I had already decided it was an excellent idea.

My children were mortified rather than impressed, which was disappointing but again, whatever. At least in my mind, it wasn’t surgery day. It was limo day. (Extra points for embarrassing my brother who is a nurse at that hospital.)

My friend Anthony drove me to my next surgery in a 1967 Cobra convertible. I was absolutely freezing on the freeway, but exhilarated enough that I arrived at hospital pumped and ready for what came next. The drive didn’t change the need for surgery, but it changed the emotional architecture of the day.

Curiosity helped enormously. I became fascinated (or at least tricked myself into pretending to be fascinated) by the medicine, the machinery and the extraordinary technology being used to treat me. Turning an experience into something I could examine made it feel less like something being done to me and more like something I was intrigued by.

Every time the radiation machine whizzed past my face I would wink and thank that big bastard of a machine for saving my life.

Breathwork also turned out to be unexpectedly practical. During radiation treatment for breast cancer, patients are asked to take and hold a deep breath because it moves the heart further away from the radiation field, helping protect it from unnecessary exposure.

After five years of Vedic meditation and breathwork, this felt like a challenge I was unusually well prepared for. Naturally, it also became a competition with myself. I officially held my breath for two minutes during my practice session, then four minutes on a radiation therapist's iPhone stopwatch. I asked if I'd set a record. "Probably," she murmured. Even during radiation, I found a way to become an overachiever (they were even less enthusiastic about my proposal for a leaderboard).

I also understood that clothes, music and theatre could be forms of psychological armour. I wore t-shirts with images of people whose qualities I wanted to summon. Dennis Rodman for his grit, ridiculousness and refusal to waste energy wishing he had a different role on the court and just getting on with the job in front of him (look at me with my sport references! Who saw this coming?! 🏀) . Prince for being unconventional and entirely unwilling to make himself smaller for the comfort of others 🎼🎸. Sade simply because it was a cool t-shirt.

Even the tattoos needed to line me up every day under te radiation machine will not remain as such. I’ll incorporate them into tattoos of my own choosing. It’s a small act, but an important one. Those marks are on my body, so I will decide what they come to mean. Or I’ll get them lasered off if I can’t commit to an image. Also entirely possible

Sometimes strength was breathwork and disciplined calm. Sometimes it was intellectual curiosity. Sometimes it was tears and fear and getting up the next morning to do school drop off and then go to work anyway. Sometimes it was a squishy borrowed from my daughter. Sometimes it was Dennis Rodman,  a deeply impractical luxury sportscar and two embarrassed kids wondering why their mum could never do anything normally.

But it’s exactly because they were watching.

I hope what they saw was that courage doesn’t require an absence of fear, nor does it require you to become somebody else. Sometimes it is the decision to bring even more of yourself to the experience.

All my theatre and carefully constructed oblivion helped me retain a sense of agency, but none of it could have treated the cancer. I was carried through this by scientific knowledge, medical skill, technology, care and the work of people who have spent their lives making survival possible.

I got to do cancer my way because that knowledge and care existed around me.

That is part of why I’m fundraising now. Passing some of that forward means that someone else receiving the same incomprehensible news might also have access to the medicine, support and possibility they need to find their own way through. 

...and to those still in the thick of it, you have all my love xoxox 

Dense Breasts, It Turns Out, Aren’t a Compliment

I was diagnosed with breast cancer in April this year.

When I was given the diagnosis, it took me a little while to understand that this was, in fact, what I was being told. I had rather cheerfully, and perhaps a little too full of myself, mistaken the issue of “dense breasts” as having impressively perky and firm breasts. So deluded. 🤦🏽‍♀️After two children, I had taken it as a compliment.

It was not a compliment.

Once the breast physician clarified the situation and my ego quietly left the room, a sentence arrived that divided my life into a before and an after.

Since then, I’ve had two surgeries, 15 rounds of radiation, and more scans, tests and appointments than I care to count. I’ve also had the strange experience of placing my body and my future into the hands of people I had never met before.

And those people held me.

I’ve had world-class medical care, a brilliant breast care nurse through the McGrath Foundation, and support from organisations such as Breast Cancer Care WA and the Solaris Cancer Care Centre. Research gave my doctors better treatments. Support services helped me find my way through them. The health system, brought to life by thousands of individual human beings, gave me a future.

I was lucky enough to ring the bell at the end of treatment earlier this month. Now, in October, I’m walking 58 kilometres for the 58 Australians diagnosed with breast cancer every day.

I’m still recovering, so 58 kilometres feels both slightly ambitious and exactly right. It’s a way of rebuilding my strength while raising money for the research, prevention programs and support services that become very real, very quickly, when cancer enters your life.

If you’d like to support me, I would be enormously grateful. Every donation, whatever the amount, becomes part of what carries the next person through. And that’s what this is all about for me… 

For me, this is about passing forward some of what carried me. I have been extraordinarily fortunate, in my prognosis, in the treatment available to me and in the people and services that gathered around me when I needed them. I’m deeply grateful to be here, recovering, rebuilding and able to keep going. Now I want to help make sure the next person is carried too.