When My Parent Was Diagnosed With Terminal Cancer: Here's What Happened
I've been hosting the Soul Loom Podcast for a while now, and something interesting has happened in the last few months. I had a Death Doula on the show, and the conversation went places people clearly needed to go. Then I had a guest who wrote the Bottom Drawer Book, a guide for leaving all your instructions and information so your family doesn't have to guess what you want after you're gone, and that conversation landed just as hard. What I'm noticing is that there are a lot of people out there, probably like you, who are realizing we need to talk about how to manage the end of life so much better than we currently do. We need to know what it actually looks like, not the version we've been sold by television and hospital brochures.
The phone call came on a Thursday at four o'clock, mum asking where I was, I was driving out of the car park at work two hours away, and she was telling me the doctor had called her in, needed her to come now, but I wasn't there and now wasn't possible. I knew what that meant, a doctor doesn't call you urgently after routine blood tests unless the routine numbers have done something alarming. I called my son, asked him to take her and to dial me into the consultation.
That was November 2020. My mother will transition by the end of February 2021, weeks before her 83rd birthday.
If you're reading this because one of your parents or a close loved one, just got that call, if you're the daughter who holds everything together when everything is falling apart, then this is probably what's about to happen. Not the polished version. The actual version.
The Tests and the Waiting
It starts with a routine doctor's visit, something normal, a prescription refill and while she's there the doctor says let's just get some routine blood work done, but when the results come back a few days later, something in those routine numbers has triggered something the doctor can't ignore, so she calls my mother in urgently, and suddenly what was routine is no longer routine.
The imaging comes next, a CT scan to investigate what the blood work was showing, now mum has had no symptoms up to this point that would indicate she may be unwell, so she takes herself off to the imaging place, has the scan done. On her way back home she called into my place and mentioned that she must have gotten off the bed awkwardly as her leg is hurting.
Within days the pain is worse, sharp enough that moving is becoming difficult. The scan results come back and they show shadows on her bladder, liver, and stomach. The doctor calls to come straight up. She'll wait at the surgery until we get there, and she wants mum to see a specialist the next day. Friday, December 18th, I take her to the specialist, and he needs to do exploratory surgery, but it's so close to Christmas that even with private health insurance, the surgery list won't have space until the first week of January. So we went home and we waited, and during that waiting time mum is fine from the outside, still looks capable, but she's moving slowly now and as the pain in her leg is getting worse, and she's still here, still present, still your mother and not yet a patient.
Christmas Day is approaching and I’m having everyone over to my place, and I already just know that with the speed of all these medical decisions, this is not good. She doesn’t want to come over, she is beginning to feel unwell and her leg is not good at all but I know this could be our last Christmas, just a few hours, have lunch, do presents with the kids and we’ll take you home. She went home after, but the pain was getting worse, so I asked her to stay with me until we got the specialist's results, and that's why she was at my place on my birthday, January 6th, when the phone call came.
The Diagnosis
The specialist calls in the morning with the results from the exploratory surgery, and he tells me my mother has stage four bladder cancer, that it's already metastasising, that given her age and her physical condition he thinks the treatment will be worse than the cancer and that we should focus on managing her pain and keeping her comfortable, and there's no timeline, no indication of what this will look like or how long it will take. I ask him if he'll explain this to my mother if I put her on the phone, and he says no, you can tell her, and then he hangs up.
Yes you did read that correctly!
So I sit down on my birthday and tell my mother what the specialist just told me, what she has, what the stage is, what the uncertainty about treatment means, and I don't say she's dying because he didn't use that word, so I don't use it either, and then the diagnosis becomes the thing we're living with, and everything that comes next happens very fast and also in slow motion at the same time.
She is still staying with me and the issue with her leg is not improving, and she is now not feeling well either, she is spending 24 hours a day sitting on my lounge, trying to sleep on my lounge, I assist her to the bathroom, but she is now getting to a stage where I can not manually handle her, I’m concerned that if I hurt myself, then we’re in a lot of trouble. We have a talk and call an ambulance, and she goes to hospital during COVID, during lockdowns, during the time when family can't visit freely and nothing makes sense and everything is falling apart at once.
The Hospital and After
In emergency they do bloods and they come back showing elevated calcium. Elevated calcium in someone with metastatic cancer is the cancer leeching calcium from the bones into the bloodstream, which makes the bones brittle. I don't get a call about any of this. I call them because I haven't heard anything, and they tell me she's been transferred to another hospital because of the elevated calcium. When I finally get to speak to her in hospital, she tells me about the broken pubic ramus bone, the one she broke getting off the CT scan table six weeks ago, the thing nobody thought to x-ray, the reason she's been in agony all this time. It's the first I'm hearing of it.
Now that she has been in the hospital for a while, with lots of doctors and nurses talking at her, that I then had to try to decipher every time I visited, she is beginning to come to terms with what is actually happening, and she is asking questions about her will, I can't answer because I've never seen it. I call the lawyer and it's disconnected, so I do some googling only to find he was disbarred for tax evasion. At this point you can only laugh or else you'd cry. So I called my lawyers, explained the situation and they were there, at the hospital getting it all sorted as well as setting up power of attorney and finalizing end-of-life directives of which I have all the authority yay! She's aware enough to understand what she's signing, aware enough to know that making decisions about death before you're ready is a strange and necessary thing.
A cardiologist has decided he wants to treat her condition, even though the initial specialist said there was no point. Before he can start treatment, the bone needs to heal, so she's sent to rehabilitation. On the day she's supposed to be transferred, she reaches for the nurse buzzer and feels a sharp pain in her shoulder blade. Another break. But she can still walk with a walker, so they transfer her anyway. After four days they tell me gently that she's not a candidate for rehabilitation anymore, that the break makes it unsafe for her to do the activities, and honestly she simply doesn't want to anyway. Within a few days the rehab manager suggests I should start looking at nursing homes. I can have her accepted under respite care, the Government provides 28 days and then she will just be transitioned to a permanent resident, the rehab can keep her for 2 weeks, so I get cracking on that.
I find an amazing facility, not easy believe me, and she moves into the nursing home around the first of February with a plan for twenty-eight days of respite, then permanent residency. The first week she's still quite good, eating and drinking and aware, and you tell the staff to keep her comfortable, don't send her back to hospital. And then she starts to decline, not slowly but fast, faster than anyone predicted. She stops eating, stops drinking, goes on comfort measures only, and some days she's still bright, still there, and some days she's somewhere else entirely.
When her brother finally arrives after the border closures lift, something shifts in her, and she goes from non-responsive to really present for a couple of days, aware and herself in a way that lets your boys say goodbye to her the way they needed to, awake and able to speak to them. But after they leave she slides back into semi-consciousness, and there isn't much more anyone can do except wait.
My oldest son is catching a plane home. On the day of his flight we're at the nursing home, visiting like we've been visiting, and as we're walking out the door, for me to drive to the airport, a young staff member taps me on the shoulder. She thinks my mum has just passed away, she says quietly, like she's sorry to interrupt. And just like that, it's over.
What This Season Actually Means
You're not just managing a dying parent, you're in a season of massive change where everything you thought was solid is shifting underneath you. The roles you've always played, the capable one, the organizer, the one who knows what to do, they're being tested in ways you can't prepare for.
And my body kept speaking to me and I knew better but I didn't listen, so it had to try again with more force. Most of 2021 I spent managing her estate, packing up her house, sorting through everything, and then in April 2022, more than a year after burying her, I had the first of two gall bladder attacks, the second I called an ambulance in case it was my heart, the pain is similar and in the same region, the hospital diagnosed it, and by May 2022 my gallbladder was removed. The gallbladder is solar plexus territory, it's about your ability to digest life, to process what's happening, to hold your power without gripping it so hard you choke. I was holding everything, every decision and every feeling and every consequence, and my solar plexus was clenched so tight there was no room for anything to move, so my body formed stones. I couldn't swallow what was happening, I couldn't digest the weight of it.
Watch for your body's signals during this season. You might notice your digestion shutting down, your stomach clenched so tight food won't move through. You might feel your chest getting tight, your heart doing things it doesn't normally do. You might not be able to swallow, literally or metaphorically. You might notice anxiety you've never felt before, or numbness so complete you can't feel anything at all. You might want to ask for help but can't find the words. These aren't signs you're failing. They're signs your body is keeping score of the weight you're carrying, and it's time to listen.
So here's what I know: you're going to get through this. You're capable enough, strong enough, built for surviving what feels unsurvivable. But being capable doesn't mean you're okay, and knowing you can manage everything doesn't mean you should have to manage it alone. That's what this season actually is, managing the unmanageable, surviving what looks unsurvivable, and discovering you can do both at once. Your body will keep score. You'll make decisions that will haunt you and save you in equal measure. And then one day it will be over, and you'll be someone different, and you'll still be here.