Hard to believe we are at the end of week three of consolidation round two.

After having family here and what felt like a bit of breathing room, two weeks with only the daily antibiotic visits to work around, we were lulled into a false sense of normal. Meals out. Sleeping better. Time at the studio with the new team that did not feel stolen or squeezed between hospital runs. It was not normal exactly but it was closer than we had been in a long time. And then the arsenic hit hard.

This cycle started differently to the last. No weekend breaks. Hospital in the Home coming to deliver the IV antibiotics meant the routine never fully stopped. The nursing visits arrived at varying times each day, working around a schedule that was never quite ours. And Thunder, our very special French bulldog, spent a lot of time on the wrong side of the door. He does not take kindly to being put outside when other humans are inside. The scratching and the licking of the glass continued. Some things do not change.

The days start early. 5:00am most mornings, while the house is quiet and Dazz is still sleeping. It is the only hour that is reliably mine. Notes from the day before, emails, business decisions, the things that cannot wait even when everything else feels like it should. By the time we are out the door and in the clinic, the laptop comes too. I have set up a makeshift office in the corner next to Dazz's treatment chair more times than I can count. The unpredictability of when the day will end means I work in whatever window is available. Some days that window is two hours. Some days it is seven. And then on Friday, it was a waiting room chair outside surgery. Same laptop. Different view.

Back into it

Up early and off to the hospital. Full doses of arsenic to start this round, which lasted until the end of week two when Darren’s body said no.

I remembered this happening before. The day we drove to Sydney for my hair appointment, he woke with the same headache, that same general feeling of not quite right. We went in to the clinic for the final day of the week and on Friday they stopped the arsenic. Fluids were given, Panadol, and once the headache began to settle we were sent home. An early mark. Dazz slept the rest of the day.

The weekend was quiet. Time to recover and the final two rounds of antibiotics to get through. The biopsy on the arm still needed to happen.

The arm

After weighing up the private versus public route for the biopsy, we went down the private path only to find a simple procedure would cost $1,200. After MRIs and ultrasounds, this arm was starting to get expensive. We made the decision to wait through the public system instead.

As it turned out, luckily enough, instead of the private booking we could have had on Wednesday, Dazz got onto the trauma list for Friday. So long as no one had a major incident, the biopsy to investigate the infection would be done.

The potassium problem

The balance of potassium has been one of the major ongoing challenges of this treatment, alongside the arm. Maintaining levels over 4.0 has proven consistently elusive. Eating potato, avocado and banana alongside fizzy potassium drinks and tablets keeps Darren hovering at around 3.8 to 3.9, which means one to two bags of potassium required each visit. On a good day we can get out of the hospital around 1:30 to 2:00pm.

On the Friday of the headache, the day the arsenic could not go ahead, potassium was a perfect 4.1. Of course it was.

Monday arrived and we were sure all would be okay. This time instead of a QTC averaging its usual 475 to 485, it swept up to 525, well above the acceptable margin. No arsenic treatment. Even then it was 11:00am before we were out the door after all the tests and results. The known unknown, as I have written about before. Every day its own variable.

A familiar face

There is another APML patient in the clinic now. She was admitted to hospital a few weeks after Dazz came home. No chemo, only 35 days in hospital, her round one running alongside his round two. The differences are there but the path is the same. Darren has spent time talking to her on the days I have been off doing other things and I have spoken to her once or twice myself. It is comforting for all of us in a way that is hard to explain. Someone who just gets it without needing an explanation. Someone to compare notes with. You do not realise how much you need that until it is sitting across the room from you.

While Dazz looks well

His hair has grown back thicker than ever. He looks normal. He looks well. People say so. And yet he feels anything but. Nights are restless, the treatment and the disrupted sleep feeding each other in a cycle that does not let up. The exhaustion is deep and it is constant. The looking well and the feeling well are two very different things and it is worth saying out loud.

Friday. Surgery day.

A later start, 10:00am. A luxury by our standards. I got a workout done on the home reformer. Poor Dazz was nil by mouth, so when we arrived at the hospital it was a solo coffee grabbed from the cafe.

Checked in and up to wait.

At 11:30 his name was called. We both got up and walked over. The nurse looked at us.

You will have to say your goodbyes.

Darren looked up.

That’s a bit ominous. Shouldn’t you say see you later?

Well I’d better just give you the code to the safe before I go then.

Still making the crowd laugh. Even when the crowd is a waiting room full of nervous people about to have surgery. The man cannot help himself. And honestly, long may that continue.

He came out bandaged and a little groggy. Now sporting dual blue shower sleeves, one for the PICC line, one for the biopsy. We wait for results and whatever treatment, if any, is needed to finally clear this up.

The waiting was long. My laptop was my distraction. I am so used to the hospital now it genuinely feels like a normal office. I spoke to a couple of clients, sorted a contract, and finalised the handouts for this morning’s workshop. All from a waiting room chair.

And so we come to the end of week three…

Honestly? I am exhausted and a little flat. The biopsy being done brings relief and the hope that the arm will finally get sorted once and for all. The studio sits in the back of my mind constantly, a pressure that does not switch off regardless of what else is happening. Running a business through this is its own particular kind of hard and I am not sure I have found the words for it yet.

One new thing. I have started drumming. One of the patients we met in the first round of consolidation is a facilitator with InRhythm Drumming, the same group who came to our Compass Pilates retreat back in 2022. It felt like a sign. So now, Monday nights, with a wingman in tow, thanks Stace, I sit in a circle of people and beat on a drum for an hour and a half. I laugh when we get it wrong. I focus on the beat. I escape everything for a little while. It is the best kind of deregulation.

But this morning I have a workshop to run at the studio with our Winter Warriors. Darren’s two are coming to visit today. And one of my friends is passing through overnight.

The little things. The connections. The people who show up. They matter more than I can say as we wade through this.

Still here. Still going.

One day at a time. 🩶

When you are in the trenches, survival is sometimes the only thing on the agenda. Running a business, keeping the home together, managing visits, food, medications, appointments, and somewhere in all of that, trying to find a moment to breathe. Some days there is not a lot of room left for creativity or writing or anything that is not absolutely essential.

Some days I wake and my brain hurts. As if there are too many things to think about and not enough capacity to hold them all. I lose words. My brain cannot find the right ones for ordinary things, chair, bench, the name of something I use every day. Luckily I am not teaching full time right now or left and right could get very interesting. If you have ever been in a Pilates class and watched an instructor call the wrong side, you will know exactly what I mean.

But I am here now. And there is a lot to tell.

The weeks that followed

Where I left you in June, we had just survived the first week of consolidation as an outpatient at the Cancer Day Clinic.

The weeks that followed were more of the same. 5:00am starts, the bowl of pills on the bench. Dazz rattles when he walks. Food packed for what could be an eight hour day. Week two brought half doses of arsenic. Week three much the same. Week four, arsenic every day until Thursday when another long day of chasing electrolytes meant treatment was missed again.

The day clinic sees around 80 patients come through it most days. Some are there for half an hour. Some for a couple of hours every few weeks. Some one day every month. We are there every day. Sometimes six hours. Sometimes nine. The hardest part in all of this is the unknown. Would we be out by 1:30pm or would we still be sitting there at 5:00pm when the lights were being switched off and most of the nursing staff had already gone home. Those days are the hardest. Thankfully we get weekends off.

Darren kept telling me I did not need to stay every day. But I can guarantee the day I leave, whether it is for the accountant, a brow wax and lash tint, yes, self care is in there in small ways, or I run into someone at the hospital cafe and am out longer than anticipated, that will be the day something happens and he needs me. And besides, when the haematologist drops by or the nursing staff update information, you want a second set of ears in the room. I am grateful I have a laptop. The team in there even find me a table so I can set up my portable office in the corner next to Dazz’s treatment chair.

I tried to find a middle ground. Meetings at the picnic tables outside the hospital. Calls to potential clients from the car park. On the day I managed to get to Terrigal for lunch with a friend, no sooner had the food arrived than I got the message Darren would be finishing early. I shovelled it down and drove back. Nothing outside those clinic walls felt relaxing enough to be worth the distance from them.

Bone Marrow Test Day

Monday 6 July was bone marrow test day.

We had been out of the daily hospital visits for a week. Only a Monday check in. It was quite surreal. We were heading in for the usual PICC line dressing change, bloods, and the bone marrow test. This would be the test that would tell us how Darren’s body was responding to the arduous treatment schedule.

And then our friend the green whistle. The one thing that brings the most comedy into this whole experience. Bone marrow testing is invasive. They drill into the back of the hip and a local anaesthetic only takes the edge off. The green whistle sends Darren somewhere else entirely, somewhere he does not remember the very funny conversations he has. We have had the same doctor, Aaron, each time. Familiar faces make unbearable things slightly more bearable. The Green Whistle Diaries could become a blog, a stage show, or at the very least great dinner party entertainment. Watch this space.

While in the treatment room Aaron noticed Darren’s hand was looking a little more puffy and a little redder than usual. He drew a line around it and contacted orthopaedics. We had the blood tests and were then sent up to the fracture clinic to see the head specialist who had knowledge of the case.

They were concerned. While the surgical cut had finally closed and progress had been made, it looked like the infection had raised its ugly head. The fear of another potential surgery and another setback was real.

The decision was made. IV antibiotics, and a hospital stay rather than Hospital in the Home was imminent. A bone marrow test had become a potential hospital admission, hopefully for one night only.

No beds at the Inn. With winter and a full hospital they did not know when or how they could admit us or even which ward it would be. We were sent home to pack an overnight bag and return in the hope a bed would be available. We were suddenly staring down the one thing we had managed to avoid so far. Time as an inpatient.

We arrived back at the hospital with nothing positive to report. They could not source a bed from the fracture clinic and so at 4:30pm, after arriving at 10:00am that morning, we were sent to Emergency. If you have ever had the misfortune of heading to ED you know what it is like. Full of sick people. Not somewhere we wanted Dazz to be for any period of time.

After a two hour wait in the corridor, in masks, as far from other people as we could manage, he was finally taken through. ED was so full I was sent out to wait while they sat Darren in a chair out the back to start the IV antibiotics.

Protein bars for dinner. By 9:00pm, with no bed on a ward in sight, I was forced to leave and head home, not knowing if Darren would be sleeping in a chair or if a bed would be found.

At 11:00pm a text came through. I have a bed. In ED, behind a curtain, but hopefully I can get some sleep. Getting to a ward will be tomorrow.

The next morning, not long after I arrived back at ED, they found Darren a room in the short stay surgical ward at 10:30am. The intent was clear. Get an MRI and a biopsy, identify what the infection was and where, bone, tendon, or other, and get him home. It was ordered. No time set.

Back to the routine of inpatient life. Beeping machines. Nursing staff on this ward who knew nothing about leukaemia or why he was there. We were both anxious. Family was coming, something we had been very much looking forward to, and hospital this week had not been in the plan.

By Thursday, four days in and still no MRI in sight, I finally lost it.

I did not ask. I demanded to see a doctor. I told them we needed answers, we needed an MRI, and we needed a plan to get home. If it could not be done in house we would do it ourselves, but we needed a gate pass and permission to leave the hospital with the promise we would return. The temptation to leave and not come back was enormous.

The day before I had already called a radiology clinic at Gosford myself. Five hundred and fifty dollars and we could get the MRI done and be one step closer to the door. They unhooked Darren from the drip and we made a dash to make the appointment.

Friday morning the biopsy was finally performed. The MRI results were enough to confirm the bones were clear and no further surgery was required. The final dose of antibiotics was given late afternoon, Hospital in the Home lined up for daily visits, the PICC line locked off, and at 5:00pm we finally left the hospital and went home.

Firsts

There have been a lot of firsts in these seven weeks.

First time leaving Darren alone in the clinic. Murphy’s Law, his QTC was 502 that day. A flurry of messages as he tried to hold his own space and manage the news without me there. He was pretty emotional when he came out. It was a lot for him to carry alone for the first time.

First birthday that was not a Festival of Robyn. Dazz made the biggest effort. Pyjamas ordered online, a song written just for me, and lunch at a Greek restaurant on the waterfront. All the while feeling guilty that the Festival of Robyn had become the Festival of Leukaemia.

He had told them it was my birthday when he booked. They gave us a table right in the centre, in full sun. We had to move. While on ATRA, Darren’s skin cannot be in direct sunlight. I honestly did not mind. I was just glad he was alive to be there at all. He wore a small hat so he was not so conscious of looking like a cancer patient with no hair. When we got home he was worn out. We got inside, held each other, and cried. Nothing felt normal anymore.

Now that we have started venturing out and seeing people, the looking normal is a complicated thing. It is winter so the PICC line is covered by a jumper, the dry scaly legs underneath pants, and with the swelling down Darren can most days wear normal shoes rather than the Uggs or slides that were uniform for so long. People say you look well. And yet he feels anything but. His body is constantly fighting the symptoms and side effects of drugs that are doing the extraordinary work of killing off the genetic mutation that caused all of this. The lack of energy after an outing to the beach or a lunch out, a constant reminder that his body will not yet allow him to participate in what was a normal life. That is a hard and fast mental game.

My monthly hair appointment in Sydney. In all of this, it is the one thing I have kept for me. I now drive rather than taking the train, limiting the people I am around and the germs I might bring home.

I suggested Darren come and catch up with his kids while I was at the salon. Lucas and Elisa had been so good about making the trip up to visit us, one of the real highlights of the heavy days for Darren, an afternoon on the PlayStation or a game of Kelly pool making things feel almost normal, that it felt like a chance to return the favour, to go to them for once.

Dazz woke that morning with a headache and not feeling great. He insisted on coming anyway. Snoozed the whole way there while I drove and quietly questioned my own decision. He dropped me off and we were not in sync the way we usually are.

I walked into the hairdresser and had tears before I had even sat down.

The first question, before hello, before anything.

Is Darren okay?

He is, I said. I’m not.

The appointment was a good distraction. And afterwards, a late birthday celebration. High Cheese at the Hyatt with a fellow Gemini. Tea and cheese, the most perfect combination, exactly the kind of something nice that had been carefully planned. Except the day had already been stressful, Darren unwell from treatment and me worrying the whole way there, and it is hard to shake that and simply enjoy something when nothing feels normal anymore. The ceremony itself was beautiful. But relaxing it was not. That is what treatment does to even the best laid plans.

Every first carries something in it. Relief. Strangeness. A little grief for how easy these things used to be.

Family

Thankfully we got out of hospital on the Friday right before family arrived. Saturday was spent resetting. Getting the house feeling like we actually lived in it rather than the halfway house it becomes when Dazz is in hospital.

Suddenly it felt important to have order. When everything else is so out of our control, the house becomes the one thing we can control. Or try to. The office, which tends to be the dumping ground for paperwork, bills, business things, all of our separate piles of life, was the area that finally broke us. We ended up arguing over the chaos. After everything. The office. Ridiculous. And also probably not about the office at all.

Sunday through Wednesday was a visit from Maegen, James, and Elijah. The first time they had been up since the hospital admission. It was good to not be doing hospital runs while they were here. With Hospital in the Home coming to administer the antibiotics we did not even need to go to Gosford on the Monday, giving us the full day with them.

At two, Elijah is so fun to be around. Full of words and mimicking, and hearing Grammy and Grandazz each morning gave us something to smile about. That and being able to talk openly about Maegen’s pregnancy. Yes, we have another grandchild on the way. Due in January. There is even a chance this one might arrive on Grandazz’s birthday.

We did the maze and the zoo, pub lunches, walks with Elijah and Thunder. Normal things. The kind of normal that felt extraordinary.

On the Monday night we missed a call from Dr Alison. She had the bone marrow results. She left a voicemail saying she would call back. It was after hours and there was no number to call. We had to wait. When the phone rang the next day, mid zoo visit, Elijah running ahead of us on the path, we would have taken that call anywhere.

The RaRa gene, the one responsible for all of this, was undetectable at a molecular level. The result they had hoped for. We stood there and took a breath.

When Bill and Ann arrived on the Wednesday we opened a bottle of red to celebrate. Darren had a mouthful or two. The taste is still off from the treatment and he knows his body needs every advantage it can get. But we raised a glass. It felt important.

Having family support during the time at home was wonderful, especially after the week in hospital. I could train new team members, get into classes myself, and focus on setting up the business for the next round of consolidation when I would be absent from the studio again.

To pretend I can continue running things the way I did before is unrealistic. Life has changed. Indefinitely and exponentially. There is a grief for what we had and amongst it all a hope for a future that looks different from the one we planned.

Taking Bill and Ann to the airport the following week gave us a break from the home routine. Darren was feeling the best he had in weeks, a full week of no treatment at all, so we booked last minute to see Come Alive. It was a great show. The first time we felt something close to normal. The first hour or two of not thinking about cancer.

Looking ahead

The Friday before round two of consolidation we met with Dr Alison. A review of where everything was at and what the next round would look like.

The results are good. They will try the full dose of arsenic again and see how the body responds. Three rounds to go.

We asked the questions that sit in the back of your mind and are not easy to say out loud. Are there ever relapses? Yes, but rare. Are there secondary cancers? Yes, but rare. What happens after all the consolidation rounds are done? Three month check-ups for five years.

This is with us for life. There are no certainties.

The answers have consolidated something I think I already knew. Our lives will never be the same. They cannot be. And with that knowledge comes a grief for what was, sitting alongside a hope for what is still to come.

The other side

I want to talk about something that has been sitting with me for a long time.

My coach said to me recently that carers should receive a diagnosis at the same time as the patient. Because we have this too. I could not agree more.

When the diagnosis first happens everyone rallies. The messages, the calls, the meals, the check-ins. And then slowly, as the weeks become months, life goes on for everyone else. As it should. People are busy. The world does not stop.

But over here, it does not stop either.

Our relationship has shifted. Darren and I have always moved between supporting each other, physically and emotionally. For a large part of this time it is his turn to be held. That is okay, and I do it willingly and lovingly. But I am very conscious of how much he normally supports me. How he helps me navigate my business, my decisions, my life. For months now his capacity has been limited to surviving. Understandably so. And I feel that absence in ways I could not have anticipated.

There are days I am exhausted. Carrying the load of the medications, the nursing, the caring, trying to make Darren feel like he can still do things. The hand has made that impossible on some days. And I do all of this alongside running a business, keeping a home, and trying to hold myself together too.

Holding space for someone going through all of this is its own work. Lots of listening. Hugs and tears. Saying we will get through this and come out the other side, while not always knowing in that moment if I believe it. There are times I have pulled over on the side of the road on the way back from the shops, just to cry. To get it all out before I get home and go back to being the one who is okay.

Each day the emotions show up differently. Some days I am fully focused on supporting Darren, how he is feeling, what he needs, and there is simply no time or space to think about how I am feeling. Those days I run on adrenaline and love and whatever is left in the tank.

And sometimes, on top of all of that, someone asks how Darren is before they ask how I am. I feel almost selfish writing that. But there it is. The carrying is real and it is heavy.

We had talked about booking two nights in the Hunter Valley, a hot air balloon ride that had been on the birthday wish list for years. We hesitated. Luckily we did not book. Cancer has a way of sitting inside every decision, every hopeful plan that runs up against the reality of what this year is. We will get there. Just not yet.

I wish there was a guide for people on what to do and say when someone they love is going through something like this. I see everyone struggle with it and wonder if I would be the same. Probably. Knowing what to say is hard. Showing up anyway is enough.

In all of this, lives go on. Instagram shows everyone living life to the fullest and it is hard to watch so sometimes we don’t. If we have gone quiet on socials, that is why. No offence intended. We also have friends going through their own hard things right now. Knee surgery, open heart surgery, a tree falling on a house in the middle of the night and uprooting a life, literally. Everyone says it is not as bad as what we are going through. But hard is hard. We see it and we feel it alongside our own.

In the quiet moments, and particularly after last week’s conversation with Dr Alison, we are reminded of how close we came to Darren not being here at all. She reminded us how critical those first two weeks in hospital were. That would have been worse. Everything else is workable.

My exercise routine has largely gone out the window. I have managed to walk Thunder around the block most days and have been into a couple of classes when the numbers were small enough and the timing felt right. We have got a reformer out of storage and into the downstairs room now. My goal this next consolidation round is to use it at least three times a week. Movement has always been a big part of my life and right now time and energy are fighting me on it. When I have one I do not seem to have the other.

It is almost a relief to be going back into the known routine of hospital visits. The check-ins that tell us things are moving in the right direction. The familiar staff and faces. All of it brings a strange comfort, a lowering of the expectation that we should be able to do normal things. I look forward to a time when we can once again plan life. In the meantime we shall get on with the business of doing it, and be grateful that we can.

Here I am at 5:00am, finishing this post before we head into hospital for round two of consolidation. This morning we start again.

Three more rounds of this. Darren’s hair has grown back fuzzy, clipped a couple of times to get rid of the chemo fluff, and he is already workshopping material for book two and a stage show. The man has had three bone marrow biopsies and is still coming out with new jokes.

If that is not a sign we are going to be okay, I do not know what is.

Each day I find something to be grateful for. Some days it is as small as the sun is shining. Some days it is Elijah saying Grandazz. Some days it is a molecular level result that takes your breath away. Some days it is just that we are still here, still in it together, still making each other laugh.

One day at a time. 🩶

It is funny how the days can be so long and yet we get to Saturday and wonder where the week went. Treatment days stretch out in a way that is hard to explain until you have sat inside one. And yet somehow it is Saturday again.

This week was heavy.

A return to the daily grind of treatment for Dazz. Watching how it affects his body and his mind is heartbreaking in a way that sits alongside something else entirely. We are lucky. We have one of the good cancers. I still cannot believe those words come out of my mouth. Oh great, we have one of the good cancers. Ridiculous. And also true.

Some days are full of positivity. Others it is seemingly so hard just to put one foot in front of the other. Cancer affects not only the patient but the partners, families, children. You will often hear both of us say we when talking about what is happening. We are both balls deep in this. There is no other way to say it.

We still think we will wake up and it will have been a dream. Life will never go back to what it was. It is forever and exponentially changed. You do not ever not have cancer. You survive it but even in remission it is always with you, shaping every choice and every decision.

We are now in the first round of consolidation. Daily visits to the Cancer Clinic at Gosford Hospital.

Like all cancer wards, it is not a cheery place, though the staff do an extraordinary job of remaining positive. There is a massive churn of people. At least eight to ten bays in the outpatient clinic, each with four chairs, a constant rotation of people moving through them. Some are there for half an hour once a month. Some for a couple of hours every few weeks. Some weekly. Mostly they are a lot older than we are.

Our days start early. For me, five am is normal from years of studio life. It is the hour I use my brain for something other than leukaemia. Decision making, content, reviewing, writing. By six thirty Dazz is up and we aim to be out the door by seven twenty. Lunch is packed, smoothies made, snacks sorted for what can be an eight hour day. The pills are laid out. There is a bowl of them. ATRA, magnesium, potassium, reflux medication, antihistamine for the itching, an oral antibiotic to prevent infection, an antiviral. Breakfast is done, Thunder gets a quick run around the block, and we are out the door aiming for eight am at the clinic.

Traffic is school and work traffic. Even on the coast a thirty minute drive can take forty five at that hour. This week we made it by eight ten most mornings, which felt like a win.

In many ways we have both taken on a nine to five. Just not the kind either of us ever imagined.

Monday was the longest day.

First pod on the right. Not the best spot for a long day. Everyone walking past on their way in and out. First things first, Darren gets weighed so they can confirm the right arsenic dose every time. Then bloods, which can take anywhere from forty five minutes to an hour and a half to come back with the electrolyte results. Then an ECG to check heart rhythm, something to monitor carefully on this treatment. This week they will be daily while the team gets a read on what Darren’s body is doing. I am not convinced a treatment pattern actually exists yet but they assure me it does.

Monday is also PICC line dressing day. The lines cleaned, flushed, the dressing replaced. Darren’s skin has been reacting to the dressings and the Chlorhexidine they clean with, so the team has got creative. A clear plastic cover now, sometimes needing a fix again mid week. One small win though. Off the IV antibiotics, the horrible rash on his right arm has completely cleared up. His skin is already less reactive than it was.

While we waited on the bloods we ducked across to the fracture clinic for the weekly hand check. One of the busiest outpatient areas in the hospital. At least thirty patients waiting every time we have been there. Appointment times mean very little. We arrived at ten and were seen at ten fifty. Frustrating when you know how long the day ahead already is. The nurse unwrapped the hand, a surgeon reviewed it, it was wrapped again and we were back down to the cancer clinic.

The upside. No infection. Slowly, slowly healing. We are both looking forward to the day Darren can use that hand again. He is learning to write left handed and getting surprisingly good at it.

Back at the clinic the bloods showed electrolytes still low despite starting magnesium and potassium tablets the day before. Three bags of potassium and one magnesium. Four hours right there before arsenic could start. We left at four thirty.

Thankfully the freezer was stocked. Dinner was quick. I put the call out on Facebook for slow cooker recipes, the kind you throw on in the morning before a long day or prep on the weekend and freeze for the week ahead. Thanks for the recipes so far. Keep them coming. Lots of veg. That is what we need right now.

Tuesday ran smoother.

Without the fracture clinic and with the previous day’s bloods as a guide, they started potassium straight away. By the time the new results came back one bag was already done. We had a window seat around the back, away from the constant foot traffic. A much kinder experience. We were out by three thirty.

Wednesday started well. Same window bay. One bag of magnesium running, everything moving along, and then the ECG came back and stopped us in our tracks.

For those following the medical thread of this, here is the technical bit. QTc prolongation is a known side effect of arsenic treatment. It measures the time between heartbeats, the flat part on a graph. The acceptable range in Darren’s case is under 475. Over 500 is not a good place to be. Darren’s result was 498.

Electrolytes are the solution, so it was one magnesium, two potassium and a retest. Result came back at 492. Still not low enough. No arsenic today. We were out the door at one thirty.

You would think leaving early would feel like relief. It did not. It came with a whole lot of questions. What does this mean for treatment? Will the leukaemia be okay? Will missed doses need to be made up? Will this prolong everything? We keep hearing this is really common but we do not know anyone else doing this, so it does not feel that way.

On the upside, we made it to the post office at Bateau Bay. A bunch of Darren’s books had been waiting to be sent out. If you do not know about How Did I Get Here?, head to Darren’s website. It is a good read and it features a really cool chick I know. 😉 He is currently recording daily voice notes for book number two. Really, How the F#@! Did I Get Here? feels about right.

Right next door, the Salty Cod. If you are ever on the coast and craving something fried and perfect, their hot chips and potato scallops are worth the trip. We did not need much convincing.

Thursday was a struggle.

Day four of twenty was starting to feel real. Two weeks at home, even with appointments, had been a blessing. We had settled into a rhythm of sorts. Rest, recovery, walks around the block with Thunder when the energy was there. Now we were back to sleepless nights. Bandaged hand one side, PICC line the other, sweats from the arsenic, headaches. Stripping and changing the bed in the middle of the night. Washing everything. A week of rain that made drying anything almost impossible.

I was exhausted.

We got Bay One again. Right next to the scales, facing the entry doors, the full parade of people arriving for their own treatment in our direct line of sight. I stepped out mid morning for a scheduled meeting with our accountant. Switched my brain to business. The closed Erina studio, the machines in storage that still need to be sold, the reality of a year we had not planned for and cannot plan around. Working trips to Japan in October, cancelled. Adelaide before Christmas, cancelled. No future plans. Just survive.

When I got back to the clinic at twelve there were still two hours to go. The social worker came and sat with us. Made some appointments for next week. We talked about navigating this period and for the first time the knowledge I carried from my years working with Carer Gateway really landed differently. I knew about being a carer in a professional sense. I had built systems for people in exactly this situation. Sitting in that chair, I felt the full weight of it.

Friday was the toughest day of the week.

Darren had a repeat CT scan for his lungs at Erina, a quick check to confirm all clear following the one taken over six weeks ago in hospital. We needed to leave by two forty five. The clinic staff had said all week, no problem.

We left home at seven fifteen. No walk for Thunder, straight to the hospital, arriving at seven fifty. Ten minutes early.

And then nothing ran to time. The bloods took longer than usual. Electrolytes could not be started early. We were watching the clock from ten am. Murphy’s Law in full effect on the one day we needed things to move. Darren had been awake most of the night with headaches. A day off arsenic followed by a dose had triggered them. He was tired. Stretched. We both were.

We made the scan at three thirty on the dot, stressed and frayed at the edges.

And then it was done.

We drove home. Took Thunder around the block. Looked at each other and made a decision.

Darren’s white cell count and neutrophils are in a good place. We are going out for dinner.

Fourteen weeks since we had eaten anywhere other than the hospital wards or our own kitchen. We found a table at the Bateau Bay Hotel for an early bird. Schnitty on the menu. We sat there like two completely normal people having dinner on a Friday night. It was everything.

And now, two days off. Saturday and Sunday. No public holiday for us on Monday but we will take the weekend as our own respite.

Somewhere in the middle of all of this week I have been sitting with something that is hard to put into words.

This life is isolating. There is no other word for it. The world is moving, friends are living their lives, weekends are happening, and we are in a cancer clinic watching electrolyte bags drip. The gap between our world and the normal world is hard to bridge from either side.

Some days I am the strong one. Some days it is Dazz. We carry each other’s weight depending on who has more to give that day. Walking this side by side, exactly as it should be. At Maegen and James’ wedding we spoke these Bruce Springsteen words in our speech for them. They have never meant more than they do right now.

“If I should fall behind, wait for me.”

We are waiting for each other. Every single day.

Every message, visit, dropping something at the door, taking Thunder for walks and helping us stay connected to the world outside leukaemia helps.

Dazz feels the weight of my non Festival of Robyn birthday this year. He doesn’t need to. What I know is that 2027 will be a big celebration, hopefully six months past intensive treatment. For now I am grateful we have that to look forward to. And that on the 13th I get to spend the day with Dazz. It is a Saturday. We will not be in the hospital. For that I am grateful. I am hoping for sunshine and a long lunch somewhere local. Perhaps we will see some familiar faces.

Different to what I imagined. Better than the alternative.

Two days off. Schnitty consumed. One week of consolidation done.

Fifteen days of round one to go. 🩶

It has been just over two weeks since we came home from the hospital.

Wednesday 13 May. Bone marrow results were back. Darren had achieved remission with only 3% leukaemic cells left in his bone marrow. The end of the induction phase. The first part of treatment, done.

Now home to rest.

That final day in hospital was long. By the time the haematologist delivered the news it was already 11am, and there was a lot for the medical team to organise before we could go anywhere. Hospital in the Home for the daily redressing of the hand and ten more days of IV antibiotics. Lists of times to be at the outpatient clinic. A pharmacist with a bag full of tablets and a list of what to take when. Final doses of treatment. And finally, at 4:30pm, we were free to go.

It was the first time Darren had been out of the ward in 45 days. The first time he had been in the car with me since I drove him to ED that fateful night on 30 March. It was a long slow shuffle in his cheap Kmart slippers, the only things that would fit his, very Austin Powers, “fat bastard” feet. The swelling would go down, they said. His calves and ankles were carrying the fluid retention from weeks of treatment, a side effect of steroids, arsenic and ATRA that his body was slowly working through.

Thunder, our Frenchie, was absolutely beside himself.

In our past life, Dazz was the one home during the day when he was not travelling. Walking Thunder around the block, taking him to the lake, keeping everything running. Six weeks later, Thunder was thrilled he was back. The little fella had been outside scratching at the door and licking the glass through every Hospital in the Home visit, all FOMO, not understanding why he could not be inside and next to Darren at all times.

Some things do not change.

The next few days were appointments.

Getting ready was laborious. Everything was slower. Painful swollen legs and feet, ankles that did not want to bend, covering the PICC line and the bandaged hand to get in the shower, doing everything left handed. His right hand, not at all.

The GP appointment was emotional in a way I had not anticipated. The last time Dazz had spoken to him was the night we went to emergency, when he said get to hospital. For me it was a check in from emergency and then a call the next day to see how we were. Walking back into that room felt like a long time ago and no time at all.

Friday was the first visit to the Cancer Outpatient Clinic.

To say that driving back to that hospital was hard is an understatement. For me it was walking back into the corridors, the cafe, every space I had lived in for seven weeks. For Darren it was returning to the place we had driven to 46 days earlier and not left. The reality of the severity of that first night was starting to properly sink in for both of us.

Living with cancer really hit home once we were out of the hospital.

Suddenly home had a new and very different reality. One that is still constantly shifting. Clothing needed to be comfortable and PICC line accessible. Big knitted socks, thanks Mum, were the only things that would fit Darren’s feet. Velcro slides for when he needed to walk. Beanies for a bald head that was cold.

The outpatient clinic was a confronting place to sit. Four people to each bay. A lot of people fighting their own battle, some with friends and family, some alone. A high percentage older, with grandchildren beside them and partners holding their hands. Roughly 3% of all new cancer diagnoses each year are leukaemia. APML accounts for roughly 5% of AML cases. It is rare. It is treatable. The treatment is long and brutal. And sitting in that bay, looking around, you understand for the first time that this is not a club anyone would choose to join.

A year ago, cancer was something that happened to other people.

You wake up one day and your whole life changes. Not slowly. Not gently. Suddenly, everything is different. The schedule revolves around nursing visits, hospital appointments, medications, side effects, blood results and the waiting. Always the waiting.

And the part people do not talk about enough is that cancer does not just affect the body. It affects identity. Watching the physical changes in Darren, the exhaustion, the not feeling like himself. A body doing enormous work that nobody can see from the outside.

Each day starts the same way. How did he sleep? It is the first marker. The one that sets the tone for everything that follows. The PICC line, the bandaged hand, a body sweating out anaesthetic from three surgeries and slowly finding its footing in the break from arsenic and ATRA. Sleep was not simple.

The medical team decided to hold off another week before the second round of treatment began. It was both a relief and its own kind of scary. They wanted more time for the hand to heal. They have said it is going to take a long time. Based on what I have researched, my guess is at least six weeks.

In a way, the hand has taken a lot of focus. It has almost become a distraction from the main story, which is that Darren has leukaemia. We are slowly learning to use the word cancer. To know that it is us now. Darren’s body is the one being battered and doing the extraordinary work of fighting back. But we are living it together.

There are no vows between us, never have been, but if there were, in sickness and in health lands very differently when you are living inside it. You do not need a piece of paper to know you are in this for life. We always have. But the depth of what that means is something else entirely now.

On his last blood test, Darren’s neutrophils were up to 3.5. That is a good number. They will get knocked around again with the next round of treatment, which starts next Monday.

From here, ATRA continues two weeks on, two weeks off. Arsenic five days a week at the Cancer Outpatient Clinic, four weeks on, four weeks off, eight months in total. That is without hiccups, and there may be hiccups. It takes us to the end of the year at least.

Every year on 1 June the countdown begins. My birthday is 13 June and I have always leaned into it with full commitment. The last few years, with the studios and life being what it was, it had quietly slipped by without the big celebration I love. This year we had planned to fix that. A weekend away with friends, a proper celebration. That is not happening now. But I am here, Darren is home, and his neutrophils are at 3.5. Having him still here is enough. More than enough.

The good parts are real and they matter.

Visits from Lucas and Elisa, Darren’s kids. They have been coming every week. Sitting with him, playing pool, filling the space with something that feels like normal. It has meant more than words can say.

Messages and calls from friends checking in. We see and appreciate every single one of them, even when it takes us a while to get back. Knowing what to say is hard, we understand that. Honestly the best messages are simple. “We are thinking of you.” “This is shit.” Because it is. Sometimes that is all you need to hear. And then something that has nothing to do with leukaemia, a story, a laugh, a reminder that life outside these walls is still moving. Even when watching the world carry on as normal is harder than it sounds.

We know that when treatment ends, cancer does not leave. This is us now.

And this changes you. You see life differently. We sit here sometimes and say, how is this us? It still does not feel real. Some mornings you wake up and for just a second you wonder when you are going to open your eyes and find it was all a really bad dream.

But then your feet hit the floor. The day begins. You figure out what cancer is bringing today. And you get on with it.

One day at a time. 🩶

There is a certain irony in the treatment pathway for Acute Promyelocytic Leukaemia.

It is regimented. Studied. Scientific. It comes with printed schedules and typed protocols and teams of people who have done this hundreds of times before. And yet from inside it, almost nothing feels certain. So many variables. So much that shifts from one day to the next.

For someone who needs to know what is coming, that is its own kind of hard.

Darren is a Capricorn. He will tell you this is why he likes ordered things and certainty. After thirteen years, I have come to understand he is right. There is a structure to how a comedian works that most people in the audience never see. The laughs look spontaneous. The tangents look accidental. But underneath all of it is architecture. A pattern, tested and trusted, that carries the audience through without them ever knowing it. Darren has spent years finding his. It is what makes him so good at what he does. And it is also just who he is. At home, on the road, in a hotel room he has never been in before. Order matters. Knowing what is coming and having it happen are not small things. Certainty is not a preference. It is how he is wired.

And now he is living inside a system where almost nothing is certain except the name of the next drug.

On paper, the treatment looks like a plan. Idarubicin on days two, four, six, eight. Arsenic from day nine through to day thirty-six. ATRA every day.

In reality, each body responds differently. And each days delivery of treatment is different. The bloods results take as long as they take. Medications are not always signed off when they should be. Some nights the team quietly slip in and start bags of potassium at midnight, boosting electrolytes so his body is prepared and the arsenic treatment can be given earlier in the day. Even then, nothing is guaranteed. Some days treatment wraps up by two in the afternoon. Some nights the last bag does not come down until ten, and there has not been more than an hour without someone walking through that door.

Last Tuesday, we had the second bone marrow biopsy.

This was the test. Not the daily bloods, not the ward routine. This was the one that mattered. The one that would tell us how many leukaemia cells were left in his bone marrow and blood. The one that would tell us whether we could go home. Darren could rest. Sleep past two in the morning without a machine beeping him awake. Sleep without being connected to tubes and interrupted by the rhythm of the ward that never, ever stops.

We were not even sure it would be Tuesday. The hospital had just rotated its registrars. The ones who do the testing had come from Royal North Shore and were sitting in an induction room at Gosford on Monday. So the test we thought might happen Monday did not. Tuesday morning arrived and even the nursing staff were not sure when it would happen.

And then, fifteen seconds after we mentally shifted ourselves to Wednesday, two registrars walked in.

We’re here to get your consent for the bone marrow biopsy. We’d like to do it now, if that’s okay.

That is the known unknown. That is what we live in.

For those who have had a bone marrow biopsy, or watched someone have one, you know it is not a gentle procedure. The first bone marrow test was done in ICU. They had a cannula in and access to drugs they could push through it to take the edge off. On the ward, that is not an option. What they offer instead is the green whistle.

And yes, it is green. It looks and sounds a little like a kazoo. They teach you to breathe through it slowly, building to deeper breaths, and there is a hole at the top you can cover for double strength when you need it.

Darren got the giggles. The registrar looked over and said, it’s working. Good job, Darren. Keep breathing.

Between the fits of laughter and the breaths, he started talking. Something about a bowl that would never run out. And then mid-thought, mid-whistle, he looked at me.

Write that down, Robyn. Write that down.

A few more breaths. More gibberish. Another deep pull on the kazoo.

Write that down, Robyn. I don’t think you’ve written that down.

Because when he is ad-libbing on stage, I am in the audience taking notes. Writing down the new lines and observations so he can jog his memory when he comes off stage. And even high as a kite on pain relief, mid-biopsy, in a hospital bed, some part of him knew. This is material. Do not let it go to waste.

I had tears rolling down my face.

The green whistle story is one that can only be regaled in person. The places his mind wandered to while they dug into the bone of his pelvis to take samples, you really do need to hear it told properly. I still laugh every time I retell it. Ask me next time we catch up.

After the green whistle, there was the wait.

The haematology team came Wednesday morning. Last week it was Dr Tasman. We had met him in ICU. That tells you how long we have been here.

The anticipation in that room was its own thing.

The news he led with was not what we wanted to hear.

We’re not ready to stop treatment yet. Your results were borderline, close but not close enough.

Under five percent is the magic number. The number of leukaemia cells they want to see before round one of hospital treatment can close.

Darrens results came back at six percent.

One more week of arsenic. One more week to wait for the next bone marrow test. The four walls that had started to feel like they might open just closed back in again.

I watched him absorb the information. There are no words for a moment like that.

And then, in the middle of all of it, the hand.

In his blood while his immunity was at its lowest, an infection took hold and moved to his right hand. His guitar strumming, piano playing hand. It has nothing to do with the leukaemia diagnosis and everything to do with his bodies ability to heal and for him to go home. IV antibiotics. Surgeries. The hand has become the symbol of every setback through this admission, a complication that arrived uninvited and has refused to leave quietly.

Gosford Hospital has thirteen orthopaedic surgeons. Darren has probably met every one of them. A new face every morning, a different face between the ward and the theatre. Having to build trust from scratch, over and over, with another stranger. Another constant change in a place that is already full of them.

Mostly I do not see the orthopaedic team. They come first thing in the morning before they hit theatre, and occasionally I see them post surgery. It is an uncertainty Darren faces on his own. When I arrive after the ward doors open at nine I get the debrief. What they said, what they found, what they have decided.

When his neutrophil count finally climbed over 1.0, I did not have to wait for the debrief.

I got a text.

They want to operate.

He is tough. But that punch landed.

The surgery was to clear the dead tissue that had been sitting there unresolved while his immune system had nothing to give. And then they left the wound open, unstitched this time. They call it secondary intention. It’s packed with gauze. Daily checks and re-dressings, unpacking, repacking, antibiotics running through the line. Each one brings pain. And the question sitting underneath all of it: will the hand be the thing that holds up getting him home?

Forty-three days ago, Darren packed his travel backpack. A toothbrush, change of clothes, his phone, his laptop, his headphones. We drove to Gosford Hospital Emergency Department. He has not left since.

The days have their own rhythm now. Thunder gets his walk. I squeeze in some movement in the morning if I am up early enough. Ten minutes of yoga, a thirty minute weight session, something to keep my body in the game. Then I pack everything up. Protein smoothies, whatever I have cooked overnight, freezer meals for the fridge in the room. And I head out.

The hospital cafe has an app. I cannot explain the disproportionate joy this has brought me. I order my coffee from home, walk in, pick it up, go straight upstairs. The small things matter enormously when so much is outside your control.

Darren’s taste buds have changed. Everything has an odd metallic taste from the treatment. The meal service requires him to choose what he wants twenty-four hours in advance, guessing what he might feel like tomorrow without knowing how he will feel. I try to anticipate. Sometimes a toastie from the cafe is enough. Meal times are exhausting in a way that is hard to explain. It feels like permanent camping. No table, no chairs, no background music. A proper meal at home, fresh and warm, at a table, feels like the furthest away thing imaginable. And the thing I most cannot wait for.

At first, the idea of coming home felt almost frightening. The ward is relentless but it has its own strange comfort. Someone is always there. There is always someone to catch it if something changes.

But now Darren just wants one full night’s sleep. Woken only by himself. Not by a machine, not by a beep, not by someone coming in at three in the morning to write their name on the whiteboard. The ability to roll onto his side during the night without untangling a web of tubes.

Dr Tasman mentioned over the weekend that treatment might be able to stop this week. Tuesday was the carrot. And today is Tuesday. Bone marrow test number three was this morning. Right now we are waiting. Preliminary results come tomorrow. Full results Friday. DNA results a couple of weeks after that.

We have everything crossed for tomorrow morning and the words: no more arsenic for now.

If that comes, it opens the door to Hospital in the Home. Daily dressing changes at home instead of there. A break in treatment. At least a week without being inside the four walls of Gosford Hospital, the haematology ward, his room. A small break in what is, as we now know, our whole year.

Two weeks ago a chart went up on the bathroom door. White cell count, haemoglobin, platelets, neutrophils. The important markers for blood cancer. Data means everything. Numbers are everything. We could see improvement from day twenty-nine onwards but nothing before that. The days before were blank. The nurses were running, genuinely running, and filling in a chart was the thing that quietly dropped. After rounds one day, one of the registrars Cindy came quietly back into the room. She took the chart off the wall.

I’ll fill these in for you.

Through all of the uncertainty. Through all of the unknown.

There are moments of such extraordinary kindness.

That is the thing that keeps you going. 🩶

One month.

Thirty one days ago our lives changed completely and irrevocably with a phone call from a doctor telling us to get to hospital. Since then, Gosford Hospital has become home. The nursing staff know us by name. The ward rhythms have become our rhythms. And somewhere along the way I started having conversations with other families in the kitchen, the ones heating their dinners at the same time as me, carrying their own versions of this. Different stories, different rooms, same weight.

People come and go on this ward, like all wards, but it feels different here. Nobody goes home better. They go home managing, recovering, waiting, hoping. All of them arrive with someone who loves them, someone who is also quietly learning how to live inside this new reality. There is a heaviness to it that is hard to explain. And somehow, in the middle of all of it, the staff remain positive, cheerful and supportive. Some more than others of course, but the nurses on this ward do an extraordinary job. They carry a weight most of us never have to think about and they show up for it every single day.

One month of living with leukaemia. It is worth pausing on that.

Monday was a hard day.

Not medically. Just humanly. The second surgery on Darren’s hand had come and gone, another exploration, more draining, more of a setback than we had hoped for. The antibiotics were doing their work. The bump that kept giving was finally, slowly, starting to ease.

But Monday the exhaustion landed. The kind that is not just tired. The kind that is the weight of all of it, accumulated, sitting down on your chest and refusing to move. The road ahead felt very long and the pause felt interminable.

That same Monday, Liz, the Nurse Unit Manager on the ward, sat down with us. She has walked a road not unlike this one herself and she knew, without us having to explain it, what we were carrying. She talked us through things that would help, not medically but mentally. The reassurance that we could reach her, that we were not navigating this alone, that there were people watching over not just Darren but us. That if things felt overwhelming there was somewhere to turn. It was one of those conversations that does not fix anything and somehow fixes everything. One of those moments where someone sees you, properly sees you, and it is enough to help you stand back up.

Tuesday brought this week’s haematologist. Her name is also Alison.

We have decided the Alisons are the extra special ones. They are the ones who stop for more than a moment to ask a question and actually wait for the answer. Who take the time to explain not just what is happening but what it all means and where it is all going. She talked marathons again. There will be a lot more of this to come, and she wanted us to understand the full shape of it.

All of Darren’s markers are good. The hand is a hiccup that may delay going home a week or two but the trajectory is right. Around the 10th of May is still the target for the end of this induction phase of arsenic and ATRA treatment. Next week brings another bone marrow test. If the leukaemia is in recession and the hand cooperates, going home will become a reality sooner rather than later.

After that, ATRA continues two weeks on, two weeks off. Arsenic will be four weeks on, four weeks off, four times over. As an outpatient. Monday to Friday.

Weekends at home. 🙌🏻

Eight months of treatment. The rest of the year. There will still be a lot of time at the hospital, a lot of drives, a lot of long days. But from here, Darren will be in the passenger seat beside me for them. That is not nothing. That is everything.

Going home is everything we want and at the same time it brings its own fears. In here there is broken sleep and constant interruptions but there is also the quiet reassurance that if something changes, there are people who will catch it. A quick question answered. A little reassurance given. Someone always there to steer things back on course. Leaving that behind is a different kind of unknown.

At home the precautions remain. Darren’s immune system will still be severely compromised, which means hand sanitiser, careful hygiene and vigilance around any possibility of infection become the new normal for everyone around him. We will learn it as we go, as we have learned everything else on this journey.

Between Liz and Alison number two, Tuesday felt like people were properly in our corner. Really in it.

Before the surgeries, before the infections took over the week, I had been sitting with something I hadn’t yet put into words.

On the drive to the hospital one morning, my phone rang. It was my 2IC and clinical educator from my time as Service Director of Carer Gateway, a national program supporting unpaid carers across Australia. We caught up, we checked in, and then we both laughed at the irony of it. Here I was. The person who had helped build the systems, who had sat with carers and heard their stories and put their faces on a website so others could find support. Now I was one of them.

I had felt for those people. Deeply. I had understood, in a professional sense, what they were carrying.

And then one day I walked into a hospital room and saw my name written on a whiteboard.

Carer: Robyn.

Just like that, I was one of them.

There is something no training, no policy framework, no video project prepares you for. The moment it stops being someone else’s story and becomes yours. The moment you stop being the person who understands carers and become the person who needs to be understood.

I take this role on willingly. Lovingly. Without question. Darren would do the same for me in a heartbeat and I know that without doubt.

But here is what nobody tells you. It is relentless. Not in a dramatic way. In a quiet, daily, one foot in front of the other way. It is the drive home at 10pm after surgery. It is the Monday when the weight of it all just lands and you have to sit with it. It is holding space for everyone who loves him, because they are scared too and they need somewhere to put that.

And it is also this. Watching the man you love refuse to surrender any more of himself than he absolutely has to. Watching him give a thumbs up from a hospital bed with a heavily bandaged arm and mean every bit of it. Watching him still be completely, unmistakably him.

That is the thing about being a carer that nobody puts in the brochure. It will break your heart open in ways you did not expect. And somehow, in the middle of all of it, there is this profound and humbling privilege of being the one who gets to be there.

One morning at a time. 🩶

Marathon not a sprint. It will be a bumpy road. Think of it like four wheel driving. Some days will be rough with hills to climb and others will be smooth and easy.

We have been plodding along. When Dr Alison came in last week she said exactly that. Keep plodding. Plodding is good.

On Tuesday, we stopped plodding.

Darren’s family had been visiting, which was a gift in so many ways. His parents Bill and Ann were able to sit with him every day, which meant I could step outside for air, for time, for the kind of quiet you cannot find inside a hospital ward. His sister Debbie cooked for us, which was a godsend when the mental load of just being there takes up everything you have. The end of term colds that swept through the kids meant only masked quick hellos and goodbyes, which was its own kind of heartbreak, but the grown ups made it work.

Monday was a cracker of a day. Dazz was feeling great.

Tuesday arrived with a heaviness already in the air. The family were preparing to leave. There is something about a goodbye inside a hospital that sits differently to any other goodbye. Everyone held it together. The group photo was taken. And then they were gone.

Earlier that morning Darren had messaged me. Terrible sleep. Feeling flat. I told myself it was probably the anticipation of his parents leaving. But when I arrived and saw him, something felt off. His thumb was feeling strange. He thought he had slept on it wrong.

I was not convinced.

Over the course of that day the arm turned red. The thumb began to swell. His skin was hot and his temperature was climbing. An infection. The kind they call a known unknown. Expected in someone with no immune system. And still, completely terrifying when it arrives.

A string of doctors and specialists came through. Orthopaedic surgeons drew markers on his arm to track whether the redness was spreading. It was. Scans, X-rays, two ultrasounds. No clot, which had been one of the possibilities thrown around. Antibiotics began. The PICC line was removed late that night to cut off any path the infection could travel. Blood cultures were taken, and kept being taken.

By Tuesday evening Darren was on hourly monitoring. Blood pressure low. Temperature at 39.8 when I left at 9:30 to drive home. He was being taken care of. I knew that. And still, the drive home was one of the hardest I have had.

Wednesday morning the swelling had not improved. Two infections now. One in the blood, one in the hand. Origin unknown. The orthopaedic team came back, moved the hand, assessed the joints, felt confident from the movement and the scans that it was not bone. An ICU doctor was sent down. It felt like the whole hospital had quietly gone on alert.

They were watching his blood pressure closely. If it stayed low overnight, he would be moved back to ICU.

It felt like we had gone back to the beginning, except this time we were less sure of what we were dealing with. The infections were expected. How they were presenting was not.

The orthopaedic surgeon returned with a more senior colleague. Darren’s hand continued to swell. He said it felt like it was going to split open.

Surgery was the only option.

At 5pm he was wheeled away and I waited.

It did not come without risk. With low platelets, Darren bleeds. Two bags of platelets were given in preparation. Bags of blood were kept at the ready. The anaesthetist told me likely two hours, all going well, with extra time to ensure any bleeding was under control. He might come back to the ward. He might end up in ICU.

I was hoping for the ward.

I went and got dinner to fill some time. I sat on the ward from 8pm. Just after 9 he was wheeled back in. Not to ICU. To the ward.

I took that as a win.

His arm was put in a gallow sling. I stayed while he drifted in and out of a post-surgery haze, having conversations with me that he would not remember in the morning, drifting off mid-sentence. Once he was settled, I left for home a little before 10.

Thursday Morning. Day 24.

The orthopaedic surgeon had already been before the ward opened. The exploratory surgery had not found what they were looking for, but it had not found what they feared either. No pus. There was fluid, which they drained and sent away for testing. Results pending. Still in the known unknown.

Darren is now in a gallow sling with cannulas in the other arm. He told me he feels useless. This is a man who, through all of this, has refused a catheter. Every day, no matter how hard it is, he gets himself out of bed and walks to the bathroom under his own steam. It is a small thing. It is everything. It is him refusing to surrender any more of himself than he absolutely has to.

Dr Alison came in the afternoon. She explained what others had told us but in the clear, steady way she has. With zero neutrophils, Darren’s body has no way to fight the bugs that a healthy immune system handles without us ever knowing. The E. coli in his blood almost certainly came from his gut. In a healthy person it would have been nothing. In his body right now it became this. She is watching closely. The haematology team is across it. And despite everything, the arsenic treatment is tracking well. His disease is responding. One day off the treatment should not change the length of this first round of induction.

To everyone sending messages asking if Darren is feeling better, if he is out of hospital yet, we know those questions come from love. They do. But there is still a long road ahead and we are not yet anywhere near the end of it. We see every message. We feel every thought.

If you have offered help, or would like to visit, and that offer still stands, please know we are grateful beyond words. Meals are one of the biggest things right now, though they come with a catch. Blood cancer and its treatment can weaken the immune system, which means food preparation, cooking and storage all need to follow careful safety guidelines to reduce the risk of infection. Some foods that carry a higher risk of harmful bacteria need to be avoided altogether. We are working through the logistics of getting meals to us safely but please don’t let that put you off offering. Walks for Thunder, our mad little French Bulldog, would mean the world too. Don’t hesitate to reach out and we will figure it out together.

This is a bump in the road. It has felt like a very large one. But it is the first we have had in 24 days, and for that we are genuinely grateful.

Darren is still getting out of bed every single day. Still refusing to surrender any more of himself than he absolutely has to. Still in there, fighting.

One morning at a time.

For the first few days we didn’t ask whether Darren would lose his hair. We wondered. Of course we wondered. But asking felt like it would somehow summon it, pull this whole thing out of the realm of what still felt, in the strangest way, like an elaborate acting gig and into something undeniable. So we didn’t ask.

Eventually we did. One of the doctors who came through ICU. No definitive answer. Then another. Same. Then on one of Alison’s twice daily visits we asked again. Will the treatment make Dazz lose his hair?

More than likely, she said. In clumps. But not until later.

Right then and there we made a decision. If and when that time came, we would shave it. We would choose it before it chose us.

We also asked about nausea, another thing we had been bracing for. The answer surprised us. If it hasn’t shown up by now it probably won’t. So we let ourselves hope that maybe the hair wouldn’t fall either. Maybe we would be the exception.

Then one morning I arrived at the hospital with clean clothes and the plan to help Dazz shower. Threading all his drips and everything attached to his PICC line through his clothes takes time and care each day. The nurse helped us get sorted and he stepped in.

He wet his hair and ran his hands through it. When he straightened up for me to help him wash, hair had fallen all down his face like snow.

It had started.

We both cried.

As we redressed with a new shirt for the day the nurse gently suggested we wait until the next day to shave so he could shower after. So we sat with it for one more day. And the next morning, we did what we said we would do.

There is something else happening in Dazz’s body right now that I want to be honest about because this journey is not just about the big visible moments. It is also about the quiet, grinding ones.

Mouth ulcers have arrived. A side effect of the four doses of idarubicin, the chemotherapy he received in those first days. What we have since learned is that these ulcers do not stay in the mouth. They run through the entire body, from one end to the other, and with them comes significant pain and a terrible irony: he is hungry because of the steroids but struggles to eat.

We traded nausea for this. It is hard to know which would have been worse.

The medical team has told us this should last seven to ten days before it starts to resolve. We are counting those days.

Family from Adelaide have come to be with us again and it has lifted everything.

The Road Ahead

For those of you who have been asking what the road ahead actually looks like, here it is as best as I understand it.

Darren is currently in the induction phase, which takes place in hospital. He received four doses of chemotherapy, a drug called idarubicin, given on days two, four, six and eight. Alongside that from the beginning he as been taking all-trans retinoic acid (ATRA), a highly potent derivative of vitamin A, daily that works specifically on this type of leukaemia. It makes immature promyelocyte cells mature, so they are no longer leukaemia cells. From around day nine he also began daily arsenic treatment, which continues through to day 36 and beyond.

But before the arsenic can be given each day, which is a two hour process, his body has to be ready for it. That means twice daily blood tests, followed by whatever his levels say he needs. Electrolytes, magnesium, potassium and full blood transfusions. He also receives cryo, which is a portion of plasma rich in clotting factors that helps slow or stop bleeding, critical for someone whose platelets were so dangerously low when this all began. All of it administered before the arsenic can begin. He is also on steroids, and diuretics to manage the swelling the steroids cause. On top of that, chest x-rays and heart ultrasounds happen regularly, watching constantly for any sign of blood clots.

On a good day, getting through everything before the arsenic can even begin takes four hours. On a harder day it can take eight to ten.

This is what a day looks like from the inside.

Around day 30 there will be a bone marrow test. That test will tell us whether the treatment is working. We have everything crossed for that one.

If all goes to plan, he comes home after that for a one to two week break. Then the consolidation phase begins. Two rounds of treatment, each as an outpatient. The first is 25 days of ATRA and arsenic. Another break. Then 35 more days of the same.

Being at home sounds like relief, and it will be. But it is not rest. Every day during consolidation Darren will travel to Gosford Hospital and go through the same process he does on the ward now. Blood tests first, then whatever his levels say he needs before the arsenic can be given. The time that takes will depend entirely on what his bloods show that day, just as it does now. Some days four hours. Some days much longer.

I am honestly not sure yet which is going to be more punishing. The hospital stay or the daily marathon of coming and going. We will cross that bridge when we get to it.

After consolidation, fingers crossed, maintenance.

We are talking months, not weeks. Alison was right when she called this a marathon.

In the meantime, life as we know it is on hold. Darren’s immunity is very low and keeping him away from infection is one of our most important jobs right now. The world has to come to us carefully and on his terms.

We did not sign up for a marathon. But here we are, lacing up. Eyes open, one day at a time, with a bald man who still manages to make the nurses laugh.

Thank you for being here.

Robyn x

PS. For the record, I think he is still absolutely handsome with a bald head. My silver fox is now a bald eagle.

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Most stories have a moment where you can point and say, that is where everything changed. Ours does too. We just did not know it at the time.

It started with sore and bleeding gums. Darren went to the dentist, got a clean, got something to treat it. A few weeks later, tonsillitis after a ship contract. Penicillin, a week at home, back to work. Then a cough. Breathlessness. The other tonsil flaring up. An x-ray that showed a little something on the lung, so steroids were prescribed.

Each thing had an explanation. Each thing was treated. None of it connected.

Then over one weekend, blood blisters appeared. Bruising that had no reason to be there. Back to the GP for blood tests, and that evening the phone rang. Go to hospital. Not tomorrow. Now.

Before we left for the hospital our GP had already called Darren. By the time we arrived at ED and were in triage, he called again. We missed it. Then while I was out at reception, standing in a queue giving Darren’s details to get him admitted, my phone rang. It was the GP. He was direct. Darren was very unwell and it was urgent he speak to someone at the ED. It could be a severe infection, he said, or blood cancer. The pathologist had already called him twice. He was not going to let this get missed. I stood there in that queue and took those words in. It was not confirmed. Darren did not know. So I walked back through those doors and I held it, quietly, until there was something real to tell him.

After triage they took bloods and hooked him up to machines. He still did not feel extremely unwell at that point, just sick the way you feel with tonsillitis. We were not prepared for what came next.

At around 9pm the ED doctor sat down with us. She said she needed to talk.

She told us Darren was extremely unwell. That he had leukaemia. His white blood cell count was dangerously high, making him highly prone to infection. His platelets were critically low, which meant he was at risk of bleeding to death. The next 24 to 48 hours were critical. The on-call haematologist was already on her way from Newcastle.

It felt completely surreal. It came out of nowhere. He had routine blood tests in January that showed nothing. They told us this type came on fast.

One of the ED nurses had a quiet giggle with us that night. The diagnosis needed special blood testing that could only be done at Royal North Shore in Sydney, but there was no medical transport available at that hour. So Darren’s blood made its way to Sydney on the back seat of a taxi, with a cab charge to pay for the ride when it arrived. Even in the middle of all of that, we laughed.

That is Dazz, by the way. The whole time during admission and the lead up to ICU, he was cracking jokes with the staff. He very quickly became known as the comedian on the ward. Some things a diagnosis cannot touch.

The haematologist, Alison, arrived and confirmed she was already pretty sure of what she was looking at after reviewing his bloods under the microscope. We were moved to ICU around 2:30 in the morning. They gave me a mattress on the floor. By the time the team had finished everything that needed doing it was 4:30am. We got about an hour of sleep.

I stayed in the hospital the entire time Darren was in ICU. We were both in shock. I went into a focused mode, absorbing every medical detail I could, asking every question, needing to understand what was happening. The whole team gave us time and space for that. They were extraordinary.

At one point Darren told me I did not have to stay. I told him there was no way I was leaving.

We had gone in on Monday the 31st of March. His treatment started immediately on arrival. The chemo began on the 1st of April. April Fools Day. The universe has a sense of humour.

What followed was something we could not have navigated without the people who showed up for us, and they showed up in the most extraordinary ways.

My daughter Maegen drove up from Wodonga on the Tuesday to look after our frenchie Thunder and cook for us so we could both be at the hospital. Her husband James and our grandson Elijah flew up Good Friday. Darren’s mum and dad, Bill and Ann, and his sister Debbie flew from Adelaide on the Wednesday. His brother Stephen came from Melbourne. My mum came up for a couple of days too, and quietly got on with gardening while the world felt like it was spinning. Family mowed lawns and kept the house running for the entire two weeks without being asked.

Maegen ran around buying Dazz new boxers and shirts he could actually wear in hospital instead of gowns. She cooked chicken broth, stews, shepherd’s pie, the chicken boscaiola and risotto he was asking for. She managed her own business from up here the whole time. James worked from home. They just made it work.

One of the nurses, at the end of a 12 hour shift on around day four, appeared at the door of the room dragging a sofa bed chair. She looked at me and said, “We don’t sleep on the floor here, Robyn.” I could have cried.

Little Elijah would come in to see Dezz and Grammy and somehow that small, bright presence made everything feel a little more bearable.

One of the hardest calls, aside from telling Darren’s parents, was calling his son Lucas and daughter Elisa to tell them their dad had leukaemia. I suggested they come sooner rather than later. They came the very next day and have been back several times since.

There is something the doctors told us that I keep coming back to. Darren had a cruise contract coming up. He cancelled it. They told us that if he had gone, he would have died on the ship. That is how ill he already was. It is a confronting thing to sit with.

We have cried more times than I can count. When people arrive to visit, we cry. When they leave, we cry. We cannot always get back to everyone who has reached out, but please know this: every message, every call, every act of love has been felt deeply. You have held us up in ways you may not even realise.

Alison, Darren’s haematologist, said something in those early days that has become our compass. She called this a marathon, not a sprint.

She is not wrong.

We are 15 days in. There is a long road ahead and I am going to write about it here, honestly, and with whatever light I can find along the way.

If you are here, thank you for being here. It means everything.

Robyn x