Do you need a break? From what?

It was exactly six months to the day from my last blog post that our lives changed in an earth-shattering way. The trauma has been enough to last a lifetime. Canberra was hit by a massive storm and our basement started flooding. Meanwhile, Steve was close to the end of his life. His cancer had progressed so far that he had a complete bowel obstruction and was unable to eat anything, therefore his ability to sustain his own life had diminished to nothing.

We had been travelling to Sydney every one to two weeks for our last attempt at keeping him around for a little longer. The clinical trial was supposed to stop the DNA of the cancer cells from replicating so quickly, but Steve’s cancer was far too rare and aggressive for it to cure him. I truly believe, however, that if he had not been on the trial, we would have lost him a lot earlier.

On the 20th of December, Steve underwent a CT scan to see the results of six weeks of trial drug administration and the bowel obstruction was found. I had been suspecting it for a few weeks because of his symptoms but he had refused to get it checked out and was at the stage of trial where he thought it was working and he was going to be cured. This was never the case, nor was it going to be the outcome of the treatment, but I’ve seen enough cancer patients in my time to know that it is a mindset that they get into at stages through their treatment.

I had wanted to take him to emergency the night of the 21st, but Steve was not going to hear about it. He had already decided that he was not going to sleep upstairs in bed with me as sleeping in the recliner was easier for his symptoms, but he spent all night up vomiting and could not keep any painkillers down. By that stage, the cancer had spread to several bones, including his hips, his vertebrae, his shoulder blade, and a spot in his skull. The pain would have been massive and he was not having fun in life but he was stubborn and refused to consider that life would be better if he sought help.

The next morning, he finally gave up and requested I pack a bag for him. He remained in hospital with a tube down his nose from the 22nd of December through the Christmas period and came home for three nights of home-based palliative care in January.

When Steve was in hospital, I would sit with him every day, often several times a day between going home and doing his laundry and fetching him fresh clothes. I would shower him at the hospital, and before he came home, I was taught how to drain his nasal-gastric tube. The tube had been inserted as he could not process any food or drink in the normal way with the abdominal cancer blocking the pathway between the bottom of the stomach and the intestines. The tube was to release pressure and discomfort from the blockage and it had to be aspirated or drained every four hours.

When he came home, I was also taught how to administer breakthrough pain relief through a subcutaneous needle into his tummy area. It was all quite scientific and medical, and I became Steve’s 24/7 nurse during that time.

The fateful night of the 11th of January had seen Steve get sicker that day. He was coughing a lot. He did have the nasal-gastric tube in when he came home but a nurse had reinserted it on day two at home and we discovered it had gone into his lungs instead of his stomach. When he was in hospital, they would take him for an X-ray every time he had the tube inserted so that they could make sure it was in place properly, but that was not possible to do from a home base.

Steve requested that the tube was removed permanently because it was annoying and he had started coughing a lot after the removal. Day three saw him cough up a lot of phlegm and by the time the storm came, he was in respiratory sepsis (aka a chest infection).

The Hospital in the Home team nurses were coming twice a day and the palliative care nurses were coming once a day to visit during those three days. I had palliative care arranged for that Saturday morning and my daughter and I went out to a knitting circle whilst our favourite support worker came over to look after Steve and clean our house.

When we got home from knitting, the support worker said that Steve had been ok and he’d just come in from a smoke break. I joked that he had gone outside to have a break from being sick. That was the last time we saw our support worker and the last time our support worker saw Steve alive.

The storm came and I had to turn off the power to the house at the mains as the basement started having water inundate it with all sorts of electrical things such as stoves and TVs etc. I lit candles upstairs (thank goodness for all the candles I’ve received for Mother’s Day over the years) and the Home in the Hospital nurses came over to do their routine check of Steve. Because the power was off, the hospital bed would not work without electricity so we decided to call an ambulance to transport him to the cancer ward at hospital.

The ambulance officers attended but did vital sign readings on Steve and discovered he had a fever and needed to go in through emergency. Because of the flooding, we had called the SES but the fire brigade attended instead because of the number of callouts the SES had received that night and it took four firemen to lift Steve out of the house and into the ambulance. We were honestly blessed that they were there.

Once we all arrived at hospital, we made the decision to go with morphine instead of antibiotics. Steve was far too sick to prolong his suffering. We chose comfort care instead. It would have only bought him another week or two of life and that wouldn’t have been a very good life at all.

Without power at home, the five kids and I stayed at the hospital overnight. Three slept in the patient lounge, and two kids and I took it in turns to grab a nap on the bench or be by Steve’s side. I prayed more that night than I think I have ever prayed in my life. I held his hand and I asked God to stop him from suffering. He’d been through enough.

We had been told in emergency it would take two to three days for his body to give up but Steve left earth at 1:46am on the 12th of January 2025, the very next day. It was eerily quick and left us in shock. I suppose it made us realise just how deeply sick he had been. We would like to believe he is up in heaven now with all our lost loved ones, enjoying a loving reunion.

There have been other traumas afterwards but the funeral was a fitting tribute to the amazing man he was. We packed the church to the rafters and he was farewelled in style.

So do I need a break? Oh, absolutely!

I had planned to run away before I returned to work this week but needed to stay instead. I did go for a drive but realised it was far too painful to travel at this stage without Steve beside me in the car. I don’t honestly think I should be left alone with my own thoughts at this stage without what Steve used to be for me. He was my all and my everything. We would talk about anything that popped into our minds and have deep and meaningful discussions about important and silly topics alike.

I don’t have that now in my life. I am a young widow and it’s completely unfair to have to go through. I don’t want to be alone but I am coming to the realisation that I will probably never again find what I had with Steve. It all hurts and it makes me question my own sanity. I know that grief is a normal experience through the loss of a husband but it is a mighty uncomfortable one.

I’m awake at 2am finishing off this script. I think I will have to take some time off tomorrow for me. I have a counselling appointment but maybe I actually need to take that break and disconnect from life. I will return to blogging as it’s my favourite way to process life but I just couldn’t bring myself to write during the last six months of Steve’s life.

The caring role was far too labour-some and it got to a stage where I felt no one really knew what to say. I’ve had a lot of friends rally around me after Steve passed away but sometimes I feel angry that they weren’t there when he was alive. None of it feels fair.

I will go to see Steve tomorrow at the cemetery and have a moment to talk to him. I don’t feel his presence right now. Everyone says he will be with me or he will be watching over me but I just feel desperately alone and I don’t feel him anywhere around. He is just gone.

My love with Steve was a once in a lifetime fairytale type of love. It was unconditional, full of trust and hope, and always full of deep care and love.

I will continue to process this over the coming months and years but for now, I will leave you with this quote:

“They that love beyond the world cannot be separated by it. Death cannot kill what never dies”

William Penn

Until tomorrow, KT18Ø.