Ramblings of a Cancer Caregiver

The Start of My Journey From Grieving to Thriving

What is it like to lose the love of your life to cancer? These are some heartbreakingly honest situations, thoughts, and moments I experienced towards the end of my husband's cancer journey in 2021.

It has taken me a long time to be ready to publish these ramblings—for the longest time, they felt too raw. The journey was far more nuanced than this, and I'm sure I will write that story one day.

But for those who might be in this phase of things, I have one thing to say -

Show your love for your person. Rise above your feelings of fear and devastation so that they know your love for them in those last moments of life. You can come back to your healing sometime later.

At times, the loneliness is crushing. My love lies beside me, so close yet far away, lost to me as the fight for life is all-consuming.

His weight loss is down to the bone, and he can't get comfortable. Bones protrude from his wasted body and graze the mattress painfully.

Chemo destroys his sight, hearing and all quality of life.

The pain meds impair his cognition and make him sleepy and confused, so there is no life.

Daily life is a constant whirl of medications, vital checks, eating attempts, comfort ministerings, nurse visits and doctor and hospital appointments.

Some days, we hide from the world, close the shutters and contemplate running away. But there is no running from this monster.

We lie in bed together in the darkness. My love was exhausted by the disease, and I was exhausted by my fight for his life.

I lean across to my sick husband to ask if he needs anything, and he whispers, because that's all he's capable of doing right now, "Your hair smells lovely. I miss you".

His words reduce me to quiet tears. I sob into my pillow, not wanting him to witness my distress.

The chemo and the waiting process for efficacy results, hoping for positive progress, is complex and stressful.

When we hear the Oncologist say, "The tumours have grown", and the words palliative care, the world stops turning. My stomach drops, and I think I will vomit or faint. Of course, he doesn't hear.

I lean across, make eye contact with him and explain the situation. Our eyes fill with tears, and we clutch each other's hands.

There is Hope...

But, there is a clinical trial.

Our last hope, maybe a clinical trial, is a hiatus to make memories, reconnect, and love. It's not a cure or a path to remission, but hopes for an improved quality of life.

Alas, from day one, there has been no improvement; the pain, fatigue and confusion are worse. It will take time.

But it doesn't; I think, "How long can we go on like this?"

People around me keep saying, "You're doing so well,"" You're so strong and brave." NO, I'M NOT. I WANT TO SCREAM.

But, I am grateful each day for the meal delivered to the door, the bag of homegrown vegetables left hanging on my front door, and the emotional support from my tribe and my K9 loves.

No two days are the same in this cancer journey. There are good days and bad, but mostly bad, so making plans is impossible. But I don't care. All I want is to have my darling well again.

After each crisis, we rationalise the daily effects of this disease and find ourselves excusing them as consequences of the event. Still, it is the disease spreading its insidious tentacles.

Every hospitalisation for possible infection is torture—the isolation caused by COVID-19 compounds our feelings and fears.

After the last hospitalisation, I felt a shift. I sense my B questioning - is this my life for the future? Am I just hanging on? Is it worth the struggle, the pain?

Those days when a crisis strikes, I hang on by a thread. Infections and sepsis are a daily concern.

I implemented a half-hourly regime to monitor his temperature, with instructions to call emergency services if it reaches 39.

The anxiety is debilitating, raging like a lion inside. I can't erase it, but I know the feeling will pass with time. Maybe tomorrow will be better. Or, perhaps, it will be worse.

I knew the end was coming, and I started researching hospice care and end-of-life on Instagram. I visit my Doctor for confirmation and advice.

Morphine robs him of cognition and clear thinking, and as we near the end, when all hope is gone, I pray he will stay in this state and not have to face the reality of what is to come.

The treatment robs me of my darling and turns him into an angry, ugly man. My heart breaks a little more each day.

I miss my loving, funny, caring, cheerful husband.

I pray for this to be over soon for both of our sakes.

But then there is reality.

But the reality is that when it is over, when your beloved person is no longer in pain, your pain begins.

My beloved B died on the 21st of December, 2021. This letter to my dead husband gives you a glimpse into those last days and the unjustness of it all. If you are reading this because you are the carer of a loved one on their cancer journey, here are the lessons I learned which may help you through your journey:

• Don't lose yourself being the carer; make time to be the partner, the lover, the friend

• Prepare for the worst, hope for the best

• Surround yourself with a support system that you can call on at a moment's notice

• Ask for help

• Understand that the end is not the relief you may be hoping for but the beginning of a new journey, grieving your loss and finding the new you.