Linda is a Health Coach at Osara Health. Combining her personal experience as a cancer survivor and former participant on the program, Linda is most passionate about holding a safe space for us all to be real, to validate our experience and feel our voice is truly heard.
“I watched the team leave the room animated by the rarity of my diagnosis, while I was left alone, grappling with the gut-wrenching question—was I going to die?”
In Linda’s words…
It’s 2020 and I am in the prime of my life, confident, self assured and about to turn 60 at the end of the year. I had been plagued by recurring respiratory infections every winter in recent years, but had come to accept that as part of life, with my doctors supporting me through it. A new GP in town suggested I see a Hematologist because he thought he saw anomalies in my white cell count. After loads of tests, they couldn’t pinpoint the cause of the issue. The plan was to stay as well as possible, be monitored, and take one day at a time.
I was told “go and live your best life”.
So I did! I launched into my 60th birthday celebrations feeling incredibly good and healthy. Festivities were wonderful, followed by a lazy holiday from work and a trip planned to Europe and a family wedding to look forward to in the year ahead. Life felt amazing.
On my first day back at work in the new year 2021, I started feeling very unwell by lunchtime. By the next day, it had worsened significantly. I saw my GP on the way to work, who diagnosed me with lung infections, took some blood and sent me home with antibiotics. The following day, he called and said he suspected febrile neutropenia and advised me to go to the ED immediately.
At the local regional hospital, I was told I needed to be transferred to a city hospital because they didn’t have the facilities to treat me. I still recall that long lonely trip in the ambulance full of questions and fears, but almost no capacity to engage them as I quickly deteriorated, like an observer of myself.
I remember asking my husband, Bruce not to leave me that night, and he stayed, camping on the hospital floor.
The next few weeks were in isolation trying to treat infections, resolve dangerously low blood counts and discover why my immune system was so compromised. Those who love me speak of this hard uncertain time, bedside vigils and endless worry, my own memory is cloudy at best.
Eventually the answers came. I was alone when I got my diagnosis, a country woman in a city hospital bed many floors high. The team clearly felt good to have unraveled the mystery. They had cracked the clues and given me the answers and the plan. They showed me the elusive cells that had been hard to see in previous tests. The stalker robbing me of wellness had a name, Hairy Cell Leukemia (HCL), a very rare but treatable chronic blood cancer.
I felt their vibe of satisfaction and hopefulness and I felt I couldn’t allow myself to give voice to the feelings of confusion, defeat and fear that were bubbling up. Maybe I was a bit relieved too, I wanted to weep as a pit in my stomach opened up, but strangely I felt I had to be pleased and positive at their great work, to be that ‘good patient’, so I smiled when I actually felt lonely, sad and afraid and wanted to fall into someone’s arms and sob. I watched the team leave the room animated by the rarity of my diagnosis, while I was left alone, grappling with the gut wrenching question—was I going to die?
The plan for treatment was clear and to commence when I recovered from the infections and systemic impacts and gained some strength. The treatment brought a litany of symptoms to my feet, but mostly there were solutions: some side effects passing others will last a lifetime. It was hard and stressful and included more infections, hospital stays, tests and transfusions as I walked the tightrope between treatment and recovery.
Much of this I was prepared for although chemo/cancer fatigue was a shock, a kind of dense exhaustion that is unpredictable. I recall feeling so tired I couldn’t engage with anything like it might hurt to even speak. I rested my head on my husband’s chest and in all the fog I found his heartbeat, a rhythm that kept me present, that anchored me until I could go forward again. It often felt like that, treading water, locating the footholds, feeling my way.
The lack of appetite and aversion to food was unexpected indeed and the emotional overlay was a mixed bag of hope and despair and clutching at courage. Through it all I found ways to endure and thrive. Sometimes it felt like just dragging myself across a line, other times felt like more triumphant “yes I got this” moments.
Honestly, I think the chapter that was least talked about and I was least prepared for was post treatment, with words remission ringing in my ears, what we might call the survivorship space that no one had mentioned.
After a couple of months of isolation and environmental restrictions I recall being allowed to have a brief Easter Sunday lunch with family under strict precautions. A day later, my excited and wonderful Hematologist called to say my blood test results were normalising.
I was told again “go out and live your best life” but this time I had no idea what that actually looked like. The shift from isolation and fragility to being declared “good to go” was confronting. I googled the word “remission” repeatedly, trying to comprehend it and figure out how to live it and how long it might last. If I am honest at that stage I still had limited understanding of my diagnosis or long term prognosis, I had just focused on getting through each day and getting stable blood counts.
I was told I could return to normal life and work, yet I felt like a shadow of myself utterly unprepared and depleted trying to work out how to respond to my own and others’ expectations and unsure how long the good results would hold. My GP explained that I might be experiencing cancer-related trauma, needing time to adjust and with her encouragement I reluctantly began counseling. That moment of normalising the feelings and validating the experience was a turning point. I was reminded of my capacity and strengths, affirming that these struggles were part of the process. I was having a normal response to a massive life and health challenge.
As I gained insight and confidence to trust myself and my body again I also gathered information about HCL. I had to accept to some degree what was lost and grieve that, as I also started to imagine what the next steps looked like. I had to accept that financial plans and retirement plans had to change and I reimagined how and where I might work and stay well. I drew upon art, writing, collaging, meditation and journaling to bring clarification and insight and leaned into Occupational Rehab support to reframe my skills and options. There were leaps of faith, but I trusted myself to know what I wanted to take forward and what I wanted to step away from, clarifying my values and priorities and how to live them now.
I began piecing together a kind of survivorship plan, setting new targets for health and wellbeing, developing new habits and giving myself the time to process and reimagine my life, seeing myself as a well person. I often liken this phase to the transformation of a caterpillar into a butterfly. Just as nature provides the caterpillar with a cocoon to process and transform and build its wings, I needed a safe space to process and transform my experience into something new. I needed a holiday from expectation, time for my spirit to catch up. Do I still sometimes dance with anxiety, what ifs and why me? Is the week before my regular reviews a bit unsettled? Of course, but I also celebrate new insights and clarity and deep gratitude and mindfulness. My mantra the words of Walt Whitman:
“I am the poet of the Body and I am the poet of the Soul,
The pleasures of heaven are with me and the pains of hell are with me,
The first I graft and increase upon myself, the latter I translate into a new tongue”
Reflecting on my journey, I see how unprepared I was for my cancer diagnosis despite losing close family and friends to cancer and supporting loved ones at end of life and cancer patients as a Social Worker. No amount of past experience had prepared me for becoming the main character in my own cancer story.
Initially, I had to surrender to simply staying alive, but in survivorship, I learned to reflect, listen to my heart and body, and mobilise my strengths and trust myself and my voice again. I wouldn’t have asked for cancer and much of the experiences were rubbish truth be told, but much also has been transformative, and I now see the importance of giving myself grace and space to heal and discern what feels right for me.