Cancer- My Story

January 2019 I began experiencing light-headedness, fatigue, night sweats, laboured breathing and a swollen face.

At the time I was 31 years of age, and a full time commercial painter. I put my symptoms down to being low in iron as I am vegetarian, and being overworked. I had consulted my GP for various tests regarding my swelling, assuming that I may had been allergic to something. All tests returned no answers and I had been encouraged to seek a second opinion with another doctor.

This doctor ordered an ultra sound on my neck, and during this examination, there was a decision to give a CT scan to my chest and investigate further.

This is when I was told the news we never expect to be framed around ourself.

I had developed a 10cm clot in my neck, causing blood to not flow freely from my brain resulting in swelling of my face. Being so large, the clot was not normal and was found to be caused by a 10cm mass in my chest.

I went home, unsure of what this all meant. “Cancer, don’t you just cut it out and it’s all good?” “Cancer is what older people get” “ I’m healthy, this must just be a lump or something?”

I returned to work the next day, numb. I told a few people at work, who didn’t really understand what I was doing at work, and encouraged me to make some phone calls to find out what was happening.

I returned to my GP that afternoon after work to receive the official results from the scan. He then wrote me a letter explaining that I needed to be seen urgently and was directed to the emergency ward, due to trouble with breathing and fatigue.

My loving and supportive partner, Anna, drove me to the Royal Adelaide Hospital Emergency Department where I was immediately admitted.

After many discussions with various specialists, a biopsy was taken from my chest and confirmed that I had Hodgkins Lymphoma. I met with a coordinator who explained what the steps may be from here, options, and ensuring that my partner and I had all the support we needed.

I then met my Haematologist and Clinical Trials coordinator and was offered to be put on a clinical trial of chemotherapy.
This was a hard thing to contemplate and come to terms with. Looking back now after 3 years, it all seems a blur of momentum and drastic decisions. There was a lot to weigh up. Side effects were highly probable, chances of developing secondary cancers after chemo were seven-fold, infertility was to be accepted, and the desired effectiveness of the chemo and reaching remission was not guaranteed.

I accepted the offer to contribute to the research on the trial and after visiting the fertility clinic to freeze my last amount of frozen sperm, I began my first round of chemo. The day after Valentines Day- 14 days after diagnosis.

Treatment was quite regimented and routine. Day 1-4 was visiting the RAH for most of the day to receive the toxic chemicals designed to kill my white blood cells, healthy and unhealthy. I could return on day 8 for my final treatment for the round and go home feeling exhausted and depressed. Many family and loved ones accompanied me to treatment- Anna, my father, my mother in law, and my sisters.

Day 8 was significant as that was the day I would turn febrile neutropenic and admitted to Emergency once again. Like clockwork, around the same time after day 8 treatment I would be admitted to hospital where I would be administered anti-biotics and whatever else was needed to bounce back ready for my next round. Each stay was around 7 days. My time in hospital was monumental for comprehending what was happening to my body. Nurses always made sure I was looked after and many took time out to explain my blood work as I would compare to previous admissions.

Fast forward to round 4 and I was told the great news that I was in remission.
I did not know how to take this. I just got used to the fact that my time here is finite, and found peace in the fact that I am surrounded with people who love and support me, and appreciate the experience helping me understand what is most important in life.
I was fortunate that my employment was covered by a health insurance policy which ensured that I was paid as usual although I had exactly 9 months off work to have treatment.

Once remission was reached, insurance was not longer eligible, as was my previous position in the company.
I was forced to find employment with another company and start from the bottom again. This was not hard to find, although it was not as fulfilling as my last job, and the environment was not as enjoyable.

I worked for that company for one year before deciding to work for myself. I am currently self employed, and happier than ever making more money and working less hours with more flexibility.

The aftermath of cancer is that it is never that. It is always there. There is always a reminder of how different life is because of cancer. Be it the multiple unsuccessful IVF procedures, isolation, the effects of not working for so long, lost connections and friendships, worry of possible relapse, the list is endless.

One thing that I learnt from the experience is to know what is in your control, and to be easy on yourself. This is a constant lesson which I am yet to master but if is wasn’t for the experience of cancer, I wouldn’t ha e the reference point which I do today. My partner stood by me through the thick and thin and was dedicated to ensuring I was taken care of. I wasn’t to easiest person to deal with and I feel like during these times we the person closest to us cops the result of every emotion we share or withhold. The support is there for the patient, but I feel the family are dealing with more than anyone would ever understand.

I am forever grateful of the medical system and how seamless my treatment and hospital stays were. I thank the Leukaemia Foundation for transporting me to treatment and appointments when I could not drive and support networks they provided, as well as the Cancer Council.
All support was fortuitous in gaining clarity and understanding as well as feeling less isolated.

Thanks for reading my story.

Although in remission, our stories are never over.

—

Charles Nash