Lymphoma: Challenges bring moments for growth and learning
Julie Allen was diagnosed with non-Hodgkin lymphoma in 2006. Here, she shares what the cancer taught her.
I have many roles in my life. I am a wife to a very supportive husband. I am a mother to three beautiful children. I am a physiotherapist with over fifteen years experience in both sports physiotherapy and chronic neck and back pain treatments. I was a physio for the Queensland netball team, the Firebirds, and traveled nationally and internationally with the Australian Hockeyroos, from Atlanta in 1996 until the Sydney 2000 Olympics.
I love yoga and meditation, I like reading and cooking, swimming and surfing.
Two new roles in my life are now cancer survivor and a cancer support person to my dad who is currently undergoing treatment. In the prior roles in my life, I had been intimately involved with planning, rehabilitation and outcome attainment, but my life at this point spiraled out of my control.
On September 14 2006, I was finally diagnosed with cancer after many benign symptoms had culminated into a condition that I knew was ominous. I was losing weight, I was unable to breathe freely, I could not complete a sentence without extreme shortness of breath and coughing fits, I could no longer lie flat, my nights in unremitting pain were spent in an upright position and I had profuse night sweats. I presented to my specialist appointment begging them to just find the source and give me a plan.
The Ear Nose Throat specialist who had to give me the news was wonderful. I give thanks everyday for his skills, empathy and insight into my needs. From the second he told me that it was cancer, he was acutely aware that my world had stopped, and that my brain had instantaneously shut down. He gave me a minute by minute plan of everything to get me through the next hour, including packing my bags, organising care for my children, contacting my husband who was away on a work assignment, collecting the various scans I needed from the radiology practice and getting myself to the Mater Hospital.
The oncologist took one look at my scans and immediately admitted me to hospital, for a three and a half week stay. This time was critical to give me a definitive diagnosis, appropriate treatment and hence hope for a future with my very young family.
Planning one hour at a time
Each person I met from that moment gave me a plan for the next hour, and so forth. I had lost the capacity to process any more. Slowly and surely, as hours and days progressed, my brain’s window could stretch to an hour, and then half a day, and then whole days. Even now, three years post treatment, a year ahead is a long way off. Having to make decisions regarding children’s schooling or future is very difficult to conceptualise or contemplate.
My diagnosis was Mediastinal B, non-Hodgkin lymphoma. My treatment was initially chemotherapy, a regime called MACOP-B with Mabthera. This was an intensive regime of chemotherapy, 2-3 days each week, including hospital stays for 3 months. This was followed by a stem cell harvest and radiotherapy. I am now three years post treatment and only just getting back to work due to resultant complications.
These past years have been a huge learning experience. I now understand that just as we are all unique individuals, each cancer and its treatment is different and each person’s response to their cancer diagnosis and treatment is very different.
Challenges always bring moments for growth and learning.
One of my specialists taught me that I was a fine example of A.I.E, I was perplexed as this acronym had not come up in medical jargon before. Overcoming my embarrassment at my ineptitude I enquired as to what this meant. He told me with glee that it meant “Attitude is everything” and was the reason why I had been able to avoid more procedures to reverse my chest problem as my body had started healing nicely on its own.
I learnt to enjoy every moment and I was able to reignite my faiths, in God, creation, human kindness and the power of positive thinking. I learnt to take more care with what I ate and which exercises I did. I drank lots of water. I took control of the little things in my life that I could control, and let the medical staff take over the rest. I didn’t google for information and I didn’t read a lot of books and brochures. I took faith in the staff, that they would provide me with the correct information that pertained to me when I needed it.
Again, I had to limit my inputs to that which was vital. We live in times where information is extensive and highly accessible, but also maybe not quite pertinent or correct. I am a firm believer that too much information is not always a good thing.
I have also learnt that to fight my cancer, I needed to face it as Julie. Not as someone’s mother, wife, daughter or sister. I attended my appointments and treatments on my own. My cancer was a gift that allowed me to really examine who I was and redefine my belief and values system. It didn’t mean that I neglected my responsibilities. It meant that for once, I let others, who wanted to help, pick up the slack. They allowed me the freedom to fight my demons and rise up to the many challenges that I was to face. I was very blessed to have such a wonderful and diverse support network. It was an amazing experience to see true human kindness at work.
Support also came in the most unexpected ways, hospital staff offering encouragement and friendship, kind thoughts and wishes from friends on the periphery, a meal network which continued for 18 months organised by three distinct and separate groups of friends, my parents taking my young family into their home so that they could provide some stability and be on hand when I was in hospital. I learnt that people truly wanted to help and I finally learnt to accept this with open arms.
The comradery that was ever present amongst patients in the hospital or in HOCA was amazing. I think that I met some of the most truly inspiring people. People who despite pain, illness, and a doubtful future, could rise up in any moment and completely change the tone or mood for a fellow patient or an entire roomful of people. I will never forget the chappie, who on a particularly bad day during my treatment, in the middle of a lolly eating frenzy, leaning across with a twinkle in his eye, and saying, “Excuse me missy, I don’t mean to alarm you, but I’ve heard that too many lollies could kill you!” The peels of laughter that emitted from the roomful of scarf-clad women and bald men was priceless. Needless to say I then readily shared my lollies around.
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If you would like to share your own personal story of living with your diagnosis and have it published here, get in touch with us.Last updated on June 19th, 2019
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.