LIVING WITH ACUTE LYMPHOBLASTIC LEUKAEMIA
“Just treat me as if I’m normal“
– Anna*, 23 years old
“I was diagnosed with Acute Lymphoblastic Leukaemia in 2010 just before I turned 14… I was tired all the time – I’d come home from school and sleep and was having a lot of leg pains.”
Anna* was hospitalised with abdominal pain as her bowel had shut down. Her white blood count was found to be abnormal and she had to get follow up blood tests. Two weeks later she had a bone marrow aspiration which confirmed Acute Lymphoblastic Leukaemia.
“We had cried so much whilst waiting that we were just numb”. Anna just had to go through the chemotherapy cycle and go ahead. As she hadn’t reached puberty at that time, future fertility wasn’t addressed. The first round of chemotherapy, then steroids, caused massive side effects. They had to stop the chemotherapy for a month or two as Anna’s bowel stopped working and she was in severe pain (thought to be from the steroids). It left her extremely anxious when she had to have steroids again.
The first lumbar puncture gave her very bad migraines probably because they had used an adult-sized needle. From then on they used a smaller children’s needle which reduced the migraines. Bone marrow aspiration was quite painful but she had to have it at regular intervals to see how the chemotherapy was working.
“it’s worse being 14 because you’re going to remember everything”
Anna, who is now 23, described how she was one of the oldest children in the children’s hospital but she appreciated the environment of the children’s ward as she enjoyed the distraction of the younger children and babies and the positive interaction with their parents and nurses.“ I always used to say to my oncologist, I feel so bad for these babies and what they are going through. He said to me, if anything, it’s worse being 14 years old because you’re going to remember everything.”
Being at the Sydney Children’s Hospital there was a Starlight Foundation room upstairs for entertainment and activities. There weren’t many teenagers, but she enjoyed interacting with those that were there as they shared a common experience. She found it difficult with her friends from home who thought she was an invalid.
Anna had a counsellor who she was close to, but Anna got frustrated at times because the counsellor hadn’t actually gone through a similar situation herself. Most of the nurses were great in terms of empathy and understanding especially as being a young teenager. Anna’s parents were very supportive. Only one parent was allowed to stay during the night so they would have a few days on, a few days off each but they had to be absent from work regularly plus be there for Anna’s two younger sisters (“I felt guilty about all the attention”) so it was all very stressful. The best thing that happened was a Make a Wish Foundation opportunity where the whole family went to America which was fantastic.
Once in remission, she felt that all the support dried up.
After two years of cyclical intravenous treatment, Anna was told that she was in remission but still had six months of oral therapy to complete her treatment. Once in remission, she felt that all the support dried up. “What do I do now? The hospital was my second home. I didn’t know what normal life was or what the long term side effects could be.” She had to see a psychologist when she panicked about a rash and threatened to give up future medical help. In her mind it was all endless…
Anna had missed virtually the whole of year nine and most of year 10 so it was quite a struggle to go back, socially (with low self-esteem) academically and to re-establish her life. “It is really hard for them (my friends) to understand, like so many of them ‘tippy-toed’ around me and it was so frustrating because I’m like, please just treat me as if I’m normal.”
“Please just treat me as if I’m normal”
What really helped was a “school visit of my mum and a home nurse to explain what leukaemia is, what I’m kind of going through and how they can support me through my journey as friends and why they won’t see me at school. It was a nice initiative that my mum did alongside my high school at the time, to put them into perspective.” After the completion of year 10, Anna went to TAFE to study early childhood as a future career. She feels that having Acute Lymphoblastic Leukaemia, being an older sister and attending the children’s hospital definitely formed the person that she is now – really passionate about children.
She has an annual major check-up where she sees a variety of specialists from endocrinology to fertility. She feels that co-ordinating all of her appointments is a struggle but has to go for ongoing issues. The chemotherapy “pretty much destroyed all my thyroid function… I’ve been married for a year and a half now – we’ve been trying for a baby and I feel terrible about my fertility issues”.
Looking back, Anna feels that her struggle with leukaemia has defined her and she feels very passionate about talking about childhood cancer to raise awareness.
*Names changed. Stock photo shown.