Cassandra’s Story
Name: Cassandra
Gender: Female
Age: 47
Who is Cassandra?
Cassandra lives with her sister and a friend in Sydney, Australia. She describes her ethnic background as ‘New Zealander’: she was born in New Zealand while both of her parents were born in the United Kingdom. Her primary source of income is a social security benefit for people who are unemployed.* She describes feeling ‘elated’ when she found out that the old, interferon-based treatment had successfully cured her of hepatitis C.
Brief Outline:
Cassandra was diagnosed with hepatitis C in 1994. Concerns about the possible impact of the old, interferon-based medications on her work led her to postpone treatment for many years, but she decided to have it following encouragement from her doctor in 2009. She worked through the treatment, and was cured in the end, but experienced significant side effects during that time. For Cassandra, experiencing cure helped her realise that she ‘can do anything’.
Cassandra says her diagnosis was ‘quite frightening’, and ‘because [she] didn’t know much about [hep C]’ at the time, ‘it was almost like being given a death sentence’. However, ‘as the years went on’ she realised that her future wasn’t as dark as she initially thought.
Interferon-based treatments were the only available therapies for hepatitis C when Cassandra was diagnosed and for many years afterwards. Like many other people, she says concerns about treatment side effects made her decide not to have it: ‘I was working, and I didn’t really want to have to do the interferon treatment, because I knew that it was going to affect me physically as well as mentally.’ During this time, she thought of hepatitis C as a ‘slow […] thing that [she] didn’t really need to get rid of’, until a doctor encouraged her to have the treatment in 2009.
According to Cassandra, while she was concerned about the impact of treatment on her work, she felt that she ‘had no choice really’ but to continue working. Discussing what it was like to work while having treatment, she says that it was hard but it helped: ‘It helped me to know that I had something to do every day and not to think about what I was going through, you know, all the downs – not so much ups, there wasn’t many ups when I was on that program – so yeah, afterwards it helped me realise that I did do a good thing by working and [trying] to keep my job going.’
While working helped her complete treatment, Cassandra experienced several serious side effects. She describes her hair falling out, coughing, diarrhoea and what she describes as ‘mental aggression’. Thinking about what helped her through this period, she names two things: antidepressant medication and her supportive partner: ‘I remember I’d had the interferon on a Friday night and sometimes that would carry over to Saturday morning, and the aggression would come about, and he [partner] wouldn’t let me get away with being aggravated. I would just get in my car and go for a drive, put music on, you know, that would help me get through it.’
Cassandra’s treatment was successful, but she didn’t receive final confirmation of cure until about a year after she finished. She says she ‘can’t really remember’ what it was like waiting to get the final test but describes feeling ‘elated’ when the final news came through. Reflecting on her treatment experience, she says it helped her realise that she ‘can do anything’.
*Services Australia JobSeeker Payment.
Cassandra (F, 47, experience with old [interferon-based] treatment) remembers thinking it was a terminal illness when she was diagnosed in the early 1990s. As she learnt more about hepatitis C, she realised this wasn’t true.
It was [the early ’90s], I actually went on to a methadone program […] and we had to have a blood test done, and then that’s how I found out that I had hepatitis C […] I don’t think they [health professionals] knew much about it back then too, you know, yeah […] It was quite frightening […] Yeah, it was almost like, for me, because I didn’t know much about it, it was almost like being given a death sentence, if you know what I mean? You know, it’s almost like being told I am HIV positive back then, but as [the] years went on, realising it wasn’t [a death sentence] made it a lot better.
Cassandra (F, 47, experience with old [interferon-based] treatment) says that working helped her manage the side effects of the interferon-based treatment.
Well, I was working and I didn’t really want to have to do the interferon treatment, because I knew that it was going to affect me physically as well as mentally, but I am actually really glad that I did it while I was working, because it motivated me to work […] As I look back on it, like, I have talked to a few people and they said, ‘I don’t know how you worked during the treatment,’ and I sort of went, ‘Well, I had no choice really.’ Well, I did have a choice, but [working] helped me get through the treatment. It helped me to know that I had something to do every day and not to think about what I was going through […] Afterwards it helped me realise that I did do a good thing by working.
Cassandra (F, 47, experience with old [interferon-based] treatment) also discusses how helpful it is to have regular contact with a health professional during treatment.
I saw a doctor […and] he basically said I needed to just look at my health a bit more. [To begin with] I looked at it as more of a slow … a thing that I didn’t really need to get rid of, you know what I mean, yeah, until he explained to me [that hep C is] something that, you know, can kill you in the long run. [During treatment I was also seeing other health professionals] every week. I found it helpful, yeah, and even having to go and pick up medication every week was fine, you know. I was seeing someone, talking to someone if I had to, yeah, they were really good. That’s what you need while you do a treatment like that.