I am retired and was enjoying an extended overseas trip when, during occasional telephone conversations with my son, who was then 42 years old, he began telling me about serious pain in his lower back. He had been receiving physiotherapy, but it was not helping.
After several months and treatment by at least two different physiotherapists, I was shocked to hear that, following a scan, he had been admitted to hospital within 24 hours. He then remained there for an extended period while doctors worked towards a diagnosis. While I was making arrangements to return home, he told me that he had been diagnosed with a form of cancer called a sacral chordoma. I had no idea what chordoma was or what the prognosis might be. It was frightening.
Within days of returning to Australia, I accompanied my son to an appointment with radiation oncologist Dr Frank Saran. He was quite direct and told us that my son needed to begin radiation therapy as soon as possible because the tumour was growing much more quickly than would usually be expected.
We asked whether proton therapy, which we had read about online, would be a better option. He agreed that it would be preferable, but explained that it was not available in Australia and that, in my son’s case, there was not enough time to organise treatment overseas. A proton treatment centre had been planned for South Australia, and $102 million had been spent, but nothing had been achieved. It appeared that our public servants had been unable to manage such a large contract successfully.
We were given a date for radiation to begin and went home feeling hopeful that at least something was happening. Days passed, however, and we received no confirmation of the proposed treatment. After numerous phone calls and emails, we were advised that the oncologist we had seen had left the hospital and that no one appeared to know what was happening.
One “helpful” staff member told my son that his treating doctor would explain what was happening. My son pointed out that he no longer knew who his treating doctor was, which was precisely why he was calling.
By this stage, I was so frustrated, angry and frightened that I contacted a local radio station in an attempt to get help. There were many other issues that I have not addressed here, including my son being sent home after his initial hospital visit with a catheter but without any instructions at all about how to maintain it.
Apparently, politicians monitor talkback radio, and within a very short time things began to happen. Among other developments, a staff member from the Minister for Health’s office contacted us and asked for details of the problems my son had encountered so that something could be done.
We provided all the information requested and then waited for a response. After several months, my son sent emails and made phone calls but received no reply. Ultimately, I contacted the radio station again. Surprisingly, two weeks before a state election, we finally received a response. It appeared designed to protect many people who had not done their jobs properly and bore only a very loose relationship to the facts.
Since my son completed radiation therapy, our experience with the medical system has improved somewhat, but we continue to encounter many weaknesses.
Our only travel has been within Adelaide, so apart from basic issues such as parking and its extortionate cost, we have not faced the difficulties experienced by people who live outside major cities.
Any serious illness affecting a family member forces plans to change and creates an emotional response on many different levels. The two issues that affected me most were, firstly, my lack of knowledge and understanding of chordoma and not knowing where to seek help, and secondly, my dismay at the lack of effective systems and accountability within the health sector.
Having worked in manufacturing for most of my life, I have seen the results that can be achieved through the sensible use of well-designed systems. The health sector could benefit greatly from implementing better systems and holding people accountable when those systems are ignored.
My son has two children and is no longer able to work. Fortunately, his wife has reasonably secure employment, but the loss of his income will still have a major impact on their lives. There also appears to be very little advice available about how they should manage life in the future.
There are many questions we have still been unable to get answered:
- Why did the diagnosis take so long?
- What is the likelihood of recurrence once radiation has stopped the tumour’s growth?
- Are there ways to reduce or eliminate the tumour other than surgery?
- Is there any treatment or medication that can limit or prevent recurrence?
- Is this likely to affect other family members?
It is essential that people living with this disease are very active, and sometimes forceful, in seeking information. Do not rely on the system to look after you. There are undoubtedly many people of goodwill working within it, but the system has little meaningful organisation and very few people appear to be held accountable for their performance, or lack of it.
My son and I are both prepared to stand up for ourselves. However, someone who is not confident speaking in front of supposedly well-educated professionals, or who has limited English-language skills, could be at significant risk if they simply trust those professionals to look after their best interests.