We pay tribute to the significant contribution Dr Ron Mendelsohn and Dr John Williams made through sharing their stories in this article written by Crispin Hull in the 2003-2004 Cancer Council ACT 28th Annual Report.
It was 1967. Carola Mendelsohn, a 24 year old woman, was working as a nurse at Canberra Hospital, then housed on Acton Peninsula. She discovered lumps in her breast. At first she tried to ignore them. In those days education about cancer and the advantages of early detection and treatment was poor – more so in Canberra which then was little bigger than a country town.
Carola was diagnosed with breast cancer. Again, Canberra’s size meant there was not much in the way of treatment or much in the way of more detailed diagnostics. Patients were faced with the Sydney or Melbourne option which meant separation from family. There were no support groups. There were few people to turn to for information. Moreover, Canberra was a place of young families. Most had moved to Canberra quite recently from elsewhere as the Federal Government moved to build the new capital. So health questions were dominated by children and young mothers. Obstetrics, gynaecology and paediatrics were seen as more important specialties than oncology.
Cancer was seen as a disease of the aged and at that time the ACT had the youngest population of any jurisdiction in Australia. It was something not to be talked about; a death sentence. That was true nationwide those days, but more so in youthful Canberra. It meant, of course, that things were more difficult for Canberra patients and their families.
Carola died of her cancer. Her father, Dr Ron Mendelsohn, an academic in the social sciences, was determined to do something.
“My wife and I realised – I am not exactly sure how – that there was no cancer society in Canberra,” he said in an interview. “So I began to conceive the idea of a cancer society. . . As so frequently happens people say ‘I would like to do something’. In a sense they like to try to appease their own grief in some way.”
He set to it with a passion and energy, marshalling whatever help he could get. “At that stage I was a Freemason and I used those colleagues in freemasonry who were prepared to help,” he said. “We gradually got others to help, too. I was able to get a constitution for the Society written by Professor Leslie Zines of the Australian National University Law School.
“Things went along, I think, rather limpingly. I was able to get a good deal through persistence, but the fact I was not a scientist and did not have a medical background I found to be a considerable handicap. I realised after a time that I wasn't really the perfect person to run such an organisation. Someone with greater prestige in a technical field was needed. The organisation was continuing, but it was limping quite a bit.”
Enter Dr John Williams. Williams came to Canberra in 1974 to take up the chair in biochemistry at the Australian National University. Before that he had been in the faculty of biochemistry at the School of Medicine at the University of New South Wales working on cancer, among other growth processes.
Williams was invited, along with virologist Peter Cooper of the John Curtin School of Medical Research to address the annual general meeting of the society in 1975. Cooper had applied for a small grant from the society. The aim was for them, as scientists, to explain to a lay audience the nature of cancer and the causes of human cancer.
Williams recalls: “To this day I have no idea how but I walked out of that meeting being elected chairman of that society and Peter was elected deputy. How on earth we got dobbed in and nominated and voted on I’ll never know because neither of us was very well known in Canberra at all.” Others suspect that the determination of Mendelsohn to get some scientific and medical expertise into the society had much to do with it.
Mendelsohn recalls: “John, of course, realised that the Society was limping. And the reason was because… up to that stage I had not been able to attract technical people - people who understood about cancer. I was a social scientist and I approach things from that point of view. I did not have the necessary background. When John came on he brought an entirely different attitude and ability. He understood far more. He had a good deal of personal strength and ability which he bought to the nascent society.”
Williams said, “Essentially we inherited the committee which Ron had assembled. It was a good committee.”
Among key people were Dr Edith Clements, a government medical officer, who advised cancer sufferers as to what they could expect if they went to either Sydney or Melbourne, if their treatment demanded that.
Canberra had some diagnostic facilities and facilities for the treatment of leukaemia and some chemotherapy. Canberra’s cancer treatment was quite sophisticated and well advanced, but with a small focus of specialisation. Dr Richard Pembrey, who specialised on diseases of the blood, including cancers, joined our committee.
Williams describes him as “a lovely man, quiet, a delight, effective. He formed the bridge we needed and with the medical specialties.”
Heather Wain was a social worker. Mendelsohn describes her as “a saintly person. She was extremely important in the community generally.” She knew a lot about the Canberra scene and was later president of the Australian Cancer Society. The ACT has provided two presidents to the national body. The other was John Williams.
Robyn McEwen was a pharmacist at Canberra Hospital and was very supportive and helpful. Gwen Leonard was appointed by Williams as the Society’s first secretary. Williams describes her as “much more than someone who just did the record keeping. She was part of the driving force.” Peter Cooper and George Hartnell, a Mason and school teacher, were the other key people.
The Constitution had been drawn up, but the Society could only function by raising money. And to raise money from the public it had to be incorporated. But to be incorporated would usually require legal fees.
Williams remembers the way around it: “Peter Cooper, bless him, had acted as his own lawyer in setting up the Society of Microbiology and so knew some of the tricks. He was able to put together the form of words and documents to get the approval of the Registrar. . . .
The Society had only $500 in the kitty. Clearly we had to raise some money well before we come to anything at all. But we also had to have some sort of ranking of what our primary aims were.”
In this, the ACT Cancer Society took a different path. In doing so it perhaps helped far more people than otherwise possible. They were radical for their time. Shortly before US President Richard Nixon had declared “a war on cancer.” He and others believed that if you threw enough money at it a cure would be found -- like tuberculosis or diphtheria. But cancer is a very different thing. The ACT Cancer Society was instrumental in changing public attitudes and perceptions about cancer.
Williams: “The first thing that struck us was to proceed with an education policy which could do something to make the general population of Canberra - a young population - aware of the incidence of cancer in the general population - 25 per cent.
It was 25 per cent then and it is 25 per cent now. What were the consequences of this? What were the varieties of diagnoses, prognoses and treatments?”
Mendelsohn: “When I began everyone was talking about cancer research. They did not understand the sort of money we could get together. The Society had to change its direction from doing something about cancer research to doing something about cancer education and cancer treatment. If the Society had attempted to concentrate on getting funds for research we would have got virtually nowhere. It would have been a drop in the ocean.”
In 1967, when Carola Mendelsohn was diagnosed, Canberra was smaller but had many similarities to Canberra today – leafy suburbs and a fairly affluent and well-educated population. But in one respect Canberra in 1967 was very different from today. It was a desert when it came to education and knowledge about cancer and its treatment. Then and in the ensuing decade or more there was - to use Williams’s deliberate pun - a deathly silence about cancer.
“Canberra was a young community then,” he says. “Young people do not need to think about cancer. Usually their only contact is if their aged parents get it and in the case of Canberra in the 1970s the vast majority of those aged parents did not live in the city. They were diagnosed and treated elsewhere. And it was the cultural climate of the time not to talk about cancer. People who had cancer were kept away from others. There was a deathly silence (pardon the pun) about the disease. There was undoubtedly a presumption of death. If you had a diagnosis purely and simply you would last anything from six weeks to five years at the most. That was also the view of a lot of medicos at the time.”
The doctors did their best, but there was little in the way of diagnostic or treatment facilities in the early 1970s in Canberra. People had to go to Sydney or Melbourne. The Society helped those people in many ways.
Ron Mendelsohn says: “It was a social organisation rather than a technical one although it was very well technically informed. The sorts of things that would be done, for example, were a wig library for people on chemotherapy who lost their hair. Anti-tobacco campaigns became extremely important for the Society. Then sunscreen, the campaigns against skin cancer were started and the Society began its shop, selling hats, suncream and sunglasses. The Society became a treatment, prevention and support group.”
“You had women, who had lost a breast, who were in danger of dying within a few years and they needed support. And then you have got children with cancer so we set up Canteen - more support.”
“The education front was largely handled by Elizabeth Skilbeck. She became the public face of the Society. She set up a tent at the Canberra Show, for example, which continues to run. There began to be a community awareness and a community organisation. It moved out into the community and became a community organisation.”
“Before Elizabeth, Pauline Marsh was the education officer. Elizabeth went into schools, she wrote articles in The Canberra Times and became the public face of the society. She was always available. She had the knowledge to talk quite sensibly to people who had just received a diagnosis and would add to whatever information their specialist had given them. But frequently the specialist would only spend a very short time with them. They would come out of the specialist consultation bewildered and dismayed and asking the question, What now? It was a critical time to intervene and help. And this is a large part of what happened.
“Sometimes they would get an idea of the next stage of treatment and the general practitioner was informed. But there it would stop. There was no additional information about what would happen if that treatment did not work. There was a pleading for plain ordinary human sympathy through to answers to specific questions on the basis of what if something happens, what would happen after that, because quite often the doctors do not tell you the next stage of treatment.”
“Women with breast-cancer were the largest numerical group. A diagnosis could affect her whole ethos her whole outlook on life. There is the fear and the loss.”
The initial Constitution had four main aims:
- Help alleviate suffering.
- Promote cancer treatment and diagnosis.
- Be involved in programs of research in cancer.
“We talked about the last but never with a point of view of funding much because it would be just a drop in the ocean,” Mendelsohn says.
There never was much in the way of government money in the early days, so the Society was in a pitiful financial position if it wanted to achieve its main aims: education and the alleviation of suffering.
But what the nascent society lacked in money it made up for in determination and passion and a huge response from the Canberra community.
“In no time at all we went from $500 to $10,000,” Mendelsohn said. “It helped that we had Major General Bob Hay join us as fundraiser. He was very well known and a man of great stature in the community. He had been Commandant of Royal Military College Duntroon. He just had that polish. He put together a plan to do a letter box drop in one area. When that produced quite a bit of money he did a general letterbox drop throughout Canberra. Then we started to get big bequests and gifs from families touched by cancer.”
The ACT Cancer Society, later to become The Cancer Council ACT, was on its way. The Society helped patients and their families. One of its early successes was getting a palliative radiation machine at Canberra Hospital in 1976. Before that patients had to go to Sydney. The large therapeutic machine came in 1981.
“The Society went for the smaller, palliative machine first,” Williams said. “Because if we had gone for the bigger machine there would have been all sorts of excuses not to get it and we wanted to make a start. We had to raise the money, we had to argue the issue with the Health Commission and I had to talk to the Legislative Assembly. It was such a profoundly large subvention to them and could have disturbed the main thrust of the money which was going to the hospital.”
Williams did the full cost-benefit analysis in an attempt to persuade them. “After a time I thought, blow this,” he said. “We have got the freedom as a society to publish the costings and reasoning so I published it in the Cancer Journal. The article outlined the case for having palliative radiation care in Canberra.”
The article and other persuasive work by society members did the job. But there was still much to do. Getting treatment hardware was just one task. Williams: “There was widespread ignorance in the community and a desperate need for education. The medicos weren’t educating, they were too busy. There was an immediate need for information under the general heading ‘The Causes of Human Cancer’. A recently diagnosed person needed to know this. It was more than just wearing a hat, or having the right diet, or taking exercise, or staying away from ionising radiation and so on. In the end I prepared a very large article on the causes of human cancer which became a 20 page booklet.”
“Elizabeth Skilbeck became education officer and she could use this in talking to patients and their families. She became better and better educated with her passion for this issue - cancer education and prevention- - she gathered of lot of volunteers around her and eventually she became a paid officer of the Society.”
The passion, dedication and hard work of the early members of the ACT Cancer Society laid the foundations for broad work done by The Cancer Council ACT today. The most important element in that work is not pouring money into research done far away, but direct help to cancer patients and their families in Canberra and district – providing knowledge and understanding of the disease and its treatment, support, sympathy and practical needs.
Prevention and educating people about early detection are other important elements of The Council’s work – work so presciently seen in the early days of the ACT Cancer Society.
By Crispin Hull