Australia
Surviving Survival
Oct 2000 44’50’’
Surviving Survival
Pioneering research aired on Four Corners shows that for many people, surviving cancer can be just the beginning of a process that is more difficult and more painful than the illness itself.
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Reporter: Wendy Page
Producer: Morag Ramsay
WENDY PAGE: One in three Australians will get cancer before the age of 74.
Every year, 75,000 new patients are diagnosed.
But today, nearly 60 per cent will survive.
PROFESSOR MILES LITTLE, SURVIVOR RESEARCH PROJECT, SYDNEY UNIVERSITY: There are a lot of survivors out there who are leading extraordinarily rich, maybe greatly enriched lives beyond what they were before.
But there are also a large number of survivors out there who are leading lives that are full of stress.
WENDY PAGE: Groundbreaking Australian research has revealed that for many people cancer survival comes at a devastating cost.
JANE CRUICKSHANK: I'd been through two experiences of cancer.
And the thought that my marriage wasn't going to survive after 30 years of a harmonious, loving relationship was just so wounding.
IAN CRUICKSHANK, JANE'S HUSBAND: You feel like you're some sort of monster or -- something that is crude and cruel and, you know, no compassion at all.
WENDY PAGE: Until now, nobody ever imagined that like survivors of war or natural disaster, cancer survivors may need help to recover from the trauma.
Tonight on Four Corners, we look at a hidden syndrome -- life after cancer.
REPORTER, 'FOUR CORNERS', 1967: While early diagnosis and prompt treatment makes most cancers curable, the word 'cancer' is a problem in itself.
DR EMERSON DAY, 'FOUR CORNERS', 1967: I'm a great believer that we as physicians make more mistakes by not using the word 'cancer', by disguising it, by erecting smokescreens between ourselves and the patient.
WENDY PAGE: Cancer was once an unmentionable disease.
It had such terrible connotations that patients were spared the knowledge of the nature of their illness.
It was -- and still is -- seen as a death sentence.
30 years ago, this Four Corners film attempted to get people to acknowledge the very existence of cancer.
REPORTER, 'FOUR CORNERS', 1967: Despite the accelerator's enormous power of some 4 million volts, radiotherapy is usually a lengthy process.
WENDY PAGE: But even back then, people were surviving cancer.
JOY SMITH, 'FOUR CORNERS', 1967: When I first came home from hospital, I had many sessions of dissolving into self-pity.
But I think this is a pretty normal reaction.
REPORTER: And what about yourself now?
Can you do everything that you did before?
JOY SMITH: I can do everything.
I can do the washing and handle two children and scrub the floors and dig the garden.
I've been doing all those things.
I tend the front garden myself.
WENDY PAGE: Many thousands of people are now beating cancer, thanks to advances in medical science.
But according to new research from Sydney University, victory over cancer is not the end of the journey.
In some cases, it's just the beginning of a much deeper struggle which may even be worse than the original diagnosis and treatment.
PROF. MILES LITTLE: That sounds extreme and it sounds exaggerated but it's a message that we've got over and over again.
People knew what to do when they were ill.
People knew what to do who were around the ill person.
But afterwards, no-one knows what to do and it's very dark.
WENDY PAGE: Four years ago, Professor Miles Little was one of Australia's most eminent surgeons.
He now heads up a centre which investigates values, ethics and the law in medicine at Sydney University.
He and his team of researchers are now doing pioneering research into cancer survival.
It's an issue which they stumbled onto by chance during a major research project into healthcare values.
PROF. MILES LITTLE: While we were doing the work on cancer patients, we noticed a number of common features in all their narratives.
And in particular, we were struck by the fact that survivors -- people who appeared to be free of cancer after the phase of diagnosis and treatment -- were a lot less happy than we would have anticipated that they would be.
I'm stressing that it's an existential state, not a pathology.
WENDY PAGE: Their findings, the culmination of a four-year research project, were a revelation and have attracted wide overseas interest.
The work has already been presented to the Mayo Clinic in the United States and to the recent World Congress on Psycho-oncology.
PROFESSOR STEWART DUNN, DEPT PSYCHOLOGICAL MEDICINE, SYDNEY UNIVERSITY: I've had lots of patients say to me that the time when they feel most abandoned, most lost, is when treatment has ceased.
They often talk about being given a pat on the back and a pat on the head and told, "You're done, you're finished, you're cured" -- although they won't often hear the words "You're cured" -- and then sent on their way.
And there's a strong sense of abandonment that they talk about.
WENDY PAGE: There is a common thread to survivors' stories.
Priorities change.
Relationships often disintegrate.
Some feel guilty for having survived when fellow patients didn't.
Workplace discrimination is not unusual.
Survivors live in fear of recurrence and they're saddled with the stigma.
PROF. MILES LITTLE: It's a very important issue because we're producing thousands of survivors each year in this country.
And every single one of those survivors has a circle of family, friends, intimates, work colleagues, all of whom are affected by this.
WENDY PAGE: Jane Cruickshank was a gregarious woman.
A former nurse, a strong and competent career woman, always in control.
She was the president of the local P & C.
In later years, she worked with her husband in his engineering business and travelled the world with him.
MARTIN FRENCH, JANE'S SON: I would describe her as a North Shore corporate wife.
Big dinner parties with lots of guests.
She'd be the life and soul of the party.
Nothing was too difficult for her.
WENDY PAGE: The house was paid for, her children were educated and leaving home.
Life was looking pretty rosy.
Then five years ago, Jane got cancer.
JANE CRUICKSHANK: Actually, I was getting dressed one morning and I just bumped against my breast on the left-hand side and I thought, "Oh, that was a funny sort of a pain."
I went off to the office and I was sitting in front of a computer later on and I suddenly felt a sort of pain shoot through my arm for no particular reason.
So when that happened and I had this sort of stabbing pain, I just automatically picked the phone up.
I didn't stop to think about it.
I just knew it was something I had to do.
IAN CRUICKSHANK: And we just didn't know what to say, we didn't know what to feel.
We just felt, "Oh, gosh, it's -- That's something awful. It's cancer, you know. We don't understand what it means other than sort of having this sort of feeling that it's something rather serious and possibly rather terminal."
And so it stopped us all in our tracks, obviously, and gave us a very bad shock.
WENDY PAGE: The next day, Jane's breast was removed.
The cancer had spread to the lymph nodes so they were also removed.
JANE CRUICKSHANK: I can remember getting dressed to go to theatre and as they're pushing the trolley along, I could remember the wheel.
I think I know every single turn that that trolley made on the way to the theatre.
And that was when I began to feel everything closing in around me.
I was terribly afraid of dying.
And I was afraid of no longer being attractive to my husband.
IAN CRUICKSHANK: She had lost her breast and it --
You know, there was this physical -- piece missing from her and a very important piece to her and I suppose to both of us.
And that was something that was very hard to cope with.
I know she couldn't cope with it early on at all.
JANE CRUICKSHANK: Soon after I came out of hospital, I think my husband, who loves me deeply, wanted to really show how much he cared for me and to engage in contact as we had done before.
But I found that I was backing away from it.
I couldn't cope with it.
And that made him feel rejected.
And I -- and to a certain extent, I was rejecting him because this difficulty had been created for me that wasn't there before.
IAN CRUICKSHANK: But it wasn't quite that.
It was something far deeper than that that was the problem.
And how to deal with --
how to handle that psychologically, we really didn't know.
I certainly have never been tutored in that or counselled in that or schooled in that.
I -- I just tried to do my best in a very sort of basic way and just muddle through.
JANE CRUICKSHANK: Right at the very beginning, there -- there --
..there was this crack beginning to appear in our relationship and it just started to expand from there.
WENDY PAGE: Jane couldn't forget what had happened to her.
She couldn't go back to her life as the capable career woman.
Her priorities had changed.
She wanted to retire and live every day as if it was her last.
But her husband Ian wasn't yet ready to leave his job and abandon his life.
Jane turned more and more to her daughter Amy.
Feeling her mental stability was at stake, Jane sought out a support group.
But it took her a long time to find one which understood her problems as a survivor.
JANE CRUICKSHANK: I think my husband found it quite challenging that I should find it necessary to go to the support group in the first place.
And it did create an even further distance between us.
IAN CRUICKSHANK: What gets thrown at you is that, "It's alright for you but you just don't understand what I've been through. You just simply don't understand."
And that -- that is quite divisive because it leaves you sort of out in the cold.
You feel like you're some sort of monster or something that is crude and cruel and, you know, no compassion at all.
JANE CRUICKSHANK: I was finding myself disengaged, even within my own social group.
I -- when I tried to talk to my friends about it or about my experience with cancer, they would say things like, "Oh, just give me the good news, Jane. When are you going back to work?"
And I found that very difficult.
I even have the feeling sometimes when I meet friends that, "Ah, you know, there's Jane with the cancer."
MARTIN FRENCH: There was a period of many months where she just wasn't herself at all.
She would do things that were just completely out of character, you know, and you would find it hard to actually maintain a -- in some circumstances, a good relationship with her, you know.
Ian, you know, would say, "I just want to get things back to normal."
Obviously, we would look at it and think, "Well, it's never going to be back to normal."
WENDY PAGE: Jane was haunted by the memory of her experience.
As for many cancer survivors, her life was one of regular CAT scans and follow-up tests.
Eventually, she was declared free of the cancer.
But she no longer trusted her body and feared that the cancer would get her again.
It did.
Three years on, she got bowel cancer, totally unrelated to her breast cancer.
She nearly died from the chemotherapy that followed.
IAN CRUICKSHANK: I think it then turns to a thought of a sort of selfish thought about, you know, "What am I going to do? It's going to affect me. She's going to die but I'm going to be left."
So it was a bit of a worry but I think probably a selfish sort of worry -- "What am I going to do?"
WENDY PAGE: Then she didn't die?
IAN CRUICKSHANK: No.
Thank goodness she didn't.
And she's -- she's doing well.
WENDY PAGE: Out here in central Australia, another couple are grappling with the aftermath of the disease.
Helen Perks was a schoolteacher in England.
Lured by images of the great Australian outback, she gave up her job to come to Australia in search of a life of excitement.
HELEN PERKS: I was seeking sort of adventure.
You know, I wanted sort of to see Australia and this was a great way of doing it.
I met the right person.
I mean, John was, you know, into that sort of thing.
WENDY PAGE: It was beyond her wildest expectations that she would meet and fall in love with a man like John Maraz, the ultimate adventure man.
John Maraz led wilderness expeditions to remote and dangerous places.
That was his job.
Fit and fearless, he spent his life climbing, mountaineering, trekking and whitewater rafting.
Seen here at Iguacu Falls, John was on a mission -- a five-week expedition exploring all the great waterways of South America.
For him, no adventure was too extreme.
But in 1998, his intrepid lifestyle ended abruptly the day he donated blood.
HELEN PERKS: John donated blood pretty regularly.
And he'd just been to donate some because we were actually planning to leave on a big trip back home to Europe to see my parents and we'd also sort of planned to go to Russia and through Nepal, you know, have a bit of an adventure on the way.
They said at the blood bank, "Oh, you know, your blood looks slightly odd."
So he went to the doctor that day because he'd booked to have his immunisations.
And luckily, he mentioned it before he had his jabs which he was due to have that day.
And his doctor sort of had the foresight to say, "OK, we'll do a complete, you know, blood check."
And the results were in at the end of the day.
And just at the bottom of the piece of paper that he showed us, it said acute myeloblastic leukaemia.
And that was sort of it.
It was a total bolt out of the blue.
I mean, we never expected it.
WENDY PAGE: Their trip was cancelled and chemotherapy began immediately.
Four days later, John became dangerously ill with a golden staph infection and septicaemia.
Many months in hospital and ultimately a stem cell transplant took a terrible toll.
After a year of treatment, he emerged in remission, frail and thin and with his strong physical identity in tatters.
He had lost 27 kilograms.
It's 18 months since his treatment finished but the trauma of the cancer experience has left John unsure where or how he fits in the world or what his new role in life should be.
For Helen, the man of her dreams is irrevocably changed.
Out here in Curtin Springs in central Australia, they are trying to pick up where they left off two and a half years ago but it's been a very difficult journey.
JOHN MARAZ: Losing my physicality was -- was terrible.
It was really upsetting for me.
You know, it's sort of like that constituted a lot of who I was, um, you know -- and made up mentally or partly also mentally who I was because, you know, I didn't have low self-esteem at all.
I had high self-esteem.
HELEN PERKS: He is a kind of a different person to the person I met.
And I don't really know what he's going to be doing with his life.
So there's that sort of tension there of not knowing the outcome.
So, you know, and I think, well, maybe it would be better for him to sort of meet someone now that he could relate to, you know.
WENDY PAGE: As this new person?
HELEN PERKS: Yeah, as this new person.
WENDY PAGE: John and Helen's relationship was severely strained.
Helen needed counselling to help her adjust to the dramatic change in John.
Eventually, they agreed to abandon everything and head to the wilderness once more.
They are on a quest to reconstruct his identity and to renegotiate their relationship.
HELEN PERKS: Certainly on the physical sort of side of things, we certainly had to reinvent that.
At one stage, I literally didn't recognise him.
I didn't think that he was the same person.
I thought, you know -- could he be the same person inside this sort of incredibly withered frame that he had?
I mean, when he was sort of physically not looking like John, I mean, I just -- I couldn't relate to him at all.
I had no sort of physical feelings for him whatsoever.
JOHN MARAZ: Yeah, well, I mean, I was more willing because I didn't have to look at me.
I mean, not that I'm that scary but, you know, because I had changed, particularly earlier when I was still a lot lighter.
I mean, I didn't even know if I was still sexually active, you know.
I mean, for six months.
You know, I sort of announced it with great pride that it was still a possibility.
You know.
HELEN PERKS: I mean, we hadn't had sex for two years.
And then suddenly, you know, we're expected to have a sort of a sex-life again.
And it just doesn't happen like that because you just, you know --
Your feelings for that person are just cut off.
Or you know, I was mothering him and looking after him and caring for him so you know, to suddenly sort of change from that to, you know, being in an intimate sort of physical relationship, that was really difficult.
So it's been a very slow process.
PROF. MILES LITTLE: We know, as a sick person, there are certain things you can't do.
But as a survivor, what's to say?
Survivors ought to be back to normal.
Or with the new insights they've got, they ought to be better than normal.
"You're telling me about your social problems, that your intimate relationships are breaking up. Well, that's bad luck. It's probably just a one-off."
People don't realise that this is a pattern.
IAN CRUICKSHANK: I felt in a way that we'd missed out on a bit of our lives together.
It had been put asunder.
She had been inflicted with something and I hadn't.
I think she was beginning to adjust her life but almost a life of being partly handicapped.
And I wasn't.
And you know, there is the difference then that creeps in between somebody who thinks they're handicapped and somebody who isn't handicapped who are man and wife and who have been man and wife for a long time.
I suppose it got to the stage where, I mean, from my point of view particularly, not really knowing how to cope with it, I suppose I just basically shut down.
Just go to your work, do things normally.
You know, pray to God it will come right.
You know.
Don't get emotional about it.
Don't lose control.
If you lose control, you'll just be a mess and you won't be able to cope.
But that's what goes through my psyche.
JANE CRUICKSHANK: It is a difficulty in a partnership because I don't think that my husband is seeing the Jane that he saw before.
I have had to change.
I am acutely aware of the possibility that my cancer may return and possibly a shortened lifespan.
And I behave and act accordingly.
PROF. STEWART DUNN: Your worst fear is that they can be taken from you.
So if the patient says, "Well, I am inevitably changed because of having this cancer," then your worst dream, your worst fears have been realised.
They have actually changed.
You can never have them back as they were before.
And it's almost a kind of realisation of that worst fear.
WENDY PAGE: Many relationships don't survive cancer.
John's only source of income was his job as a wilderness expedition leader.
He is not yet fit enough to do that again and he's not even sure he wants to.
Having come so close to death, he's no longer inclined to risk his life conquering mountains or shooting rapids in the Amazon.
This leaves Helen as the breadwinner.
HELEN PERKS: I suppose I felt incredibly pressurised to be the earner, to earn the wage and to support our relationship financially.
I mean, I sort of went through a stage of thinking, you know, he's in some sort of denial.
He doesn't want to go back to work.
And you know, maybe he doesn't want to sort of, you know, ever work again.
And that for me, you know, was sort of slightly worrying.
Um, because, you know, I felt that he had such a strong identity with his work before.
I wanted to sort of encourage it again.
JOHN MARAZ: It's too big a thing to happen in your life to sort of just suddenly blow away and think, "Oh, I hope it goes back to normal and I get my job again and she'll be right."
Because that's like, um -- looking at an opportunity of fulfilling your life more and then turning your back on it because, "Oh, gosh, I don't know what it is. I'd better go back to what I was."
And what I was wasn't bad, but it's not what I could be, which I'd like to think is going to be better.
CAROLE COGDON: I don't want to be told, "Get on with life and forget what you had."
Because you can't.
I don't want people just to brush aside this and think and have the attitude, "Well, be grateful -- you're alive.
There are people out there who are dead."
Because that's wrong.
That's -- they have no understanding of what it's like to -- to get to the other end and question, "Well, why? Why did I get to the other end? Why am I here?"
WENDY PAGE: Two years ago, Carole Cogdon was diagnosed with non-Hodgkin's lymphoma.
She has been 18 months in remission.
Survivorship has its problems for her too as she finds herself preoccupied with the bigger questions of life and death.
Just after she was diagnosed, her 29-year-old cousin died of a heart attack.
CAROLE COGDON: She didn't survive and I did.
That made me guilty and that -- That was -- I didn't cope really well with that.
Just -- but then I didn't feel like I could tell anyone either.
I couldn't express what I was feeling.
I couldn't try to explain.
WENDY PAGE: Why did you think that you couldn't tell anyone?
CAROLE COGDON: Because I just think that was selfish of me.
I just thought that was like, "I'm alive. I should be grateful I'm alive. I should be happy. Stop wallowing in the guilt. Stop, you know, feeling like this. Appreciate what people have done for you and the support, you know."
I didn't think people would understand that I was feeling the guilt.
PROF. MILES LITTLE: There's also another thing which tends to happen with survivors.
They get cast as heroes.
They must have had some special inner strength.
They must know some secrets about survival.
They're not necessarily heroes.
And they have been fortunate but they don't know who to pay back, as it were, how to be accountable for that fortune.
WENDY PAGE: Do they feel that debt?
Or does society or their family and friends expect that they owe a debt?
PROF. MILES LITTLE: All of the above, I think.
There are so many social expectations and we and cancer sufferers generally inherit those social expectations.
So that they feel, as it were, obliged to be paying back, to be living certain kinds of lives.
WENDY PAGE: For young women, surviving cancer brings other problems.
At a time in their lives when they are still seeking life partners, there is the possibility that they are infertile.
Some of them even undergo menopause after chemotherapy.
CAROLE COGDON: OK, I've had cancer.
I've had the chemo and I don't know whether I'm fertile or not.
I'm now at the stage where I don't tell everyone that I've got cancer.
EMMA SAYERS: I don't know.
I follow my instincts.
Some people, I just -- straightaway I wouldn't even consider.
WENDY PAGE: Forming new relationships is very difficult.
Their experience has matured them beyond their peers.
They also worry about the stigma of the disease.
EMMA SAYERS: It's not the kind of thing that, you know, you're having a drink and you go, "Well, hi. I've had cancer."
It's not something like that and it can be difficult.
And sometimes, I guess I worry that or feel scared that, um -- I won't find a person that can deal with that and will deal within the longer term and want to be with me.
Most of the time, I'm still kind of optimistic.
KAREN HOGG: You become insecure.
You're in a social setting when, once upon a time, you would have just been yourself.
You sort of sit back and think, "Well, if I get into this conversation and people get to know me, they're going to want to know about me. And do I want to tell them about my cancer? Do I want to share with them what I go through on a daily basis?"
WENDY PAGE: At the age of 29, Karen developed bowel cancer, which is most unusual for someone so young.
The cancer was treated successfully, but both her ovaries ruptured and had to be removed.
She got septicaemia twice.
Other post-operative complications left her with chronic pain which requires constant medication.
To add to her problems, she's struggling to hold onto her job as a music teacher.
KAREN HOGG: I was excited about returning to work, and suddenly I was faced with this dilemma that suddenly I felt I wasn't wanted back in the workplace, and instead, that my employers felt that it was better for me to take medical retirement.
I know that they thought that maybe I wouldn't be able to return to the duties I was doing before.
But despite that, it was important to me psychologically.
It was really important and it has become a really big issue.
WENDY PAGE: Workplace discrimination is a common problem for cancer survivors.
According to Karen, her employer, the NSW Education Department, has raised the issue of medical retirement on at least three occasions.
But at the age of just 33, that's the last thing she wants.
She could take action through the Anti-Discrimination Board, but she simply doesn't have the mental energy to fight while battling all the other problems that come with surviving cancer.
KAREN HOGG: Medical retirement wasn't going to offer me anything.
It didn't give me another career option.
It didn't give me stability.
It only made things financially more difficult.
And I had a home of my own, a mortgage, um -- bills to pay -- extensive medical bills to pay.
And, yeah, suddenly I thought I was going to be left unemployable.
WENDY PAGE: Karen's friend Emma Sayers, who was struck down by Hodgkin's disease just before her 21st birthday, is in a very different position.
While trying to come to terms with survival, she lost interest in her law degree.
And she says she was devastated when her long-term boyfriend left her.
She says he didn't understand the issues she was struggling with, and nor did her parents.
They all just wanted her to get over it.
EMMA SAYERS: It's almost like, "Well, if you're feeling it, Then you should know how to fix it. If you feel that way, then just stop feeling that way. Feel another way."
I so wanted to feel better, but I didn't know how to do it.
And being criticised for -- Or feeling -- I don't know whether I was being -- but feeling criticised for, kind of, in some sense, perhaps, wallowing in it rather than doing something about it just felt like another burden.
PROF. STEWART DUNN: The language that I heard when we first started exploring this area was -- we're talking about psychopathology, we're talking about anxiety, we're talking about depression in survivors.
And in fact it's not that at all.
It's -- it's -- it doesn't fit into pathological classifications or normal psychological classifications.
I guess a philosopher would call this an existential crisis.
It's "Who am I, how do I fit into the world now, given that all those things have been redefined?"
(To Emma Sayers) So we're going to imagine that this is your stage, the 'Emma' stage, and this is just a way to try and get a feel for what the experience you're having is.
WENDY PAGE: Because the issue of cancer survivorship has not, until now, been recognised and understood, survivors have had a great deal of difficulty communicating the nature of their problems to others.
PROF. STEWART DUNN: OK, now I'm just going to use this phone book -- to represent the cancer.
And this is cancer that was diagnosed in '95.
Where's the cancer now?
EMMA SAYERS: Where's the cancer? Um -- I guess it's kind of -- It's with me.
PROF. STEWART DUNN: OK. You hold it.
Paul, would you like to come and be 'Dad' just here?
WENDY PAGE: Professor Stewart Dunn and his colleague Paul Heinrich have found a way to get around the barrier by using drama therapy.
PROF. STEWART DUNN: What does Dad think about the cancer?
Is he comfortable with the cancer where it is?
EMMA SAYERS: I, um, I think both my parents would rather it was kind of -- completely away and not being able to be seen ever again.
PROF. STEWART DUNN: Now, turn to Dad and tell him about it.
Tell him why it's important for you to hold onto it.
EMMA SAYERS: It's important for me to hold onto it because I don't -- Because it's part of who I am, and I've changed it from what it was in '95 when it was just this terrible disease that was life-threatening into something else.
And I've worked really hard.
PROF. STEWART DUNN: When she looks at this phone book, she sees a book that is now quite different.
It's as if the pages inside the book are totally different.
And she said, "Cancer is no longer scary for me, but it's an experience that's been a huge part of my life. It now defines who I am."
When her father looks at the book, he sees the outside cover.
He thinks it's the same book.
And unless they talk about it, he's never going to know that it's no longer the same scary topic for her.
PAUL HEINRICH: And what was the value for you in doing it that way rather than, say, sitting down as we are now and just talking about it?
EMMA SAYERS: It's the clearest and most succinct way that I have ever looked at what has happened between '95 and 2000 in terms of where cancer fits into my life.
It's the clearest picture I've ever had of that, and I've ever been able to create for someone else from that in a short period of time.
PROF. MILES LITTLE: I'm not talking about creating a new medical speciality of 'survivalology'.
It's the last thing I'd want to do.
I do want people to understand that there are common problems that survivors face -- that simply talking about them to somebody who understands is therapy.
WENDY PAGE: Out here in the desert, Helen and John are managing their own therapy.
They're on a slow journey across Australia to Darwin before heading back to England to visit her parents.
HELEN PERKS: I was a bit reticent about giving up my job, but eventually I realised that, you know, to keep our relationship alive and working, I would have to take on board, you know, John's sort of wish to, sort of, have a bit of space and time.
JOHN MARAZ: Well, I kind of think it's a new slate.
And that's not a bad thing.
And, you know, I'll take pieces out of my old life as well, um, including my partner, if she's still keen, which, you know, we are, you know.
But you have to work -- we have to work at our relationship.
It just doesn't happen.
WENDY PAGE: Do you think you're ever going to be able to recreate what you had before in the whole relationship?
HELEN PERKS: I don't think so.
I think that -- I think that that's just -- it's gone, you know.
That part of our life has gone, it's changed.
And this is -- we have to look at this as something new, and we have to kind of look at it in a positive way.
Obviously, John's work will be something, maybe, completely new for him.
And, sort of, I know now that the best way to support him is for myself to be open to a new start as well.
PROF. MILES LITTLE: The end of successful treatment isn't the end of the story.
This doesn't happen to everybody.
Let me stress that.
There are a lot of survivors out there who are leading extraordinarily rich, maybe greatly enriched lives, beyond what they were before.
But there are also a large number of survivors out there who are leading lives that are full of stress.
And this is, unfortunately, normal.
And we can help them.
But that stress is a normal response to surviving cancer.
WENDY PAGE: Five months ago, Professor Little organised a survival workshop at the Cancer Council of NSW.
The workshop was the first of its kind.
It was an overwhelming success.
Survivors and their carers were astounded to learn that the problems they'd been facing were not unusual.
For two people who attended, the workshop could not have come at a more critical time.
Their marriage was on the rocks.
JANE CRUICKSHANK: We've nearly split up.
I went away for the weekend thinking that, "Well, unless I get some kind of response, I'm not going to carry on with this."
It was an extremely anxious time for me personally and I think now, it must've also been an anxious time for my husband.
And when he decided to come to the workshop with me, I was absolutely overjoyed.
IAN CRUICKSHANK: It showed me a lot of other people -- not old people, but middle-aged people, very young people -- all dealing with the same problem.
Trying to survive cancer.
So many more people were surviving, but they're all out wandering around, wondering what to do with their lives -- how to put their lives back together again.
WENDY PAGE: It must've been a pretty intense day.
IAN CRUICKSHANK: Oh, it was a very intense day.
I mean, I think we ended up in a restaurant down at Circular Quay, Jane and I, just going over the day's events.
I think -- we were down there for about two or three hours after eight hours at the workshop.
And that was something that hadn't happened for a long time.
JANE CRUICKSHANK: I think we held hands for the first time in years.
And it was an overwhelming experience for me personally.
And a terrific turning point in our relationship.
WENDY PAGE: At the height of Jane and Ian's problems, family tensions were such that a relaxed family dinner in a restaurant was out of the question.
The saddest thing for Jane and Ian was that their previously harmonious 30-year marriage was brought to the brink by an issue that was not of their making.
They were split asunder, not by Jane's cancer, but by the crisis that followed in the wake of her survival.
MARTIN FRENCH: I think it'd be the easiest thing in the world just to turn around and walk away -- very early on.
Looking back now, I think that if there was counselling or therapy available to the entire family, then I think it would definitely help.
Would've certainly helped Mum through some of the harder times that she had and possibly helped us all.
IAN CRUICKSHANK: When you've come, you know, a long way down the track and got married, travelled the world, had the kids, educated and brought them up, seen them off -- you don't want the whole thing to fall apart at that stage.
I mean, you've done all the hard yards.
I mean, you want somebody to retire with, somebody who'd be around at the end.
JANE CRUICKSHANK: It's been a huge journey for me.
But it is enlightening.
It is rewarding to be able to say that I have met this huge health crisis and I've survived.
And I'm pleased that I have.
I'm pleased with myself, for the way I've handled it.
And I'm grateful for the medical team that helped me to get here.
I'm grateful to my family for being with me.
I'm just happy to be here.
Surviving Survival
Oct 2000 44’50’’
Surviving Survival
Pioneering research aired on Four Corners shows that for many people, surviving cancer can be just the beginning of a process that is more difficult and more painful than the illness itself.
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Reporter: Wendy Page
Producer: Morag Ramsay
WENDY PAGE: One in three Australians will get cancer before the age of 74.
Every year, 75,000 new patients are diagnosed.
But today, nearly 60 per cent will survive.
PROFESSOR MILES LITTLE, SURVIVOR RESEARCH PROJECT, SYDNEY UNIVERSITY: There are a lot of survivors out there who are leading extraordinarily rich, maybe greatly enriched lives beyond what they were before.
But there are also a large number of survivors out there who are leading lives that are full of stress.
WENDY PAGE: Groundbreaking Australian research has revealed that for many people cancer survival comes at a devastating cost.
JANE CRUICKSHANK: I'd been through two experiences of cancer.
And the thought that my marriage wasn't going to survive after 30 years of a harmonious, loving relationship was just so wounding.
IAN CRUICKSHANK, JANE'S HUSBAND: You feel like you're some sort of monster or -- something that is crude and cruel and, you know, no compassion at all.
WENDY PAGE: Until now, nobody ever imagined that like survivors of war or natural disaster, cancer survivors may need help to recover from the trauma.
Tonight on Four Corners, we look at a hidden syndrome -- life after cancer.
REPORTER, 'FOUR CORNERS', 1967: While early diagnosis and prompt treatment makes most cancers curable, the word 'cancer' is a problem in itself.
DR EMERSON DAY, 'FOUR CORNERS', 1967: I'm a great believer that we as physicians make more mistakes by not using the word 'cancer', by disguising it, by erecting smokescreens between ourselves and the patient.
WENDY PAGE: Cancer was once an unmentionable disease.
It had such terrible connotations that patients were spared the knowledge of the nature of their illness.
It was -- and still is -- seen as a death sentence.
30 years ago, this Four Corners film attempted to get people to acknowledge the very existence of cancer.
REPORTER, 'FOUR CORNERS', 1967: Despite the accelerator's enormous power of some 4 million volts, radiotherapy is usually a lengthy process.
WENDY PAGE: But even back then, people were surviving cancer.
JOY SMITH, 'FOUR CORNERS', 1967: When I first came home from hospital, I had many sessions of dissolving into self-pity.
But I think this is a pretty normal reaction.
REPORTER: And what about yourself now?
Can you do everything that you did before?
JOY SMITH: I can do everything.
I can do the washing and handle two children and scrub the floors and dig the garden.
I've been doing all those things.
I tend the front garden myself.
WENDY PAGE: Many thousands of people are now beating cancer, thanks to advances in medical science.
But according to new research from Sydney University, victory over cancer is not the end of the journey.
In some cases, it's just the beginning of a much deeper struggle which may even be worse than the original diagnosis and treatment.
PROF. MILES LITTLE: That sounds extreme and it sounds exaggerated but it's a message that we've got over and over again.
People knew what to do when they were ill.
People knew what to do who were around the ill person.
But afterwards, no-one knows what to do and it's very dark.
WENDY PAGE: Four years ago, Professor Miles Little was one of Australia's most eminent surgeons.
He now heads up a centre which investigates values, ethics and the law in medicine at Sydney University.
He and his team of researchers are now doing pioneering research into cancer survival.
It's an issue which they stumbled onto by chance during a major research project into healthcare values.
PROF. MILES LITTLE: While we were doing the work on cancer patients, we noticed a number of common features in all their narratives.
And in particular, we were struck by the fact that survivors -- people who appeared to be free of cancer after the phase of diagnosis and treatment -- were a lot less happy than we would have anticipated that they would be.
I'm stressing that it's an existential state, not a pathology.
WENDY PAGE: Their findings, the culmination of a four-year research project, were a revelation and have attracted wide overseas interest.
The work has already been presented to the Mayo Clinic in the United States and to the recent World Congress on Psycho-oncology.
PROFESSOR STEWART DUNN, DEPT PSYCHOLOGICAL MEDICINE, SYDNEY UNIVERSITY: I've had lots of patients say to me that the time when they feel most abandoned, most lost, is when treatment has ceased.
They often talk about being given a pat on the back and a pat on the head and told, "You're done, you're finished, you're cured" -- although they won't often hear the words "You're cured" -- and then sent on their way.
And there's a strong sense of abandonment that they talk about.
WENDY PAGE: There is a common thread to survivors' stories.
Priorities change.
Relationships often disintegrate.
Some feel guilty for having survived when fellow patients didn't.
Workplace discrimination is not unusual.
Survivors live in fear of recurrence and they're saddled with the stigma.
PROF. MILES LITTLE: It's a very important issue because we're producing thousands of survivors each year in this country.
And every single one of those survivors has a circle of family, friends, intimates, work colleagues, all of whom are affected by this.
WENDY PAGE: Jane Cruickshank was a gregarious woman.
A former nurse, a strong and competent career woman, always in control.
She was the president of the local P & C.
In later years, she worked with her husband in his engineering business and travelled the world with him.
MARTIN FRENCH, JANE'S SON: I would describe her as a North Shore corporate wife.
Big dinner parties with lots of guests.
She'd be the life and soul of the party.
Nothing was too difficult for her.
WENDY PAGE: The house was paid for, her children were educated and leaving home.
Life was looking pretty rosy.
Then five years ago, Jane got cancer.
JANE CRUICKSHANK: Actually, I was getting dressed one morning and I just bumped against my breast on the left-hand side and I thought, "Oh, that was a funny sort of a pain."
I went off to the office and I was sitting in front of a computer later on and I suddenly felt a sort of pain shoot through my arm for no particular reason.
So when that happened and I had this sort of stabbing pain, I just automatically picked the phone up.
I didn't stop to think about it.
I just knew it was something I had to do.
IAN CRUICKSHANK: And we just didn't know what to say, we didn't know what to feel.
We just felt, "Oh, gosh, it's -- That's something awful. It's cancer, you know. We don't understand what it means other than sort of having this sort of feeling that it's something rather serious and possibly rather terminal."
And so it stopped us all in our tracks, obviously, and gave us a very bad shock.
WENDY PAGE: The next day, Jane's breast was removed.
The cancer had spread to the lymph nodes so they were also removed.
JANE CRUICKSHANK: I can remember getting dressed to go to theatre and as they're pushing the trolley along, I could remember the wheel.
I think I know every single turn that that trolley made on the way to the theatre.
And that was when I began to feel everything closing in around me.
I was terribly afraid of dying.
And I was afraid of no longer being attractive to my husband.
IAN CRUICKSHANK: She had lost her breast and it --
You know, there was this physical -- piece missing from her and a very important piece to her and I suppose to both of us.
And that was something that was very hard to cope with.
I know she couldn't cope with it early on at all.
JANE CRUICKSHANK: Soon after I came out of hospital, I think my husband, who loves me deeply, wanted to really show how much he cared for me and to engage in contact as we had done before.
But I found that I was backing away from it.
I couldn't cope with it.
And that made him feel rejected.
And I -- and to a certain extent, I was rejecting him because this difficulty had been created for me that wasn't there before.
IAN CRUICKSHANK: But it wasn't quite that.
It was something far deeper than that that was the problem.
And how to deal with --
how to handle that psychologically, we really didn't know.
I certainly have never been tutored in that or counselled in that or schooled in that.
I -- I just tried to do my best in a very sort of basic way and just muddle through.
JANE CRUICKSHANK: Right at the very beginning, there -- there --
..there was this crack beginning to appear in our relationship and it just started to expand from there.
WENDY PAGE: Jane couldn't forget what had happened to her.
She couldn't go back to her life as the capable career woman.
Her priorities had changed.
She wanted to retire and live every day as if it was her last.
But her husband Ian wasn't yet ready to leave his job and abandon his life.
Jane turned more and more to her daughter Amy.
Feeling her mental stability was at stake, Jane sought out a support group.
But it took her a long time to find one which understood her problems as a survivor.
JANE CRUICKSHANK: I think my husband found it quite challenging that I should find it necessary to go to the support group in the first place.
And it did create an even further distance between us.
IAN CRUICKSHANK: What gets thrown at you is that, "It's alright for you but you just don't understand what I've been through. You just simply don't understand."
And that -- that is quite divisive because it leaves you sort of out in the cold.
You feel like you're some sort of monster or something that is crude and cruel and, you know, no compassion at all.
JANE CRUICKSHANK: I was finding myself disengaged, even within my own social group.
I -- when I tried to talk to my friends about it or about my experience with cancer, they would say things like, "Oh, just give me the good news, Jane. When are you going back to work?"
And I found that very difficult.
I even have the feeling sometimes when I meet friends that, "Ah, you know, there's Jane with the cancer."
MARTIN FRENCH: There was a period of many months where she just wasn't herself at all.
She would do things that were just completely out of character, you know, and you would find it hard to actually maintain a -- in some circumstances, a good relationship with her, you know.
Ian, you know, would say, "I just want to get things back to normal."
Obviously, we would look at it and think, "Well, it's never going to be back to normal."
WENDY PAGE: Jane was haunted by the memory of her experience.
As for many cancer survivors, her life was one of regular CAT scans and follow-up tests.
Eventually, she was declared free of the cancer.
But she no longer trusted her body and feared that the cancer would get her again.
It did.
Three years on, she got bowel cancer, totally unrelated to her breast cancer.
She nearly died from the chemotherapy that followed.
IAN CRUICKSHANK: I think it then turns to a thought of a sort of selfish thought about, you know, "What am I going to do? It's going to affect me. She's going to die but I'm going to be left."
So it was a bit of a worry but I think probably a selfish sort of worry -- "What am I going to do?"
WENDY PAGE: Then she didn't die?
IAN CRUICKSHANK: No.
Thank goodness she didn't.
And she's -- she's doing well.
WENDY PAGE: Out here in central Australia, another couple are grappling with the aftermath of the disease.
Helen Perks was a schoolteacher in England.
Lured by images of the great Australian outback, she gave up her job to come to Australia in search of a life of excitement.
HELEN PERKS: I was seeking sort of adventure.
You know, I wanted sort of to see Australia and this was a great way of doing it.
I met the right person.
I mean, John was, you know, into that sort of thing.
WENDY PAGE: It was beyond her wildest expectations that she would meet and fall in love with a man like John Maraz, the ultimate adventure man.
John Maraz led wilderness expeditions to remote and dangerous places.
That was his job.
Fit and fearless, he spent his life climbing, mountaineering, trekking and whitewater rafting.
Seen here at Iguacu Falls, John was on a mission -- a five-week expedition exploring all the great waterways of South America.
For him, no adventure was too extreme.
But in 1998, his intrepid lifestyle ended abruptly the day he donated blood.
HELEN PERKS: John donated blood pretty regularly.
And he'd just been to donate some because we were actually planning to leave on a big trip back home to Europe to see my parents and we'd also sort of planned to go to Russia and through Nepal, you know, have a bit of an adventure on the way.
They said at the blood bank, "Oh, you know, your blood looks slightly odd."
So he went to the doctor that day because he'd booked to have his immunisations.
And luckily, he mentioned it before he had his jabs which he was due to have that day.
And his doctor sort of had the foresight to say, "OK, we'll do a complete, you know, blood check."
And the results were in at the end of the day.
And just at the bottom of the piece of paper that he showed us, it said acute myeloblastic leukaemia.
And that was sort of it.
It was a total bolt out of the blue.
I mean, we never expected it.
WENDY PAGE: Their trip was cancelled and chemotherapy began immediately.
Four days later, John became dangerously ill with a golden staph infection and septicaemia.
Many months in hospital and ultimately a stem cell transplant took a terrible toll.
After a year of treatment, he emerged in remission, frail and thin and with his strong physical identity in tatters.
He had lost 27 kilograms.
It's 18 months since his treatment finished but the trauma of the cancer experience has left John unsure where or how he fits in the world or what his new role in life should be.
For Helen, the man of her dreams is irrevocably changed.
Out here in Curtin Springs in central Australia, they are trying to pick up where they left off two and a half years ago but it's been a very difficult journey.
JOHN MARAZ: Losing my physicality was -- was terrible.
It was really upsetting for me.
You know, it's sort of like that constituted a lot of who I was, um, you know -- and made up mentally or partly also mentally who I was because, you know, I didn't have low self-esteem at all.
I had high self-esteem.
HELEN PERKS: He is a kind of a different person to the person I met.
And I don't really know what he's going to be doing with his life.
So there's that sort of tension there of not knowing the outcome.
So, you know, and I think, well, maybe it would be better for him to sort of meet someone now that he could relate to, you know.
WENDY PAGE: As this new person?
HELEN PERKS: Yeah, as this new person.
WENDY PAGE: John and Helen's relationship was severely strained.
Helen needed counselling to help her adjust to the dramatic change in John.
Eventually, they agreed to abandon everything and head to the wilderness once more.
They are on a quest to reconstruct his identity and to renegotiate their relationship.
HELEN PERKS: Certainly on the physical sort of side of things, we certainly had to reinvent that.
At one stage, I literally didn't recognise him.
I didn't think that he was the same person.
I thought, you know -- could he be the same person inside this sort of incredibly withered frame that he had?
I mean, when he was sort of physically not looking like John, I mean, I just -- I couldn't relate to him at all.
I had no sort of physical feelings for him whatsoever.
JOHN MARAZ: Yeah, well, I mean, I was more willing because I didn't have to look at me.
I mean, not that I'm that scary but, you know, because I had changed, particularly earlier when I was still a lot lighter.
I mean, I didn't even know if I was still sexually active, you know.
I mean, for six months.
You know, I sort of announced it with great pride that it was still a possibility.
You know.
HELEN PERKS: I mean, we hadn't had sex for two years.
And then suddenly, you know, we're expected to have a sort of a sex-life again.
And it just doesn't happen like that because you just, you know --
Your feelings for that person are just cut off.
Or you know, I was mothering him and looking after him and caring for him so you know, to suddenly sort of change from that to, you know, being in an intimate sort of physical relationship, that was really difficult.
So it's been a very slow process.
PROF. MILES LITTLE: We know, as a sick person, there are certain things you can't do.
But as a survivor, what's to say?
Survivors ought to be back to normal.
Or with the new insights they've got, they ought to be better than normal.
"You're telling me about your social problems, that your intimate relationships are breaking up. Well, that's bad luck. It's probably just a one-off."
People don't realise that this is a pattern.
IAN CRUICKSHANK: I felt in a way that we'd missed out on a bit of our lives together.
It had been put asunder.
She had been inflicted with something and I hadn't.
I think she was beginning to adjust her life but almost a life of being partly handicapped.
And I wasn't.
And you know, there is the difference then that creeps in between somebody who thinks they're handicapped and somebody who isn't handicapped who are man and wife and who have been man and wife for a long time.
I suppose it got to the stage where, I mean, from my point of view particularly, not really knowing how to cope with it, I suppose I just basically shut down.
Just go to your work, do things normally.
You know, pray to God it will come right.
You know.
Don't get emotional about it.
Don't lose control.
If you lose control, you'll just be a mess and you won't be able to cope.
But that's what goes through my psyche.
JANE CRUICKSHANK: It is a difficulty in a partnership because I don't think that my husband is seeing the Jane that he saw before.
I have had to change.
I am acutely aware of the possibility that my cancer may return and possibly a shortened lifespan.
And I behave and act accordingly.
PROF. STEWART DUNN: Your worst fear is that they can be taken from you.
So if the patient says, "Well, I am inevitably changed because of having this cancer," then your worst dream, your worst fears have been realised.
They have actually changed.
You can never have them back as they were before.
And it's almost a kind of realisation of that worst fear.
WENDY PAGE: Many relationships don't survive cancer.
John's only source of income was his job as a wilderness expedition leader.
He is not yet fit enough to do that again and he's not even sure he wants to.
Having come so close to death, he's no longer inclined to risk his life conquering mountains or shooting rapids in the Amazon.
This leaves Helen as the breadwinner.
HELEN PERKS: I suppose I felt incredibly pressurised to be the earner, to earn the wage and to support our relationship financially.
I mean, I sort of went through a stage of thinking, you know, he's in some sort of denial.
He doesn't want to go back to work.
And you know, maybe he doesn't want to sort of, you know, ever work again.
And that for me, you know, was sort of slightly worrying.
Um, because, you know, I felt that he had such a strong identity with his work before.
I wanted to sort of encourage it again.
JOHN MARAZ: It's too big a thing to happen in your life to sort of just suddenly blow away and think, "Oh, I hope it goes back to normal and I get my job again and she'll be right."
Because that's like, um -- looking at an opportunity of fulfilling your life more and then turning your back on it because, "Oh, gosh, I don't know what it is. I'd better go back to what I was."
And what I was wasn't bad, but it's not what I could be, which I'd like to think is going to be better.
CAROLE COGDON: I don't want to be told, "Get on with life and forget what you had."
Because you can't.
I don't want people just to brush aside this and think and have the attitude, "Well, be grateful -- you're alive.
There are people out there who are dead."
Because that's wrong.
That's -- they have no understanding of what it's like to -- to get to the other end and question, "Well, why? Why did I get to the other end? Why am I here?"
WENDY PAGE: Two years ago, Carole Cogdon was diagnosed with non-Hodgkin's lymphoma.
She has been 18 months in remission.
Survivorship has its problems for her too as she finds herself preoccupied with the bigger questions of life and death.
Just after she was diagnosed, her 29-year-old cousin died of a heart attack.
CAROLE COGDON: She didn't survive and I did.
That made me guilty and that -- That was -- I didn't cope really well with that.
Just -- but then I didn't feel like I could tell anyone either.
I couldn't express what I was feeling.
I couldn't try to explain.
WENDY PAGE: Why did you think that you couldn't tell anyone?
CAROLE COGDON: Because I just think that was selfish of me.
I just thought that was like, "I'm alive. I should be grateful I'm alive. I should be happy. Stop wallowing in the guilt. Stop, you know, feeling like this. Appreciate what people have done for you and the support, you know."
I didn't think people would understand that I was feeling the guilt.
PROF. MILES LITTLE: There's also another thing which tends to happen with survivors.
They get cast as heroes.
They must have had some special inner strength.
They must know some secrets about survival.
They're not necessarily heroes.
And they have been fortunate but they don't know who to pay back, as it were, how to be accountable for that fortune.
WENDY PAGE: Do they feel that debt?
Or does society or their family and friends expect that they owe a debt?
PROF. MILES LITTLE: All of the above, I think.
There are so many social expectations and we and cancer sufferers generally inherit those social expectations.
So that they feel, as it were, obliged to be paying back, to be living certain kinds of lives.
WENDY PAGE: For young women, surviving cancer brings other problems.
At a time in their lives when they are still seeking life partners, there is the possibility that they are infertile.
Some of them even undergo menopause after chemotherapy.
CAROLE COGDON: OK, I've had cancer.
I've had the chemo and I don't know whether I'm fertile or not.
I'm now at the stage where I don't tell everyone that I've got cancer.
EMMA SAYERS: I don't know.
I follow my instincts.
Some people, I just -- straightaway I wouldn't even consider.
WENDY PAGE: Forming new relationships is very difficult.
Their experience has matured them beyond their peers.
They also worry about the stigma of the disease.
EMMA SAYERS: It's not the kind of thing that, you know, you're having a drink and you go, "Well, hi. I've had cancer."
It's not something like that and it can be difficult.
And sometimes, I guess I worry that or feel scared that, um -- I won't find a person that can deal with that and will deal within the longer term and want to be with me.
Most of the time, I'm still kind of optimistic.
KAREN HOGG: You become insecure.
You're in a social setting when, once upon a time, you would have just been yourself.
You sort of sit back and think, "Well, if I get into this conversation and people get to know me, they're going to want to know about me. And do I want to tell them about my cancer? Do I want to share with them what I go through on a daily basis?"
WENDY PAGE: At the age of 29, Karen developed bowel cancer, which is most unusual for someone so young.
The cancer was treated successfully, but both her ovaries ruptured and had to be removed.
She got septicaemia twice.
Other post-operative complications left her with chronic pain which requires constant medication.
To add to her problems, she's struggling to hold onto her job as a music teacher.
KAREN HOGG: I was excited about returning to work, and suddenly I was faced with this dilemma that suddenly I felt I wasn't wanted back in the workplace, and instead, that my employers felt that it was better for me to take medical retirement.
I know that they thought that maybe I wouldn't be able to return to the duties I was doing before.
But despite that, it was important to me psychologically.
It was really important and it has become a really big issue.
WENDY PAGE: Workplace discrimination is a common problem for cancer survivors.
According to Karen, her employer, the NSW Education Department, has raised the issue of medical retirement on at least three occasions.
But at the age of just 33, that's the last thing she wants.
She could take action through the Anti-Discrimination Board, but she simply doesn't have the mental energy to fight while battling all the other problems that come with surviving cancer.
KAREN HOGG: Medical retirement wasn't going to offer me anything.
It didn't give me another career option.
It didn't give me stability.
It only made things financially more difficult.
And I had a home of my own, a mortgage, um -- bills to pay -- extensive medical bills to pay.
And, yeah, suddenly I thought I was going to be left unemployable.
WENDY PAGE: Karen's friend Emma Sayers, who was struck down by Hodgkin's disease just before her 21st birthday, is in a very different position.
While trying to come to terms with survival, she lost interest in her law degree.
And she says she was devastated when her long-term boyfriend left her.
She says he didn't understand the issues she was struggling with, and nor did her parents.
They all just wanted her to get over it.
EMMA SAYERS: It's almost like, "Well, if you're feeling it, Then you should know how to fix it. If you feel that way, then just stop feeling that way. Feel another way."
I so wanted to feel better, but I didn't know how to do it.
And being criticised for -- Or feeling -- I don't know whether I was being -- but feeling criticised for, kind of, in some sense, perhaps, wallowing in it rather than doing something about it just felt like another burden.
PROF. STEWART DUNN: The language that I heard when we first started exploring this area was -- we're talking about psychopathology, we're talking about anxiety, we're talking about depression in survivors.
And in fact it's not that at all.
It's -- it's -- it doesn't fit into pathological classifications or normal psychological classifications.
I guess a philosopher would call this an existential crisis.
It's "Who am I, how do I fit into the world now, given that all those things have been redefined?"
(To Emma Sayers) So we're going to imagine that this is your stage, the 'Emma' stage, and this is just a way to try and get a feel for what the experience you're having is.
WENDY PAGE: Because the issue of cancer survivorship has not, until now, been recognised and understood, survivors have had a great deal of difficulty communicating the nature of their problems to others.
PROF. STEWART DUNN: OK, now I'm just going to use this phone book -- to represent the cancer.
And this is cancer that was diagnosed in '95.
Where's the cancer now?
EMMA SAYERS: Where's the cancer? Um -- I guess it's kind of -- It's with me.
PROF. STEWART DUNN: OK. You hold it.
Paul, would you like to come and be 'Dad' just here?
WENDY PAGE: Professor Stewart Dunn and his colleague Paul Heinrich have found a way to get around the barrier by using drama therapy.
PROF. STEWART DUNN: What does Dad think about the cancer?
Is he comfortable with the cancer where it is?
EMMA SAYERS: I, um, I think both my parents would rather it was kind of -- completely away and not being able to be seen ever again.
PROF. STEWART DUNN: Now, turn to Dad and tell him about it.
Tell him why it's important for you to hold onto it.
EMMA SAYERS: It's important for me to hold onto it because I don't -- Because it's part of who I am, and I've changed it from what it was in '95 when it was just this terrible disease that was life-threatening into something else.
And I've worked really hard.
PROF. STEWART DUNN: When she looks at this phone book, she sees a book that is now quite different.
It's as if the pages inside the book are totally different.
And she said, "Cancer is no longer scary for me, but it's an experience that's been a huge part of my life. It now defines who I am."
When her father looks at the book, he sees the outside cover.
He thinks it's the same book.
And unless they talk about it, he's never going to know that it's no longer the same scary topic for her.
PAUL HEINRICH: And what was the value for you in doing it that way rather than, say, sitting down as we are now and just talking about it?
EMMA SAYERS: It's the clearest and most succinct way that I have ever looked at what has happened between '95 and 2000 in terms of where cancer fits into my life.
It's the clearest picture I've ever had of that, and I've ever been able to create for someone else from that in a short period of time.
PROF. MILES LITTLE: I'm not talking about creating a new medical speciality of 'survivalology'.
It's the last thing I'd want to do.
I do want people to understand that there are common problems that survivors face -- that simply talking about them to somebody who understands is therapy.
WENDY PAGE: Out here in the desert, Helen and John are managing their own therapy.
They're on a slow journey across Australia to Darwin before heading back to England to visit her parents.
HELEN PERKS: I was a bit reticent about giving up my job, but eventually I realised that, you know, to keep our relationship alive and working, I would have to take on board, you know, John's sort of wish to, sort of, have a bit of space and time.
JOHN MARAZ: Well, I kind of think it's a new slate.
And that's not a bad thing.
And, you know, I'll take pieces out of my old life as well, um, including my partner, if she's still keen, which, you know, we are, you know.
But you have to work -- we have to work at our relationship.
It just doesn't happen.
WENDY PAGE: Do you think you're ever going to be able to recreate what you had before in the whole relationship?
HELEN PERKS: I don't think so.
I think that -- I think that that's just -- it's gone, you know.
That part of our life has gone, it's changed.
And this is -- we have to look at this as something new, and we have to kind of look at it in a positive way.
Obviously, John's work will be something, maybe, completely new for him.
And, sort of, I know now that the best way to support him is for myself to be open to a new start as well.
PROF. MILES LITTLE: The end of successful treatment isn't the end of the story.
This doesn't happen to everybody.
Let me stress that.
There are a lot of survivors out there who are leading extraordinarily rich, maybe greatly enriched lives, beyond what they were before.
But there are also a large number of survivors out there who are leading lives that are full of stress.
And this is, unfortunately, normal.
And we can help them.
But that stress is a normal response to surviving cancer.
WENDY PAGE: Five months ago, Professor Little organised a survival workshop at the Cancer Council of NSW.
The workshop was the first of its kind.
It was an overwhelming success.
Survivors and their carers were astounded to learn that the problems they'd been facing were not unusual.
For two people who attended, the workshop could not have come at a more critical time.
Their marriage was on the rocks.
JANE CRUICKSHANK: We've nearly split up.
I went away for the weekend thinking that, "Well, unless I get some kind of response, I'm not going to carry on with this."
It was an extremely anxious time for me personally and I think now, it must've also been an anxious time for my husband.
And when he decided to come to the workshop with me, I was absolutely overjoyed.
IAN CRUICKSHANK: It showed me a lot of other people -- not old people, but middle-aged people, very young people -- all dealing with the same problem.
Trying to survive cancer.
So many more people were surviving, but they're all out wandering around, wondering what to do with their lives -- how to put their lives back together again.
WENDY PAGE: It must've been a pretty intense day.
IAN CRUICKSHANK: Oh, it was a very intense day.
I mean, I think we ended up in a restaurant down at Circular Quay, Jane and I, just going over the day's events.
I think -- we were down there for about two or three hours after eight hours at the workshop.
And that was something that hadn't happened for a long time.
JANE CRUICKSHANK: I think we held hands for the first time in years.
And it was an overwhelming experience for me personally.
And a terrific turning point in our relationship.
WENDY PAGE: At the height of Jane and Ian's problems, family tensions were such that a relaxed family dinner in a restaurant was out of the question.
The saddest thing for Jane and Ian was that their previously harmonious 30-year marriage was brought to the brink by an issue that was not of their making.
They were split asunder, not by Jane's cancer, but by the crisis that followed in the wake of her survival.
MARTIN FRENCH: I think it'd be the easiest thing in the world just to turn around and walk away -- very early on.
Looking back now, I think that if there was counselling or therapy available to the entire family, then I think it would definitely help.
Would've certainly helped Mum through some of the harder times that she had and possibly helped us all.
IAN CRUICKSHANK: When you've come, you know, a long way down the track and got married, travelled the world, had the kids, educated and brought them up, seen them off -- you don't want the whole thing to fall apart at that stage.
I mean, you've done all the hard yards.
I mean, you want somebody to retire with, somebody who'd be around at the end.
JANE CRUICKSHANK: It's been a huge journey for me.
But it is enlightening.
It is rewarding to be able to say that I have met this huge health crisis and I've survived.
And I'm pleased that I have.
I'm pleased with myself, for the way I've handled it.
And I'm grateful for the medical team that helped me to get here.
I'm grateful to my family for being with me.
I'm just happy to be here.