A CONVERSATION WITH KAREN McMILLAN
CANCER. THE ‘BIG C’. The dreaded condition that will touch the lives of a third of us. Just today, for example, some 60 Kiwis will hear the words, “You have cancer!” Yet it’s a condition we’re often uneasy talking about, even mentioning. The ‘elephant in the room’, if ever there was!
However, there’s one Kiwi who’s more than willing to talk about cancer. She’s noted New Zealand author Karen McMillan, herself a survivor of breast cancer, and she believes passionately that cancer is worth discussing. Why? Because by sharing our stories, our insights – even our prayers – we can do a lot to reduce the fear-factor, and improve the lives of those living with cancer, along with their loved-ones.
Karen has recently republished her book, Unbreakable Spirit– interviews with people who have (or have had) cancer, plus medical professionals at the cancer coal-face. And the title says it all.
“Did you say RE-published?” we hear you ask.
That’s right. Karen first wrote the book a decade ago, and it’s been an inspiring steady-seller ever since. But now Karen’s revisited the subject, to see how the original 25 interviewees got on, and she’s added five more. These are poignant stories of ordinary people – at times reaching extraordinary heights of courage and wisdom.
We visited Karen recently, and asked what made her author a book on the unmentionable ‘Big C’ …
KAREN: Funny isn’t it. I never intended to write about cancer – it’s a pretty heavy subject, as you say. Both my parents died relatively young of cancer. That threw me into contact with my local hospice, and I ended up working there as a volunteer. I saw it as a way of giving something back – because they were so wonderful when I was caring for my mum and dad. (I still act as a hospice volunteer.)
My job was to write articles that promoted the hospice’s work. Usually, I interviewed the terminally ill – or someone who’d just lost a loved one. However, on one occasion they sent me to interview the famous American author, Mitch Albom (he’s best known as the author of Tuesdays with Morrie). He got really interested in my connection with hospice – I was quite young to be volunteering for this. And I told him a bit about my parents. He turned to me and said (thick American drawl), “Girrrl – you gotta book therrrre!”
So, this famous guy telling me I “had a book there” obviously planted a seed. I thought about it – did a bit of research. I found plenty of medical books on cancer, lots of diet books (which I don’t think are particularly helpful) and some celebrity books. But nothing that helped ordinary people facing cancer or told how others coped – what it’s like, what you should expect, the emotional and spiritual ramifications. That’s what decided me.
The original book, which I published 12 years ago, was 25 stories. And now – revisited – it’s 30.
GRAPEVINE: Cancer used be a topic like death – one we never talk about. Is that changing?
KAREN: Definitely. I’ve noticed it even in the years since I first wrote the book. When my dad first had cancer, people really didn’t talk about it. But when Mum was ill it was a bit more open. Today, they’re much more open. Someone with cancer is more likely these days to tell friends that they’re going through a cancer battle. They’ll talk about it in social media, where once they might’ve tried to keep it all quiet.
However, because people are talking about it more now, it’s easy to think there’s more cancer around. But actually there’s not. In fact, cancer rates have gone down.
GV: Not everybody you included in the original book was cured or had a happy-ever-after ending, did they?
KAREN: That was really important. It’d be very unrealistic to write about people’s battles with cancer and have everyone survive. That’s just not the reality. I tried to be honest and real. So the interviewees are, as much as possible, a random cross-section of society. Between all their different experiences you’ve got as many outcomes, treatments and reactions as possible. I spoke to a lot of people who were terminally ill and those who’d lost loved ones to cancer. That’s the reality – it’s what happens. Not everyone is as lucky as I was.
GV: So who did you select? And what did you want to achieve?
KAREN: I was trying to help any family that’s facing cancer. As a reader, I believe knowledge is power. I think if you can read about people’s real, gritty experiences, you’ll catch stories that’ll resonate. Readers will hopefully say, “Oh, that strongly reminds me of my family and what we’re going through. I like the way they’re dealing with it. I like the strategies they’re putting in place. I might try that myself.”
And, in fact, when I had my own cancer battle, one of these stories really resonated with me … Ainslie’s. She’d had breast cancer, like me, in her 40s. And, again like me, she had a really positive, loving husband supporting her. I liked the way she included her family and friends. I liked the sense of humour she brought to everything – even her struggles. I liked her positivity … the way she approached and handled everything. I wanted to handle the same issues the same way, myself.
GV: So Ainslie was an inspiration for how you could live with what happened?
KAREN: Yes. For me. For other people, it might be somebody else’s story that resonates. We’re all very different. And that’s the thing with cancer – it’s not an A, B, C experience – it’s unique. Everyone deals with it their own way.
GV: What do you mean by that exactly? Isn’t it simply an illness, and you either get better after a lot of intervention (some of which is really horrible) – or you die? What makes different people’s experiences ‘different’?
KAREN: Well, it’s interesting. I had breast cancer – and I was having my chemotherapy one day with all these other women. Now, we all had breast cancer. But when we compared notes, we discovered we’re all different: we’re different ages; we’ve all got different life experiences; we’ve all got different diagnoses (even though it’s all ‘breast cancer’); we’re all on different drugs. So, individually, what we’re going through is all completely different.
Beyond the mere words of the diagnosis, there’s so much more to consider: there’s you and your lifestyle; you and your family; you and the particular reactions you have to your therapies; you and your attitude towards cancer.
Some people get really, really knocked by cancer, really down. (Which is perfectly normal.) But others are naturally positive. I’m very lucky because I’ve had that natural positivity throughout the journey … although we might be better to call it a ‘forced march’!
GV: ‘Forced march’? You make it sound like you’ve joined a Roman Legion!
KAREN: (chuckles) Well, it is like a forced march. Once you’re into your treatment cycle, you just have to go with it. A ‘journey’ implies fun – a ‘journey’ is travelling overseas and having a great time. But that’s not what happens with cancer. Even with a good final outcome, like mine, it’s really hard going through it all.
Surgery is brutal. I found chemotherapy really hard, too. Radiotherapy was okay. And I’m now on hormone therapy. But all these things knock you around. And cancer doesn’t happen in a vacuum. You’ve got your job, your plans, your interests. Often you just have to drop everything for a year or two – or longer. That can be distressing.
That’s what I mean by, “There’s no one, single experience of cancer.” Everyone’s experience is different.
GV: Did you find writing the stories of children with cancer harder to tackle?
KAREN: Yes, I did. You just don’t want a young person to have cancer. For some reason, when an older person goes through cancer it doesn’t seem quite as tragic – even though it is just as difficult!
GV: I guess we all feel, “But they’ve got their whole life ahead of them …” And that seems so unfair.
KAREN: Yes, that’s true. But these days, with child cancer the prognosis is much, much better. Ninety percent of the time now they can actually cure children. They’re concentrating more on the effects of the drugs and therapy on kids’ long-term health.
But … death still lurks there as a possibility. Take Jasmine’s story. She didn’t make it – and she was such a vibrant 14-year-old. She had a very rare cancer, and died at 18. It was heart-wrenching to catch up with her mum and dad and find out that, despite the four wonderful years she’d had after I’d interviewed her, this bright, young flame had flickered out. That was really sad.
GV: You mention that many people, years ago, including your own dad, shied away from going to the hospice. They saw it just as “a place where people go to die”. I guess as a hospice volunteer you’d have a different view?
KAREN: I think my parents’ experiences tell the hospice story really well. Dad was very much in that camp – didn’t want anything whatsoever to do with hospice. He only went in the night before he died. (So he did actually go to die.) But because he never went earlier, never hooked in to any of the help available, they just weren’t allowed to help him.
My mother was the complete opposite. When she found she was terminally ill she immediately signed up to their programme. She was in real trouble with a huge tumour in her spine and lots of pain. We thought we were going to lose her quite quickly. (Pain’s an illness in itself and can be really debilitating.) But the hospice managed to help her get on top of the pain.
Within a few weeks, radiotherapy had shrunk the tumour, and they’d got her on medication that was controlling the symptoms. She actually had another nine months of being pretty well. She was at home. We were able to do things together … gardening, shopping, gentle things. But it was a rich time. So the hospice actually gave her quality-of-life for nine precious months.
You can’t put a price on that.
GV: My sister-in-law died recently and that was my first ‘intimate’ experience of a hospice. I was struck with how, well … how nice it felt being in there. Music playing, attractive pictures on the wall, friendly and compassionate staff. No clattering trollies and miles of corridors or waiting rooms.
KAREN: Yes, you’re right. It’s like being in someone’s home. It’s not like hospital at all. They’re staffed with really caring people who are highly skilled in palliative care. And, of course, their philosophy is different. They’re not trying to ‘fix’ you. They accept that you’re dying. So they try to make life as comfortable and valuable as possible for each day that you’re still around.
GV: Lots of people with a terminal illness, when they get to the stage where ‘normal’ medicine can’t do any more for them (in the sense of offering a cure), will seek ‘miracle cures’ that can involve great expense and foreign travel. Did any of the people you interviewed do that? And did it make any difference?
KAREN: There’s one woman in the book who went to one of the clinics in Mexico that offered experimental treatments. She didn’t survive. She argued that it gave her a better quality of life in her last days. Now, maybe that’s a placebo effect? Or maybe it’s just the hope factor?
I have great concerns about some of these alternative things at the end of life, where people are offered so-called ‘miracle cures’. I always think, “Where are the studies that prove their value? Where’s the scientific evidence?”
Mind you, I do believe in miracles! There’s a story in the book where it seems God cured a man diagnosed with terminal cancer. But I’m suspicious of those who charge vulnerable people a lot of money – especially when it takes them away overseas. I wonder if they’d be better spending that time with friends and family, rather than racing around the world, doing something that’s often uncomfortable, and might make you worse anyway!
But HOPE is really important … and I guess we mustn’t dump on it.
GV: So tell me about hope.
KAREN: I had a really interesting discussion with my surgeon about this. It surprised me, because he’s the guy who cuts out the cancer – who’s factual and down-to-earth. But he told me that, again and again, he sees people who are positive and hope-filled who do better. They get better results than everyone’s expecting … they resist infection better … all their treatments tend to go well.
On the other hand, he sees people who are really depressed and negative – and they often have a worse outcome. They’ll often get secondary infections; the treatments don’t go as well. But, as I said to him, that’s really difficult because you’re either naturally positive or you’re not. It’s not something you can press a button and change.
If you can surround yourself with good people – positive people – that’ll help. And prayer, obviously, can help. Mainly, just try and be with people who’re going to build you up.
GV: If you’re not naturally positive, if you have no idea how to get on top of your stress or depression, might counselling help? With your attitude, if not the cancer itself?
KAREN: I’m sure there are people who are open to counselling … and that would surely prove helpful. But I believe if you’re open with your good friends and family, they’re going to really help you best of all.
For me, when I was diagnosed with cancer, I felt overwhelmed with all the love and support I got from people I know well. That really helps lift your spirits.
GV: What kind of support is available today for those with cancer?
KAREN: There’s lots of help out there now. The best first-step is to make sure you’ve got a really good GP, because he or she will hook you into everything that’s available. The Cancer Society is amazing. They’ve got lots of different programmes – everything from ‘make-up’ days that give you a boost, to …
GV: Hang on – what’s a ‘make-up’ day?
KAREN: Well, there’s a Look-Good – Feel-Better Foundation. They offer workshop seminars at the Cancer Society. If you’re a woman with cancer, you can go along for a couple of hours, and have skilled people make you up – plus you get a bag of cosmetics at the end. It’s very comforting when you’re feeling pretty grotty; your skin’s awful; your hair’s falling out; you’re not feeling at all feminine. It’s nice to look better – makes you feel attractive again – it’s got to be worth doing. So that’s one thing on offer.
GV: Anything equivalent for men?
KAREN: I don’t really know, because I’m not a man (chuckle)! But there will be lots of stuff out there. Again, it’s a case of having a good talk with your GP. He’ll know what’s available, and he’ll probably make a good guess at what you need and what’ll help you. Remember – everyone’s cancer is different.
GV: Are men more likely to deny they need help? You know – the way men are supposedly reluctant to ask for directions when they’re lost?
KAREN: It’s that old conundrum, isn’t it … that men are reluctant to go to the doctor in the first place, even for basic check-ups, and won’t go till their symptoms can no longer be ignored.
GV: Your book is a ‘two-hit’ thing. You talked to your first 25 interviewees a dozen years ago – and now, you bring their stories up-to-date and add five new ones. Did discovering how the original people fared give you any surprises?
KAREN: Well, it was really lovely to catch up with people 12 years on. Lots of them are doing really well. Ainsley’s a good case-in-point. I phoned her, and first thing she told me was, “I can’t talk too long – I’m just off to London. I’ve got this high-powered job! The cancer experience is very much behind me now.” And she’s done some amazing things in the last few years.
Having gone through the same experiences myself, I thought, “This is wonderful! Life carries on and can still be terrific. You don’t need to feel limited by the experience of sickness you’ve had.”
GV: Several of those you interviewed expressed a belief in God, or an afterlife, or they belong to a supportive Church community … bringing some sort of spiritual dimension into the struggle. Without looking at whether there is a God or whether their spiritual values are valid, those people seemed to do better. Did you think that?
KAREN: Definitely. People who have faith in God get so much strength to face the battle. And the counterpoint is that people who don’t believe in anything tend to get depressed more easily. Perhaps it’s because they don’t believe there’s something to look forward to after they die. They feel, “If I don’t survive this, I’m stuffed!”
GV: So believers are calmer?
KAREN: Yes. And certainly, talking to hospice doctors, they’ll tell you that people facing death, if they do have spiritual values, often have a much better journey. That’s very common.
GV: Your emphasis is, understandably, on the person with the cancer. But for every cancer-attack there are many others affected, aren’t there … friends, family, care-givers. How do we draw help and support for those caring for cancer sufferers?
KAREN: Very often the initiative lies with the person who has cancer. It can seem strange, but they have to ‘allow’ those around them to help them. And I think most people today facing a cancer diagnosis are becoming more open to the fact that, “Yes, this is going to be hard. I will need help. Help from immediate friends and family … but maybe acquaintances, too. Maybe I’ll spread the net a bit wider and let those more outlying people help me.”
Usually the heaviest load is with the person closest to the cancer patient. In my case, it was my husband. We really battled my cancer together. He attended all my appointments with me, so he got all the information I did. It’s vital for your key support-person to do that. And also it’s important that he gets support for himself (or herself) too.
It’s really hard for a spouse (or a mum and dad) to have to watch someone fight cancer. It’s stressful seeing someone you love going through the treatment. So it’s hard on them.
GV: When my sister-in-law was going through all this, she had lots of trouble ‘tuning in’ to what all the experts and therapists were telling her … the diagnosis
… the prognosis … what treatments she would have … what pills she needed to take … how many and when. My wife really needed to accompany her to these sessions and take her through it all later. Is that sort of thing common?
KAREN: That’s absolutely normal, yes. You really do need somebody with you at those appointments. You don’t take it all in. You’re often in a state of shock. Sometimes the terminology that’s used is very technical and can be just too much for you. Your brain isn’t functioning properly. To have someone there with you, so that afterwards you can compare notes, is very desirable.
There’s been a study on this that my GP told me about. If the doctor and the patient have the same education level, then studies suggest that the optimal amount of information the patient goes away with is about 30% of what the doctor told them.
But if you’re NOT on the same educational level – or if you’re really unwell, or English is your second language (or the doctor’s second language) – you might be lucky to take in even 10% of what they tell you.
However, things are changing for the better. Back in the days when my dad had cancer, they really gave you hardly any information. Now, it’s almost too much the other way. There’s all sorts of information, diagrams, pictures, leaflets. So, even if you didn’t take it all in when the doctor first spoke with you, you have lots of stuff to read over and think about later – and to share with loved ones who’re also wanting to know, “What did the doctor say?”
GV: Well, you’ve been on this big journey (or forced march!) and you’ve talked to inspirational people – some of them twice. What have you learned?
KAREN: I’ve learned that there’s a lot of hope. What medical science is doing now is astonishing. In the papers, on TV and in magazines we’re hearing about amazing new breakthroughs all the time. It’s not going to knock all cancers for six, of course. It’ll still probably be a bit of a ‘forced march’ for lots of cancer patients for a good while yet. But even in the worst-case scenarios, where you’re not going to recover, there’s terrific
palliative care and support available now.
GV: You believe those extra days, weeks or months are worth having, worth living?
KAREN: Definitely. There’s huge value in end-of-life living. People are really honest at this stage of life. They totally focus on the things that matter most to them (usually friends and family.) Or there might be some big thing they want to do – like writing their life story for their family, or finishing off some creative project.
And sometimes, it’s quite a lot of extra life – in my mum’s case it was an extra nine months. That’s a long time, especially when every minute is precious. And it’s a chance for people to make amends; to heal broken relationships if that’s needed; to set things right.
When my mum was dying it was a bittersweet time. But now, all these years later, I mainly only remember the sweetness … the terrific conversations we had … and the strength that I got (which really surprised me). It can be an extraordinary time.
Most people are understandably really worried about cancer – because potentially it’s a killer, and we all know that. And, even if it doesn’t kill you, the treatments can really knock you around. But what I’ve learned most from this ‘journey’ is that lots of people can be cured. And the number who do go on to live happy, normal and fulfilling lives is rising all the time.
That, for me, is the hope factor.
KAREN MCMILLAN’S BOOK, ‘UNBREAKABLE SPIRIT’ IS AVAILABLE FROM ALL GOOD BOOKSELLERS. CHECK OUT HER WEBSITE: WWW.KARENM.CO.NZ