Cancer, perseverance and life

PERSEVERANCE is not something our world often talks about.

This morning as I was leaving home I saw a friendly, deep orange face in my drought-stricken garden. We in South Africa are facing the worst drought in 20-something years. I have no idea how farmers are coping. I feel deep frustration and an unending background sadness every day as I watch clouds build up and then dissipate and I am a city-dweller.

There it was. A lovely, deep orange nasturtium flower bravely blooming despite the surrounding dryness. Later, swimming at gym, I thought of that flower. I was sluggish, I felt a lack of power in my arms and legs as I cut through the water. Bad Sue thought, “Oh well, it’s not meant to be today, maybe you should do 10 lengths and leave it.” Good Sue thought of that flower: “If the nasturtium can do it, so can I.”. I did my usual 40 lengths (1km) and felt better for it. Yip, I was slow and it was tough, but I persevered and that in itself gave me a sense of power and accomplishment.

Here it is:

Some things in life are hard, but in order to succeed we have to battle through. A tough academic course, radiation, a marathon, chemotherapy, learning to play the violin, watching a loved one suffer. I have faced some of these things, and I know that the reason I am still here, happy and (relatively) healthy, is because I am lucky enough to have been blessed with perseverance. Some may of course call it stubbornness, but I think perseverance is different, more like determination. The determined will keep going while there is reason to do so, reason is not considered by the stubborn.

The obvious question, then, is was my pushing through swimming perseverance or stubbornness? I’d say it was perseverance. I was not injured, I was just physically tired, possibly from the previous day’s gym session. Determination kept me going, stubbornness would have kept me going despite an injury that should have been rested.

There’s a lesson here for those who are facing things like cancer and other “dread diseases”. Perseverance and determination will get us through the various treatments, many of them really horrible, that may cure us or buy us some time to continue with “quality of life”. Stubbornness, however, might have us demanding these things when it might be better to let go and let life end.

The thing about compassion

I’ve discovered something about compassion. When you are not at home with yourself, you don’t have much of it to give to others.

A year’s therapy done and not only am I happier in my skin, I am finding I have much more room in my soul fior others’ flaws (and mine). I learned that it was OK to be just me, that I was enough just as I am, It’s something I have to keep reminding myself is true, but at least I know to do that. (This isn’t a licence to sink to mediocrity, there is always room for personal improvement, what I have done is accept that I am not perfect.)

The other day I read this: “The doors to the Wild Self are few but precious. If you have a deep scar, that is a door. If you have an old, old story, that is a door. If you Love the sky and the water so much you almost cannot bear it, that is a door. If you yearn for a deeper life, a full life, that is a door.” (Clarissa Pinkola Estes) It struck a chord.

It’s just over two years since my liver transplant. Looking back I am almost able to split my recovery into one year for the physical and another for the emotional (assuming I am fully recovered). Except the truth of the second year is that I recovered much more of me than my pre-transplant self. I am relearning my real self, flawed but also sensitive, loving, fun and, yes, compassionate. I had deep scars, physical and emotional, and they came from old, old tales that I told myself about who I was.

The tales we tell ourselves about who we are come from our reactions to life’s knocks. The intense pain, for example, of a broken heart, often ends up with us saying: “S/he hurt me, but I am tougher than this.”, but this somehow becomes “I am tough, no one can hurt me.”.I certainly did the “I am a rock” thing, only I wasn’t and have never been and the effort it took to be a rock was killing me, and making me grumpy and lacking in compassion for myself (“How can you let that hurt you, haven’t you learned anything,” I told myself.) or others.

One of the dumbest, most damaging platitudes of today is: “You are never given something you can’t handle.” It implies that you, and you alone, should be able to handle anything life throws at you. That means that if you don’t or can’t, you are somehow wanting, and very many of us succumb to mental illness of varying degrees. The thing is, humans are social beings. We are meant to help each other. How much more mental strength would there be in the world if it was seen as OK to say, “I’m not coping with this, please help me.?

And once you are able to say that, once you are simply able to believe that asking for help is not weakness, you are more open to being compassionate about others’ struggles. We are, after all, all in this together. Plus, it’s often flattering to be asked for help.

Of odd visitors and letting go

It happened just like that, a total surprise – my “letting go” of some (quite a lot) of my bottled up anger.

Well, I suppose that’s a bit of a lie: there were those eight or so months of therapy, with lots of wrestling with the idea of “letting go”. I really didn’t want to, even speaking the word “submit” was – and is – difficult for me. I’m not even keen on surrender (except in some situations). “Letting go” sounded more active, more of a choice. But when it happened, I couldn’t explain how I did it. One day I woke up and a lot of the things that had mattered no longer did. It was a lovely, roomy feeling, like the first spring day on which you take off your shoes and run like a child on damp grass. I was suddenly free of a heaviness that had kept me rooted to bits of my past.

While I reveled – and am still reveling – in this freedom and lightness, I struggled to explain how I “let go”. Then, as so often happens, in the midst of conversation (admittedly with my therapist), I suddenly said something that made it make sense.

“You let go,” he said.

“Well,” I said, “not really. It’s more like I let in. I let in disappointment and found it was not such a bad visitor after all.”

And then I sort of looked at that metaphor and found that it was a good one.

Imagine your being as a home, and your emotions as, variously, family that lives with you and visitors. You want your home to have a particular atmosphere, so you welcome in certain of these visitors and make others stay outside on the stoep (porch). (I imagine the stoep sitters as the smokers, the ones you don’t want inside, messing up the atmosphere).

“You can choose your friends, but you can’t choose your family,” was what my mother used to tell me (and sometimes still does) when I complained about various siblings’ behaviour. It wasn’t very sympathetic, but it was perhaps a good thing in a family of six kids – you don’t want to take sides in that mix. And, here’s the thing: it’s true. It’s also the case that you often accept family in your home when actually they should be booted out (even if only for a time)! (And then there are those family members who skulk in the shadows, largely unnoticed, but somehow tarnishing the atmosphere, or quietly shining it up.)

So, if I continue my emotions and family and friends metaphor, I kept certain emotions (the so-called negative ones) outside on the stoep, and clung to others (the “positive” ones), all the while not seeing that sitting, sniggering on the couch were the bad relations: emotions such as the fear of being seen as weak. I was afraid of allowing in some of the “bad” emotions I kept on the porch – disappointment, sadness, loneliness, fear.

Then, one day, I let in disappointment, and found I could actually live with it. So now others are coming to tea too: sadness, loneliness and various fears (fear is a large family, I think – although deeper scratching might reveal other emotions as yet undiscovered). Some are simply visitors, they come for a day, drink far too much tea and eat all my best biscuits, but then they get up, wipe their hands across their vanished lap and say, “Well, I’m off. See you next time.” And that’s OK. Somehow knowing that “bad” emotions such as sadness or loneliness only want to stay for a bit, tell their latest stories and then go, makes their presence easier to bear. I was scared, I suppose, that they would take up residence on the couch, but I am discovering that few do.

The greatest teachers

When my daughter’s school year started earlier this year she landed up in the classroom of a teacher known for her strictness. She was anxious and nervous.

I told her that it was often the strictest teachers that you best remembered, respected the most and from whom you learned the most. As often happens, I should have been listening to myself.

I am beginning to realise that one of my biggest mistakes in life has been trying to guess, and therefore mitigate, people’s reactions to what I wanted from them, and from life. This would then lead to me contorting myself to suit them so that the negative fallout from my demands was as small as possible. It’s a screwy way to live.

Scientists say that the link between stress and cancer is weak, although there are well-known stress-related illnesses.* Here’s what Stevan Hobfoll, PhD, the Judd and Marjorie Weinberg Presidential Professor and Chair at Rush University Medical Center in Chicago, IL, and member of the American Psychological Association (APA), has to say: “Stress is significantly associated with virtually all the major areas of disease. Stress is seldom the root cause of disease, but rather interacts with our genetics and our state of our bodies in ways that accelerate disease.” http://www.medicalnewstoday.com/articles/289969.php

For some time now I have believed there is a link between stress that I have suffered, and going to a psychologist for several months has uncovered stresses that I overlooked or believed were not there. I suppose it would be comforting to find a reason for my having developed cancer. It would locate it somewhere. People almost always try to find reasons and meaning in life, and, for me, cancer is part of my life.

Trying to head off the stress that would come from disappointing people by adapting my behaviour to suit them has been a pattern in my life. Whether it is part of that which is behind my having developed cancer, who knows. Part of me wants to claim it is. It would make being a cancer survivor more palatable. None wants to be diagnosed with cancer, and two of the most devastating days of my life were the day in 2000 that a doctor first told me I had cancer and the day in 2009 I was told it had come back. Each was enormously crushing in its own particular way.

What I realise now is this. In the end, it doesn’t matter what caused my cancer. Having a reason would be nice in that it would give the diagnoses meaning in some odd way. What it can’t do is change things. I had thyroid cancer. I had surgery and radiation. I was cancer-free for nine years and then told the thyroid cancer had moved to my liver. That was wrong. I am pretty sure I will still be attracted to news that offers reasons for my cancer. It’s my human desire for meaning at work.

I also know that when I was confronted with the news that the 2009 cancer diagnosis was mistaken I was first shocked and stunned. Then I was angry. There is a part of me that is still angry — all that emotional turmoil that lies behind being told you have inoperable, untreatable cancer that you will just have to live with (hoping that it is slow growing). But even then I knew that if I gave in to that anger it would consume my life, leading me down a path of negativity. I let it go. It was a conscious decision, and I am proud of it. It was the right decision.

But I harboured (and harbour) other anger. These months and months of therapy have helped me let go of a lot of my anger. It is no longer my default emotion, that is now sadness. From tragic world events to (my largest trigger) people who treat me as if I don’t count, my reaction these days is generally sadness, not anger. I realise now that anger was my carapace, my shield from emotions that made me vulnerable — hurt, sadness, loneliness. I still don’t cry often, something I really want to be able to do. It’s getting closer.

Perhaps sometime a scientist will draw a greater link between emotional stress and cancer. Perhaps not. I do know this, however: letting go of a lot of my anger has made my life quieter, calmer and gentler. That’s a boon.

I realise now that I learned as a child that others’ emotions could be frightening. As a way of controlling my immediate environment I tried to control them by controlling myself. It doesn’t work. It is better to simply be honest about what we want and need, and let others deal with that however they choose. That takes courage and self-confidence. I lack both, but I am learning, and if I had to endure cancer and a liver transplant as part of this life lesson, I am grateful to both. As I said at the start, it is often the teachers who appear on the surface to be harsh who teach us the most.

*Also see: http://www.cancer.org/cancer/news/studies-no-clear-link-between-stress-and-cancer-returning

Believing in “side-kicks”

“Mom, do you believe in side kicks,” my daughter asked the other day.

We were in the car, and, concentrating on the road, I thought, “Oh no! What emotional playground tussle now?”

“Um, what do you mean?” I asked.

“You know, people who can see stuff, ghosts and things.”

“Ah! Psychics!” I said, relieved.

The ensuing discussion allowed me to insert the important idea of “going with your gut”. I explained that should she get “a bad feeling” about someone, something or some place it was best to trust that feeling. Better to be proved wrong later than to be sorry.

I don’t know if I believe in psychics. If there are such people I do believe that many of those who claim to be psychic are simply good readers of body language and what people say. We reveal a lot about ourselves, and read a lot about others, all the time. But, here’s what I do believe. I do believe that we pick up many more subtle indicators than we know, and they inform the “feelings” that we get about people, places and things. We should trust our instincts. Every time I don’t I am sorry.

For the scientifically-inclined this seems wishy-washy and “touchy-feely”. I know. I sympathise. But, here’s the thing. I believe thoroughly in science, and I believe steadfastly in empiricism. I also believe they are limited, and should be acknowledged as such. Any good scientist will acknowledge that human measurement of whatever kind is inherently flawed — we can only measure what we can measure — there is far more to the world and the universe in which we live than can be set out in scientific papers. We do not know all, neither can we. It is human hubris to think we do, or can.

This has been made patently evident to me in the many mistakes that a collective of doctors made about my cancer coming back in 2009 (it did not, the tumours in my liver were none of them cancer). I have no doubt at all that they did their best and wanted the best for me. This was not a malicious misdiagnosis, but being misdiagnosed made clear that even scientists are human. The God complex is a complex.

None of this makes intuition somehow better than science. I think we need both — listen carefully to what doctors and scientists say. Take it in, mull over it, but when you decide what to do, listen to your inner being as much as you listen to them. If something doesn’t make sense, or doesn’t feel right, get a second opinion. I wish I had done this, and it was only when I did do this — by going to the oncologist that the nuclear physician who initially treated my thyroid cancer said I didn’t need — that I ended up with a liver transplant. Despite everything, having the transplant made sense. It continues to make sense. I do not regret it for an instant.

And, I do believe in side-kicks. Without the many people who, in many ways, rooted for me, I would not be as well-recovered as I am.

World Cancer Day: Don’t just stand there, Do Something!

It is World Cancer Day tomorrow (Wed, Feb 4), so I am glad that the post that has been brewing in my mind for the last bit is about cancer.

The worst thing that a cancer diagnosis does is that it flings you into a world you don’t understand; unless you are “fortunate” enough to have some medical training. Doctors speak another language, and, shocked, you hear lots of words — chemotherapy, radiation, carcinoma, papillary, hair loss, blastoma, CAT scan, PET scan, core biopsy, immunosuppression — and little that makes sense. You turn to the internet and find horror stories everywhere. You think you will die. Only one thing really rings in your head: you are sick in a way you never expected and you have to trust these people to interpret your sickness and somehow fix it as best they can.

It takes away your power. So, you look for something to cling to.

For me that thing was changing my lifestyle, already fairly healthy, to as healthy a lifestyle as possible. In 2009 when I was told my cancer had come back, my sister was also diagnosed with cancer. She found a fantastic book that I have now read at three different times, each time gaining something new. It’s still my lodestone: Anti-cancer: A New Way of Life, by Dr David Servan-Schreiber.

After 20 years of fighting his own brain tumour, Servan-Schreiber, died in 2011 aged 50. He was a proponent of integrated medicine. He was a psychiatrist and neuroscientist so he had scientific training as well as psychology.

In 2009, armed with this book, I changed my diet again, and felt physically better than I had ever felt, despite being told there were tumours in my liver that were slow-growing and I should simply live with them and let the doctors monitor them. I lost weight (but not too much). I felt positive and powerful. I gained a “can do” attitude that helped me survive.

Later, I read it again and started meditation – Servan-Schreiber presents some fascinating research on the power of meditation.

Just recently I re-read the last third, which starts with “The Anti-Cancer Mind”. I’ve been going to a psychologist for just over six months now, and I found that the message on the pages said more to me. I read it more deeply. Here’s something that we should all “hear”:

“It usually takes anywhere from 10 to 40 years for the ’seed’ of cancer in the form of a cellular anomaly to become a detectable cancerous tumour. The seed is born in a healthy cell due to abnormal genes or, much more commonly, exposure to radiation, environmental toxins, or other carcinogens such as benzo(a)-pyrene from cigarette smoke. No psychological factor by itself has ever been identified as being capable of creating that cancer seed.” Servan-Schreiber says that research is “contradictory” on whether emotions can cause or promote cancer, but, anecdotally, cancer often makes its first appearance after a major life stress such as an abortion, a divorce, a death, a child’s illness or the loss of a job. Meditation and reducing stress takes on new importance.

And, for those of us who, like me, have got lazy about exercise (I was doing yoga three times a week, but that was all, I told my self that having had a lover transplant meant I did not have to do “heavy” exercise anymore. I don’t, but I have started jogging for 20 minutes as often as possible) – Servan-Schreiber also notes that adipose tissue (fat) is apparently the body’s favourite storage system for carcinogens… I am looking at my bicycle with renewed love. Exercise can’t prevent cancer any more than the “right” diet can – if your genes are against you – but it is great to do everything in your power to prevent it, or to prevent it coming back, don’t you think?

http://www.anticancerbook.com/