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.

Book Therapy

TWO British women who love books have started a business that offers reading lists to people with problems. Bibliotherapy, they call it.

Books have often been my therapy. There is perhaps no better illustration of this than that for the first 18 months after my transplant I almost disappeared into books. Reading involves stepping completely away from the self and into another world completely, one that knows nothing about you.

 

Amused, comforted and intrigued at the idea of bibliotherapy, I have come up with a list for those facing life-threatening illness. It’s not complete, or perfect, but here it is:

* Charlotte’s Web, EB White.
I know of no lovelier tribute to the power of friendship and trust; nor any gentler, more open-eyed view of death and its transcendence.

* To Kill a Mockingbird, Harper Lee.
In which we learn that kindness and dignity need not involve surrender; and also that there is much in life that is unfair, but that need not erode our dignity.

* Sense & Sensibility, Jane Austen.
To learn that hiding feelings leads to heartbreak, but so does an excess of them, and, importantly, that friends want to help, and most easily give practical help. When they offer, we should accept.

* Anti-Cancer: A New Way of Life, David Servan-Schreiber.
A book that gives lots of practical advice the implementation of which made me feel I had regained power and agency. Servan-Schreiber does this without ignoring the emotional. I read it three times and got something new each time.

* The Lord of the Rings, JRR Tolkein.
Another book that shows the power of friendship, loyalty and love, and one that shows that the battle against evil is always worthwhile, no matter how the odds are stacked.

* The 100-Year-Old-Man Who Climbed Out the Window and Disappeared, Jonas Jonasson.
Because we need to know it is OK to make it up as we go along.

* The Little Prince, Antoine de Saint-Exupéry.
This whimsical and insightful tale shows the beauty of existence and of the world; and — importantly — the necessity to tend to our loved ones and just what it is that makes a loved one unique to us.

* Winnie the Pooh and The House at Pooh Corner, AA Milne.
Not only do we get giggles, we get wonderful insight into what is truly important: friendship and complete acceptance.

Here is a link to the article on bibliotherapy http://www.newyorker.com/culture/cultural-comment/can-reading-make-you-happier

In Praise of the Ordinary

Imagine life without the ordinary daisy.

I’M SITTING here smiling at my arms. I know, odd, hey?

Just a few weeks ago I wrote about how I felt a new me emerging. One that wanted to get fit and strong, one that had at last shrugged off the need to cocoon myself. It’s fun, this new me, and (as regular readers know) it got involved in a push up challenge.

I think I’ve been training for just over two weeks now, and my arms are beginning to show a change; some muscle. Right now, the muscles over my shoulder are under gentle burn thanks to this morning’s session. It feels good.

Misery, they say, loves company. I found it easier to write this blog when I was battling physically and emotionally, there was material with which to work. Now that I am happier, and a lot calmer, I am sometimes stumped. It’s a good place to be, but it doesn’t make much of a topic to write about. My life is very ordinary.

I get up, do yoga twice a week, swim once a week, wake my daughter, get ready for work and school, work, go home, cook supper, watch TV with my husband, read a bit, go to sleep. Repeat. There are those for whom that description of suburbian domesticity will sound like hell. It’s my heaven.

Some very admirable people, after an encounter with cancer, a transplant, multiple sclerosis, bomb blasts …the list goes on, change their lives radically. They leave jobs, march across deserts, climb mountains, raise money for various causes, dedicate their lives to helping others. I salute them all. Their stories are inspiring.

Right or wrong, when I knew that I was going to have a transplant, what I wanted from having one was normality. I wanted my life to go on as it had.

Just before, and just after the transplant, that was hard to imagine, but here it is: ordinary life.

What’s more there is something to be celebrated in the ordinary. The world needs quiet, ordinary people as much as it needs heroes.

Every now and then someone who would otherwise have lived an unremarkable life finds themselves pushed to the leap into frozen rivers to save people from a capsised boat, or clamber into a burning car to drag out the injured. Interviewed they say they simply did what the had to do, that they felt they had no choice, sometimes that they didn’t stop to think, they just did.

Before I had cancer or a transplant I looked at anyone who survived either as remarkable. I don’t feel remarkable at all. I feel ordinary, which is great because that is what I wanted to be: just an ordinary person making the world a better place by being a quiet citizen trying hard to be good and kind and honourable.

There are millions of us, all over the world. We get up every day, feed the kids and the pets, take children to school, work as best we can, pay taxes, try to always speak quietly to the irritating, smile, say thank you, drive as safely as we can.

The world absolutely needs heroes, those people who inspire us, and show us that ordinary people can extend themselves, can step up to the plate when the going gets tough. The world also needs us ordinary people. We keep it running, we keep society ticking over. So, smile, chances are you are an ordinary hero too.

The push off to push up

SO, I got myself into a push up challenge. I can’t do one, and I have entered a pact with a sister and a friend. We have set our own challenges.

Mine is to be able to do at least one full, good-style, push up by January 2.

I think it marks something that started just as South Africa did that particularly South African thing — winter swapped to full blast, hot as an oven, summer in …oh, say a week, maybe two. (You got to love this place on that score.) I had my liver transplant in June 2013. It took a long time to recover physically, it took longer to recover mentally. I think I have my mojo properly back.

That said, some things have changed. I went cycling again. There I was, on my bike at the top of a hill, and I could simply not let myself go down. Some of this may be age, but I believe that a lot of it is simply lost physical courage. I am not sure it will come back, and I am trying to come to terms with that.

I cycled quite a bit at university, I was in a place that lent itself to cycling, as mode of transport and also as a blow the cobwebs of studying out of your hair exercise. I was never afraid, and I fell only a very few times. I never expected to fall. Those assumptions of personal inviolability are vanished. I have to make peace with that.

I also realise that not only did I use winter as an excuse to go softly on the exercise front, I used my transplant too. Before the transplant I ran 35km/ week, after it I stuck to walking long after the injunction against running was expired.I molly-coddled myself, and I justified it by saying to myself that I had undergone a shattering experience.

I like to think of myself as a fighter, and I think that in many ways I am that, but still I chose a personal cocoon for longer than strictly necessary. That’s not to say I didn’t need that. There’s a part of me that thinks that is probably better than coming out fists raised, with no consideration or acknowledgement of my feelings — fear, vulnerability, loss of confidence. In the old days I would have pushed myself harder, but at what cost? I was less available to my “negative” emotions. I also had more to lose. The first time I had operations and treatments linked to cancer I was newly divorced and had moved to a new city and a new job. Sometimes I am amazed I survived, but I did and I did it by not cutting myself much slack at all. Perhaps these two years of slack are better, softer, gentler? Who knows.

What I can say, however, is it’s nice to have me back …excuse me while I do a few more plank exercises ….
Photo from https://www.flickr.com/photos/mikebaird/390606540/

The Painful Shuffle

WALKING. It’s not something most of us think about, until we can’t.

A friend has just had a back op. She is discovering walking again. Slowly. Her Facebook posts tear at the lid I have put on my memories of having had a liver transplant just over two years ago. The memories of the first few days.

As I wrote my last blog post the enormity of what happened, of the liver transplant, struck me a hammer blow. I was suddenly, momentarily, struck dumb by the realisation of just how enormous that was: I had a liver transplant.

I realised how normal my day-to-day life is now, and how far I have come. In the past two years I have been quite open about what someone once called my “medical adventure”. I thought to myself that it was time to stop, to let the memories recede and just be the new me. The new me is not that different from the old me. Everything and very little has changed. It’s hard to explain.

Walking. If I let myself I can remember acutely walking just after the operation. They made me walk on my first fully conscious day, 24 hours after a five-hour operation during which a 40cm cut was made across my abdomen, my liver was removed and a new one was put in. That’s quite something. Not the having to walk, the operation itself. Amazing.

It was agony to just move, to pick up something “heavy” like a book. Then a cheery physiotherapist arrived and said I needed to walk. I knew I did. I had been told this would happen. I was terrified.

I pressed my hands and elbows against the hospital bed, my movements glacial. It took ages simply to lever myself into a sitting position. I had to move, stop, let the pain settle, move again. Agony.

Legs across the strong cotton sheet. Move, stop, let the pain settle, move again. Feet on the floor, cool and clean. Feet in slippers, stand with drip to lean on. One foot out, pain, stop, next foot out. Shuffle.

The corridor, perhaps 200m, looked like an endless road. Shuffle, let the pain settle, shuffle again. I made it to the end, where sunshine shafted through the window. Warm bliss. Pain settling.

Turning brought back the pain. Shuffle again. Getting back into bed was another level of pain. I let the pain settle, and then I smiled. I had made it, 200m, and it felt as wonderful as finishing a three-day hike. The pain was worse, far worse.

Yes, friend in hospital, I feel your pain. I have been there. It will pass, you will get stronger and one day, like me, you will have to dredge your memory to recall it.

Taking back control

ONE of the worst things, for me, when I was told I had cancer, told the same again nine years later, and even more so when I said yes to a liver transplant, was the immediate loss of control over my own life.

The idea that we control our own lives is both truth and myth. It is true that the decisions we make, the paths we choose, set our lives on very particular trajectories. It is true too that everything we do and choose can be gone in an instant. Car crash, brain hemorrhage, a doctor saying, “Sorry, but you have ….(pick from a variety of life-changing conditions). Or, of course, you could be Syrian…

Anyway, last week I wrote about some of the things I changed when I found out I had cancer: what I ate, my attitude to exercise (I’ve always exercised, but I changed my appreciation for its importance), the chemicals I use in my home. Then a reader commented that I could not know that things like bad chemicals caused my cancer, and that changing these things might be futile. I don’t believe so. Here’s why:

Once I got those diagnoses, and once I said yes to a transplant, so three times in my adult life, I was forced to hand control of my life to other people. Other people who know way more than I do about how my body works and how to fix what goes wrong with it. Because of my lack of knowledge I was forced by and large to accept what they were saying. Fear was a huge factor too. No one really wants to die at 29, or 38-with-a-kid, or 42-with-the-same-kid.

Let me say this as an aside: While I don’t waste time regretting it, one of the things I should have done is got a second opinion, at least with the second cancer diagnosis, which was false. It was only when I went to see an oncologist because of other problems — effectively getting a second opinion — that I had someone take very different action regarding my situation. Before that I had listened to my doctors and simply lived with the knowledge that I “had” cancer for four years because I was told it was slow-growing and my best fighting chance was my strong immune system. I am saying this to show how fear affected me, I was too scared to get a second opinion and possibly have to face weighing up different approaches. I was also afraid of the cost of getting a second opinion — specialists are not cheap. I was wrong.

All this aside, my point is, that once I handed my life and body over to the doctors I was left with the horrible feeling that I was a helium balloon that a child had let go, adrift and at the mercy of the wind. Then I began to read because that is what I do, and I realised there were things that I could do. I could change how I ate, how I approached exercise, what chemicals I used in my home.

And now my response to that reader — and anyone else who thinks similarly — is: Absolutely. I don’t know what caused my cancer, and I am not completely sure that any of the changes I have made is making a difference. Common sense says they must be, but I have no absolute proof, nor do I need it. What all of these things have done is they have given me a sense of personal control. That is priceless.

The Day the Cancer Came

THE world receded from me. You know, like in the movies when the camera focuses on one person and everything surrounding them goes sort of stringy-blurry. I apparently carried on breathing.

The doctor carried on talking, but my brain stopped at one word. Cancer.

When I came back to reality I was standing in front of my car, there in the blinding sunlight. I had no idea how long I had been there. Then I drove back to work.

Thirteen years later my husband and I sat in a transplant surgeon’s office and agreed that I should have a liver transplant. I had tumours in my liver, one the size of a grapefruit, but I was lucky — it was nowhere else. If I signed up for a new liver it would mean signing up for a shot at living beyond 50. We looked at each other, nodded, turned to the surgeon and said yes. It’s usually so easy to say yes, but this yes was terrifying.

That day, right then, I had 11 blood tests and went back to normal life. I parked my car on a street, walked somewhere, did what I had to do there and then couldn’t find the car.

Shock.

Cancer. One day I was a normal person, healthily going about the business of being a normal person. Then next I had cancer. Suddenly I was not normal.

Transplant. One day I was a person who had cancer, the next I was someone facing a life-threatening, life-saving operation.

In fact, I can narrow it down to a single moment. The particular moment someone says, “I’m sorry, it’s cancer,” or, “You must decide, but if I were you I’d go for the transplant.” In the second or two that it took to say those words my entire world changed.

“It’s like an ambush,” said a friend who has just found out she’s the latest cancer victim. It is.

For me, both times I have been diagnosed with cancer my first thought was, “I’m going to die.” It didn’t matter that I had fought and won — for nine years — the first time, or that I knew others who had done the same. Life slapped me in the face.

What happened next is that cancer took over my life. Even though I have no cancer now it is with me daily. Weirdly, after the transplant I was told that the tumours they found in my liver and swore were cancer were not. That means that I have been cancer-free for 15 years, although there were the four years from when the tumours were first diagnosed as “slow-growing” cancer, during which I believed I had cancer. (Yes, this was all a mind-bend. It still is.)

There is not a day when I don’t think of cancer and my relationship with it. Most days I think of it several times a day. There is no escape. Cancer is my constant companion. There are advantages — I think I live more consciously, I can have true empathy with others facing cancer, I eat better, changed what chemicals I use in all aspects of life and have a greater focus on exercise — but it is also exhausting. I wish for a day in which I could live again with the unconcerned abandon of someone who still completely trusts life and their body.

“Cancer changes your life. It alters your habits …Everything becomes magnified,” writes Dr Siddhartha Mukerjee in his brilliant book on cancer, Emperor of All Maladies. “Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality… What patients see through the glass is not a world outside cancer, but a world taken over by it — cancer reflected endlessly around them like a hall of mirrors.”

 

Spring

BEFORE I left for the USA two weeks ago I was fairly anxious. Intenational travel is, of course, always an anxiety-inducer, but what really got me worked up was my drugs. There are a lot of them, and my life now depends on them.

I was worried some customs officer would confiscate them, or at least detain us for ages over them. I got a letter from my liver specialist, one from a pharmacist, I packed my prescription, and my drugs in their original, bulky, boxes.

No one so much as looked at them. You don’t always get what you expect, do you?

I was also excited to go overseas. South Africa is a wonderful home, but it is also a tumultuous one, and I knew I needed to get away long enough to miss it and realise again what I love about it. I needed perspective.

I did miss it. I am glad to be back. I got the perspective I wanted, but I am not sure I got the perspective I expected. Even though I am back I am still avoiding our politics. I expected to not mind that. But something is different in me.

i travelled abroad and I survived. It’s the last in a long set of steps towards regaining my independance – a holiday, camping, hiking and now this. I feel something has changed in me. One of the first things I did was invite people over. It’s only this year – two years after my transplant – that I had a lunch party at home. Now I am inviting people again. After my transplant I withdrew, drew myself into a shell. Slowly I crept out. I think I am finally right out, open, in a new sunshine.

Right on cue for spring.

The reason in suffering

PLATITUDES. We all use them, often unthinkingly.

Since my transplant, however, I find myself less able to use them. The more I care about someone, the less I trot them out. I watch others face sadness and hardship and tragedy and I cannot bring myself to say “It will be OK.” I know too deeply that it might not be OK. All I can say is, “I sincerely hope it will be OK.” Somehow there is less power in that, although I hope there is more sincerity.” I wonder, too, sometimes, if this makes me less of a comfort to my friends and family.

Platitudes can help. Once, when a sister got into trouble during the birth of her baby I approached a friend for support. I must have been wild eyed. I felt wild eyed. He hugged me, and said, “Shssh, it will be alright,” and even though I knew neither of us knew whether this was so, I did feel comforted. Luckily for both of us and — importantly – my sister and her son, it was alright in the end.

However, I have struggled for years in the wake of various clinicians telling me, when I “lump” was found on my thyroid, “It’s not cancer,” when it was. False reassurance is …well, false, and it can hurt.

There are several platitudes that annoy me. One is “You are not given anything you can’t handle.” It’s patently untrue — go and ask psychologists and psychiatrists that work in mental asylums.

Another of my pet hates is: “Everything happens for a reason”.

It implies that either you somehow deserve whatever tragedy or difficulty entered your life unasked, or that there is some power at work that has tossed tragedy your way “to teach a lesson” (the deserved thing again), out of arbitrariness or because your suffering is meaningless in terms of its larger plans. I don’t find any of that comforting at all.

But, here’s the thing. Every cancer survivior or transplant recipient I have ever spoken to, everyone I have met who has faced other tragedies — each of these people has learned something from their experience. They have been hard lessons wrought of pain and suffering and fear, but they have often been good ones. They have told us who we are, and what we are made of. One of my favourite mottos is “That which does not kill you makes you stronger.” I think it’s true.

Sitting here, writing, I know that while I sometimes resent some of the effects of my having had cancer and a liver transplant — you only have to go to the previous blog entry for some of that — I would not go back. I am who I am because of my experiences. Through them I have gained attributes of which I an proud: compassion, empathy. I fail at these like everyone else, but I succeed now more than I ever did, and I like that about me.

If it weren’t for these experiences I would also not have gone to a psychologist for a year and worked with him to let go of bad experiences and traumas. Doing so has deepened me, made me calmer and added dimensions to my compassion and empathy. This, then, is the reason in my suffering.

No, I don’t believe everything happens for a reason. I don’t believe that at all. Some things just happen, good and bad. What I do believe is that we can find reason in anything that happens. That is the power of our humanity and our imagination, our will to survive.

I like that.

Retail therapy

Feeling down, and a little bored, I wandered off to the mall. “Perhaps there is something new I can buy that will make me excited and happy,” I thought. I was wrong, and I knew it, but hope springs eternal … and the capitalist ethic is punted relentlessly. It affects us — or me at least — due to its very ubiquitousness.

I ran my fingers down a gorgeous pink turtleneck, cashmere unbelievably soft. I imagined myself wearing the jersey. I thought of the jerseys squashed into my cupboard at home and left. The turtleneck was beautiful, but beauty does not need to be owned. I left it on the rack like I would leave a gorgeous wild flower in a field.

I wafted into one of my favourite clothing shops. There it was. A lovely checked shirt. I have a weakness for them, they conjure memories of my 20s in the 1990s, when grunge was the thing. I’m glad it’s back, sort of. I enjoyed grunge. I even tried the shirt on, but I left it behind too. I knew buying one would make me feel happy and purposeful pretty much until I handed over my debit card.

What about books or music? They definitely deliver more bang for your buck. Off I went to the book shop. There I found many potential mood enhancers, but rifling through their pages, paper smell wafting from their leaves, I thought of the piles of books at home that I have promised myself I will read. Some of them have hung around for two years. Buying another one would, I knew, raise optimism for a very short moment. Then it would call up from the deep the demon of anxiety. I smiled with a growing sense of personal containment, sunk my hands into my pockets and wandered off home.

As I wandered through the mall, happy in the reaffirmation that money can’t buy happiness, I also felt a strange disconnection. I was in a mall, after all. A mall stands for one thing only: consumption. People wandered by, several packets in hand, faces alight with acquisition. I felt like a ghost, an outsider, unable to share in their acquisitive happiness. “You know,” I thought, “I don’t really even want things for birthdays or Christmas.” Not unless I really want them.

A few years ago a sister asked that we not give adults presents for Christmas, only the children. I opposed her. I was fixed on tradition, and its perfect expression. (Sorry sister, I think you were right.)

Don’t get me wrong, I am like everyone else. One day I will pass a shop window and in it will be an item — jersey, coat, dress, book, CD, whatever — that will call to me. I will want it, and I will pay for it and it will make me happy, probably for a long time. A lot of things do. But my mall expedition taught me something I already knew, actively knew, knew even as I was setting out — any attempt to buy happiness is doomed. I knew it, but I went anyway, and that’s OK, because reinforcement is often positive. It certainly was this time.

All the work I have done in the past year to reconnect with the deeper me, all the work to unlearn the person that I constructed to fit in with whoever others wanted me to be, has also taught me this: it is OK to be bored and a but sad, to feel ennui, for a time. Emotions come and go, so did this one.

I don’t know whether the long-ago realisation that money can’t buy happiness, or its mall trip reaffirmation, came from simply growing up or was accelerated by my having cancer 15 years ago, but I do know that the experience of having cancer and of having a liver transplant have burned this knowledge deep in my soul.