Shooting myself in the foot …

OTHER people’s emotions are not my — nor your — responsibility. I don’t know about you, but while I see the sense of that statement, I have a hard time acting accordingly.

It began like this. One of my sisters lectures engineering at a university. The students are writing end-of-year exams, and one of her final year students is a young man whose brother is dying of cancer. The dying brother wants his healthy sibling to write his exams. He is hoping to see his brother graduate.

“Yes, but that is selfish,” said another sister. “Too much pressure, and he should allow his brother to say goodbye.”

“It’s not selfish at all,” I countered. “It’s thinking of the healthy brother whose life is going to go on.”

So far, so good, but then I went on; neatly shooting myself in the foot.

“Believe me,” I said, “When you are so sick you think you might die — so not even when you know you will die — one of the hardest things is that you spend a lot of time managing other people’s feelings.”

I stopped to think.

First I had intimated a pure motive — thinking of the other’s future. Then I killed it with another motive entirely — managing the other’s emotions, so that their raw grief, or anger or whatever would not impinge on mine.

Emotions, especially intense ones — love, grief, anger — they are hard to deal with when they are unbridled. I doubt many would disagree that we shy away from them because of their capacity to consume us, whether they are our emotions or others’ directed at us. They terrify.

I know I am not the only one whose knee jerk reaction is to try to manage away other people’s emotions. “You don’t get to tell me how I react to your getting cancer again,” an indignant and distraught, friend told me once.

I had no answer. I don’t think there is one. The depth of her feeling shook me. We think we want to hold another’s heart in our hands until we do. Then the responsibility of it all has us packing sandwiches in a spotted hankie.

She was right, though. None of us gets to dictate another’s emotions. Heavens, quite often we don’t even get to dictate our own.

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.

Living la buena vida

Here’s me, walking in the Namib desert after my transplant. It was hot – the long sleeves etc are to protect me from the sun.

A FRIEND phoned the other day and asked if I would be prepared to talk to someone whose husband faces a liver transplant. Of course I would. That’s the whole aim of this blog.

As I have said before, when I faced mine just over two years ago the worst thing for me was that I just couldn’t imagine what life would be like afterwards. Neither could I find much on the internet that showed that life was fairly normal after that big operation. There was a lot out there that was simply horror stories — all the stuff that can go wrong. Worse, all the pre-transplant training I had indicated (I think inadvertently) a life lived in some sort of hyper-clean bubble, cut off from others. Happily, I have found all this to be nonsense.

Here’s what life is like: pretty much the same, when you come down to it.

Yes, I take a step back if someone tells me they are sick. If you have something highly contagious, I will send WhatsApps or SMSes or Facebook messages instead of actually visiting. I am on immune system suppressing drugs and I have to be careful. Yay for modern communication techniques!

Yes, I use hand sanitiser more often, probably, than the average person. But that’s not even every day. I do wash my hands quite a bit. So should we all.

As I have said before, I’ve been camping (it was great), hiking (lovely), hot air ballooning (mind-blowingly fantastic), rock and indoor wall climbing (safer than what comes next), cycling (I have decided it is a contact sport best left to the brave, I shall cycle to the shops and back). I have travelled overseas (I didn’t even wear a mask in the planes, didn’t get sick once and my biggest challenge was working out taking time-specific drugs while halfway around the world, which wasn’t really a problem at all). My day-to-day life is very, very normal.

I wish I had known that when I was facing my transplant, it would have reduced my anxiety enormously, and I was enormously anxious. There are so many medical exams to get through, and you don’t know which ones might disqualify you. You have little control over what is happening, and, for me, the idea I might have a transplant came in one day. I went into a surgeon’s room thinking I would have part of my liver cut away, and came out having said yes to a transplant. The wait to get on that list is terrifying because you want that transplant, and a new lease on life, but what you want is also, in itself, seems terrifying thing. I am living proof it need not be.

I go to work every day, I go to the shops, including pharmacies (one fellow transplant recipient told me he avoided them, which is probably easier for a man than a mother), I eat out, even fast food (a get-ready-for-your-transplant nurse made it sound as though takeaways would instantly kill). I am more careful, yes. If something looks even slightly off, I toss it. If I am not sure, I toss it.

I would miss a beer on a hot day, but non-alcoholic beer tastes pretty good. I do miss a glass of red wine, but on special occasions I have a little bit, maybe a sixth of a glass. The pleasure is similar. They make pretty nice, dry, non-alcoholic champagne here in South Africa.

There are foods I can’t eat, and sometimes I do have a short flash of resentment — after all, who doesn’t love a crispy prawn with garlic butter, a gorgeous bowl of bouillabaisse or some squidgy Brie cheese — but, really? Food? It’s hardly the end of the world, especially as the things I was afraid I would lose I believe I will still have:

– Watching my daughter grow into a teenager and then a woman.
– Growing old with my husband.
– Dancing at my daughter’s wedding.
– Grandchildren.
– Seeing nieces and nephews grow up.
– Going to my brother’s wedding.
– Watching the sun rise from my tent.
– Growing old with my friends, and watching their kids grow up.
– Spring rain, Highveld storms, African sunsets and sunrises.

Life is good, and thanks to some enterprising doctors and some kind nurses, my friends and family and, most of all, my husband and daughter, I am here to live it.

I plan to die around 80-something, which gives me another 35-40 years. I can wait!

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.