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.

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.

Letting go. Damn, it’s hard!

A friend has recently discovered she has cancer, and has started radiation treatment. She says she’s struggling with her need to make sense of everything, and her acknowledgment that sometimes reasons are invisible, or even absent (this will depend on your beliefs). She is also struggling with her desire to ensure that “things are perfect and work out well”. This is so me, I had to write about it.

One of my biggest struggles in life is exactly this. I believe – not sure I dare say “believed” yet — that I had to Know Things; and that I could. I struggled with whether to believe in God, I struggled with what to decide about big world events (was that event good or bad?), I struggled with my having got cancer and what that meant for myself and the life I was living. I wanted to Know what I believed about all these things. I wanted certainty.

Over the past year or so I have let go of a lot of that. I wish I could say how. It has not been easy. There has been a lot of mental anguish, and a lot of fighting with myself. Then, sometime in this time, exhausted, I gave up. Yes, much though it pains me to admit it, I surrendered to the idea that I could not control these things, or Know them.

The God thing was huge — if there is one, well, that’s probably the most important thing to know. Oddly, I am not sure it makes as much of a difference if there isn’t one. In the months that I have given up on knowing either way I am happier.

The cancer thing is more complex. On the science side I realised there were things I could do to find out what caused my cancer — I could do the Angelina Jolie thing and get tested for those genes, for instance. (I find what she has done interesting, and a bit paranoid.) I let common sense cause relief — many of my grandparents had it. I decided it was in my genes. This, of course, is a nice easy answer as it lets me off the hook, but tormenting myself with what caused my cancer was a path that I knew would lead to enormous expense.

If I am honest, however, I have kept looking for reasons. Did stress and emotional trauma cause it? Was it chemicals in my environment? To some extent I blamed all of these things. Sometimes I got angry. I kept searching for reasons, especially ones that would make me blameless. I certainly looked so — I didn’t smoke, I exercised, I ate relatively healthily even in 2000 when my first diagnosis came. By 2009 when the second diagnosis came I was eating even better.

Common sense tells me that it’s probably a combination of genes, carcinogens in the modern environment and stresses. Importantly, as I have said before, from what I have read the science so far indicates no causual link between stress and cancer, only that if there is a small spot of cancer somewhere stress can help it grow. The main point is: does it matter? The fact remains that I had cancer (so lovely to be able to say that). That is what I have to deal with.

It’s the same with the transplant. Did I need it? From what doctors say, even though the second cancer diagnosis was a mistake my liver was on its last legs and needed to go. If I allow myself to imagine for a bit that I didn’t need the transplant and I am now immune suppressed “for nothing” what does that knowledge do for me? How will it change how I have to live now? It won’t. I have to deal with the fact I did have a transplant, and I am on immune suppression drugs. That’s that. It’s that old spilled milk thing — you can’t cry over it. But letting go of wanting to Know these things is hard. Even writing this I had to change smug declarations that I had let go of things I hadn’t! The mind plays tricks on us all the time, it’s a wily old thing. I shall have to keep working, because being content to not know really does lead to greater calm, and a more positive lifestyle. You deal with what is, which means you move ahead and your energies are not bound up with what has already happened. The why? We shall have to leave that to the gods.

**And just one thing: This morning as I took my immune suppressant drugs, and the minerals to replace the minerals the drugs deplete I also had to take an antihistamine. It annoyed me slightlty. As the drug prescription has diminished the state I found myself in last year, where immune suppression was so high I didn’t get hayfever for the first time in probably my whole life, was gone. I could no longer proudly state that as a perk from my medical adventure I no longer get hayfever. Damn!

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

Society and Me

So, I got an email that asked, ‘Do men care about cellulite?’ I saw red.

“Can’t we stop putting people in boxes?” I thought. “I am sure there are men who care a lot, and others who couldn’t care less.”

Also, I continued, I like the look of a well-toned guy. Who doesn’t? But that doesn’t mean I can’t love the guy with the one pack who loves me when I am sick, grumpy or unpleasant, as well as when I am at my best. Men, oddly enough advertising people, are human. They are not all the same. Just as I feel that way, I am sure there is a reciprocal thought in men towards women, or other men (let’s include the gay community here, men and women, and everyone else in-between).

I posted something to this effect on Facebook. Then I thought some more. I realised I ad fallen into the trap I had been moaning about. That’s the appearance first trap. Naughty, naughty, naughty me.

I’m with JK Rowling on this one: “Is fat really the worst thing a human can be? Is fat worse than vindictive, jealous, shallow, vain, boring, evil or cruel? Not to me”.

Our society is so geared to surface – how you look, what car you drive, what clothes you wear, who you hang out with. It’s crazy and it’s hurting us.

For years and years, for various complex reasons, I have felt inadequate – not good at maths, not pretty enough, not clever enough, not quick enough, not fit enough. I sat up nights as a primary school kid, wondering why I was not “as good” as my younger siblings at maths, sport, school in general. That’s sad. I am sad for little me.

For me it makes sense that emotional upheaval has physical outlets, and enough emotional upheaval, especially in a sensitive person (which I believe I am), can cause serious illness. Seven months of therapy has opened my brain to letting myself just be me. Sounds crazy, hey? Thing is, I haven’t let myself be me for a long, long time. It’s fun.

Letting myself be me means accepting that I am not perfect. Sure, I can strive to do better next time, but I don’t have to beat myself up this time. I just have to learn. I’m enjoying letting myself be me. It’s hard wovrk. I have to constantly remind myself. It’s also fun, and I kind of like New Me, who is more focused on enjoying herself than rupping herself apart. You should try it, if you haven’t already.

A revelation in a cup of coffee

As I looked down at the coffee mug that the barrista passed across the counter this morning I suddenly had one of those moments of clarity that come to all of us from time to time.

I had an instant flashback to another mug of coffee I had bought at that coffee emporium: the first one that I was brave enough to buy after coming back to work after my liver transplant. It is strange to think that I had that operation back in June 2013 – 18 months ago. It’s getting to be a long time ago.

Facebook did that “Sue’s year” thing around Christmas, using photos you had posted during 2014 to collate a quick trip through the year. I joined the throng, and titled it “My year of emergence after my transplant”. It was. I have written of this before.

New year often brings about self-reflection, and for South Africans the year doesn’t really start again until schools go back next week – most of the country is in summer holiday mode – so we get a legitimately longer period in which to do this. It’s good, although as usual the people who could really benefit from self-reflection are probably not self-reflecting…

Anyway, I did think about the year, and my instinctive title for it. It came to me again with that coffee this lunchtime. Having the transplant had me taking a huge step backwards. I realise now that last year was one of near hibernation for me. I didn’t really have friends round to lunch, despite enjoying cooking for people and having them around. I am not a full-blast extrovert, so this is not something I have ever done on a continual basis, but I didn’t do it at all last year. Yes, people (family and very close friends) came over, but no one else. I reduced myself and my energies to my life’s special people, and I realise now that I probably had to. Coming out of my chrysalis required a lot of energy, and I had to use most of that for being effective at work.

I realise with new insight just what a big thing having a transplant is, and how traumatic. It is an enormous imposition on your life, especially if (I think) you are used to living that life as a busy, involved adult. Looking back I was not depressed, but I was conserving energy, and that meant I had little energy for anyone or anything beyond my immediate circle.

There is also the therapy, and the realisation that I have for so long been so focused on surviving physically. I skimped on the emotional and more work is needed, but already over six months I can feel I have let go of some of my need to control. It’s a good feeling and I am still learning how to let go. I still haven’t entirely worked out what exactly that means or how it will unfold in my life, but I know that these words hold true:

Having the transplant and waking up too weak to even breathe for myself (for, luckily for me, less than a day) was an enormous undertaking. I literally almost had to learn to walk and eat and bath again. Each of these, as I did them, felt new and momentous; and, initially the world appeared a relentless and imposing place. I ordered that cup of coffee today without even thinking about it, until it appeared on the polished pine counter, and then, in a flash of clarity, I saw how far I have come.

But even before I had the transplant, I had years of living with what I believed was cancer (see previous blogs to find out that the diagnosis was mistaken) which, in ways I am only now realising, reduced me to surviving physically more than emotionally. I was not devoid of emotion, but I largely set it aside to cope in the only way I knew how, with the assault on my body that was cancer and, when it was finally seen on scans, a massive tumour. Even before that, my first cancer diagnosis was in 2009, and I realise that my main life focus has been on physical survival for more than 15 years. Now is the time of my emotions. I have a lot of growing to do, a lot of releasing.

I am hoping that this will be my year of reaching out, I at last feel ready for that: for allowing emotions freedom from the tyranny of my control. Last year was a slow climb uphill to a lovely summit, now I must release the brakes and (hopefully) coast gently down into a new valley.

*Quote from Danielle Koepke