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!

Living Poets Society

I watched Dead Poets Society last night. It may be my favourite movie of all time. In many ways it reveals my soul, it depicts exactly my reaction to poetry and great literature. To me there is nothing more wonderful than reading a phrase that shows that out there there is someone who feels, or thinks, your feelings or thoughts.

That’s because I often feel alone.

Going through a transplant at the end of a long walk with cancer is in many ways an alone journey. Yes, I had people who were brave and loving enough to walk with me, to hold my hand, and I am grateful for them. None of them could, or can, feel my feelings.

I am not sure even I have yet properly felt my feelings. I was re-reading my journal this morning, and came across an entry, a few months after my transplant (June 2013) in which I sort of notice that I have not experienced strong emotions about it. Thinking back, the last strong emotion I had felt was the terror moments before the surgeons got going.

Bu they are there. In part I am afraid of them, and this has been the subject of quite a lot of discussion with my psychologist.

Poetry and prose can let those feelings out. For the moment I am reading the brave emotional “yawps” (watch Dead Poets Society again and look out for Ethan Hawke’s character Todd Anderson, who is afraid of himself) of others until his (Robin Williams) teacher pushes him to poetry. Hopefully I will find a way to yawps of my own.

All this is not to say I am not happy. I am. All this is not to say I am not proud of surviving. I am. All this is not to say I am not enormously grateful to have survived cancer, a second cancer diagnosis (a misdiagnosis) and the transplant. I am.

I am beginning to learn that we really are yin and yang, positive and negative. I am learning to embrace that. I am.

Now I need, like Todd, to learn not only to live through dead poets, but to become my own living poet. Good luck to others like me, I know in my soul it’s a noble quest.

Yoga

Two winters ago, tired of getting up to run in the dark cold, I began doing yoga in my lounge. I love it.

I have always exercised, and often done it off my own bat, from swimming through rock climbing and hiking to running. I might try cycling next.

I began to take exercise more seriously 14 years ago, after my first cancer diagnosis when I took a hard look at my lifestyle (not too bad) and changed the way I ate and looked after my physical self. It’s been fun, apart from those cold dark mornings (and there is some masochistic satisfaction in being tough enough to get up at 5.15am on a cold winter’s morning to run or whatever).

So, there I was the other day, standing in “star position” when something occurred to me: life requires balance, but balance does not require symmetry.

The star position requires that you stand on one leg, leaning to one side with your arms and other leg splayed so that you look like a four-limbed starfish, or perhaps someone in the middle of an arrested cartwheel (and then the other, later, while standing on the other leg). You do this, in my yoga “course”at least, for a minute on each leg.

That requires a fair amount of concentration, and here’s another yoga lesson: the less you concentrate on what you are doing the more you appear to be able to balance. Well, to a point. You have to concentrate to achieve a balanced imbalance (as it were). If you pick a spot to look at and allow a semi-meditative state, where you are not really thinking at all, hey presto: you balance well. Think you should move that leg? You wobble.

We all know we need to develop balance in our lives: work, play, family, friends, own time, intellectual stimulation, physical stimulation, spiritual development. There’s lots of limbs to that starfish! Sometimes, I think, we assume that we need to give equal time to each of these, and, because that is well-nigh impossible, we get anxious when we can’t.

Anyway, standing there in my star position I realised that sometimes one side of me is up and sometimes the other, and that although I have to make sure that all my limbs are in position, they don’t all get equal weight (from gravity) at the same time. And so with life, sometimes we’re studying for a qualification and work needs more weight (but not all the weight, if that happened our starfish position would collapse), sometimes we are training for a big race and physical training needs more weight, sometimes a philosophical problem troubles us, and thought requires more weight for a while. 

Yes, life is a balancing act, but allowing greater weight for something at a particular time is fine, so long as everything else you do, and should do, is allowed to act as a counterbalance.

And now, in a perfect example, I am about to shift weight to relaxation as the weekend approaches. 

Excellent!