Showing blog posts tagged with: life and other questions

Perfection lost

by Hilla Duka - View comments

fantasy whimsical forrest

I love change. I always have. It saddens me to think that because of everything that’s happened during their childhood, my kids will probably not be so positive towards change, but in my life - new circumstances are exciting! Leaving status quo is exciting. Trying new things, ideas, reading new ideas, learning, growing, all of that to me is life, the essence of living. Life never stays the same. For good or for bad.

Sometimes my family will have a go at me for always changing things interior decorating wise, or for the fact that this site has had a million different looks since I started it two, three years ago. It’s all true, but it’s because I love the change, not because I’m ambivalent. I think there is perhaps nothing more human than trying to achieve better than before, to improve or just try something different.

Lately to my delight there’s been a drawing frenzy at our house, somewhat sparked by me letting the kids order whatever they wanted me to draw and they could colour it. But I felt so deeply sad as I heard Jacob critically examine his latest drawing and axing it, saying “It’s just not perfect”. Of course it’s not! Pursuing perfection is dooming yourself to a life of never being good enough. No line we draw will be perfectly straight, and so what? Long live the wobbly lines, the mistakes, the not-good-enoughs! Why do we teach our kids to go after something that will only cause them unhappiness and doubt?

drawings of a hipster in a city and a girl walking a dog

Two completely imperfect doodlings that I will still say are good enough because they're mine!

So, this site has a new look, and a wobbly hand drawn header. I got to try using an off-canvas menu which I’ve wanted to try for a while, and use something I’ve drawn, and none of it’s perfect - thank heavens! It’s change, and that’s good enough I think.

Edit: this new layout truly is everything but perfect, as I ended up screwing up the editor, and now have to type html and have no way of uploading images... I'll work it out, sooner or later.


What it's really like to be terminally ill

by Hilla Duka - View comments

cuddle time with Milo

A while ago I my sweet cousin, also living with advanced cancer, posted a link to a story about what it’s like to be chronically ill. As she’s someone I really admire, and it’s a subject that touches us both, I read the story, and much agreed with the author's points. Only after a few days, I realised I was still thinking about it, adding amendments and removing some bits in my head. So here’s my revised version of what it’s like to be terminally ill instead.

 

You always feel like a burden. Well, technically your illness is the burden, but after a point it becomes very hard to differentiate between yourself and your illness. Obviously I don’t believe that I am the cancer, but having cancer becomes a part of who I am. The cancer is a sorrow unto all our lives, and I’m the one who has it.

Also, practically, I’m always more or less of a burden to others. When my bones ache and I see the pain in the eyes of my loved ones, reflected, magnified. I want to tell them it’s not so bad, it’s just physical, but in this, it’s as if we don’t share a common language, they don’t understand, our experiences have made us unable to understand each other. I find that there are lots of things like that, that I cannot explain.

The feeling of being injected with Natriumchlorid was one of the earliest. I found that I hated the experience, and tried to explain: “It’s like a horrible smell under my skin, but it’s a smell I can taste.” That didn’t do much in terms of understanding each other.

 

You are literally living other people's worst nightmare. Even most other cancer patients worst nightmare. Healthy people spend quite a lot of time and effort trying to be admired - whether it's for their looks, clothes, home, carrier or love life, the goal is to be successful. That option is beyond not available to you when you're terminally ill.

 

You have a whole set of dreads and horrors completely real to you that you can’t talk to anyone but your therapist about. As my father asked me if he could take my oldest son to Israel, I inadvertently blurted out “Can you not wait with that until I’m gone?” That did not go down well, I’ll tell you. People know what’s to come, but we can’t really talk about it.

 

Most of the time, you’re in pain, and you know it’s just going to get worse. And a part of you is forever checking, measuring, to try to judge how much you can take, how long you will be able to go on.

 

When you feel neglected, your first thought is: “It’s as if I’m already dead”. Yeah. That one’s hard. And unless you watch your thoughts constantly, it’s really easy to feel neglected.

 

You can't ever really be honest with people. "What are you thinking about?" is a question that shouldn't really be answered when the answer is likely to be "Oh, I'm just trying to imagine what my funeral is going to be like". Its a bit of a conversation killer... Or, being terminally ill means having the most rigid self control ever, to not think about those things.

 

There is no escape. At one point a friend of mine blurted out “I can’t do this cancer thing 24/7!” and while I really do get that - there are no options for me. I have to live with the cancer thing 24/7. And while healthy people can have great hopes and dreams for the future, the only thing you hope for when you’re terminally ill is a cure. A cure to be developed before you die. All the other dreams, you’ve already had to say goodbye to. So when people talk about how they plan to buy a house, in my mind I’m thinking about the house dream I had to let go of. 

 

But here’s the thing. Being terminally ill makes you strong. I thought I was strong before this, and that was nothing - nothing - compared to this. And it makes you good at being weak. It makes you a better person, and it makes you great at living in the here and now. And while I appreciate all those perks, all I really want is a chance to watch my kids grow up. You can have the new house, or the great car. You go on the trip to the Maldives, dive with dolphins or get the great book contract. I won’t mind, honestly, if I can just please, please, get to see my kids grow up. There is no joy, no wonderful moment, no second of any day that isn't tainted by the horrible, all-engulfing sadness of leaving my family.


Phantoms

by Hilla Duka - View comments

white berries on a winter branch

If you get diagnosed with breast cancer, most likely at first your life will fall apart. It’s the nightmare news that no one wants, and all of a sudden you’re living your own and everyone elses worst nightmare. On top of that, you get scheduled for surgery, and one of your breasts will be removed. Except, if you’re a stage four, there is no removal, no radiation. I understand going through surgery must be very hard, and then you might want to have a reconstruction, and a whole new mess unfolds. But when you’re a stage four, the tumour in your breast is not the problem - at least in the doctors eyes. It’s the spread that is.

 

So you’re stuck with the breast that’s trying to kill you, not really knowing how to feel about this body part. Even within the hospital environment, breastcancer equals a removed breast, so you constantly have to point out to doctors, nurses et al, that you haven’t had surgery, that you’re terminal. Or chronic, as I prefer to think about it. And every time you have to say those words, because someone didn’t read your file properly, it chips away a little at your soul. Your cheeriness sort of slides off a bit, something raw and wounded becomes uncovered.

 

I still have my breast, though for the longest time I didn’t know how to feel about it. Inside of it was a tumour, one that had spread and was trying to kill me. This part of my body - one that had nursed my children, that I had highlighted in deep v-necks and push-up bras - was still there, only it was doing a very good job of getting rid of me. I wanted it gone, I wanted it removed, but was stuck with it. Today, the tumour is gone, but the effects of the cancer will never leave me.

 

And in some ways, still having my breast intact has made me feel as if I’m not really a breast cancer patient. I still have my breast, I’m not to go to any mammograms. On the outside, I could have any cancer.

 

I don’t think of the breast as being there. In my mind, it’s gone. If the tumour is gone then the breast is gone. Only it’s still there. Kind of the same as my right arm, that has been rendered useless by lymphedema, after so many rounds of chemo. It’s in many ways as if the arm is gone - I have to learn to write with my left hand, can’t carry anything with it, the list can go on and on. Only it’s still attached to my body, painful, covered by a compression glove and sleeve, making me look a bit like Darth Vader, and much improving my Cyborg transformation. My arm and my breast are still there, but it’s as if they’re gone. It’s like a phantom breast and a phantom arm, to go with my phantom fears.

wheel tracks in the snow

Six months or fourteen years

by Hilla Duka - View comments

Ilir

A lifetime ago, or at least fourteen years ago, in a desperate attempt to save a failing relationship, I planned a trip to London for valentines day, and for the occasion I wanted to book a table at my favourite restaurant. So I picked up the phone, and a man working there answered. He had an accent I couldn’t place and a deep softness to his voice, and I hung up feeling strangely overcome with emotions, only I couldn’t place them.

 

Anyway, I went on that trip, eventually broke up with my then-partner, cried my heart out and thought I would never find happiness or togetherness (in my head they were so intertwined they were practically synonyms), stayed single and learned how to do everything by myself, and it was a long time until I actually met him in real life.

 

And if someone would have told me that day when I spoke to him on phone, that years later I would marry that man, that he would be the father of my children, that he would end up taking care of me as I have gone through the hardest, most unexpected challenges of my life, that he would be the one who’s always there for me, I would have thought them mad. Sometimes he drives me crazy, but when push comes to shove, he’s home to me. Today we’ve been married for six months.

 

Life takes unexpected turns.

 

Remembering and forgetting

by Hilla Duka - View comments

raindrops on a branch

It comes and goes, this dealing with cancer thing. Well, I mean, I obviously deal with it all the time, but sometimes I deal with it better than other times.

 

Sometimes I forget that I'm going to LIVE with cancer, that I won't die from it, that I'm supposed to become a bloody miracle patient. I feel sorry for myself and for my kids and Ilir and my parents and my brother. I wallow in self pity. I absolutely engross myself in sadness and death, doom and gloom, to the point where it becomes almost impossible to stop, to see another way.

 

And then something happens and it can be the smallest thing, but it just makes me realise how selfish and dramatic and destructive I'm being, and I will just stop, turn it around. I've had a bad couple of days, with my head trapped in unforgiving and unwanted futures, but I'm back now. I'm alive now, and I will stay here and now and not go dallying off to unforeseeable futures. That is, I will until the next time I forget.


Ups and downs, highs and lows. Life is a rollercoaster, and even more so with cancer.


Who, why, when and where?

by Hilla Duka - View comments

orchid in bloom again

I should have died when I was eight. If it wasn't for modern medicine I would have. One morning I woke up to stomach cramps. My parents sent me off to school, though after a few hours I was crawling on the floor in pain. They sent me home, my appendix burst, I had to have emergency surgery and I survived. It wasn't even a big deal, lots of people have had their appendix removed, but I've thought about it a lot recently.

 

And then, my brother at the age of ten went through the same thing, and as I had gone through it myself I could identify it, we got him to the hospital on time, even though we were at the time in France, and he survived too. Thanks to modern medicine we're both alive, we got a bit more time. I got to have three amazing boys, who will go on to have complete lives of their own.

 

Can modern medicine please save me again? So that I can look back and say I should have died in my thirties, but modern medicine saved me? What can I do to make that happen?

 

Why did my appendix burst, while the next guy can go his whole life with an intact appendix? Why did I get cancer, and not someone else? What is it that makes one person develop cancer, while someone else doesn't? And of course, the ever present question in my mind: can I survive it, as in live until there's a cure?

 

When do we develop cancer, really? Is it when we're knackered, still on our feet at the end of a twelve hour double, or on the dance floor at five am, completely hammered? Or in the gym early one morning? Why some of us and not others?

 

Is cancer for those who can't take the heat? Is it because I am weak, because I am a quitter that I got this disgusting sickness? Why was normal life too much for my body to handle?

 

I have no answers, only more questions...


Shabbat bliss

by Hilla Duka - View comments

The week has gone by so fast, some time spent at the office, some spent with doctors, and some nights spent with a poorly Jacob. And then came Shabbat, and though Jacob was still coughing we packed ourselves in our little car and headed over to my dad and his wife to be treated to Shabbat dinner!

kids playing with shiba

The kids were thrilled, as that meant getting to see the new family member, Ashi the dog. Or maybe not so new, my dad bought him a few weeks after we found out about the cancer. I figure even Freud and Jung would agree on that one. Anyway, Ashi - a Shiba dog about six months old, is turning out to be a very sweet person, one of my cats has taken a special fancy to him, and tries to meow and communicate with him every time he comes over. And of course the kids love playing and cuddling with him. 

Jonathan making tacos

Jonathan was of course keen on helping out with dinner, making the ever so popular and historically correct Shabbat dish of Tacos. Please observe the heavy satire here, but I don't really know how to make a lot of Israeli dishes, apart from hummus and falafel, and by having tacos, at least we know the kids will eat without complaining. 

basil leaves

There really is no better food than that which has been prepared by someone else! I love how when you cook yourself, you're always using the same herbs and spices, preparing the same dish in the same way. Then when someone else makes you food, they do it differently, and you get all inspired as to how you could change things up.

jacob, jonathan and Ilir in the sofa after dinner

Then of course came the obligatory food coma - collapsing in the sofas and putting on a movie to make the kids sit still for a minute or two...

rear view mirror

And all of a sudden it was way past the kids bedtime, the evening over, and we headed back home again. 

cemetary by Karolinska Sjukhuset

On our way home we drove by the cemetery, which was enough to set me off, and with tears rolling down my cheeks and thoughts of death pounding in my head, I tucked the kids up in bed, sat down in the sofa with a glass of wine, thinking to numb the feeling of doom and gloom that clouded the end of the night with some mindless facebooking. Only to see the first post in my feed, announcing the death of one of the women in my breast cancer group. Tearing up all over again. 

 

When I say that death has joined our lives this year past, I mean that quite literally.