I measure it in milimetres, in minutes of love

by Hilla Duka - View comments

ridiculously lovely proper champagne

Last week ended with a planned visit to the oncologist - I will go every three months, but this was the first one since the end of chemo. Basically, it would tell us if my body's responding to the hormonal treatments, so obviously I was quite nervous. It didn't help that the doctor who did the ultrasound a week previously had complained that two of the lymph nodes in my left breast were enlarged - she had me worrying non stop for a week. But all was well, or at least as well as I can ever expect. No sign of anything growing. Those have become the words I live for, once every three months, no sign of growth.

 

 

These last three months since I finished chemo have meant big changes in my life. I'm back at work 50%, which is amazing, and something I'm really happy about. Unfortunately, my body hasn't recovered as well as I hoped that it would: my joints are stiff and my back hurts. Stairs are difficult, both up and down though for different reasons, my arms fall asleep often and I'm pretty much stuck with morphine and other pain medications every day. Basically, I thought I’d feel closer to well once I was done with chemo but it turns out “well” is as far away as it ever has been, which sucks. Thankfully I have work mates and family that are all ridiculously understanding and sweet to me, so today as my eyes teared up from pain I couldn’t cope with, my lovely husband dropped everything to come and get me, my lovely coworkers were sweet and understanding and my drugs and bed were more welcome to me than ever before.

 

 

Still, I have to repeat it to myself: it was good news. Nothing is growing now, so I have won another three months. That means another three centimetres of hair growing on my head (I’m getting quite shaggy already!) another few months of rest that my body might get stronger, more time for lovely moments with the people I care the most about. I will make plans for the summer, I will see the one year anniversary of finding out about the cancer. At the time I thought I was practically dead already, but now it’s close to a year later, and I’m still here. Altered, to the point where I sometimes don't even recognise myself, but I’m still here.

 

 

I’ve gotten quite good at being grateful for what I have, so the few words - No sign of growth - deserved a bottle of a lovely 11 year old Champagne, and toasts and laughter all day long. It might be nothing to a healthy person, but to me it is eons, it is an ocean of possibilities, it is what I will forever be asking for: It is more time.

Champagne glass

 


happy little wonderland

by Hilla Duka - View comments

ink drawn manga cat

In my teens I opted for art school and had great big dreams of becoming an artist, perhaps illustrating stories or something. I spent three years trying to learn, and left feeling quite certain it wasn’t for me. I drew little childrens drawings, happy manga chibis cuddling, I drew little worlds where everything was lovely and happiness ruled. I still to this day remember my art teacher, this sturdy britton who took himself most seriously looking at my work and telling me “Happy people can’t make art”. I took that to heart, decided I’d rather be happy than an artist, and went on with my life.

 

Then when I had kids I started doodling for them, little animals in some ipad vector app, and then as I found out about the cancer, I started drawing again. The things I’ve always drawn; manga girls kissing, happy foxes and gnarly trees. Ink on paper, nothing more. The kids love colouring them, and sometimes they get inspired and draw themselves.

ink drawn little manga fox

Maybe my art teacher was right, maybe happy people can’t make art, surely no one would consider the things I doodle art, but as life becomes something large and threatening, a looming shapeless monster of fear resembling only your worst nightmares, it feels good to balance that out with creating peaceful happiness, girls in love and magic forests where nothing bad can ever happen.

two girls kissing drawn in ink

And unlike the eighteen year old me, I’ll not apologise for not drawing huge agonising art. That’s just not me. The drawings I make reflect something inside of me, and frankly, I think the world could do with a bit more magic and a bit less agony and pain.

 

Switching off

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golfängarna lake sundbyberg

Sometimes I have to turn it off. I take a pil and a deep breath and I all let the emotions just fall away.

 

Like when Jacob hesitantly says “They say you can die from cancer, mum?” And Jonathan - cocky, sure of himself, safe in his knowledge, answers “Not from that type of cancer, maybe from like heart cancer, mum can't die from her cancer, right mum?”

 

And it's bedtime and I really can't start to tell them horrible truths now, and how would they deal with it anyway and so I mumble some half truth, about how lucky I am to be living in a country with good medicines and how well I'm responding to treatment and how I'm not planning on leaving, and I wait until they're asleep and then I stumble out and can barely see for all the turmoil inside of me, I feel my way until I find my pills, I take a double dose because I need to feel nothing now, nothing at all. Because I feel both like a traitor and like a protector, I feel both very mortal and as if the idea of me dying is ridiculous, I feel everything and everything and I need to feel nothing.


I hate cancer. I hate it so deeply, with a vengeance for how it's hurting the people I love.

tulip closeup


Perfection lost

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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

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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.


Being odd

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Jacob up close

By chance I happened to be at school today as one of my kids had a complete breakdown. As I soothed him, held him in my arms and helped him take deep breaths, the story unfold. Two other kids had made a drawing, of me. An exaggeratedly ugly drawing, showing me fat, with one eyelid hanging and no hair on my head. They were showing it to my son, saying how it was me and how strange I looked, and my son completely broke down.

 

My heart broke for him. Kids can be so mean, so thoughtless. How much more does he have to go through, this little man of mine, who’s already been through more than a child should have to deal with, when we already know that rougher times are ahead? Does he really have to deal with this as well?

 

I’m quite used to being the odd one out, but I’ve been spoiled in the sense that I’m not used to this affecting the kids. It’s a horrifying experience.

 

Fears and consequences

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Flowers in the hospital

The past week I’ve spent in the hospital, in the oncology part that I fear the most. Why was I there? Because I let fear take over my decisionmaking.

 

A week ago I finally gave up trying to pretend I only had acid reflux and headed to the emergency room, with what turned out to be an inflamed esophagus. A week I was there, hoping that maybe tomorrow I’ll get to go home, maybe tomorrow I could drink something, be in less pain. It was a week of no eating or drinking, anything. Of pain, fever, inflammation and infection, of longing and missing and hoping.

lovely flowers from my coworkers!

It turns out I’m allergic to one of my daily medicines, one I opted for taking as a pill every day rather than have to go in once every three weeks to get as a shot. Because I didn’t want anything that reminded me of doing chemo. My fear of chemo put me in the one place I fear the most, the oncology section.

 

Apart from how I hate being ill and stuck in a hospital (I actually went into a nervous fit when the nurse I spoke to on the phone said I would have to be committed!) it's been interesting and horrible to see how my absence has affected the kids. I saw them several times, and was even home for an afternoon, and it was subtle but a definite difference in how the kids behaved, the family feeling not really at a high. 

 

I missed the sensation of water flowing down my throat. I missed eating. I missed being home with my kids, and I missed taking pictures...At night I dreamt about snapping amazing photos, marvelling at the quality of my own pictures, at the sheer luck of being in the right place at the right time. Only to wake up and realise I never took those photos, that I was stuck in a boring and uninspiring room, staring at my own feet and a gray wall. It was a horrible week, one I hope I never have to live through again.


I hope that I will remember not to let fear rule my decisionmaking in the future, and I hope I can remember a bit of how grateful I feel right now, to be home with my kids, to be able to drink some water, eat on my own again. Truly, I'm so thankful to be home, and on the mend again!

Our cat Aidan about to leap