Good days and bad

by Hilla Duka - View comments

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How can you stay so positive? It’s not just once I’ve had that question, and I hope, if my dreams of becoming a miracle patient go pear shaped, that my kids will remember me as someone who was happy. Because I am. I am and I’m not, you know? It’s a landscape of extremes. I am so incredibly happy for what I have, more so than ever before. It’s in some ways as if the cancer diagnosis put new glasses on my nose, and I can see everything so much clearer, feel so much stronger. I love my life, and the people in it with a new sort of ferocity. I never knew how much I would be willing to sacrifice, just to stay around with them a bit longer. As parents, we often say how we would give an arm and a leg for our kids, now I get to see how true that is.

Milo and Jonathan

And at the same time, trust me, I’m not so bloody happy all the time. I cry, so unbelievably much, it’s insane I haven’t dried up yet. It’s inconceivable to me that I will die, long before my time, and not see my kids grow up, not be there for them. And when the realisation hits me that this is a likely scenario, it smites me down every time, and there I am, floored, crying my eyes out and making sounds that don’t belong in a human mouth. I can live with my present, I can live with looking odd and being in pain, but I can’t live with the idea that I will leave my loved ones. So when that idea takes a grip on me and holds me in it’s claws, I’m not so positive anymore.

 

I’ve lost quite a lot of functionality in my right hand. Chemotherapy induced neuropathy, it’s called, and apparently it’s here to stay - at least for as long as I am. I am, of course, right handed. I can more or less type on a computer, though not write by hand. I can’t draw much, or crochet, and I really shouldn’t hold a cup with that hand. It hurts, or rather aches, quite a lot of the time, and it’s very swollen. Still, I don’t care. Take it - take my arm! I want to shout at the cancer, or the chemo - it’s very hard at this point to know who or what I hate. Take it all, if you will just leave me with some life left in me.

Ilir and Milo
These are the thoughts that go through my head, especially as I recuperate after another round of chemo. When my days are filled with vomit tasting and aches and pains and loneliness and mind tricks. And then I pick myself up, after these long days are over and I finally have some energy again, and I go out and have a coffee with you, and you ask me how I can stay so positive. This is how. There are good days and bad, even if I don’t show them all.


Wigging it

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I came into this chemo experience with very strong opinions about wearing a wig. Well, there’s a surprise for you, when did I not have strong opinions? Anyway, I felt quite strongly that I shouldn’t have to change to make others more at ease, I felt that wearing a wig was an uncomfortable way of trying to hide your illness, faking it, and I wanted no part in it. I would be bald and comfortable. In some ways I still feel that way, but I’ve also learnt to see the other side of it. Perhaps because comfortable just isn’t on the map anymore.

 

I will sometimes wear a scarf and sometimes go bald, depending on how I feel. If my scalp is really sore and itchy I’ll wear a scarf both to hide it and protect it, while if I have a bit of a stub at the moment and don’t have a headache I’ll go bald. People who’ve previously seen me bald and then see me in a scarf often question it, like “Oh, but I thought you were ok being bald now, why are you wearing a scarf today?” Because it’s not only about how comfortable I am about having no hair.

 

But wearing a scarf means combining it with clothes, choosing one you want for the day, and then choosing a way of tying that you like and that feels comfortable for the day. All of these choices that you never have to make if you have hair. And then the scarf sits uncomfortably and the headache you were trying to avoid by putting it on comes on in full force from the knot of the scarf… There’s just no way to come out on top here.

 

And to be honest - the longer I do this cancer journey, the more I long to be well. I just cannot put into words how I yearn to be well. I would give anything to just not have cancer. And these days, I can understand why one would put on a wig, just to get a chance to escape from being seen as a cancer patient all the time, pretend for a little that life is as it was. As it should be.

 

So, six months into chemo hell, I made an appointment to try out a wig. Today was the big day, and off I went, half dreading the experience half excited and hopeful. And even though it felt weird, the wigs were actually a lot more comfortable than my scarves, which I had never thought. It was strange to see myself with hair again, but comforting, in a way. We didn’t find the exact same shade that my hair used to be, but this one’s fairly close. I didn’t get one today, but I probably will. If you see me suddenly having hair again, feel free to laugh. I do too - I laugh at the absurdity of worrying about what’s on your head when you’re fighting for your life. I laugh at the duality of it all - my life and my thoughts have become some sort of hellenistic saga of opposing concepts, that oftentimes seem to negate each other…

Oh and that arm you see in the picture? That's one of the many side effects I'm having to chemo - It's swollen beyond belief as you can probably tell, aching, and my fingers seem impossible to maneuver with any kind of accuracy... Oh chemo, how I love and hate you!
 
 

Chemo verdict

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Today came the verdict - six months of chemo, my whole life altered at the very core, and the score? It seems it could be 0 - 0. It could be that I have scored a bit better than the cancer, but after half a year of focusing on the goal and mentally picturing becoming the miracle patient, basically I find out that we don’t even have the instruments to tell if I ever get there.

 

The blood count has continued to go up - which is a good thing and should be seen as proof the cancer cells in the bone marrow are receding. At least that could be the reason, and since no one knows anything, that’s what they tell me to believe. The jury’s out when it comes to the metastases in the skeleton. Apparently, the only way to know if I’m in remission is to see when new cancer cells start growing there. If that doesn’t happen for a few years, then I was in remission for those years. So, no news, really.

 

The only good news is the fact that I have no new metastases. Which I really shouldn’t have since I’m on chemo, but still something to be grateful for when there isn’t much else.

 

I think a lot about my grandmother these days. She was 88 when she was diagnosed with cancer, and assured everyone she was quite done with life, and didn’t mind going. I wonder if in reality she felt inside as I do. I think that she must have had moments when the sadness took over, and she broke down in tears at the thought of leaving her children, her home, her body. How can you ever truly be done with life?

tel aviv by night

I have so many things I still want to do! I don’t because my bleak future restrains me, and I don’t want to leave Ilir with too much of my mess. Most of all, of course, I want to be there with him to watch my boys grow up, to help them and support them as they carve out their place in this world. But other, smaller things too. Like owning a dog again, getting a cottage in the countryside and go there on weekends, going to Israel and go for a late night swim in Tel Aviv. Getting strong again and take great long walks in the forrest.

 

But the cancer doesn’t care about what I want. It didn’t care whether or not my grandmother was ready. It rages through my body just as I rage against it. At the moment we're at a stand still. So cheers, here’s to No Progress. It’s not the miracle I had hoped for, but at least I’m still not dying right now either.

 

Burn brighter

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This morning a young woman died. She was a mother and a wife, beloved by so many, and she had fought long and hard to keep her breast cancer at bay. As I read the update by her husband, big warm tears fell down my cheeks, this overwhelming sadness that this day had to come. I had never met Ewa, but she warmly welcomed me into the sad society of cancer patients when I was first diagnosed, gave advice and offered experience. I watched her appear on Swedish program Agenda, to ring up the debate on why different countries have different rules on which medicines to give. She spoke of her friend, who didn’t get the same medicine as she had, and who had now passed away. She spoke of how she called her friend one day, but her phone was answered by her husband, who told her that her friend had passed away during the night. And now it is her own husband who has to inform people that it is she who has passed away. I think about the fact that unless I become the extreme miracle, one day Ilir will have to post the last post for this site, to tell you all that I have died.

 

The unfairness of this illness overwhelms me at times. We are young mothers, juggling careers and kids and a love life and friends, and this horrid disease kills anyone, no matter how loved or important to others. Before their time, without having been given the chance to play out their part. And left behind are mourning partners, children too small to understand, or at least should be too small to be forced to understand, brothers and sisters who’ll battle this death for the rest of their lives, living on with survivors guilt, mothers and fathers who shouldn’t have to bury their daughters, friends left hollowed.

 

When I first found out I had cancer, my initial reaction was “Not me! This can’t be right, I have small children to take care of, to be there for!” I have sadly learned since then, that cancer doesn’t care. And no matter how I rage against it, I can’t change this. I can’t change it, but I can’t accept it either.

 

I spend so much time meditating these days, and it’s truly brought me closer to understanding the vastness of life, of mind. I think it’s extremely hard to discuss mental/ spiritual experiences - if the person you’re discussing it with hasn’t felt anything like it, it’s hard to communicate and really get across your experience, so for now I’ll leave that area untouched. At the same time, much of what I write here is for the benefit of my boys in order for them to one day get to know more of me, so one of these days I will have to try to write that down. For now, I’ll leave it with saying that my meditating experience has left me sound in my belief that it is not the person leaving this life that suffers, but those left in it. Today, my thoughts go to Ewas family, indeed to all the lives she touched, that will be hollowed by her absence.

 

It is my firm belief that one day, cancer will no longer be a life threatening disease. That one day, there will be effective treatments for it, but we are not there yet. Only by allowing greater funding for cancer research can we get there, and while we wait, people are dying. Please consider donating to cancer research to help speed up the process! Help us burn brighter, for longer.  


Building spaces

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I’ve lived in this flat for longer than I’ve ever before lived in one house. In some ways I love it to bits, and in some ways… not so much. It’s a two bedroom flat, mainly planned for a couple with an extra room for guests or a small baby. As in one. One small baby. Definitely not three little tykes.

 

I switched rooms with the kids years ago, to give them the big bedroom, but thanks to a very bad layout of the room, even though it’s a decent size room, it’s been impossible to plan it for three kids. Or maybe it’s just that it’s really, really hard to fit three kids into one room. Still, I don’t buy into that whole idea that all kids must have their own room. I think everyone needs to have a space that is their own, but I remember how I loved to share rooms with my brother and was really upset when I had to move into a room of my own. And as adults we fall in love and move in and no one questions the idea that we should share bedrooms.

 

We’ve been looking at bigger flats and considered moving, but in order to stay in the same area, we would have to pay so much more money, it’s ridiculous. Basically we’d add one half income in living expenses, just to get one extra room, never mind two, and with me being ill and plans for the future being uncertain to say the least, it was just off the table. So, back to the drawing table it was. I knew there had to be some way to make it work, to give each child a space of their own, and still have some floor area left, and a place for them to do homework and draw and stuff. There just had to be some way to make it work.

I pride myself on being quite imaginative (amongst other things. I’m extremely good at priding myself in general), and able to think up clever solutions. Show time. Time to put my money where my mouth is. So I thought long and hard, and finally came up with this idea, which is basically like a bunk bed for three, but in two different directions. And then somehow (either I should have gone for a career in sales or he must really love me) I convinced Ilir to build it. I felt pathetically old fashioned gender wise here, but since I these days I’m ridiculously weak, it really did feel safer to let him handle the building bit.

 

 

The plan was almost too simple - take two of IKEA’s most popular tiny bunk beds, and then put one on top of the other. Basically, sawing a bit here and changing a bit there for a longer one - or so I thought. It took an entire day, and then some. But the end result is great. We still have some work planned for next weekend (I’m lying, we have enough on our my todo list to keep us occupied until the end of next year - by which point I will have a whole new todo list) - painting the whole thing (and the walls) and finding a small arm chair for the cozy corner and generally making a hell of a lot of hygge in there, but at least now I can see where it’s going, which feels great. A few steps closer to the goal - making sure that all the kids have their own space, whilst not breaking our bank account or moving to a cheaper neighbourhood.

bunk bed for three kids room ikea hacks
 
As you can see, still a long way to go before it's interior-decorating-magazine ready, but you get the general idea. One, two, three kids sleeping on top of each other. Floor space. There's a desk and stuff too, on the other side of the room. Very organised. I'll show it to you when it's all painted!
 
 

Hygge

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There’s a danish word Hygge: it means something along the lines of cosy and comfortable. My brother told me about this word as he joked that this is what I’ve become obsessed with: making hygge. I think he’s right in a way: Since I took ill, I’ve become much more interested in decorating, and the changes at least when it comes to direction and style are quite clear.

I grew up with a dad who was a newly graduated architect - keen to put his mark on the world and with very strong ideas about what was good design. Things were supposed to be modern and clean, no extra adornments anywhere. The walls had Pablo Picasso prints, and Théo Tobiasse lithographies. Modern, modern, modern. How very strange that I wanted something completely different. And a long time it took me to admit even to myself that I liked the complete opposite - old furniture and pillows with flowers on them. It wasn’t until I got the very real reminder that I didn’t have forever to grow into myself that I decided to not care that I was supposed to like polished steel and modern lines, and thus threw it out. Now, I only put into my house what I really like - and I don’t really give a damn what anyone thinks of my style - because it makes me happy.

 

And in the evenings I light candles and make as much hygge as I possibly can, and I cuddle up with the kids in the sofa and feel my heart lift with gratitude that I got this day as well, this love too.

 

This round of chemo has been so hard emotionally, so taxing. At times I fill with this vast sadness, how much I hate this illness, how fervently I wish I could be well again. When nothing else helps, lighting some candles, cooking something nice and making hygge seems like a good way to at least try harder to enjoy the present.


The danger of helplessness

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It’s spread beyond the lymph nodes. We found cancer cells in your bone marrow. And in your skeleton. She didn’t need to say the next sentence out loud, indeed she didn’t, but I still heard it as loud as if she had. You’re going to die from this.

 

There was no real discussion about treatment - she told me I would have a series of ten chemo sessions, I asked about the name of the different drugs  and she told me. And I asked the question I would guess everyone who gets this kind of news asks: What can I do? How can I improve my odds? Her answer was probably more devastating than the news of the cancer: There’s nothing you can do. The helplessness floored me. Desperately, I said: But I smoke! Surely I should quit, right? How about exercise? Should I work out? Go on long walks? And food, should I eat better? Surely there must be something I can do to help my body fight, to win as much time as possible, to become the miracle patient? And again, those kind eyes and harsh words: There’s nothing you can do. Go through the chemo, that’s all. It doesn’t matter if you smoke, eat what you like. And I heard the unspoken words: You’re not going to live long enough to reap the benefits of stopping smoking, enjoy what you can the little time you have left.

 

Once the initial shock of Finding Out abated, I started reading up on how diet and mental outlook affects cancer. I started drinking weird vegetable drinks, and immediately felt stronger and more energised. This spurred me on to continue making changes in my diet, finally quitting smoking, exercising as much as I can. I read up on the effects of refined sugar and white flour, and though I still eat some, I’m much more careful with it, and I can very clearly feel the difference.

 

I was afraid that these changes to my diet would be crippling to everyday life (I was already a vegetarian), but trying harder to eliminate things I believe to be harmful has actually lead to me being more interested in cooking - both for myself and for the kids. I enjoy looking for healthy treats for them for when they get home from school (usually starving), and even though they complain a bit about my obsessiveness, they will try everything I cook. Sometimes it’s a hit (homemade berry soup!), other times a terrible miss (the sugarless chocolate mousse I did for Shabbat this week...), but it’s always fun, I learn stuff, and all of us stay away from strange preservatives, e-numbers and sugar added to absolutely everything. Most of all, I don’t have to feel so very helpless, I feel as if I am at least doing everything I can in order to help my body fight. And as an added bonus, I get to teach my kids better habits when it comes to what to eat and how to take care of yourself.

 

My amazing therapist left work at the oncologist to start training doctors in how to give patients bad news. Here’s my input: stop telling people there’s nothing they can do. It creates this horrible feeling of helplessness, it’s toxic. Tell them to stop smoking, eat right and exercise. Tell them to meditate. It really can’t hurt, but it could potentially do them a world of good. And even if food, tobacco and meditation does nothing in the way of improve your odds, it'll improve your life quality, as you feel less helpless.