Showing blog posts tagged with: life and other questions

Magic and heroes

by Hilla Duka - View comments


I’ve just finished our bedtime routine. The kids all tucked up in their beds, with kisses for each lovely boy, me telling them I love them, to sleep well, and I’ll see them in the morning. I’ve read the story we’re reading for bed time right now, it’s non stop magic and little boy-heroes and happy endings. Milo’s sleeping on my arm, and I hear the sound of Jacob and Jonathan breathing, deeper, slower, telling me they’re falling asleep as well.


I stop reading, mark the page by the standard non-library-friendly dog ear, and put it away. I turn to face my little Milo, my face close to his. I look at his lovely long lashes as they grace his cheeks and flutter as he dreams. I feel his breath on my face as he exhales. His heart beats fast into my sick breast, and I feel my own respond. It aches acutely as I feel the loveliness of his being so close to me. For a minute, I think I will surely explode from these feelings. The love, the gratitude, so strong in my whole body. I made these boys, and they’re so beautiful, so lovely as people, and smart and funny to the boot. Such grace, so much gratefulness.


I slip out of Milos bed, turn to look at the lot of them - asleep, peaceful, dreaming dreams of adventures and fairy tales with wonderful endings. I quickly slide out of their room, before the sound of my crying can disturb them. Into the kitchen I go, and with a cup of tea, I let go and let the tears fall freely. How can they be forced to go through what lies ahead? How could I ever let go?

Shana tova

by Hilla Duka - View comments


This week was the Jewish new year, Rosh Hashanah, and though I don’t normally fuss much unless my dad’s around, this time it felt important to celebrate. It also happened to coincide with me being half way through treatments, also worth celebrating. It’s a whole new year, 5775, and I hope so much that it will be a sweet year, a year of better news, than last year. As is traditional, we dipped our apples in honey, and I might have prayed more fervently than usual for a sweet, happy year for all of us.


Rosh Hashanah is followed by ten days of atonement, and though I’m not religious, these days have always held a special place in my heart, mainly because they make so much sense to me. The days that follow new years is a time for reflection, looking back on the year that passed, on your actions. It’s holding yourself accountable for the mistakes you’ve made, and apologising to the people you’ve mistreated. The idea is that god enters the names of those who will live on new years, but gives people these ten days to change his decision. If you’ve atoned, repent, and done good deeds, he can still change his mind and put your name down for the year to come. Needless to say, this year the holiday holds a new meaning to me.


So these past few days, I’ve spent looking inwards, trying a bit harder than other times to align who I want to be with who I am, how I want to act and think and behave. I’ve changed so much in the past few months, it’s sometimes hard to even recognise myself.


Thankfully I’m now past the most horrific days of treatment no 5, my strength returning, my head clearing, and the nausea gone for this time. I luxuriate in the energy returning to my body, in the fact that I can do math in my head once again, and that I can follow a conversation from start to finish once more. Everybody always says it’s the small things that matters - who knew they were right? My heart fills with gratitude when I think that I will have almost two weeks of feeling this well before it’s time for my next round.


It seems my reaction to the chemo is different for each time, strangely enough. This time, I felt affected almost as soon as I left the hospital, my head drowsy and drugged, my body weak and toxic. Usually so far, day one and two have been fairly easy on me, but this time I was quite broken down. Day Three, the dreaded Day Three, came and went, and perhaps because I was already so affected, it didn’t seem like the worst Day Three I’ve gone through.


I try to take some comfort in knowing that I’m half way now - I’ve managed five treatments and I’ve another five to go. I still haven’t heard of anyone receiving as many as ten rounds of chemo, the maximum I’ve heard of are six. When I consider how much these five turns have altered me, it does leave me a bit fearful of what I’ve ahead of me. How much will the next five treatments take, how will they change me? What kind of person will I be when at last I’ve done all ten courses?


And as one always does at the beginning of a new year I’ve made an effort to be extra healthy. I’ve started to make super icky drinks, ones with celery, cale and beetroots and stuff in them, and I do feel like I have way more energy now than before. It might just be the fact that my blood counts are better, or maybe the drinks really do help. In any case I’ll keep drinking them, anything I can do to help my body have the best possible chance to fight. And ironically, physically I feel better now than I have all year, even way before I got the diagnosis.

One of the best things anyone told me since I found out was “Accept the diagnosis, not the prognosis”. I try to live by that, though it’s sometimes harder than other times. On the one hand, it makes perfect sense - I don’t feel like I’m sick, and I know that I’m strong, so why shouldn’t I be different? On the other hand, it’s very hard to ignore when you read how long people with my kind of cancer lives. And while on one hand you have to stay positive, you also have to get used to idea of dying, to try to wrap your head around it. It’s a balance hard to perfect, how much to believe and stay positive, and how much to accept. I’ve promised myself to try to let these thoughts be while we’re away, to simply enjoy the moment, and not think too much. I don’t know how well I’ll be able to do it, but I will at least try to only be present in the moment, to create some happy memories for all of us.

This life of mine

by Hilla Duka - View comments


When I was a teenager, I suffered from hypnophobia: as bedtime approached, I was sure that I would die in my sleep. It didn’t worry me so much, I don’t think I’ve ever really been afraid to die, but leaving people mourning me worried me, and so I did the only rational thing my brain could come up with (well, as rational as one is capable of being as a teenager) - I refused to go to sleep. Certain in the knowledge that if I was not sleeping, I couldn’t die in my sleep, I roamed our home at night, trying desperately to stay awake, and then unfailingly falling asleep somewhere really strange - on my windowsill, at the bottom of my parents bed, at our kitchen table - anywhere that wasn’t my bed would at least be less dangerous, I felt.


My parents weren’t too happy to have a teen ghoul roaming the house in the small hours of the night, and tried everything - punishing me, bribing me… Actually, they tried pretty much everything except for asking me why I wasn’t sleeping. Eventually, I just gave up. I figured if I couldn’t make anyone understand this very real threat to me, why should I be bothered myself? And so I went to sleep, still sure that I would die in my sleep, but no longer concerned with those I would leave behind. Today, I’m not a teenager anymore, I don’t have hypnophobia, and I can never stop being concerned for those I leave behind. My fears are no longer the illogical machinations of a teenage mind, but very, very real. But then, so is my determination to fight. To survive, for as long as I can, and as well as I can.


As my children went through their fear-of-death phase, I calmly and surely told them not to worry about it yet, that it would be many years yet, before they were touched by death, and by that time they would have all the tools needed to deal with it. I told them about how my grandmother had died, old and tired of life, and how we had spoke before her death, her calmly assuring me she was ready for this and telling me not to worry. And how, even though I was sad, I had been ok with it. She was 88 when she was diagnosed with pancreatic cancer, and I didn’t want her to suffer. Her husband and almost all of her siblings and friends had already died, and she explained that she was fine with following them. And my kids calmed down, feeling sure that no death was imminent, that they were safe.


But I am not 88. I have not had the time to raise my children, to see them grow up into wonderful new adults, maybe forming new families themselves, finding their passions in life, their place. I want to be there for that. I need to be there. I am not ok with dying. Even though cancer has ravaged my body, leaving it in some places broken, and even though chemo is sometimes hell and has changed and taken so much from me, I still want this life. Even though there are days when I can hardly even get out of bed, days when sadness at the unfairness of it all consumes me, even though there is pain and aches and worries, I still want this life.


So I fight. I fight by trying to take as good care of my body as I can, trying to stay emotionally connected - to allow the hard thoughts as well as the good, positive ones. I fight by not allowing the effects of the cancer or the chemo to limit me too much, by doing things anyway. I fight by enjoying the here-and-now, counting all the things I’m grateful for in the day as I go to sleep. I fight by waking up in the morning and not focusing on where it hurts, but on the fact that I am alive, and happy to be so.


I fight to stay with my kids, with my husband, in this body, this life of mine. I know that I can only do this for so long, and eventually I have done all I can, and I can only hope that by that time, someone else has done all that they could and come up with a cure, or a new way to prolong my life. Quite like Piglet in that chapter with all the rain in Winnie the Pooh, when he’s tossed the bottle and knows he’s done all he could to save himself, and now it’s up to someone else. That’s not a likeness I would have ever thought to make - comparing myself to Piglet.


I will not be happy with five more years or ten - I want more. And if I am greedy and that is wrong, then it is only because of this: I love my life, my family, my boys, much too much to be ok with leaving.


People are people

by Hilla Duka - View comments


To my dear, dear boys: I’m sorry. Yesterday was election day here in Sweden, and of course I went and voted. I voted for a Sweden where people are not excluded because they have seen wars and hardships. I voted for a Sweden where everyone would have the same chances, where the world we leave to our kids is not polluted and filled with toxins. For a Sweden that would be better than the Sweden I grew up in. Sadly, almost 13% of this country’s inhabitants voted for something else. A country where we don’t see people as people, regardless, where those who’ve been through the worst should not find a safe haven but be turned away.


I have always told you that you are, first and foremost, people. You are Jewish because of me, Muslim because of your father, and members of this world most of all. I hope that you are too young to remember this election, and I hope that in four years time, things will have changed enough for people to realise that by putting yourself before everyone else, effectively there will come a time when you yourself are left out. That people are people, and our obligation as humans, if we want to stand tall and be proud, is to care for the sick when we ourselves are well, to care for the old when we are young, to welcome those who’ve escaped the hardest places in our world, when we ourselves have been blessed with a safe haven. This is the only way that we as people can walk proud, and it is also the only way we can hope that when we fall ill, someone will care for us. That when we are old, someone will care for us. That if our safe haven of a country will one day turn into chaos, where violence rules, someone will open their door for us.


I have willingly, in a planned way, left my home and my country to start over in a new place. It was still unbelievably hard for me. I had doors opened because of where I came from and how I spoke, rather than slammed in my face for it, and it was still so tough. I will never believe that anyone turns and flees their country in a manner that endangers their lives, just for the fun of it. And I will never stop believing that those who do, should find help, an open door, and the means to start anew. Because it will still be unbelievably difficult.


13% voted for a racist party, but I do not believe that all those 13% are actually racists themselves. I believe they voted out of unhappiness with the politics and politicians, and I can relate to that. I believe they voted out of a feeling of isolation, of being small and unimportant, and having very limited hopes for their own future. I can relate to that. I have very limited hopes for my own future. But we as people have a choice - we can choose to become petty and angry or we can choose to fight for improvement. But no improvement ever came from choosing pettiness over inclusion, from choosing the passive-aggressive cold shoulder over dialogue.


I hope that you will grow up to become adults who will stand against racism and injustice. And I hope that in four years, when it’s time to vote again, I will still be around, to put my vote to a party that is dedicated to fight racism and injustice, that will fight for equal rights for men and women, that will fight for a better, cleaner, safer world.


The art of living

by Hilla Duka - View comments


In June 2014, my life changed forever. I finally got to see a doctor who took all my strange symptoms seriously, examined my breast and my swollen lymph nodes, and who answered me gently, but made it clear that cancer was a real risk. The next day, after I had left some blood samples, a doctor called me and ordered me to go to the emergency to get a blood transfusion. As my doctor’s office and the emergency didn’t have the same data system, my doctor’s office had faxed my papers, and as I signed in to the emergency room, I was given those papers, to give to the doctor I would see. Naturally I checked them, and from the statement and values it was clear to me that I had cancer. The next day, I was told that it had spread to my lymph nodes, and a week later that it was also found in my skeleton and bone marrow, meaning that it was stage four cancer, with no way of ever being cured from it.


Since then, so much of what it is that I’m coming to terms with, is a question of learning how to live with death as a part of life. This is not something we’re forced to do in this day and age, and learning how to is alien and stressing and strange. My reality is that the best I can hope for is that my body can manage all ten chemos now, and that the cancer cells can't, and then… Well, yes, then it’s the question of what then. Basically, after that, it’s living with death around the corner. Even if (or when) I manage to get through all ten treatments, and they give me the amazing news that they can find No Evidence of Disease (NED), the rest of my life will be spent worrying about some lump I’m feeling or a pain in the side or whatnot. I’ll go on checkups, and when I get all clear and they tell me they can’t find anything, I’ll celebrate. And then the next day I’ll start worrying about the next checkup, the next lump, until one day they tell me they can find new spreadings. Coming to terms with this kind of future is taxing and difficult and horrific, and is not something I would wish upon anyone.


I’ve done my fair share of trying to negotiate with this unarmed weapon pointing at me, hell - I’ve probably done most peoples share of that. I will willingly, gladly, accept this future as long as there is a future and it’s long, but simply accepting it isn’t the same as understanding what it will mean. It’s a bit like when parents tell someone who doesn’t have kids that they’re tired, and that person goes ‘Yeah, I totally understand’. They don’t, because you can’t unless you’ve been there. It’s not that they don’t want to understand, it’s just that unless you’ve stood there with the baby that just won't stop screaming unless you carry it and rock it at exactly the right pace, while you’re legs are aching and you’re ready to fall asleep standing up, indeed walking around, for the fifth night in a row, you really can’t get it. I think it’s the same now. It’s like I’m standing on one side looking into this thing that will hopefully be my future, and trying hard to accept it and understand what it will be like, only I can’t really understand it yet, because I’m not living through it yet. Almost, but not really yet. One leg is there, and the other is still standing in chemo-reality.


But as they say, hope is the last thing that leaves you, and as humans we must have something, that is just maybe out of reach but not entirely, to hope for. And as I’m not religious I can’t really hope for salvation or heaven, and I’m not really interested in eternal peace anyway. The only thing I can hope for is more time, more future. So it stands to reason that a lot of the machinations of my brain will therefore investigate what kind of future I can hope for, if all goes well. It turns out, even in the best outcome of this I have to accept death, as part of my new life.


Ironically, I’m actually way better at living since I found out I’m dying. I mean, not right now, and in some sense we’re all dying, but you get the idea. I’m so much better at life, when life also involves death. I’m better at embracing my feelings, I’m better at being grateful, I’m more conscious of the sort of thoughts I allow into my head, and whether they’re worthy thoughts or not. I’m better at enjoying the here-and-now moments, and I’m so much more grateful. Before, I had a good job, decent money and great friends and family, and while I did appreciate every bit of it, I think in some ways I felt entitled to it. It was due to me, as a result of who I was, of what I did.


Now, as I’ve struggled to understand how wholly unfair life actually is and that there really isn’t anything you can do about it, whether or not I deserve something is completely unimportant, because you don’t actually get the things you deserve. In comes the gratitude. Yes, I may have cancer and it will change everything about my day to day life and my future, and my death, and it’s not fair in any way, but it’s just part of the portion I’ve been served. I’ve also been given incredible kids, a wonderful husband, loving family and friends, great opportunities to do amazing things… The list goes on and on.

I’ve had to give up basically everything that I was, everything that I thought defined me, but in return I’ve gotten something back. It may not be a fair bargain, but I’m so not left empty-handed in this. If the price I’m paying for living is a life with death as a participant, I’m ok with that.

Dreaming away

by Hilla Duka - View comments


When the worries and fears of the next checkup, or just of life as it is these days, threaten to overtake me, I have a new weapon. I dream myself away. To after the doctor’s appointment, when she’ll have given me the news that I’m doing fantastically, that the results are better than they had dared to hope for. To a holiday in the sun, playing with the kids. The more real the worry, the more real I make the dream.


Yesterday it was time for the half time checkup I’ve been dreading and hoping for for months now. The checkup itself was done quickly and more or less painlessly (they just insert a needle and at one point give you contrast fluid through that), just lying down and then you get moved back and forth through a huge machine with a round hole. The day before that was the blood sample which will tell me if my all-time high of 112 was a fluke, or if my body really is producing blood on its own again (which would mean the cancer cells in my bone marrow are fewer), and tomorrow its time for another mammogram. And for all I’m willing my body to have done well, there really isn’t anything more to do but wait for the results.


So, I start dreaming away, to a holiday in the sun with my family. My lovely friend Heidi started a fund-raising when I got diagnosed, to send me away on a dream holiday. The fund-raising went through the roof, and it means I will get to take the kids on their first holiday in years.  I’ve some red tape to get through first, like getting OK to going on holiday while I’m still on sick-leave (Sweden has loads of rules on stuff like that), but my oncologist cleared me for travelling, just to go somewhere “safe and practical” as she phrased it.


So now I’m looking at holidays - the kind of chartered ones with preferably all-inclusive and pools and beach just around the corner. The kind I never would have looked at before having kids, and that always seemed too expensive or over-the-top once I did. This summer, I think, in the end turned out to be a good one for the kids. Thanks to the car we could go to fun places we didn’t really go to before, and all of us, Ilir, my brother and my dad, made an effort to take them out as much as possible, so that they could go swimming, or go to the really fun park across town. But we couldn’t go away, at that point. Everything about the diagnose was still so new, so raw, so dangerous. The year before that I had time off in the summer, but no money to take them anywhere, and the year before that I worked all summer, so they’ve really waited long enough for this. We all need this, I think. For one week, just to get away from it all, the morning stress and the homework that needs to be done and the constant, constant worrying…


Now, when I start to worry about the result and what it will show and I realise that it’s just one of those improductive worries, I start to think about our holiday instead. I know we will have an amazing time once we get there, and for that I’m so very, very grateful. But even before that, just now, it’s doing me a world of good to just have this to dream away to, as a counteract to those worries that will just lead me nowhere. I just start dreaming away to a place where I’m lying by the pool sipping goldfish-bowl-sized drinks and watching the kids splash around in the water. This trip will be another thing that I hope they can remember for the rest of their lives, something we did together as a family.


I’m so, so grateful to everyone who helped the fundraising become such a success. Thank you so much, for caring, sharing, contributing. And a massive thank you to Heidi, who as always knows how to make stuff happen!

The image above is borrowed from fritidsresor

Perfect imperfections

by Hilla Duka - View comments


As crazy as it sounds, I don’t think I’ve ever been happier with myself and my body than now. Now, when it’s being pumped full of toxins, when my head is bald and my skin is freckled to the max, three of my nails have darkened and are threatening to come off completely, and my eyebrows and eyelashes are gone. Now is when I love it the most.


I’ve always had a weird relationship to my body. Though sadly, this relationship should perhaps be described as normal. Most of my friends have the same one with their bodies. I’ve hated that I’m so short, wishing desperately for just ten more centimetres, preferably straight to my legs. Or just as desperately wishing for ten less kilos, or better yet twenty. I developed anorexia and bulimia pretty much as soon as I hit my teens, and even though I came out of it by the end of my teens, the mindset remained. I adored skinny girls, and I hated my curves. I would curse my body for being built so sturdy, for the muscles and fat that would never go away. Now, I’m so very grateful for them. Had I been one of those super skinny girls, there’s no way I would have been able to take ten rounds of chemo.


I’ll not pretend like I enjoy seeing my own scalp when I look in the mirror, or the strange, lashless eyes that look back at me, but I love my body for working so hard to get through this. And I feel connected to it in a way that’s very new to me. Before, my body was the means to achieve a goal. It was my transportation, not part of the real me. Now, I feel like I’ve taken possession of it in a brand new way.


My dad told me of how, when my grandmother learned she had cancer she had raged ‘How could my body betray me like this?’ but I look at it very differently. I feel as though it was the disconnection between my self, my personality or soul or what have you, and my body, that allowed the cancer to creep in. And, if I’m lucky, connecting the two together again will be what will let it heal.


I caused this, at least in some sense. Or at the very least, my negligence to my own health and my body meant that I didn’t see the small signs something was terribly wrong. A lack of respect for my body meant I didn’t take it seriously enough. I didn’t check my breasts very regularly. I didn’t know all the things to look for when you do. And, when I noticed there was a difference between my two breasts, I didn’t think it was the breast with the tumour that was the problem - that one was looking perky and nice. No, was I looking at the healthy one, wondering why that one had decided to go dog-eared on me. I didn’t think of myself as a vain person, but if I had looked at my body without vanity, maybe some concern for these changes would have prompted me to look into all this sooner? We’ll never know.


Recently, I changed my profile picture on Facebook. It’s a small bloody thing, but it was big to me. I removed the picture of me laughing on our office terrace, my long hair taking up half the picture, and instead uploaded one of myself with no hair. The one that’s over this post in fact. I used my long hair to hide behind. I wanted to hide my apple cheeks and my double chins and my sadly sloping eyes. Being bald lets you hide nothing. But being loved makes you bold, and for me, it has allowed me to show myself and see myself as I really am, these days. Bald head and all.


Going through chemo is really, really rough on the body. I’m now on my fourth treatment, and physically, it’s extremely taxing. If you’re not well-read on the effects of chemo, the basic idea is that since we have no way of actually targeting cancer cells, we just pump the whole body full of toxins, that strike at every single part of your body, hoping that it will also hit the cancer cells. Of course it’s a bit more complicated than that, but that’s pretty much the gist of it. It especially hits the fast-growing cells, like hair, skin, blood, mouth and stomach, but long term use (I will be on chemo for about eight months) will affect the heart, kidneys, lung, and nervous system. To some extent it already is, and I can feel that. It’s somewhat ironic that one of the things I was mourning when I found out I had cancer was the fact that I wouldn’t get to be a little old lady, and now that’s exactly what I feel like - an old lady with bad joints, a heart that races at times, knees and hands that won’t function the way they used to… But throughout all of this, I’m so proud of my body, I’m so thankful for how hard it’s working, to cope with the chemo and to fight the cancer in my body.


Cancer is not a gift, and no one should make the mistake of thinking I’m happy for what I’m going through, but it has changed me for the better in many ways, and how well I am now connected to my body, how proud I am of it, how much I love my life, even when so much has been taken from it - these are just a few of the positive changes I’ve had in my life in the past three months.