Showing blog posts tagged with: being a family

The danger of helplessness

by Hilla Duka - View comments

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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. 


Shabbat shalom

by Hilla Duka - View comments

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One of my favourite traditions in judaism is Shabbat. Come Friday evening, you get to gather your loved ones around you, eat what is hopefully a really good meal, drink some nice wine, and just appreciate that the week is over, all the duties and stresses of everyday life taken care of, and you get to spend some time relaxing with your loved ones. Ironically, before the diagnosis, I worked hard all week, and come Friday, I’d have some wine with friends or go out, but just getting home to do Shabbat dinner with my kids wasn’t on the agenda. In theory I liked it, but in reality, if I was home I was knackered, and if I had any energy I’d go out.

 

These days it’s a different story. In my tiny new life, preparing for Friday night has become a big deal. All week I see the kids and Ilir off in the morning, and then spend the day in uneventful waiting for them to come home. Shabbat has become a ritual I look forward to - the weekend, when all the kids are home and we can do stuff together, my beacon of light when the week itself feels empty and gloomy.


And then this: after having eaten well, to take our glasses, still sipping the wine from dinner, sitting down together in the sofa, happy and stuffed and tired. Then Jacob brings the orange cake he and I baked earlier, we pull out some new plates and bring the Shabbat candles from the kitchen. And I sit back and watch them, these kids I made, this family I got, all of them calm and happy and peaceful, all of them loving and caring towards each other and me, and I can’t help but feel so grateful. For tonight, for these people, for this life.


The here and now

by Hilla Duka - View comments

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I am now past what has been the worst week of the worst treatment so far - finally I can say that it’s over. The treatments, or rather my reaction to them, seem to worsen for each time, and this round I was knocked out for six days straight. Six days of having nothing but the taste of vomit in my mouth, not being able to eat or drink anything with relish, of my head feeling very drugged up, and my body aching, left completely without strength. As day four, and then day five approached, I hoped and thought that they would bring comfort, that I would feel better, more like myself. On both those mornings I woke up, looking for signs that I was past it, only to find it was still as bad. That crushed hope was hard to take, although I hope now to have learned for how long it will be bad, and accept it better next time. Next time… Four treatments left, all-in-all a month of feeling this ill, albeit split up over four different weeks. I try not to dwell on that too much, but look forward to two weeks of not feeling like that anymore, and to try to imagine a time when the treatments are done for this time, to imagine receiving good news at the last checkup, to having some time to be well after chemo is over for this time.

 

The days that I am so weak are hard for me to go through, but I think much harder on those around me. I hate that they suffer, hate seeing them worried about me and not be able to reassure them in any way. Cancer has affected everyone in our family, and their lot seems to me to be worse than my own: I can think of nothing as heartbreaking as watching someone you love go through this and feel so helpless as there is nothing you can do. But then I think of how horrible it would be if I did indeed go through this alone, without anyone to care for me or worry for me, and I am grateful to be surrounded with people who love me, who are prepared to be there to offer what support can be had, even though it hurts them.

 

As I was at my worst, in a rare moment of actually being in control of my head, I realised something that I think is fundamentally important: This is in no way different from anything else in life. Yes, I have cancer and it is a chronic and terminal disease - but so is life. Life hands us good turns and bad, and when we’re on a high, feeling loved and successful we feel as though nothing could touch us. But then life takes a turn, be it cancer, or divorce, or any other punch in the stomach, and we’re down, feeling like failures and miserable to the boot, but we get up, lick our wounds, and come back.

 

These turns are part of everyones lives. There is only one time, and one time alone, that we do not get back on our feet and put ourselves back together again, and no one can know when that time is to come. And we cannot live our lives in fear of that time, or in denial of that time, we can in no way let that one, future time when we don’t get back on our feet rule the life we have. I am thirty five years old, I have thirty five years of experience in putting myself back together and making the best of new situations. This I must rely on. It is exactly the same now, with the cancer. Right now, I’m in a bad situation, one I would not wish upon anyone, but I need to focus on getting through the treatments, and picking myself up, because after there will be good times to be had, times of feeling loved and successful, before the next blow comes. And I will be ready to enjoy the next good roll. I know there will come bad blows again, the cancer will flare up again, and then I will work with my body to help it rid itself of it again.

 

When I found out I had cancer, it was as if I died then and there. I mourned the life I would not have, the loss my children and loved ones would have to go through, even before it happened. This new understanding has brought me back from that place, has made me realise that I can live with cancer. No one can say for how long, and I will not dwell on prognoses: they are statistics, no one has seen me fight this before, and so cannot predict for how long or how well I can do this. I don’t mean that in some megalomaniac, narcissistic way: I by no means think that I am fundamentally different than the scores of other women fighting this illness, I just mean that each person is unique. Our makeup, our DNA makes us all different, in ever so small but important ways.

 

When doctors use the term “terminal cancer”, they mean that medically, but we as patients take their words as law - the diagnosis and the prognosis. Yet if I am in remission, if there - for a period of time - are no cancer cells in my body to be found, then I myself must think of myself as well, and enjoy that time, be it six months or ten years. And I must make as much of that time as I can, that is what I owe to life, and to myself. It is the debt we all have to life, and to ourselves: to enjoy our time as much as possible, to face life full on, grab it by the throat and enjoy it in every single way we can.

 

If the end goal of life is to cheat death, then we are all losing. We live in a time when most of us are not forced to live with death as a part of our lives, and so we ignore it and think that we can go on ignoring it forever. But all of us will one day die, the goal cannot be to survive for then we will all fail, it must instead be to have as much time as possible, as good of a time as possible, and a clean death at the end of it.

 

If I look back on the thirty five years I have lived so far, there are of course things I regret. Lost chances and words spoken harshly mainly. But there are so many things I feel I have done well, and I afford myself to look on those things with pride, to take pleasure in remembering them. I am proud of myself for the chances I did take, I am proud to have loved and been loved, and I am proud of my children. The things I regret I don’t dwell on, but use them like I use the things I am proud of: as guides to what mistakes to avoid in the future. So that when my time comes, I can look back on my life, and feel peace in that I lived it well, that I fought to get as much time as I could, that I fought to make that time as good as it could be.


Adventures far away

by Hilla Duka - View comments

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We’ve had a truly wonderful week of sun, swimming, food and drinks, and are now back home again. Before I go into all the loveliness of the week, I want to direct a huge, absolutely massive Thank you! to all the people who contributed to make this week a reality! I really can’t thank you enough - but I hope that you can feel my gratefulness even though my words are inadequate. With all the madness of being on sick leave, insurance companies making trouble and refusing to pay, there really is no way I could have afforded to do this trip if it wasn’t for you. It’s a memory the kids will always have of a week away from this horror that has become their lives (and if they forget, I’ve taken about a gozillion photos to help them remember!). 

 

Jonathan jumping in to the pool

 

The kids swam in the pool non stop. Jacob (almost) learned how to swim - which is a huge step as he’s been quite scared of water before. And since he’s so skinny, we can’t really go to the swimming pool close by - he gets cold after five minutes (and by cold, I mean his lips are blue and he’s shaking non stop). Here, he could practise jumping into the water and getting his head completely under water, eventually brave enough to remove his arm pads and practise floating (not so easy when there isn’t an ounce of fat on you apparently), and eventually trying to swim. He can manage a few metres, and most importantly, he’s no longer terrified to start his obligatory swimming lessons next year. Jonathan, who’s always loved being in water had  an amazing time, jumping in and trying to do tricks in the water as often as possible. Milo’s still wearing his arm pads, but can move around and has finally stopped referring to getting his head dipped as “drowning”.

 

Milo by the pool side

 

When I needed a rest, Ilir took the boys to the sea, where they got to swim in the Atlantic, get splashed by waves and look for sea shells and pretty stones.

 

Jonathan and Jacob by the sea

 

Milo by the sea

Milo got to meet Bamse, though he was somewhat hesitant he finally gathered up his courage and went to say hi. He was fascinated, even though he explained several times that he knew there were people in the costumes, at the same time they were the characters from Bamse as well.

 

Jonathan was most impressed with the idea that someone would wash and change the towels and sheets for us, he thought that was a luxury quite beyond belief. And I realised that of course, they haven’t stayed at a hotel before: whenever we’ve traveled we’ve rented a flat, or stayed with relatives: this was all new to them. And even though they enjoyed the idea of always having food prepared, they all agreed that they preferred Ilirs cooking, saying how spoiled they felt for having someone cook such good food for them. So for tonight they’ve ordered him to make carrot patties for dinner!

 

I decided I might as well go scarf-less, since wether I wore scarf or not seemed to have little impact on the amount of stares, pointing and whispers I got, so I figured I might as well be as comfortable as I could!

me and milo by the pool

The flight, though a good five and a half hours, was a breeze, at least as far as the kids were concerned. And considering how the other kids on the plane behaved I was so proud of my calm, well behaved little ones. I was less happy with other kids on the plane, but I suppose there must be at least one baby screaming his lungs out on all planes… I’m just happy that kid doesn’t belong to me! Usually, I’m not the one with the best behaved children, they run a bit wild, are highly opinionated, and tend to get into arguments with each other constantly. But they do have good flight manners! No loud voices, no kicking the next chair, no wrestling for armspace or reclining your chair, and definitely no, absolutely no crying. Actually, I’d say they’re better than most fellow passengers on any flight!

And as we were heading home, the kids told me how happy they were with their holiday, how much fun they had had, and how pleased they were to be back home, and my heart filled with gratitude that I had been allowed to experience this with them. Again, thank you! Now we're safely home again, and tomorrow it's back to reality as I head in for treatment number six.

 

Magic and heroes

by Hilla Duka - View comments

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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?


This life of mine

by Hilla Duka - View comments

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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

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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.