Showing blog posts tagged with: kids

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.


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.

 

The art of living

by Hilla Duka - View comments

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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

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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


Squandering the day

by Hilla Duka - View comments

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There’s no beating around the bush with it - not working is really hard for me. Work has always been such a big part of my life, when I was a stay at home mum it drove me insane, and then I had babies and toddlers all over the house. It drove me so much round the bend, I ended up starting my own company during Milos infancy. Needless to say, it’s been more than a little difficult learning to be on sick leave. And as basically all of my friends work full time and have careers of their own, when we meet up, the question always comes up - Really, what do you do all day??

 

Honestly, not much, but maybe more than one would expect. I say good bye to the kids and Ilir in the morning (he gets them up and dressed and fed since I’m still not a morning person - that much hasn’t changed), and then I clean up the house. I’ve usually cleared it a bit at night, but somehow the morning rituals seem to just completely clutter the house again. I reason that if I can start the day by getting it nice looking around me, I’ll have started on a good note, and it will bode well for the day to come. It’s become a bit of an obsession - I reason that the day I die will not start with me cleaning and making all the beds, so if I do this every day, I’ll ward off the grim reaper, or something to that extent. Plus, since I’m now spending so much time at home, it only makes sense to keep my surroundings nice and tidy. As a result, our home has never looked nicer.

 

I usually make time for unpleasantness during the day, be they planned or out of the blue. As I’ve written several times before, I need to make room for the horrible thoughts less they consume me, so (I know this will shock anyone who knows me), I do some guided meditations, and let all the sadness come out. Better that than the alternative - panic attacks. I can honestly say that I’ve never cried this much in my entire life, and that includes the pregnancies with their hormonal roller coaster rides.

 

I try to learn stuff, I have a long to-do list with stuff that I want to learn how to do for this site, but basically anything I didn't know will do. Today I learned that if you don’t have eyelashes or eyebrows, you really shouldn’t just put soap on your face and leave it there for a bit. It will sort of just slope down into your eyes. Bet you didn’t know that?

 

I read a lot. Like, loads. Biographies mainly, but since my attention span sometimes, depending on where I am in treatment, is that of a goldfish, I often just resort to social media… I know, it’s sad. I’ve taken to putting on music when I’m alone around the house, not really the things I used to listen to, but mainly Chopin. It’s kind of soothing and doesn’t really demand very much from me, and it’s still not boring. I'm basically like this little old lady walking around with stiff joints fluffing pillows and listening to classical music. But with wine. 

 

The thing is, I don’t really have that much energy. So if I manage to go out to meet someone for lunch, or go for a walk or fix some snacks for when the kids get home, for me that’s a good day, a day of accomplishment. Life has become so very small. And as I try to remind myself, my main job right now is to go through treatment and take care of myself as much as I can. Well, I try to remind myself. It's probably a good thing people around me do it too.