Showing blog posts tagged with: kids

Fair is fair - right?

by Hilla Duka - View comments

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That’s what we teach our kids. Either all you gets ice cream, or none of you get ice cream. If he got to play on the computer then your turn will come. Because fair is fair. And when they lash out at us and through tantrums because something's not fair, we do our best to make it fair. If everyone in your class really does have a cell phone then maybe I should get you one. But life isn’t fair, not even in the slightest. Right now, I’m trying so much not to let my kids see how hard I’m fighting to give them something they’ve never even thought they would not have - me.

 

Fair isn’t fair, we’re all born with different preconditions, different potentials, different challenges. And for some of us, life throws a lot, while for others it seems more of a smooth sailing. But even I - at the age of thirty five, will break down in tears and rage at the world about how unfair it is. And it’s true, it is. Breast cancer is like a game of russian roulette - it strikes out of nowhere, and it doesn’t care that you’re young, that you have kids that need you, that you’re kind of healthy. It’s not fair, but it’s life, and the only thing we can really do is deal with what life throws at us, stop whining that it isn’t fair, and get on with things. Maybe that’s what we should be teaching our kids instead?

 

I try very hard to believe with all that’s in me, that I will be the miracle patient. That I’ll go into remission, and just stay there, for years and years. And that then there will come a way to kill metastases: cancer won’t be incurable anymore, and I’ll go on to become a little old lady. I want that scenario to be true. But I also know that that might not be the case, that indeed it isn’t the likely case at all. And if that’s not going to happen, then I want to have made the best of the time I had. I want to have been the best me I could possibly be. Actually, I want that even if I get to be a little old lady.

 

I want to have left a mark, to have done some good. And so I start with myself, and I tell myself not to mope around that life isn’t fair, but to do something instead. I watch myself for those unworthy thoughts that sometimes creep into my head, and I work at being a better, nicer, kinder person. If this whole trip doesn’t go the way I want it to, I want my kids to remember, if not my voice or what I looked like, then the sound of me laughing, the feeling of me hugging them, how I would always tell them how proud I am of them. I want them to know that I worked at being a better person, and that this is a legacy I would like them to continue in their own lives. I want them to know how sacred a life is, and how I fought to stay with them.

 

Fair is not fair, but no-one knows the future. Maybe I will be that miracle patient. Maybe I won’t. One thing I do know, and that is that this whole experience has changed me, and I think for the better. I believe I’m a nicer person now than before I got the diagnosis, and that’s worth something, to me. Life may not be fair, and maybe we’d do well to teach our children that, rather than shield them from it all. But life will hand you good things and bad, and if we learn to take the punches when they come, maybe we can enjoy the good turns better, when they come? Because they do come.

 

The picture above is taken at Gröna Lund earlier this summer, before we knew anything about cancer, and the challenges facing us. Just a simple, beautiful day with the kids, all of us happy and carefree...

 

Milestones passed

by Hilla Duka - View comments

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Milo’s lost his first tooth! A very proud little man, who’s been walking around with a wriggling tooth for weeks now, wondering when it would ever come off, has now had it exchanged for a gold coin from the tooth fairy. Big milestone passed here.

 

And I’ve passed my own milestone, treatment no 4 is now working its toxic ways through my body, and the blood sample I gave the day before yesterday came back showing the highest blood count (haemoglobin), since I’ve started treatment - a staggering 112 instead of my usual 95! This meant that I didn’t need a blood transfusion, so the time in the ward was a mere two hours, the shortest so far. Though no-one seems to understand why my blood count was higher this time, everyone seems to think it’s a good thing. It’s normal to have a low blood count when going through chemo as it attacks all fast growing cells, and haemoglobin, hair, skin are all fast growing. But as I have metastases in my bone marrow my haemoglobin production is poor in itself. If I try to think positive, I think that maybe my better values come from some of the metastases being altered in their progress. Since no-one knows for sure, it seems only reasonable to think positively about it. And, very importantly, it means two more bags of blood are thankfully available to someone in more urgent need of it than me!


It’s during this cycle of treatment that we will do the CT scan and see how the progress is going, and I’m hoping this is a good sign for the news to come. I can’t say I’m not nervous about it. But the tumour in the breast is visibly smaller, and I can’t feel the lumps in my neck anymore. I don’t have such a pain in my lower back as I used to, though that is most likely because of the skeleton strengthening medicin they’re giving me. The chemo is taxing, and I often have aches in my joints, and at times parts of my body feel like someone’s been going at me with a small hammer all night… Still, this is a far cry from how awful I thought it would be! I’ve managed not to have to take any of the extra medicines they’ve prescribed for side effects, so I only take the anti-nausea meds three days after treatment. Small things to be grateful for!


Back to school

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Just as everything must begin somewhere, so everything must come to an end, and now our summer has too. The kids are back in school, Ilir’s back at work, and I must start to face my new life of being on sick leave, rather than pretend I’m on some sort of extended holiday. While everyone was off it was one thing, I could hide behind the beautiful weather and having the kids around. I got wrapped up in trying to give them some sort of family holiday that they would enjoy, rather than actually accept this new reality of mine. Now I can’t really do that anymore, and it’s painful, but necessary to accept, to face life head-on.  

 

I keep thinking, maybe I can take something up? Like crocheting, or cooking or… god knows what. It’s hard to think of myself as not being useful, but I know that most likely I wont take up crocheting or cooking, or anything else. I can’t walk the kids to or from school as it’s too far for me on most days. The truth is, there really isn’t much I could do. Oh but that’s probably not true, I’m making up a sad story that features me as a victim, and telling it to myself. How the brain loves a bit of drama, and being the victim is quite seductive. I mustn't fall into that trap. Ok, maybe I wont be taking up crocheting - my fingers are stiff and aching from the side effects of chemo, and writing on a keyboard is about all I can manage. Still, I can do other things. Indeed, I must do other things, I must keep myself busy as much as I can, and not drift into the temptation of wallowing in self pity.

 

Seeing everyone off this morning was painful, but it’s a sort of pain I’m grateful for. It was me facing reality rather than pretending, which I value and appreciate. The reality is that I feel quite lost without my work, I feel as if I have no real place in the world. I miss both my job and my colleagues, but most of all, I miss the person I am when I’m working. I miss being an active parent in my children’s lives, I miss a life where I worried about putting myself together in the morning and weather or not I had a dress ready for the day. I miss being frustrated with my hair for not cooperating with me… But these are feelings I must face, without self pity, and accept and then move forwards. By pretending they don’t exist, I give them so much more power, and without really noticing, I feel sorry for myself. The brain might love a bit of drama and victimising oneself, but no good will come of it, I’ve seen it (and criticised it) in others too many times.

 

School started yesterday for the boys, finally all three of them are together in one place again. After every summer, the school starts with a speech in the yard, and some ice cream for the kids, and parents present. Last year I had forgotten, and thought it was an ordinary day at school, so I had work planned and ended up standing there quite stressed and without a good plan for what to do with the kids. This year, I was prepared and present, ready to really be there for my kids. Only to be facing each of their teachers, looking at me with sad, empathic eyes, asking me how I was bearing up, and telling me I looked quite well, you know - all things considered. I wasn’t actually a parent there after all, I was a cancer patient, and I hated it. One teacher reassured me that the kids wouldn’t have to talk about their summer - naturally she thought it had been horrid and that he wouldn’t want to talk about it. And I thought “But he’s had a lovely summer, he wants to tell you all about it!”... It’ll take some getting used to, being seen as just the cancer and not me as a parent, but ironically, if I want to be an active parent I must get used to it and not allow it to push me away from being part of their school life.

 

Celebrating and commemorating

by Hilla Duka - View comments

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My lovely little Milo - not so little anymore, is turning six today, so obviously we have major reason for celebrating! He’s still not speaking clearly, and the baby curls still fall in lovely little ringlets around his shoulders and down his back. His amazingly long and curly eyelashes hit nearly upon his eyebrows, and when he smiles, my heart misses a beat. He’s funny and charming and impossibly headstrong, and clever and inventive as well. He’s at that stage where he’s still a bit of a small boy, and at the same time growing into a big boy with big ideas.  I’m so unbelievably proud of him - of all my boys of course, but today is Milo’s day.

 

Yesterday would have been my grandmother’s birthday, she would have been 93 but passed away five years ago. I don’t mark her day of passing, but her birthday instead. I was very close to her, though I probably felt closer to her than she did to me - after all she had many other grandchildren, but my other grandparents were in Israel and I didn’t see them often or talk to them often. Being with grandmother was a refuge from everyday life. I loved the freedom of being with her, she just accepted me the way I was, and it  was a simple and respectful togetherness - I accepted that there were things she wouldn’t talk to me about, and she did me the same turn. Instead, she taught me cooking, baking, sewing and crocheting. And while we worked, she told me little stories from her childhood, that became little treasures for me. I’d learnt not to ask myself, as there was no knowing what she wanted to share and not, but whenever she would share a small bit, I sat listening with rapt attention, savoring every word. I need to write those stories down for the kids for the future.

 

Even when I was quite young, I don’t think I could have been more than ten, my grandmother started talking about her impending death. Not in a morbid way at all, I think she was just trying to prepare me for a time when she wouldn’t be there. It was just small things, like going for a stroll in the spring and her wondering if she would be here to see next spring. After all, she’d already said goodbye to most of her siblings, so wondering would be natural I suppose. The last time we spoke before she died, she told me “It’s quite alright, I’m more than willing to go now”. When my kids went through the phase of worrying about death, that’s what I told them. “People go when it’s time for them to go - when they’re ready” I hope that’s true, because then I’ll be around for a long time. I’m not anywhere near ready to go, not any time soon! I want to raise my kids, see them grow up into teenagers and adolescents and grown ups, find their person and maybe have kids of their own. I want to grow old.

 

Today, I’m so thankful that I get to be here for Milo’s sixth birthday! I had my third treatment yesterday, so I don’t have tons of energy, but I’m here, and that’s enough. I can cuddle him up, pour kisses on him and touch is soft curls. I can tell him I love him and how proud I am of him, and I get the pleasure of seeing him opening his gifts, hopefully being delighted with them. I get to hear him play with his brothers. All of these things I’m grateful for. Six years ago, he was a healthy, sturdy and absolutely brand new person, and I did as all new parents do - counted his toes and fingers, touched his little button nose and his impossibly soft skin, stared into his blue eyes, thinking he was absolute perfection, and how lucky I was to get to be his mother. That’s what I’m thinking about today - actually what I think about most days now - how lucky I am to get to be their mother.

 

Married

by Hilla Duka - View comments

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Yesterday, on a high overlooking the entire city, I married my best friend, the steadfast rock who's always been there for me, the love of my life, and the father of my children. In a simple ceremony marked only by love and respect, with family and beloved, supportive friends around us, we became husband and wife, and I know that this we will remain for all of my days. 

I'm so grateful to everyone who took time to come and celebrate with us, making it exactly as special and still relaxed as I had hoped. It was an amazing day. And to my friend Cattis, without whom all of these ideas about getting married would still just remain ideas. When I found out about the cancer, Ilir asked me to marry him. When we started planning, all we could really come up with was that we would like a small ceremony, in a very relaxed way, having some champagne with our loved ones. Since I can't plan far in advance as I have no way of knowing how I will feel in six or so months, we knew that it would have to be short notice. This meant we couldn't simply book the next available time at the registry office, and as I am a non believing Jew and Ilir is a non believing Muslim, finding someone prepared to marry us seemed more than difficult. Until Cattis came in, found a lovely minister who didn't have a problem marrying such a religiously strange couple as us, and also promised to work around Jonathan's very harsh opinions on mentions of God or Jesus. (I think I've mentioned that before? While I'm somewhat of a religious carnivore - devouring all but believing in nothing, Jonathan has very strong opinions about especially Jesus. I think it stems from going with school to church before Christmas, where the priest told the story of Jesus as if it was fact, and Jonathan stood up, pointing fingers at the priest and calling: You can't know that's what happened, it was over two thousand years ago, YOU weren't there!) Thankfully, this very open minded minister didn't have a problem working around all of this, and Jonathan, whilst initially sceptic, soon warmed to him and played and laughed with him after the ceremony. 

My lovely friends from work read this poem, which brought tears to my eyes and joy to my heart (chemo brain is making me mushy and sentimental and emotional...):

När jag står på bergets topp

När jag går i den djupaste dal

Finns det inget på denna jord

Som jag inte kan klara av 

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt 

När dom vänder mig ryggen

När människor blir små

När vägen är mörk

Ska jag fortsätta gå

För med dig är jag modig

Jag är den jag vill va'

Och hur det än blir nu

Är allt som det ska

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt

And then we were done, and after some champagne we went down to find some grass and some shade and had a picnic. It was exactly the sort of simple, relaxed day I had hoped for, and though I was sad that some of my friends and loved ones couldn't make it, we toasted to absent friends, we laughed, and it was a wonderful day. I hope it will be a day the kids will always remember. I know I will. 

 

And today is my birthday, I'm turning 35. A few years ago I invented IHAD (International Hilla Appreciation Day), so my birthday is usually a day of drop-by visitors having some bubbles and toasting me and telling me how wonderful I am, rather than the cake, gifts and off-key happy birthday songs you'd normally have. Celebrations are so important. At every chance, every birthday, happy turn, achievement, at every piece of good news, we could all do with a bit more celebrating. God knows we grieve enough. 


More beads for my string

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On Saturday, we all mustered all our energy, weathered the heat, and packed ourselves into two cars to head for Kolmården. The trip by car is not far (probably like an hour and a half), but with three kids who are not used to travelling further than school, some breaks were needed. The kids were excited, I was apprehensive. How on earth would I have the energy to do this??? And not just the walking around, but the being around so many people, not having a comfortable place to sit, god - the fears were never-ending! 

fox at Kolmarden

tiger at kolmarden

sea lion at kolmarden

But we got through it, we saw all the animals, we rode in the funicular safari, and best of all - Jacob got to see the dolphins. He's been wishing to swim with dolphins for years, but has never actually seen them in real life. He was absolutely transfixed, watching as they swam and jumped and skidded across the water, laughing as they performed their tricks. It was magical to see! All of the kids loved the show (as inspite of myself, so did I. I normally have very strict opinions on animals being constricted to small spaces and learning tricks for the benefits of humans, but decided to put all those feelings aside for the day), loved seeing the animals and riding the little roller coaster shaped like a dolphin. 

 

It was unbelievably hot, the kids were occasionally cranky, so was I to be perfectly honest. In the end, I was too tired to take another step, as I've got a slight tendency to overdo it (ok, I'll run myself down before I can accept defeat, if I'm being very honest about it). Still, it was a lovely day, I'm so happy to have done it! Next year, I hope to go back with them. Next year... It's hard to find the right balance between making plans for the future (as is so typically human), and accepting that the only thing we have is right now, and the future is uncertain. This is true for all of us, not just those of us adjusting to life with advanced cancers, but we seem to have such a hard time remembering it.

 

The past is gone, and the future is unwritten. It took  me a long time after the diagnosis to understand this. To understand that what I was grieving was something that had already happened, and something that had never really been there in the first place. I grieved the fact that I had breast cancer as though that was something that happened when I was told about it. But the truth is, it had been happening for years without my knowing it. And I grieved the future I had planned, as though I was entitled to it. Then I got my head around it, and realised that even if I was just finding out about it, I had already been living with cancer, perhaps for years. Just because it was new to me, didn't mean that it was new. It's sort of like being cheated on - you find out after it's already happened, it's new to you and it changes the way you look at the past, but it doesn't change the past. And just the same way, the future I was imagining, was not real. It never had been. I was grieving an idea. 

 

And when the past is lost to you, and you understand that the future is unwritten and yours is not the only hand doing the writing, something changes inside you. Because all of a sudden, the only thing you truly have, is this moment. No matter how hard I fight, how determined I am to be a miracle patient, to be there for my boys, the only thing I can truly control, indeed the only thing that's actually real and not rewritten or made up of hopes and dreams, is the now. I wont make plans for the future - when it comes, if it comes, I will let it happen, grab life by the throat and make the most of it. I still plan on surviving, I still choose to remain unrealistically hopeful, but my main focus is on right now. I will enjoy the right now, I will squeeze as much as I can get from it, and when it becomes the past, I will cherish the good memories and let go of the rest. 

 

Right now, I'm sitting on my comfy chair on my beloved balcony, enjoying the breeze and the fact that it's not suffocatingly hot anymore, the kids tucked up in the sofa just inside, watching Tinkerbell, tired after a day by the pool. In a moment, I'll go in and join them, squeeze myself in next to them and cuddle them and smell their necks. And I'll enjoy the hell out of that moment as well. And what I've learned is that it's worth it to keep challenging yourself, t do things that scare you, even though you worry how your going to get through them, because you'll have a wonderful time doing it, and then you get that precious memory to keep. And if it all goes poop shaped, it will soon be in the past, and you can choose not to dwell on it! 


Milo inspecting the elephants. The baby one was cute, but the others a bit scary!


On the Safari tour high up in the trees!


At times, it was a long way down, and sitting on the lap felt safer.


Looking for lions


On the roller coaster for the second time - this time their grandfather got to take them, as my legs and my tummy were not up for another ride...


Bucket lists and expectations

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Once, the idea of getting old scared me. Then I reconciled myself with it - thinking it happens to everyone. Getting old is something we've come to expect, we think of living until we're ninety, or at the very least eighty, as a right, as default. The thing is, it's not. Getting old means having hit the jackpot. It's my ultimate hope and goal that I get to grow old, with my loved ones around me. Soon I'm turning 35, and truth be told, I can't know for sure or even expect to turn 40. If I do, I will most likely be the happiest, least neurotic forty year old ever! For now, I'll be happy and grateful for turning 35. For this day, and for, hopefully, tomorrow. 

 

When I turned 25 I was at such peace with my age. I was exactly where I wanted to be, everything on my bucket list neatly checked. When I was about to turn 30, I started thinking about what was on my bucket list at that point, what I wanted to have done and experienced by the time I actually turned 30. It wasn't very much or very thrilling, I wanted a change of career, to drive a forklift truck, a trip to the sun with the kids, to visit my grandmother with all three kids... Might not sound like much, but they were on my bucket list. I did some, but not all, and went quite happily into my thirties. Now I'm about to turn 35, and I don't have a bucket list anymore. I don't wish for money, a better career (I love the one I have, and hope to be able to return to it soon!), I don't need a big house or to travel to remote parts of the world. What I really wish for, is time. Time, and everyday life. Small things like making the kids breakfast, seeing them experience new things, learning, having fun... Saying good night and knowing I'll see them in the morning. Those are the things I wish for most of all, and yet they are the things that we all take for granted. The best bits of everyday life turn into little gems of memories, like beads on a strand, and I gingerly collect them; greedily asking for more.

 

My sweet friends Cattis and Cissi from work, and Cissi's husband Hasse, gave us one of those precious experiences when they offered to take all of us out on their boat. The kids were absolutely thrilled with the idea of going on a boat, visiting a small uninhabited island, roasting marshmallows and going off exploring. It was just magical and beautiful, and seing the kids so happy and excited did wonders for me. More treasured beads for me to collect - the look on my sons faces when they were allowed to try to steer the boat, jumping into the cool water, or simply sitting at the front of the boat as it cut through the water. We climbed into bed way later than their normal bed time, exhausted and sleepy and utterly content.  I'm so, so grateful!