Showing blog posts tagged with: love

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.


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.


Celebrating and commemorating

by Hilla Duka - View comments


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.



by Hilla Duka - View comments


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. 

So much love...

by Hilla Duka - View comments


Since I found out about the breast cancer, and how it spread through my body, I'm astounded at the amount of love, thoughtfulness and caring that has come my way. It's not even been two months since I received the shocking news, but I can honestly say I don't think I've ever felt so... cared about, I guess the best word is. So much of it is coming from my friends at work, which I think is truly amazing. Most people have colleagues, and a few of them they like well enough to form friendships with. I think this is especially true for Sweden, where friendships are formed in school or at least when you're young and single. At (almost) 35, and through other past events, I've lost most of, if not all, my friends from school, and the friends I made when younger I have mostly lost touch with. I don't mind, as it's part of life - you go through stuff, some people are there for you, others will back away. That's how you learn who truly matters to you. Enough to say that my "colleagues" from work are not mere co-workers, they're friends, true friends, who worry, send positive thoughts, encouraging gifts or lovely thoughtful cards that make me laugh and give me a moments respite from this new reality. 


In a support group for breast cancer patients (yes, I am refusing to use the word "victims" - I will not be a victim) I was shocked to read a thread on how to deal with losing your family and friends in this battle. One woman describing how her children refused contact with her anymore, and others reporting similar situations, friends who no longer get in touch, don't want to meet up, the feeling of loneliness added to the battle against the cancer. How fortunate I am in the midst of all this not to have to go through that! It's true, old friends who I thought might reach out have not, but they are not anyone I'm close to, and I don't miss them for it. It's true, my entire family on my mothers side have remained silent, but on the other hand other family members have come forward to offer sympathy, sending positive thoughts my way. Most of all, my family and friends have been there for me. My lovely friends from work who will come over with puppies for me to cuddle with, or a bottle of wine to share on my balcony when I'm too weak to go out, even starting a fundraising campaign to send me and the kids on a dream holiday and give us all a break from this tormenting reality we're now living with. The father of my children, who upon hearing the devastating news asked me to marry him. My amazing brother, who dropped everything to be there for me, to support me and help me so that I would not have to go through this without him. Who when I had to shave my head, shaved his own in support. My parents, who've not seen or spoken to each other in twelve years, burying the hatchet and making peace so that they can both be here for me and the kids. In these regards, I'm so very fortunate, and thankful for it. 


Today is day four after the second chemo, day three - five are I think the worse, and I do feel quite weak and tired, but am not in pain really. This time it's easier for me to accept that these days are not good days, because I know that they will pass and I will have more energy soon. The first treatment, I was reluctant to admit how weak I was, thinking it would not go over so quickly and that I had to fight more to stay strong and energetic. I see a breast cancer therapist, who helps me understand the mental aspects of receiving news like these, and how I can deal with them not to let them overtake my entire life but still find joy and happiness, and not be irreverent of life by thinking harmful thoughts or let the thoughts of death and dying consume me completely. This helps a lot. I can wake up in the morning, and be grateful for this day, even if it is one of those days when I can't do much or don't feel too well. I know that there will be laughter and cuddles and happiness even in this day, and I can be thankful for it. I still wonder "Why me???", but I also know the answer - life is a game of roulette. It could be me, it could be anyone. 


One question I get quite frequently, is how could it have gone so far before I found out? I'll try to answer that one as best I can. The type of breast cancer I have is called lobular breast cancer, and is the hardest to detect. Rather than growing as a lump on one side of the breast, It grows directly under the nipple, and not as a clear, hard lump, but as a softer, more weirdly shaped jellyfish of sorts. It wasn't until it reached a size of about 5 cm (though measuring it is tricky since it's not round), that I could tell there was a real difference in size compared to the other one. Even then, as I googled and tried to make sense of it, it seemed most information discarded the idea that it would be cancerous. And it took me some time to accept that it might be, and get help. I think I was in denial for about a month. I knew something was wrong, as I was so short of breath, tired, bones aching, but as I went for checkups and doctors appointments, they would claim one thing after another, asthma, some sort of viral pneumonia, or just prescribe coughing medicines. Had they taken a proper blood test, as indeed the last doctor did, they would have found the cancer. For about four months I went to different doctors, going through this routine, but in all honesty, if they would have found it four months earlier, it would probably still have been stage four. My doctor believes I've had it for one to three years, without knowing, and given the fact that I have no record of early breast cancer in my family, I had no reason to check it earlier. Also, lobular breast cancer symptoms are not covered in the self check info you find online or at the doctor's office. This is why I think of it as roulette - it's just a series of unfortunate circumstances that's lead to this...


I also got some questions as to what a port-a-cath looks like, so here's a quite unflattering picture of me showing my port-a-cath. The round thing is where they insert the needle, and the small tube is what transports the drugs into my blood stream. Genius!

Another question I get a lot, is why I'm being so open about this. I think for most people who know me well, it's obvious. I am very open as a person. I also don't believe it's my fault that this has happened to me, so I don't feel weighed down by guilt. And if there's a small chance that reading my ramblings would help someone else who goes through something similar, that would also make it worth it. And, lastly, it might make a difference for my kids to read one day, when they're older. So there you go.