Showing blog posts tagged with: life and other questions

We're all imortal (in our own eyes)

by Hilla Duka - View comments

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Before I found out about the cancer, and how it had spread, I knew something was wrong. I’d been ill for ages, nearing on three months, and was just not getting well again. I’d leave Milo at nursery, go to work, and by the time I got off the tram I was exhausted, blood pounding in my ears, my head light, almost dizzy from standing up too fast.

 

I remember sitting in the car with Ilir one day, and hearing myself say the words “If I get well again”. I remember sitting up at night too ill to sleep, writing down the time, my symptoms and what drugs I’d taken, remember thinking to myself “I wonder how ill you have to be to call an ambulance?”. I remember feeling that one breast was swollen and strange, and even though a small voice in my mind said I should get it checked because it could be serious, I didn’t really believe it. All of those things told me something was not right with me, but in no way did I ever think it was cancer, and terminal. That’s the thing though, we never think it is.

 

Because disasters happen to other people, not ourselves. We don't get raped or abducted or killed in accidents and we don’t get deadly diseases. All of these things happen to other people, it’s default in our minds. Only one day, we awake to find that we are indeed the other people.

 

I took this picture a little over a year ago, in London. I was there for work, not feeling great to start with, and coming down with tonsillitis during the trip. Too ill to go out or meet friends, I spent all the time I wasn't working in a hotel room shivering from fever and feeling wretched. And I knew things weren't right. I just didn't know how wrong. 

 


Closing the chemo chapter

by Hilla Duka - View comments

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As I am now dealing with the effects of the final chemo, I am struggling to close the chapter on this… experience. Seven months of my life have been put aside to be dealt with in little three week portions, they themselves divided into one and two week portions. One week for feeling wretched and horrible, two for recuperating - slowly getting back on my feet, staggering a bit more for each turn, and then we start anew. Ten rounds of this. It has left me crippled, humbled, horrifically changed, but so far I’m still alive.

 

I am still alive, and the tumour in my breast is gone. The metastases are probably still in my skeleton and bone marrow, and most likely they will one day start growing again. But as I've struggled to find out how to deal with that, I’ve realised that there is no way for me to prepare for the day when I’m told it’s growing again, and we have to resume treatment. It may be in three months or ten years - I have to live while I can. So I will consider this the closing of my chemo chapter, and be ready for what comes now.

 

It would be easy to think that there are only positive feelings associated with finishing chemo - and there is a certain element of success and happiness at being done with it. But there is also a lot of fear - fear and worry the cancer will start growing again once I’m no longer dosing it with toxics. I need to learn to live with that: these feelings will accompany me every step of the way for the rest of my life, and I need to find a way to make sure that I don't give them free reign and let them run my life. 

 

Now comes hormonal therapies to make my body inhospitable for the cancer. Simply put: here comes menopause. These medicines have their side effects as well, but they are hopefully less severe than chemo. And along with those medicines come the slow and hard work of getting back into some kind of shape.

 

As the metastases weaken the skeleton I have to compensate with extra muscles in my back. Also, it seems a good idea to be able to walk more than a few hundred metres before needing to rest. It will be hard work but I try to think positively and focus on how good it’s going to feel to be strong again, to be able to go for a proper walk or do a full yoga session.  During chemo I have both put on weight and lost muscles - now it’s time to deal with that!


The year in review

by Hilla Duka - View comments

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Did you do something 2014 that you’ve never done before?

Oh yes! I found out about the cancer, I learned about death and living with death. I’ve gone through nine more rounds of chemo than I ever expected to. In retrospect, 2014 was the year it all fell apart for me, physically. And somehow, ironically, the year everything fitted into place, emotionally. 

 

Did you make any major changes?

I stopped smoking and using snus. That’s something I’m extremely pleased with, even though I’m not really proud. Mostly I’m just really ashamed I kept at it for so long. Smoking or using snus gave me nothing, it only took something away. Quitting was so easy, once I saw through the lies and deception. I’m extremely grateful to my work, for giving me the option to do a quit-smoking course.

 

What date from 2014 will you always remember?

June 4th, the day I found out I have cancer. August 3rd when we got married.

 

Did anyone close to you die?

No, but death joined our lives in a very real and tangible way this year.

 

What countries/ cities did you visit?

Berlin, in January with work. Then London in early March, also work related. Then no trips at all until we all went on holiday to Gran Canaria in September.

 

What was your biggest success in 2014?

Surviving knowing that I’m going to die. Surviving nine rounds of chemo. Actually, not just surviving, but being able to live, love, laugh through it all. I never knew that was possible. 

 

Best purchase?

I’ve invested quite a lot in our home this year, and that’s something I’m pleased with. Especially since I’ve tried to invest in quality items that will last a long time, preferring old and used to IKEA.

 

Did anything make you really happy?

Marrying Ilir made me really happy. And small, everyday life things that made me so much happier than ever before - like cuddling up with the kids reading a book. I always knew it was nice, but now it's as if my heart will explode sometimes. 

 

Did anything make you really sad?

Finding out.

 

What song will always remind you of 2014?

Frank Sinatra singing My way. I’ve listened so much to that song this year. Crying my heart out to it. 

 

Were you happier or sadder this year compared to other years?

I think I’ve been both happier and sadder than ever before this year. Maybe the sadness has also enhanced the happiness, but somehow I feel everything so much stronger. It's been a year of opposites, of extreme happiness and sorrow like never before. Most of the time, I manage to squeeze every bit of that spectrum into one day. 

 

What do you wish you had done more of?

Spent more time outside, in forests or by lakes. I spend most of my time indoors now, and when I go outside I’m usually always in the city, and I find I really miss the woods. 

 

What do you wish you’d done less?

I wish I’d spent less time with stupid people who only take energy and give nothing back. I wish I’d not focused so much on negative comments or on what other people thought.

 

Did you fall in love this year?

I fell in love, though it’s with someone I’ve loved for years. I guess that’s the best kind of falling in love. And I fell in love with life. As if only when someone threatens to take something away from you can you truly appreciate what you have, and realise how much you love it.

 

Best book you read this year?

One book I read that really had an impact on me was Anticancer - A new way of life. Not because there was really that much new ideas in it, but because it relieved the feeling of complete helplessness I’d been having since I found out. Suddenly, I felt as if there was something I could do - to live a bit longer, a bit better.

 

What were you doing on your birthday 2014?

Resting after our wedding, which was the day before. I usually host IHAD, International Hilla Appreciation Day on my birthday, with everyone coming over, toasting me and telling me how wonderful I am. This year, it was a more quiet affair. But it was a happy day. 

 

Is there anything that would have made 2014 even better?

Well, I’ll not beat around the bush with it, but not getting cancer would have been great. Or at least, getting slightly better odds than this would have been an improvement.

 

What was your biggest mistake?

I don’t really believe in mistakes. I believe in learning from what has happened to you and how you’ve responded to it, and improving yourself. And I believe in apologising to the people you’ve accidentally hurt along the way.

 

What made you feel good?

My family. My kids and Ilir and my brother. Friendships that deepened. Learning how to meditate has practically saved my life, or at least my sanity. Meditation has given me a place where I can go whenever I want, to connect with something bigger than me. A place where I can borrow energy to get through. Whenever it's all too much for me, I close my eyes, focus, and reach out to touch vastness. 

 

What are you most proud of?

Living through the nine rounds of chemo I’ve done so far. When I found out about the cancer and the fact that it was inoperable and the only course of treatment was chemo, no one knew if my body would be able to take so much toxins. Even though it’s literally cost me an arm and a leg, I’m still standing, or at least sitting. My heart is still functioning. Very grateful for that bit.

 

Something you’ve missed 2014 and want 2015?

My health back, please. Please, please, please, may I have some of my health back?

 

Who did you miss?

My grandmother. I’ve thought so much about her since I found out, wanting her help in how to deal with this, wondering how she coped when she found out. 

 

Best new people you’ve met?

The nurses working on the oncology department at the hospital. Hands down the best people I met this year. They’re just all of them amazing - nice and sweet, and they get things done no matter what. When doctors mess up they’re there to clean it up, smiling.

 

Dearest wish right now?

To be well. Tomorrow is my last chemo session and I so hope that I may get some time, a lot of time, to be well, to be with my family. Some time when no new cancer cells are growing, when I don't have to have more rounds of chemo. Years and years, actually. That's my dearest wish right now. 


Happy Christmas

by Hilla Duka - View comments

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The tree was huge, the food delicious and never ending, the company large and merry and the presents plentiful. I think it's safe to say we've learned how to do Christmas. 

Two whole days have been spent cooking, not exactly a traditional christmas meal, but all the food that was ordered by the kids, and then some that we thought would be nice. Never before have we prepared this much food! 

glazed salmon for christmas

Yes, this is a glazed salmon. Glazed, I tell you. I may be a vegetarian, but I'll not pass up the chance to glaze anything. Champagne (actually sparkling wine, but champagne sounds better, don't you think?), balsamic, rosemary, honey and dijon mustard. Have no idea how it tasted but it was fun to make!

banana bread for chistmas

Banana bread for sweets, they look unimportant, but the kids love them, which usually means that if I make them for the kids, I can do something more fun for the adults. Unfortunately I didn't get a shot of my carrot cake with icing before we gulfed it down... Just take my word for it, it was delicious.

My body's aching, my arm's all swollen, and I can't really walk proper, but as I climb into my comfiest spot in the sofa, the kids tucked up in their new beds, the candles burning low, I'm filled with pleasure at the day. Another Christmas for me and my family, thank you. The first one in about fifteen years with both my parents present, thank you cancer for that. 

And for one day, one precious day, I was so busy trying to make sure everyone was having a good time, I didn't think about the cancer, about being ill, about what's ahead. Another thing to be grateful for.


Sum up the year

by Hilla Duka - View comments

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It’s not even Christmas yet, and already I see all these posts on different blogs summing up 2014 - the good, the bad, and the ugly. Though  mostly the good. Either I follow insanely happy, successful and beloved people, or we just tend to try to enhance the good and hide the bad.

 

I ended 2013 with a Facebook post saying “Goodbye 2013. 2014 - you’ve got big shoes to fill”. 2013 truly was a great year for me, in every way. I was suddenly making a career, something I hadn’t really planned on but found myself truly enjoying. I got to travel, meet amazing people, broaden my views. And at home, I finally felt as if everything started working out. For the first time since Jonathan was born, I started sleeping full nights again, and that did wonders for me. I felt the kids had grown past that baby phase, which was always so hard for me to cope with, and had now turned into these three amazing little people - my favourite people in the world. Though home life was still stressful at times, it was in 2013 that I stopped feeling as if I was constantly falling.

 

And then came 2014, which is as I should remember the year I’m trying to sum up now. It’s been a year of extreme opposites. A year of devastating news as well as love and happiness greater than I’ve known ever before. Looking back, to me it seems it all began to fall apart that night in Berlin, where after a work thing late at night on my way back to my hotel, I slipped on a patch of ice and dislocated my knee and tore a ligament. That was the end of January, and that was the end of my health and my strength. It took me a few months to get back on my feet (quite literally, I was hobbling along) only to realise I just never got really well again. And that, of course, was the start of finding out about the cancer.

 

Never in a million years, as I welcomed the new year with bubbles and kisses all round, did I think this year would bring me to that. But I guess that’s the case for all of us - we just don’t see how it could ever happen to us until it does. I’ll not try to put to words the feeling of finding out you’re dying, I just can’t. Most of all, I felt small, and helpless, and terribly, terribly sad for my childrens sake. Then I felt angry, angry at the loss they would face, all the things I would miss out on. And then I decided the doctors were wrong, I would prove them wrong, I would be the miracle. And these are still the feelings I go through, and probably always will. It’s like a silly waltz I do: One, two three, one, two, three, sad, angry, denial, sad, angry denial. Round I go. Hello, new life. Dizzying.


But, as much as I hate having cancer, and believe me I hate it with a vengeance I never knew before, looking back on 2014 also means seeing Ilir and the kids and our wedding, remembering the times I’ve spent with good friends and great wines, all that laughter. Yes, I’ve seen more of the inside of a hospital than I ever would have wanted, I’ve been in pain and I’ve watched my own body be slowly poisoned beyond repair or recognition, but I’ve loved, and I’ve laughed, and I made others laugh too, and I am still here. 2014 will always be the year I found out about the cancer, but more than that, it will be a year I have seen through, and for that I am grateful. And as I sum it up, I weigh it out, and there is just as much love and happiness as there is sadness and sorrow. Perhaps the only thing that matters is that it is a year I am happy to have had?


Good days and bad

by Hilla Duka - View comments

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How can you stay so positive? It’s not just once I’ve had that question, and I hope, if my dreams of becoming a miracle patient go pear shaped, that my kids will remember me as someone who was happy. Because I am. I am and I’m not, you know? It’s a landscape of extremes. I am so incredibly happy for what I have, more so than ever before. It’s in some ways as if the cancer diagnosis put new glasses on my nose, and I can see everything so much clearer, feel so much stronger. I love my life, and the people in it with a new sort of ferocity. I never knew how much I would be willing to sacrifice, just to stay around with them a bit longer. As parents, we often say how we would give an arm and a leg for our kids, now I get to see how true that is.

Milo and Jonathan

And at the same time, trust me, I’m not so bloody happy all the time. I cry, so unbelievably much, it’s insane I haven’t dried up yet. It’s inconceivable to me that I will die, long before my time, and not see my kids grow up, not be there for them. And when the realisation hits me that this is a likely scenario, it smites me down every time, and there I am, floored, crying my eyes out and making sounds that don’t belong in a human mouth. I can live with my present, I can live with looking odd and being in pain, but I can’t live with the idea that I will leave my loved ones. So when that idea takes a grip on me and holds me in it’s claws, I’m not so positive anymore.

 

I’ve lost quite a lot of functionality in my right hand. Chemotherapy induced neuropathy, it’s called, and apparently it’s here to stay - at least for as long as I am. I am, of course, right handed. I can more or less type on a computer, though not write by hand. I can’t draw much, or crochet, and I really shouldn’t hold a cup with that hand. It hurts, or rather aches, quite a lot of the time, and it’s very swollen. Still, I don’t care. Take it - take my arm! I want to shout at the cancer, or the chemo - it’s very hard at this point to know who or what I hate. Take it all, if you will just leave me with some life left in me.

Ilir and Milo
These are the thoughts that go through my head, especially as I recuperate after another round of chemo. When my days are filled with vomit tasting and aches and pains and loneliness and mind tricks. And then I pick myself up, after these long days are over and I finally have some energy again, and I go out and have a coffee with you, and you ask me how I can stay so positive. This is how. There are good days and bad, even if I don’t show them all.


Burn brighter

by Hilla Duka - View comments

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This morning a young woman died. She was a mother and a wife, beloved by so many, and she had fought long and hard to keep her breast cancer at bay. As I read the update by her husband, big warm tears fell down my cheeks, this overwhelming sadness that this day had to come. I had never met Ewa, but she warmly welcomed me into the sad society of cancer patients when I was first diagnosed, gave advice and offered experience. I watched her appear on Swedish program Agenda, to ring up the debate on why different countries have different rules on which medicines to give. She spoke of her friend, who didn’t get the same medicine as she had, and who had now passed away. She spoke of how she called her friend one day, but her phone was answered by her husband, who told her that her friend had passed away during the night. And now it is her own husband who has to inform people that it is she who has passed away. I think about the fact that unless I become the extreme miracle, one day Ilir will have to post the last post for this site, to tell you all that I have died.

 

The unfairness of this illness overwhelms me at times. We are young mothers, juggling careers and kids and a love life and friends, and this horrid disease kills anyone, no matter how loved or important to others. Before their time, without having been given the chance to play out their part. And left behind are mourning partners, children too small to understand, or at least should be too small to be forced to understand, brothers and sisters who’ll battle this death for the rest of their lives, living on with survivors guilt, mothers and fathers who shouldn’t have to bury their daughters, friends left hollowed.

 

When I first found out I had cancer, my initial reaction was “Not me! This can’t be right, I have small children to take care of, to be there for!” I have sadly learned since then, that cancer doesn’t care. And no matter how I rage against it, I can’t change this. I can’t change it, but I can’t accept it either.

 

I spend so much time meditating these days, and it’s truly brought me closer to understanding the vastness of life, of mind. I think it’s extremely hard to discuss mental/ spiritual experiences - if the person you’re discussing it with hasn’t felt anything like it, it’s hard to communicate and really get across your experience, so for now I’ll leave that area untouched. At the same time, much of what I write here is for the benefit of my boys in order for them to one day get to know more of me, so one of these days I will have to try to write that down. For now, I’ll leave it with saying that my meditating experience has left me sound in my belief that it is not the person leaving this life that suffers, but those left in it. Today, my thoughts go to Ewas family, indeed to all the lives she touched, that will be hollowed by her absence.

 

It is my firm belief that one day, cancer will no longer be a life threatening disease. That one day, there will be effective treatments for it, but we are not there yet. Only by allowing greater funding for cancer research can we get there, and while we wait, people are dying. Please consider donating to cancer research to help speed up the process! Help us burn brighter, for longer.