Showing blog posts tagged with: work

YOU HAVE TO UNDERSTAND, THAT NO ONE PUTS THEIR CHILDREN IN A BOAT UNLESS THE WATER IS SAFER THAN THE LAND

by Hilla Duka - View comments

sunset over the ocean

I’m so lucky, it’s ridiculous. Here I am, with my cancer ridden, broken down body, my fear of leaving my amazing boys, and the more or less constant pain. Oh, and there’s the little detail of the fact that I will most likely die way before my time, and I will still say that I am so lucky it’s ridiculous.

When I found out I have cancer my friends, family and coworkers gathered to offer their sympathies. Mynewsdesk, the amazing company I work for, guaranteed me that I would keep most of my income during sick leave, so that I would not have to worry about money in the middle of all of it. My colleagues in Oslo and in London sent flowers, and baskets full of thoughtful cards and loving gifts, even customers reached out with caring letters, and I don't even have a customer focused position. Acquaintances became friends, and my best friend and the father of my children became my husband. The outpour of love and well wishes was, and continues to be, simply amazing. I received so many messages of hope, love, encouragement, and I was only one person. One person with bad luck and a limited future. So you see, I really am so very, very fortunate.

 

Others are running for their lives, fighting unseen and unheard, drowning in waves of indifference, their future washed away, simply for having the bad luck of being born in the wrong place. The images are horrible, they are literally the very worst thing imaginable, yet if they lead to a more humane stance towards refugees, if they can elicit compassion and make people understand that we have a moral obligation to help, then perhaps publishing these images are worth it. Because the very simple truth is - it’s about human lives. Human beings are running for their lives, and if that is too hard to understand, if you can’t understand the truth of the now iconic “You have to understand, that no one puts their children in a boat unless the water is safer than the land”, then there is something fundamentally wrong. People are dying on the Mediterranean because we won’t let them take an airplane. Because their homes are war-torn and we’ve stood idly by. The only decent thing to do now is take care of these people. Let them in now and sort out the details later. There are a number of great organisations helping, the Red Cross, Medecins sans Frontieres, or smaller initiatives, like Blogghjälpen, set up by a group of Swedish bloggers and aiming at raising 50 000 SEK for UNHCR. We can all do something to help them help. 

 

My employer, Mynewsdesk, sent out an email on Friday, with the modest title “An early Christmas present”, letting us know that in answer to the nightmare on the Mediterranean, they’re donating €50 for each of us to the Red Cross, it made me feel so very grateful. Considering how many employees we are, this is a donation of almost €9000 to the Red Cross. Most companies give their employees some form of Christmas presents. In my opinion, a donation is much more valuable and appreciated than some piece of plastic that will lie around unused. Why not deliver your Christmas presents early this year? People are dying, and because of a small child and a horrible picture the world is finally taking notice. Let’s make the most of that momentum, raise as much money as possible, change as many minds as possible, get as many people into safety as possible, now.

 

I may not be around in twenty years, to face the questions from my kids, see their faces as they ask what I did in face of this humanitarian crisis, but if I am, I will not have to tell them I sat idly by. I will tell them that I did what I could, and that I am proud the company I work for did as well.


Title is a quote from a poem by Warsan Shire. Please take a minute to read it, it is incredibly powerful. 


Here comes the hard part

by Hilla Duka - View comments

white flower petals on green

Tomorrow (or today, as the clock has already passed that magic, midnight marker and created a brand new day, never seen before) it’s time for my three months check up, and so naturally I’m wide awake, worrying, thinking back…

 

Three months ago, I was given an  “all-clear” checkup. To the best of their abilities, they couldn’t see any growth, and so I was given the gift of three more months. It’s the best news someone in my situation can hope for. Now, as I beg / plead / hope for another three months - for the same news again, I suppose it’s only natural that I look back on my last gift, and try to weigh it out -  did I do something good with that gift? Only I’m not sure. I know I’ve spent time with my kids, and that was time well spent. Yes, I got to do some of the big things, like hear them sing their summer songs with the school choir, and celebrated end of school. I actually took my kids to see Valborg (Walpurgis, with the big bonfires) celebrations, but most of all, I got to cuddle them. I got to hold them when they cried, when they worried and were afraid of dying, I got to be there for them and tell them it would all be alright. I used those three months to help friends, cherish time with my kids and for the first time ever, go on a no-kids trip with my husband. In that sense - time well spent.

 

However I still focus way too much on work. I think about work when I’m not working, and I still answer my work emails at night. The last few months I’ve been so very stressed about work, as  I managed to make the classic mistake of accepting a larger workload than I could actually do well, and that’s really affected me strongly. I don’t handle stress very well with my post-chemo brain, which means I need to get really good at not getting stressed. I haven’t been very good at that. I love my job, and I care what happens, but I need to improve myself here before I can be of help to anyone else. When I was on sick leave, all I wanted was to get back to work. Now that I’m working again, I realise it’s not as easy as that. It’s not just working, it’s working with a purpose, mindfulness at work, if you will.

 

Also, in the back of my head is this notion that I should do something great, for the good of others, and I’m really not doing that. Like, sell all my belongings and work with children in Syria or something. But I’m not, am I? Instead, I trudge along, see my therapist, my physiotherapist, the nurses. I take my medicines, I pray and hope for the best and I try to be thankful for every bloody day that I get. And then when some dull ache in my back won’t go away for days, I break down from the worry and agony of not knowing, of always waiting.

 

If in a week or whenever the results come in, I once again get the all-clear verdict, no sign of growth, how can I take that gift and spend those three months better? How can I make sure, that in the end, those months mattered? Im starting to get that these are questions I need to find a way to answer, if I want my life to have meaning and purpose.


Tomorrow is the easy bit. All I have to do is get a shot up my arm and lie in a machine. Next comes the hard part - waiting for news. And that’s the really fucked up bit - when you have advanced cancer, on some level you always do that - just wait for news and do your best to not completely lose your marbles while waiting.

Milo playing by the fountain


I measure it in milimetres, in minutes of love

by Hilla Duka - View comments

ridiculously lovely proper champagne

Last week ended with a planned visit to the oncologist - I will go every three months, but this was the first one since the end of chemo. Basically, it would tell us if my body's responding to the hormonal treatments, so obviously I was quite nervous. It didn't help that the doctor who did the ultrasound a week previously had complained that two of the lymph nodes in my left breast were enlarged - she had me worrying non stop for a week. But all was well, or at least as well as I can ever expect. No sign of anything growing. Those have become the words I live for, once every three months, no sign of growth.

 

 

These last three months since I finished chemo have meant big changes in my life. I'm back at work 50%, which is amazing, and something I'm really happy about. Unfortunately, my body hasn't recovered as well as I hoped that it would: my joints are stiff and my back hurts. Stairs are difficult, both up and down though for different reasons, my arms fall asleep often and I'm pretty much stuck with morphine and other pain medications every day. Basically, I thought I’d feel closer to well once I was done with chemo but it turns out “well” is as far away as it ever has been, which sucks. Thankfully I have work mates and family that are all ridiculously understanding and sweet to me, so today as my eyes teared up from pain I couldn’t cope with, my lovely husband dropped everything to come and get me, my lovely coworkers were sweet and understanding and my drugs and bed were more welcome to me than ever before.

 

 

Still, I have to repeat it to myself: it was good news. Nothing is growing now, so I have won another three months. That means another three centimetres of hair growing on my head (I’m getting quite shaggy already!) another few months of rest that my body might get stronger, more time for lovely moments with the people I care the most about. I will make plans for the summer, I will see the one year anniversary of finding out about the cancer. At the time I thought I was practically dead already, but now it’s close to a year later, and I’m still here. Altered, to the point where I sometimes don't even recognise myself, but I’m still here.

 

 

I’ve gotten quite good at being grateful for what I have, so the few words - No sign of growth - deserved a bottle of a lovely 11 year old Champagne, and toasts and laughter all day long. It might be nothing to a healthy person, but to me it is eons, it is an ocean of possibilities, it is what I will forever be asking for: It is more time.

Champagne glass

 


The art of living

by Hilla Duka - View comments

2014-07-26_06.31.25

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.


Back to school

by Hilla Duka - View comments

Back_at_school

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.

 

Not football

by Hilla Duka - View comments

Photo

I had this post planned out in my head. It was about football. Basically, some specific and in my opinion helpful tips that would in general improve the game. It was a cheery and trying-to-be-funny post. That's not what I'm writing today. Today, it'll just be a sad and depressing rant / up-to-date since I don't feel witty or funny or anything positive right now. The tests came back, and the cancer has spread to the bone marrow and to the skeleton. I was so busy staying positive, that wasn't even an option I had considered, and it's just left me devastated, in complete and utter shock. 

 

I wake up in the morning, and the tumors in my neck hurt (a lot) and the metastases in my skeleton, mainly in my lower back, hurt (a lot). As I wake up, there is no longer that brief moment of pause when I still think everything is normal, and then it hits me that this is now my life. I wake up now, and I know it's bad. It still kicks me in the groin, but it's not the completely unexpected kick it was at first. I can't even get a massage, because apparently, everything that's good for me is also good for the cancer. I'm wondering if smoking or getting stoned (which by all accounts should count as bad for me), might kick the cancer a bit? I'd be willing to chip in, you know, for the general good and all. As it is, I can do a bit of yoga, and Ilir is making me smoothies with icky stuff like wheat grass, spirulina and such in them. 

 

My blood values went up after I had my blood transfusion, from 70 to 95, and then a few days later all the way to 99 (in spite of my body's brilliant idea that the day after the blood transfusion was the best day to have my period), so hopefully I wont need another blood transfusion before I start chemo. (Normal people have an HB of between 130-175, so all of this still counts as severely anemic.) 

 

The plan now is to start chemo next week, then do a series of hopefully ten treatments, and - fingers crossed! - watch all the tumors in my body shrink down or disappear, and then keep me on anti hormonal treatment and keep our fingers crossed that the cancer cells don't decide to start growing again. Which they will at one point, but my plan is also to stay extremely positive that some kind of wonder cure that can kill skeletal metastases will develop, if I can just keep it together that long. The thing is, no matter how much I try to focus on this positive image, my mind keeps returning to the much less happy scenario of well... I'm sure you get the picture. 

 

It hurts so bad that my kids will have to watch me be ill, that they need to watch me be weak and worry about me. So far, I've told them I'm sick and that the illness is called cancer. I've told them that I'm not working right now, and that I'll never be completely well again. I so, so, so much don't want to have to tell them any more than that. We know that the cancer is hormone receptive, which is at least one good thing in the midst of a million bad ones, as it gives a better chance of the chemo working. Still, the fact that it's in my bone marrow and in my skeleton means what it means. 

 

I hate that I have to wait for treatment. I hate that first I had to wait one week for a conference, which turned out to be just a meeting, since they don't see any point in surgery, and now I have to wait another week and a half, during which the cancer is spreading and wreaking havoc in my body. I know that I'll be unwell when the treatment starts, but I'd rather have that than this wait. I need to fight, and right now I'm just holding my breath. 

 

I haven't had the energy to reply to all of the wonderfully kind comments, texts, messages that you've all sent me, but I really, really appreciate them. Thank you all of my sweet colleagues and friends and family members from far away who've taken the time to write! I miss normality, I miss work, I miss my life. It's so hard to comprehend, that a few weeks ago I was a bit concerned about a weirdness in my breast, and annoyed as hell that I was so out of shape and often got sick. It's just a few weeks ago, but it's another life, and I miss it badly.

 

Now, my best positive thought is starting chemo and then being able to see how the larger tumors are shrinking. 

 

</rant>


Props

by Hilla Duka - View comments

Photo

I've kind of put off writing a new post since my last rant, thinking that I'd wait until I could do a more positive life's-all-good post. In hindsight, that means I should have written it last Friday lunch. I woke up Friday morning, aching everywhere and feeling as if I was about ninety. And finally felt like enough is enough. Full of motivation, I got my yoga mat out, went through the parts of my normal routine that didn't mean I had to bend my knee very much (ok, so basically I went through about four poses, but still). Then I did all the exercises that I've figured out how to do with an aching knee and an ankle that can't really manage pressure. And did them again. And again, until I was sweaty and breathing hard and hating myself and loving it all at the same time. In my head, I was Rocky. You know, when he's all out of shape, and then decides that he's going to get so fit he can fight the scary blonde guy? That Rocky. I could see my way forward, and it would be rough and I would have to learn to walk further than 600 meters in one go but dammit, I'd do it! And when I got to work, I could feel my muscles complaining from my morning-rocky-attack on them, and man that made me proud! And this is when I should have written this post, because then it would have been all upbeat. 

 

But since I waited, I later that day found myself in a really interesting and important meeting suddenly wondering why I was so cold.... And in about twenty minutes I went from Rocky to man-down. Serious man-cold, and basically it was all I could do just to get myself home and to bed. And for the past week, that's where I've been. Previously it has been debated whether man-colds are worse than child birth. Let me just settle that for you: Unless child birth lasts for a week (mine took 12h tops), the man-cold is worse. So my new Rocky life has been postponed. But, trying to look at it on the bright side, at least now I finally have that fighting mentality back. I'll get back on top, learn how to walk stairs like a not-two-year-old again, and get strong and fit again. I just need to pause it right now and wait for the coughing and the phlegm to stop. 

 

And as praise should go where praise is due, the picture is of my kids. They drive me mad at times, but this week, they've been the best caretakers in the world. They've brought me tea and blankets, they've got up by themselves, and given me hugs when I've been down (though staying well clear of the face area - I really don't want to have to have them go through the same thing). And when I'm coughing like a dog they pat me on the back. Even in their sleep. Let's just say, this week - they've made up for some of those sleepless nights they gave me as babies. Ah screw it, let's just call it even!

 

And to put a positive spin on it, one thing you can actually do whilst too ill to rise from the sofa, is draw little woodland creatures enjoying some of my favorite vices. Hence, this blog got a new look, with a pipe smoking rat and a coffee drinking chinchilla.