Tying a scarf

by Hilla Duka - View comments


My hair is coming off rather quickly now, two weeks into my first chemo, and it's a fine line between just thin haired and time-to-go-bald. I'd rather not shave it all off too early, but I'd also prefer not to be the last one to notice that it's not working any more. My guess is that if it continues like this, I'll shave the last bits off within a few days.


So today, as I sent the kids off with Ilir and Joel to go strawberry picking, I dedicated some time to watching YouTube clips on how to tie a chemo scarf. And trying and trying to get it right. I've had an easy enough time with the first dose of chemo, and I don't really mind losing my hair, but getting the knack of this scarves business is difficult to say the least. I'm quite adamant about not wearing a wig though, so I better get good at this. 


This first turn of chemo (I get a combination called FEC, which has been used for hormonal breast cancer for something like 20 years) has been pretty ok - I honestly expected to feel worse than I have. I've been nautious, but not vomiting, more like being pregnant those first few months. I've had some pains in my joints, I've been really tired (though that could still be the shock), but other than that I feel quite alright, though I'm assured it will get worse with each treatment... Still, I'm trying to stay positive about the fact that I've not had any of the really horribe side effects. 


One week left until my next treatment!

Not football

by Hilla Duka - View comments


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. 



Early days

by Hilla Duka - View comments


Well, the days follow each other, even if it's no longer the well-known weel tracks of before-the-diagnosis. I wake up in the morning, and for a short, blissful second, I don't remember the nightmare that has become my life, I don't remember that my life is at the stakes. And then it hits me. The force of that knowledge is now, a week after finding out, somewhat less. Now, it's just like being punched in the stomach by a boxer. I take a lot of pills, pills that help me stay calm, pills that help me sleep. It's ironic that even though that realisation of what has become reality is so forceful, sleep is still my number one preferred escape mechanism. Also, I'm still anemic (clever body choosing to have my period the day after my blood transfusion!) which makes me sleep a lot. My brother jokes that I'm like a puppy, wanting to do stuff all the time and then I go 'Oh, I need to sleep now' and I do, even if it's only for twenty minutes. 


We've had to tell the kids teachers, and they're talking about cancer and treatments in class. This morning Jonathan asked me if I would lose my hair from the treatment. I told him I would, but that I planned on cutting it short first, so it wouldn't feel like such a big deal. I haven't told them, if all goes to plan I'll lose my breasts as well. At this point, I don't even know when we can start to consider surgery, as the tumor in my right breast is too large to operate on, so we need to do some serious chemo to shrink it first. 


The day before yesterday, I had a double bone marrow biopsy. I say a double as we started out on one side of the hip, and then as the doctor despite her very best efforts couldn't drill down deep enough, we switched sides and did the same thing to the other side. I'll not say it hurt like hell, it only did when the doctor came at it a bit wrong and pain shot down my leg. Apart from that, it felt very strange having my pelvic move through no conscious thought of my own or, to me it seemed, no outward touch. Ilir and Joel were there to help me get through it, each holding on to one hand, and each looking quite pale and queasy as the procedure went on. But we go through it, and if it could only be good news (i.e. no metastases in the bone marrow) then Yay! Yesterday I went to the gynecologist as the CT scan had detected some changes to the ovaries, but they turned out to be just my usual PCOS, and was not something to be alarmed by. Also, I went to get the last lymph node, basically at the groin, punctuated and sent of for testing. If everything now tested could come back without any trace of cancer, I have a shot. 


This last week, so many kind people have reached out, offering condolences or just cursing at cancer - thank you so much! It all matters greatly, and I feel so empowered to know you're with me. I will get through this, because I don't have a choice. I have three wonderful children who need me in their lives, and who I want to be there for, and I have great people in my life that I love so dearly, and not continuing on with them is just not something I will even contemplate. Right, this was supposed to be a short update on how I'm handling waiting for more information and waiting to start chemo, but I guess it grew... Now, I'm going to tuck myself into a bath, and enjoy a freakishly coloured fruit smoothie (most likely dark green as Ilir insists on putting Spirulina into everything...)

Some news

by Hilla Duka - View comments


I'm writing this post, to let you know what's going on right now. After this, I'll maybe write, but not just casually as before. Life takes unexpected turns, and mine has taken a new one. 


So, three days ago, I went for a checkup at my doctor's, to see if I could get some clarity into what has been going on lately with me. For two or three months, I've been tired, and coughing, and lately I found two lumps on my neck. To make matters worse, I knew I had a lump in my breast, though I kept telling myself that I was sure it was harmless and would go away. It didn't and so I booked an appointment to check it up in a few weeks, but honestly didn't connect the other symptoms to that lump. I got a bit of a scare when the doctor seemed to think that they were connected. She ordered a few blood tests, which I went to take the next morning. I didn't think much of it, since she'd told me I'd not hear anything for about two weeks. As I was leaving for lunch with a friend, the doctor called me on the phone, telling me my blood values were really low, and that I needed to go to the emergency to get a blood transfusion. At this point, I felt like I was in a Kafka book. I actually did go to lunch with my friend, and in hindsight I'm glad, because that was probably my last good meal for a long time. 


They ran some more tests at the hospital, and I accidentally got to see the paper faxed (!) over from my usual doctor's. "High suspicion of malignity", it said. That was the first time I understood I probably had cancer, that at the very least, things were really serious. That night ended with me having two bags of blood. The next day, I got to see a doctor, who checked the lumps on my neck, and my breast. Thanks to her, they did a punctuation of the lumps on my neck, and they turned out to be malign. The also did a mammogram, and a biopsy on one of the lymph nodes in the breast. Basically, they think it's breast cancer that's spread to the lymph nodes. 


I will know for sure Monday in a week, but that's over ten days away. Right now, I'm climbing the walls, wondering what kind of chance I've got to fight this - best case, worse case etc. All I know is that I will fight with every bit of energy I've got, to stay alive, to stay with my kids and with Ilir. Writing this, Milo has climbed into bed next to me, his little arms touching mine, the beauty of his body so close to mine. I would do anything to stay here with them. I will do anything to stay here with them. 


I have cancer. I will fight. That's all I know right now. 


by Hilla Duka - View comments


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. 


by Hilla Duka - View comments


tl:dr - I hurt myself again and it hurts like fuck. The rest of this post will consist of nothing but me blowing off some steam and complaining of how miserable I am right now. You have officially been warned. Pic's nice though?

I'll just complain for a bit, shall I? So last week I set off for London again, which fealt really good, since I haven't been there since November, and it feels really weird not to go as often as I used to. But still, my job responsibilities have changed, and I'm no longer in charge of finding the right product fit for UK, but for all our markets. Doesn't mean the UK doesn't lie close to my heart, but it does mean I don't get to go as often as before. 


Anyway, as I made my preparations for my trip, I really did think I was being responsible - I booked a really-rubbish-hotel very close to work, and as I set up my appointments I was very clear that I needed to meet close to work and hotel, as my knee was still acting up and I couldn't jet about as much as I normally do. Said and done, first day of getting up early, dealing with airports and flying and then work, I was done for the day and headed off to meet my friend at a bar nicely positioned some 500 meters from my hotel. Only problem, the loo was one floor up. And as I came down the stairs (very nice, pretty stairs they were too, you know those really broad, industrial looking ones?) when my knee decided it had had enough of getting around and standing and walking, and gave way. Me being as I am, I didn't think much of falling down at first, it happens, and I mainly thought it was rather embarrassing and undignified, but somewhere around the second bend, I lost consciousness for a bit, and came to with the staff standing around me looking quite worried. My only save at this point was that I wasn't drunk. And being as I am, I assured them I was fine, and it was only my bogy knee that was acting up, and got back to my table and my friend. 


I woke up the next day with an ankle that was larger than my thigh, a distinctly bad looking flesh injury and bruises down my back and in my head. Concussion, I hear you asking? Well, I thought it a possibility, and went to check my pupils in the mirror (told you, I'm no noob to falling over) and sure enough, my pupils were weirdly dilated. Only, I was in London, and have had my fare share of dealing with the NHS (let me tell you, not having a national insurance number doesn't help!) and I had a big ass meeting to go to (in Slough, of all places) so I decided I just needed to toughen up, and face the day. Off I went, at the amazing, and to passers-by's not very amusing pace of probably 1 km per hour (I'm not exaggerating, it took me 30 painstaking minutes to get to the tube 500 meters from my hotel) in rush hour. Thankfully, because of my knee injury (in case I didn't tell you about that, torn off ligament, disrupted kneecap, ugly story, still hurts like hell) I already had some codein pills, which I was taking like there was no tomorrow. They helped a bit, but not a great deal. Oh, and to make matters worse, I had - momentarily insanity and I blame it on the fact that it was spring in the uk at this point - only brought high heels with me. After over a month of living in wellies, I had had enough, and thought my knee could survive some heels. Only my knee didn't agree. Honestly, I have no idea how I got through the meeting, besides with pain, and no idea how I got back. I did somehow, but since then have been in constant pain. I can't really get through a full working day anymore, and yesterday, as I tried, I came home frozen to the bone, and spent the night shaking under the duvet. Actually duvets, as in plural, because I could not get warm for the life of me. Any time I walk about for a few minutes, my ankle swells up again, The scrape on my calf hurts all the fucking time, and as I can't support myself on the side where I tore a ligament, I have to support myself on the other side, where I've sprained my ankle and have the bloody scrape to the bone. I sometimes wonder what it was ever like to walk without pain, or indeed to be without pain 24/7, but the sad truth is that I can't remember. And even sadder, I don't wonder this all the time, which in my head would be a sign of normalcy, but only occasionally. I've become accustomed to being in pain all the time. I don't have more painkillers, and trying to get a new prescription feels too addicty a thing to do, so I just do without. On top of this, I'm working still. I don't have it in me to take sick leave, so I just keep working, from home and the sofa if I can't stay longer at work. 


There really isn't a happy end to this one, at least not yet. If anyone actually read my whole rant, I'm impressed and slightly worried about your mental health. I'm trying to take it easy, trying to listen to what my body's telling me and all the soft hearted bullshit I don't believe in. I think I'll get back, hopefully to normal, but at least to pretty good, in time. It just sucks ass right now.


by Hilla Duka - View comments


Rather than showing you what's really preoccupying me right now, I'll show you these little ones. They're little friendly robots, that I made for Jacob's upcoming birthday, but then decided they should have a life of their own as well. Should I be showing you what's really on my mind right now, it would be a scary image of a swollen knee, dislocated kneecap and torn ligament... Yes, I slipped on some ice in Berlin. I walk as if I'm about a hundred years old, am in constant pain, and not best used to not relying on myself for everything. You can see why I take every opportunity to doodle and distract myself.

The event itself - a Rails meetup for Berliners, went fairly well, if you don't count getting up at 4 am and then hosting an evening doo. On my way back I slipped on an icy patch on the path, and the rest of the trip is some sort of blacked-out pain haze. 

Oh, and before we left, we had our very first all employee meeting, in which the annual awards were handed out - and I snagged one! One of the employee vote based ones, Mynewsdesker of the year, was for me, and with it came a nice little iPad mini with retina display. Why, thank you! Far be it from me to question the sanity of anyone who voted for me - I'll just think on it quietly in my head instead. You can read the motivation for the award here, and if you think it may just possibly be poor taste to refer to a short, sturdy person as a rock, well we'll just keep that quiet as well, ok? Ok. I'm of course very flattered, as well as happy for my new toy!