Shabbat shalom

by Hilla Duka - View comments

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One of my favourite traditions in judaism is Shabbat. Come Friday evening, you get to gather your loved ones around you, eat what is hopefully a really good meal, drink some nice wine, and just appreciate that the week is over, all the duties and stresses of everyday life taken care of, and you get to spend some time relaxing with your loved ones. Ironically, before the diagnosis, I worked hard all week, and come Friday, I’d have some wine with friends or go out, but just getting home to do Shabbat dinner with my kids wasn’t on the agenda. In theory I liked it, but in reality, if I was home I was knackered, and if I had any energy I’d go out.

 

These days it’s a different story. In my tiny new life, preparing for Friday night has become a big deal. All week I see the kids and Ilir off in the morning, and then spend the day in uneventful waiting for them to come home. Shabbat has become a ritual I look forward to - the weekend, when all the kids are home and we can do stuff together, my beacon of light when the week itself feels empty and gloomy.


And then this: after having eaten well, to take our glasses, still sipping the wine from dinner, sitting down together in the sofa, happy and stuffed and tired. Then Jacob brings the orange cake he and I baked earlier, we pull out some new plates and bring the Shabbat candles from the kitchen. And I sit back and watch them, these kids I made, this family I got, all of them calm and happy and peaceful, all of them loving and caring towards each other and me, and I can’t help but feel so grateful. For tonight, for these people, for this life.


The reason I write (or don't)

by Hilla Duka - View comments

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It feels like I’ve been quiet for ages, but I guess it’s not much more than a week since I posted anything. I’ve had my hands full, in a manner of speaking. I’ve been battling windmills for a while now, in the unwelcome form of my insurance company. Through work I had a health insurance with Skandia, and after my diagnosis with advanced breast cancer, they decided to dig deep into my old medical journals, to come up with some way of denying my claim. So first they went with an idea that I had asthma, and that because of this they wouldn’t have to pay. Then as I could prove I didn’t have asthma, they went further back, and found a post partum depression, and claimed they wouldn’t have to pay because of this. I was basically just set on fight mode - not for financial reasons, as my lovely work, recognising vultures when they show their faces and not wanting to be any part of that, are financially levelling what Skandia are refusing to pay, but because the more I tried to sort it, thinking it was all just an unfortunate mix up, the more I realised that this is something Skandia have systematically been doing for ages - dragging very sick people's medical records through any alchemical mix they can whip up, to try to make anything, a prescription for cough medicine, seem like a good reason not to pay. So finally I had enough, after hearing the same story from women in my breast cancer group, from my doctors office, I decided to go public with it. Not because I like to take my dirty laundry public, or because I enjoy feeling like a victim, but because it’s not right. It’s not right what Skandia does, but as much as it hurts me that they get away with it, I now need to draw the line and admit that I can’t fight any more - I must focus my energy on positive things, and try my hardest to stay well for longer.

 

Then as the story went public, I had my round no 7 of chemo. I have to be really grateful for two things: It was not as bad as chemo no 6, and the worst is over now. I should probably be grateful for more than that, but as I’ve felt as if I’m pregnant with a Coca Cola baby now for a week, that’s about all I can muster. The hyper sensitivity thing is really freaking me out: I can smell someone’s perfume miles away, I hardly allow Ilir to put any on. I can smell the citrus scent of peeling clementines from across the room, and the smell is so strong my eyes tear up. The little new hairs on my head hurt my scalp as they move. The list is endless, and it’s surprisingly hard mentally to never be comfortable.

 

I guess that’s the other reason it’s been a while since I wrote any kind of update - this whole cancer thing is really starting to wear me down, mentally. Some days, it’s as if I have to go through the realisation all over again, because my mind has just stopped remembering to understand that I have cancer. All of a sudden, the notion that I would be ill seems so ridiculous, I want to laugh at it. And then I remember, I touch my portacat and the cord that goes into my main blood vessel, I feel the tiny hairs on my head, and look down to see my blackened fingernails. I think back on all the countless of procedures and checkups I’ve done, the lymph node biopsies, the bone marrow drilling, the lying in tiny machines that force me to take such coctails of anti anxiety pills that afterwards I can’t even remember I did them. Ok, so cancer kind of makes sense then. But only kind of. Part of me is still waiting to get up and get back to work, to be apart of something more, to laugh with friends over silly things and just not be dying.

 

But perhaps it’s the other way around - perhaps I’ve been feeling worn out because I haven’t been writing. There are so few things left to me now, and around the first week of chemo, I basically only see my own home. The one thing where I am completely free is in what I write, there I can still explore my own mind, and when I feel like it I can be (a bit) witty, and I can focus on whatever I choose. I chose, as I found out about the cancer, to keep writing so that i could preserve something honest from this, something more than social media updates that even at the best of times will not paint a true portrait of your life. Imagine how fake it is during the worst of times… So from the beginning I used this blog to be uncompromisingly honest, to write about what moves in my head as I’m trying to learn how to do something each and every one of us will have to do at one point. I kept writing because it became something I have built by myself, from the technical framework to the texts. I kept writing hoping that it might some day help the kids to read. But I think one of the key reasons I write, that I missed but that matters, more than all the others, is because it helps me. Maybe writing obscure bits of texts on life and parenting and death and chemo has become my second therapist (much cheaper than the first I must admit), and I can no more chose not to write when I feel too sad than I can chose not to eat when I’m starving? What a very twisted thought. Weird, but oddly comforting...

 
This little guy on top, the least magical creature in all of Fairy Land, was originally doodled at the plane back from our holiday. Today, he can  represent me in my utter failings as Don Quixote. 

Not a warrior nor a princess

by Hilla Duka - View comments

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Since I found out about the cancer, I joined a couple of groups on Facebook about breast cancer/ chronic cancer. Way too often, someone posts that another member has “lost the battle” or that “heaven has a new warrior princess” or something like that. Of course, I get sad that another woman has been lost to this absolutely horrible disease, but more and more, I find that the terminology offends me.

 

Do me a favor - when I die, don’t refer to me as a warrior princess, or a warrior at all. I’m not fighting for any ideal, and I’ve not been given the choice to fight or refer from it. Soldiers, warriors, fight for something. They are willing to lay down their lives, in order to achieve change. I never had that choice, and I’m not fighting for a grand ideal, I’m just doing the best I can to have more of my life. I am not a warrior, I am not at war with my body - I am trying my absolutely best to help my body get rid of a disease, just like it would if I got the flu. And in this life, if the measure of success is cheating death, then we’re all failing. I am just trying to have the best kind of life for as long as I possibly can.

 

When I die, don’t say that I’ve “lost the battle”. In fact, in no way at all refer to this as a war, because it’s not. If this life of ours was a war with the only measure of success staying alive, then we’re all losing. At one point, each and every one of us will die, that’s the order of life. And we can hope and pray that we have a good life and a long life and a clean death, but that’s about it. I hate that I have cancer, but I don’t think that cancer is my enemy. Cancer is my body’s misplaced attempt to correct something, an infection, that was going on inside me. It’s rotten luck. Cancer is not the enemy, because there is no thought or consciousness within it. It’s a horrible disease, that’s what it is. I’m not at war with anyone, and cancer is not an evil person. People who use these terms have a very loose grasp of the ugliness of war, the vastness of evil.

 

I made my brother promise that when I die he would punch anyone calling me a warrior princess or something to that extent in the face - that’s not how I want people to think of me or refer to me. Want to know what I am? I am a mother and a daughter and a sister and a wife, and most of all I am a person - one who loves her life and wants it for as long as possible. That’s all, and it’s enough.


The here and now

by Hilla Duka - View comments

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I am now past what has been the worst week of the worst treatment so far - finally I can say that it’s over. The treatments, or rather my reaction to them, seem to worsen for each time, and this round I was knocked out for six days straight. Six days of having nothing but the taste of vomit in my mouth, not being able to eat or drink anything with relish, of my head feeling very drugged up, and my body aching, left completely without strength. As day four, and then day five approached, I hoped and thought that they would bring comfort, that I would feel better, more like myself. On both those mornings I woke up, looking for signs that I was past it, only to find it was still as bad. That crushed hope was hard to take, although I hope now to have learned for how long it will be bad, and accept it better next time. Next time… Four treatments left, all-in-all a month of feeling this ill, albeit split up over four different weeks. I try not to dwell on that too much, but look forward to two weeks of not feeling like that anymore, and to try to imagine a time when the treatments are done for this time, to imagine receiving good news at the last checkup, to having some time to be well after chemo is over for this time.

 

The days that I am so weak are hard for me to go through, but I think much harder on those around me. I hate that they suffer, hate seeing them worried about me and not be able to reassure them in any way. Cancer has affected everyone in our family, and their lot seems to me to be worse than my own: I can think of nothing as heartbreaking as watching someone you love go through this and feel so helpless as there is nothing you can do. But then I think of how horrible it would be if I did indeed go through this alone, without anyone to care for me or worry for me, and I am grateful to be surrounded with people who love me, who are prepared to be there to offer what support can be had, even though it hurts them.

 

As I was at my worst, in a rare moment of actually being in control of my head, I realised something that I think is fundamentally important: This is in no way different from anything else in life. Yes, I have cancer and it is a chronic and terminal disease - but so is life. Life hands us good turns and bad, and when we’re on a high, feeling loved and successful we feel as though nothing could touch us. But then life takes a turn, be it cancer, or divorce, or any other punch in the stomach, and we’re down, feeling like failures and miserable to the boot, but we get up, lick our wounds, and come back.

 

These turns are part of everyones lives. There is only one time, and one time alone, that we do not get back on our feet and put ourselves back together again, and no one can know when that time is to come. And we cannot live our lives in fear of that time, or in denial of that time, we can in no way let that one, future time when we don’t get back on our feet rule the life we have. I am thirty five years old, I have thirty five years of experience in putting myself back together and making the best of new situations. This I must rely on. It is exactly the same now, with the cancer. Right now, I’m in a bad situation, one I would not wish upon anyone, but I need to focus on getting through the treatments, and picking myself up, because after there will be good times to be had, times of feeling loved and successful, before the next blow comes. And I will be ready to enjoy the next good roll. I know there will come bad blows again, the cancer will flare up again, and then I will work with my body to help it rid itself of it again.

 

When I found out I had cancer, it was as if I died then and there. I mourned the life I would not have, the loss my children and loved ones would have to go through, even before it happened. This new understanding has brought me back from that place, has made me realise that I can live with cancer. No one can say for how long, and I will not dwell on prognoses: they are statistics, no one has seen me fight this before, and so cannot predict for how long or how well I can do this. I don’t mean that in some megalomaniac, narcissistic way: I by no means think that I am fundamentally different than the scores of other women fighting this illness, I just mean that each person is unique. Our makeup, our DNA makes us all different, in ever so small but important ways.

 

When doctors use the term “terminal cancer”, they mean that medically, but we as patients take their words as law - the diagnosis and the prognosis. Yet if I am in remission, if there - for a period of time - are no cancer cells in my body to be found, then I myself must think of myself as well, and enjoy that time, be it six months or ten years. And I must make as much of that time as I can, that is what I owe to life, and to myself. It is the debt we all have to life, and to ourselves: to enjoy our time as much as possible, to face life full on, grab it by the throat and enjoy it in every single way we can.

 

If the end goal of life is to cheat death, then we are all losing. We live in a time when most of us are not forced to live with death as a part of our lives, and so we ignore it and think that we can go on ignoring it forever. But all of us will one day die, the goal cannot be to survive for then we will all fail, it must instead be to have as much time as possible, as good of a time as possible, and a clean death at the end of it.

 

If I look back on the thirty five years I have lived so far, there are of course things I regret. Lost chances and words spoken harshly mainly. But there are so many things I feel I have done well, and I afford myself to look on those things with pride, to take pleasure in remembering them. I am proud of myself for the chances I did take, I am proud to have loved and been loved, and I am proud of my children. The things I regret I don’t dwell on, but use them like I use the things I am proud of: as guides to what mistakes to avoid in the future. So that when my time comes, I can look back on my life, and feel peace in that I lived it well, that I fought to get as much time as I could, that I fought to make that time as good as it could be.


Breast Cancer Awareness Month

by Hilla Duka - View comments

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October is, as is hard to miss, Breast cancer awareness month. Last year, I saw all the little pink ribbons, lying on display at every possible checkout, but they affected me little. I think I bought one, maybe I wore it for a while: unknowingly pinning it to my breast where the same sickness was already wreaking havoc, but all in all, for me breast cancer awareness month passed quite unnoticed. Little did I know that the very same illness was already ravaging my body. Little did I know, that the next Breast cancer awareness month, it would hold a completely new meaning to me.

 

It’s recently been stated that breast cancer research gets an unproportionally large amount of funding, and a great chunk of that is from private donations. It would seem easy to argue that some of that funding should go to other cancer research projects. I have two points I’d like to make in the case of why funding breast cancer research is so vital.

 

One is that even though the amount of people diagnosed with breast cancer are proportionally smaller compared to the amount of funding breast cancer research gets, this disease is rapidly slipping down in ages. Once a disease affecting postmenopausal women, the amount of young women now taking ill is growing rapidly. This means that the people affected by breast cancer are no longer mainly older women with grown up children about to retire, but new families with small kids, women in the bloom of their career. If we don’t find find a way to cure this, we are facing a new generation with lost mothers, children who’ve spent their childhood watching their mother, who was supposed to be strong for them, in and out of hospitals, always worrying if the cancer will come back, start growing again. This means our workplaces, indeed society is losing out on vital contributors.

 

The other is more altruistic. The reason so much research funding is put into breast cancer research is that it is easy to induce and grow on mice (I know, animal testing is not an amicable subject) and the conclusions drawn will more often than not affect not just breast cancer medications, but other forms of cancers as well. Today, there’s a huge list of new medicines now available for kidney tumors, pancreas, brain cancers and other forms of cancer, that were originally tried out for breast cancer. Simply put, research wise - it’s a good place to start!

 

Lately, there’s been an international outcry for more research to be put into advanced breast cancer treatment, and this will also be something that benefits all patients with metastatic cancers. Once a tumour metastases, it takes on new abilities, and we to this date do not have any real means of fighting them. This means that for anyone that’s diagnosed with advanced cancer, there really isn’t anything that can be done from a curative point of view. We get meds meant to control the spreading, hopefully reduce it, but not cure it. At some point, it will return, unless we find new ways to fight the new abilities taken on by the metastases. Research here is vital, again, not just for breast cancer, but for all types of cancers. 

 

But if I can make just one case, and get through to anyone reading this - please check your breasts. Do it often. Check to see if your nipples are aligned, check their shape and colour, and if you can’t remember from time to time, take a picture. Feel the sides of your breasts for any lumps, all the way up to your armpits and collar bones. Weigh them in your hands to try to feel if there’s a difference, and if there is, go see a doctor immediately. Until there is a cure - early detection is key.

 

Also, take strange symptoms seriously. For me, I went to my normal doctors office countless times, for vague symptoms like fatigue (but hey, I was doing about 60h a week and had three kids, how could I not be tired?), getting a head rush from standing up too quickly (but hey, I knew I had low blood pressure), constantly coming down with a flu or a cold and not getting well in a long time, and being in the worst shape of my life (which I completely blamed myself for as I couldn’t work out as I was always coming down with something). These doctors prescribed me coughing medicines, and sent me on my way. Not one of them took a simple blood test, that would have revealed that I was severely anemic and most likely had cancer. If you feel that something is wrong, demand to get a blood test.

 

Breast cancer affects everyone, and even though this year you’re looking at the pink ribbons thinking it’s nothing to do with you, you never know where you might be next year. It may never affect you - and I sincerely hope so! But you may well find yourself with a mother, sister, colleague or friend who now struggles with cancer. Please donate to research. A pink ribbon, or other products available throughout October are fine, but even though it’s less sexy, please also consider donating straight to the research charities themselves. And please, please, please, check your breasts! If you have no idea how to do this, ask your GP to show you. In this strange society, breast have become something sexual first and foremost, and a biological part secondly. Don’t succumb to this. Do not accept it. Be it checking for tumours, getting help nursing, or anything else, your breast are first and foremost an important part of your body, not something to be embarrassed about and not to be sexualised.

 

Sorry for this very long and at times rambling post. This comes from one who is now battling with metastatic breast cancer, with an average survival of 18 - 36 months, recently drugged up on chemo which is wreaking havoc in body and mind, someone who is doing everything in their power to stay alive and well-ish after having discovered this much too late.


Adventures far away

by Hilla Duka - View comments

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We’ve had a truly wonderful week of sun, swimming, food and drinks, and are now back home again. Before I go into all the loveliness of the week, I want to direct a huge, absolutely massive Thank you! to all the people who contributed to make this week a reality! I really can’t thank you enough - but I hope that you can feel my gratefulness even though my words are inadequate. With all the madness of being on sick leave, insurance companies making trouble and refusing to pay, there really is no way I could have afforded to do this trip if it wasn’t for you. It’s a memory the kids will always have of a week away from this horror that has become their lives (and if they forget, I’ve taken about a gozillion photos to help them remember!). 

 

Jonathan jumping in to the pool

 

The kids swam in the pool non stop. Jacob (almost) learned how to swim - which is a huge step as he’s been quite scared of water before. And since he’s so skinny, we can’t really go to the swimming pool close by - he gets cold after five minutes (and by cold, I mean his lips are blue and he’s shaking non stop). Here, he could practise jumping into the water and getting his head completely under water, eventually brave enough to remove his arm pads and practise floating (not so easy when there isn’t an ounce of fat on you apparently), and eventually trying to swim. He can manage a few metres, and most importantly, he’s no longer terrified to start his obligatory swimming lessons next year. Jonathan, who’s always loved being in water had  an amazing time, jumping in and trying to do tricks in the water as often as possible. Milo’s still wearing his arm pads, but can move around and has finally stopped referring to getting his head dipped as “drowning”.

 

Milo by the pool side

 

When I needed a rest, Ilir took the boys to the sea, where they got to swim in the Atlantic, get splashed by waves and look for sea shells and pretty stones.

 

Jonathan and Jacob by the sea

 

Milo by the sea

Milo got to meet Bamse, though he was somewhat hesitant he finally gathered up his courage and went to say hi. He was fascinated, even though he explained several times that he knew there were people in the costumes, at the same time they were the characters from Bamse as well.

 

Jonathan was most impressed with the idea that someone would wash and change the towels and sheets for us, he thought that was a luxury quite beyond belief. And I realised that of course, they haven’t stayed at a hotel before: whenever we’ve traveled we’ve rented a flat, or stayed with relatives: this was all new to them. And even though they enjoyed the idea of always having food prepared, they all agreed that they preferred Ilirs cooking, saying how spoiled they felt for having someone cook such good food for them. So for tonight they’ve ordered him to make carrot patties for dinner!

 

I decided I might as well go scarf-less, since wether I wore scarf or not seemed to have little impact on the amount of stares, pointing and whispers I got, so I figured I might as well be as comfortable as I could!

me and milo by the pool

The flight, though a good five and a half hours, was a breeze, at least as far as the kids were concerned. And considering how the other kids on the plane behaved I was so proud of my calm, well behaved little ones. I was less happy with other kids on the plane, but I suppose there must be at least one baby screaming his lungs out on all planes… I’m just happy that kid doesn’t belong to me! Usually, I’m not the one with the best behaved children, they run a bit wild, are highly opinionated, and tend to get into arguments with each other constantly. But they do have good flight manners! No loud voices, no kicking the next chair, no wrestling for armspace or reclining your chair, and definitely no, absolutely no crying. Actually, I’d say they’re better than most fellow passengers on any flight!

And as we were heading home, the kids told me how happy they were with their holiday, how much fun they had had, and how pleased they were to be back home, and my heart filled with gratitude that I had been allowed to experience this with them. Again, thank you! Now we're safely home again, and tomorrow it's back to reality as I head in for treatment number six.

 

Magic and heroes

by Hilla Duka - View comments

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I’ve just finished our bedtime routine. The kids all tucked up in their beds, with kisses for each lovely boy, me telling them I love them, to sleep well, and I’ll see them in the morning. I’ve read the story we’re reading for bed time right now, it’s non stop magic and little boy-heroes and happy endings. Milo’s sleeping on my arm, and I hear the sound of Jacob and Jonathan breathing, deeper, slower, telling me they’re falling asleep as well.

 

I stop reading, mark the page by the standard non-library-friendly dog ear, and put it away. I turn to face my little Milo, my face close to his. I look at his lovely long lashes as they grace his cheeks and flutter as he dreams. I feel his breath on my face as he exhales. His heart beats fast into my sick breast, and I feel my own respond. It aches acutely as I feel the loveliness of his being so close to me. For a minute, I think I will surely explode from these feelings. The love, the gratitude, so strong in my whole body. I made these boys, and they’re so beautiful, so lovely as people, and smart and funny to the boot. Such grace, so much gratefulness.

 

I slip out of Milos bed, turn to look at the lot of them - asleep, peaceful, dreaming dreams of adventures and fairy tales with wonderful endings. I quickly slide out of their room, before the sound of my crying can disturb them. Into the kitchen I go, and with a cup of tea, I let go and let the tears fall freely. How can they be forced to go through what lies ahead? How could I ever let go?