Showing blog posts tagged with: life and other questions

Q&A's on living with cancer.

by Hilla Duka - View comments

Manga girl with lots of cancer questions

From time to time I get questions in the comments here, find them in my Analytics, or via email. Often I can feel like the person really wants to ask but is afraid to. And then there are the people you just think really should have asked someone. So, let's do a cancer Q&A!

 

Do you want to know about my prognosis? What it's like to loose your hair, how to paint eyebrows when yours are gone, or how to approach a friend or colleague who has cancer? How you find out, side effects of chemo or maybe something completely different? Any question goes!

 

Post your question in a comment below (you can post anonymously as a guest), or email me at hello at hilladuka.se and I will put together a post with all the answers in about a week or so. I think back to when I found out, I searched everywhere for information about what I had to expect from my future, but even though there were quite a few blogs written by women with advanced cancer, none of them focused on answering the questions I had about what life would be like from now on, and I was full of them! 

 

Of course it's very different for instance how active you can be and how much pain you're in depending on what kind of cancer you have, and lots of other factors, but there are also lots of similarities, as I've learnt from discussions with people with other types of cancer. And in the end, any answer anyone can give will be their answer - there are very few truths in the world of cancer. 


A happy Christmas, again

by Hilla Duka - View comments

Christmas tree all decorated and pretty

And so another Christmas has come, and though it didn’t come easy, a small bit of Christmas spirit came too, mainly thanks to the images from crazy talented Underbara Clara (who lives in the north of Sweden and so is blessed with snow this time of the year). Here in Stockholm snow around Christmas is a rare thing these days, but we try not to talk about it too much, since my kids get very worried about global warming, and though it is tremendously important, now is not a time for them to fret over that.

 

They’ve had to take in a lot lately, my kids. First it was me, and the bloody cancer. They see me in pain, they know there are so many things I can’t do, they just adjust to it, but it’s there, under the surface, pops up in their nightmares or plays a constant undertone in their anxieties. I hate it, but I force myself to see it. Then there’s been the situation in the world around them, the flood of immigrants running from horrors too awful to try to understand. And though we don’t try to understand, we talk about it, and discuss what we can do. A while back was the terror attack in Paris, and since they've recently been made very aware of Paris, first as Ilir and I went for a weekend getaway, and then as they recently met their Parisian cousin, it hit very close to home. I talk about how the terrorists want to create division and hate, so that people will divide, some will become outsiders, and join the terrorists. I talk about how the only cure is love, compassion, understanding. They nod; it makes sense to them. But they still worry.

 

I worry too. I feel skinless these days. I worry about the same things as they do, really. The environment, how our government is handling the flood of human beings in need of safety, my health… There’s just this massive sadness inside of me, for myself and my family, for the world and what we’re doing to it. Maybe that’s why it’s been hard to get any kind of Christmas feeling going. Christmas is also the time when I feel the strongest that I really am a minority in Sweden. Born and raised here, I don’t recognise these traditions, I don’t know the songs, they just don’t belong to me. It’s only since the kids wanted it that we’ve been celebrating Christmas, and very much making up our own traditions as we go along.  

 

Thankfully, a few days before Christmas my sweet friend Li came over with her dog Buddha and together we made gingerbread cookies and had mulled wine and it started to feel a bit like Christmas.

Li and her pug Buddha in front of the christmas tree

 

The kids baking gingerbread cookies for christmas
 
And by the 24th, we managed to make Christmas, with a slightly smaller tree than last years enormous one, and less fretting about food and stuff. The kids made and bought presents both for us and for each other, and my dad and his wife came, as well as my mum and my brother and his lovely puppy, and we all joined in some sort of well meaning but slightly awkward togetherness. 
 
Cheese and bubbles for christmas
 
Why go all in on Christmas food when there's hardly an item there that we eat? We opted for cheese and biscuits instead, and some bubbles to go with it. Along with dates, pears, and organic grapes, it might be the best Christmas food ever!
 
 
Christmas eve together
 
And by the time the presents were opened, the wine drunk and the mess made, we started to relax and enjoy ourselves. No toys for the kids, as we had decided, but instead instruments, since they’re really into music right now. So with a brand new keyboard and two guitars for the Xbox, they get to play around with making music even though their parents are clueless and can't play any instruments.

off course and astray

by Hilla Duka - View comments


The road forward

I realise it's been so long since I've written, one could easily assume I've stopped. However, that's not the case, it's just that I haven't been in sync with myself. So many things have happened lately, I've felt a bit as if I've lost my bearing, and forgot where I was, and what I was fighting for.

 

So first and foremost, just to update you who might still look in from time to time - the cancer is not growing, at least as far as the doctors can tell. I'm now twelve months in remission, and so very, very thankful for it. Especially since I've recently come to realise that judging from the blood tests when I was first diagnosed, it was entirely possible that I wouldn't be strong enough to cope with even one chemo treatment, let alone ten consecutive one's. But I did, and I'm still here, and very grateful for it. I still take things day by day, I still focus more on family than anything else, but I've lost my centre, and I need to fight to get back to that calm, centered place where I felt in touch and in tune.

 

The last few weeks have been mad, I've had surgery on my hand, so underneath a massive bandage there's a scar running across my palm and up on my wrist. Or at least there will be, once the stitches are removed. Then after a short recess for Christmas and New Year's, we're doing the same thing on the other hand. Carpal tunnel syndrome, one of many little reminders of the chemo that has been left in my body... Still, no point in complaining, and I'm happy to have it treated.

 

And since misery loves company, my middle son Jacob was taken (well, I took him, not as in abducted by aliens) to the emergency room in the middle of the night for appendicitis. It was gut wrenching to see him in pain, to see his eyelids flutter to a close and be ushered from the room. After a torturous 90 minutes he was in recovery, and I sat by his side as he slowly came out of it. It was only 36 hours between going in and coming back home - one appendix shorter. But both he and I are mending well, even though we sometimes forget to be careful enough with our stitched up selves.

 

I had to return to that, as I was proof reading for embarrassing typos: Being careful with our stitched up selves. How many of us are? We're all broken in some way, be it visible or not. In our thirties, how many of us can honestly say otherwise? And honestly, how often do we take care of ourselves? In fact, we go so far as to take pride in NOT taking care of ourselves! What a crazy thought... And then we wonder why people hit the wall, get depressed, divorced, whatnot. How can it be that it's so, so hard, to just take care of "our stitched up selves"?

 

Well, I suddenly seem to have a million things to write down and let you know of, but I'll leave it there tonight, and know that I will put together another post soon.


Chapter 36, in which I stop eating, drinking and smoking

by Hilla Duka - View comments

Jonathan, Jacob and Milo - any sacrifice is worth it for them.

A year ago I stopped using any form of nicotine, I cut down my drinking drastically a month ago, and yesterday I went vegan. My 36th year has really just been about health. It’s been about  acknowledging that I need to work to survive.

 

Isn’t it weird how scared we are to talk about what we’re trying to do. “What if I fail, and then everyone will know I tried and failed!” is at least what goes on in my head. So I only talk about the things I suceed at doing. Well not anymore. This writing was always about being radically honest with myself, so here goes. Maybe I’ll fail completely and be drinking wine and eating cheese next week, but for right now, this is the truth.  

 

Almost two months ago, following two blood tests showing increasingly bad liver values, I decided to seriously cut down on my drinking. When I was new to life as a cancer patient, I remember how one of the nurses told me, “Have a drink when you feel like it, it’ll help with the chemo brain”, and so whenever I’ve felt like it, I’ve had a drink. Not like I had been drinking obsessively, but I probably had like two or three glasses of wine maybe three times a week?

 

But my liver values were consistently getting worse, and even though the oncologist claimed it was only because of my weight, and not anything I could do about it, I remembered when I was at uni and there were people who drank so much they started having liver failure, and then they’d have to stay off drinking and their liver values would improve. Maybe the same thing would happen to me to, I reasoned. Also, I’m battling fatigue, (which is way worse than it sounds - it literally means I fall asleep in like less than a minute, and there’s nothing I can do about it) and I thought not drinking would probably help with that too.

 

Because this was something I wanted to be able to continue doing if it worked, I decided not to stop drinking entirely, but cut down heavily. I would still drink half a glass of red wine on Shabbat, or on a work function/ meeting friends.

 

It’s been a little over a month, and I feel great. I can’t imagine going back to drinking the way I was in the past, even though I feel really bad I sometimes have to pour out really good wine because it’s gone bad. A small part of my brain looks on as I pour the wine out, amazed and feeling awful for the great tasting wine, but mostly I can’t imagine going back. I drink lemon water, and tea in abundance, and if I’m doing something special or feel like it, I can still have a drink, just a smaller one.

 

Besides the health benefits, which I still don’t know if I’ll see (haven’t had a blood test since i “stopped” drinking), my fatigue is easier to manage, and I feel better overall. This is the second big change I’ve made healthwise (the first being the stop-nicotine course I did, the Easy way), that I before thought I wouldn’t be able to do. Going through with it not only made me feel better and healthier, but it made me feel empowered in a situation where helplessness is the rule.

 

And the positive experiences I’ve had so far have empowered me, so much so that I’ve now decided to go vegan. I’ve accepted that because of the cancer and how far it’s progressed, I’m at a point where I fear food. I am literally afraid of food. Sugar, starch, processed, wheat - you name it, I fear it. I don't know which anti-cancer diet to trust, or if they're all nonsense. Nothing is certain, no one knows for sure if sugar, starch, wheat, meat or dairy is harmful, but it’s quite well known that vegetables in abundance is good for you. And I believe that the fear I feel at the possibility that the sugar or starch I eat is feeding the cancer in itself is dangerous for me. I’ve always wanted to go vegan, ever since I decided to not eat meat and fish (I was thirteen, so that makes it… 23 years ago?!) but I just never knew what I would eat instead, I imagined myself nibbling on a carrot or maybe treating myself to salad leaves.

 

I thought I loved yogurt and cheese too much to give it up. But then again, I used to think I loved snus to much to give it up, and then I quit and have never looked back. I used to think I needed my glass of wine after work, but now I put the kettle on and am just as happy. These experiences have empowered me to try new things that I believe may help me (or at least reduce the harm for me) in my effort to live as long as possible and as well as possible.


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. 


Guilt and gratitude

by Hilla Duka - View comments

Deserted beach

Lead-heavy feet carry me slowly, slowly forwards as I uncurl myself from the bed and force myself to get up. I've slept still, rigid again, and it's hard to force my body to move again. You're already up, running about, making plans and fixing things. Your body is a tool to you - you're so healthy you don't even notice it. I know because I used to be like you, but that was a long time ago now. I smile as I listen to you, you want to go there, do that. I smile, guiltily, and agree - yes, let’s. Guilty, that while you have life driving you forwards, like an unstoppable force of curious exploration, I am pushing my life, like a broken down VolksWagen, and it's all I can do to keep up with you, even though you’ve kindly slowed your steps for me.

 

I take my morning coffee black these days, it helps hide the tears. I’m grateful that it’s still warm outside, that way I can go out to the balcony and have a morning cry in solace, salty tears dripping into my morning coffee, creating ripples on the black, shiny surface. You read the papers with your coffee, shaking your head and muttering at some third world disaster. I no longer read the paper - I can’t face the deaths and the trauma on every page, images haunting me. Instead I open Facebook. The first image that greets me is a woman, I used to know her from work. She’s young and pretty and talented and smart and kind. She has her whole life ahead of her, not behind her. She’s smiling into the camera, and the early morning rays of sun create a halo around her head and I think “Ah, how lovely she is. How happy I am for her, that she’s doing well”. The next post is an update. It’s made by the daughter of the owner of the account, to let us know that her mum passed away quietly during the night. So much for reading Facebook instead of the news, I think. My feed is a mixture of babies and marriages and death. 

 

I take my coffee black these days, and I’m starting to like the salty aftertaste it’s got. And when you pop your head out to the balcony and ask if I want to go to this place that you’ve heard of, I bite my tears back and make myself smile and be grateful that those lines weren’t posted on my account, and I nod, yes, let’s go there, it sounds like fun. And I think that I can ignore the pain in my feet from walking there, the pain in my back from being there instead of lying down, just out of sheer gratefulness that it wasn’t me today, I got this day as well, and I got to spend it with loving, caring people. But the day will go on and I will forget about the mother who died in the early hours of the day. I will forget how grateful I am that it wasn't me. Physical pain isn't the same horrible fear to me as it is to others, but enough pain can blind you, make you unable to think or care or worry. 

 

And so we go to this place, guiltily I smile and nod, try to be interested, to be present. But the time we spend there is too short for you and too much for me, and when I have to beg to go home and you see my facade slipping for a second, you guiltily agree, and smile and through your teeth comes the lie I’ve come to expect, It was enough time, enough energy out of me, and you’re fine, really, you didn’t need to see those things or go any further. As you help me get into the car I see the guilt flash in your eyes, mirroring my own. For a moment it worries me. As we drive back home, tears of pain stinging my eyes and blinding me, I hear the distant sounds of an ambulance. My mantra comes unbidden, I’ve been through this so many times now that reaction is an instinct. Thank god it’s not me this time. Thankyouthankyouthankyouthankyou. I will make more of what I’ve got. I smile at you, and try to erase all traces of sadness and pain from my eyes. As you smile back I know you’ve seen the effort I made, that you try to do the same thing back, and I focus, as hard as I can, on the gratitude I feel, and not the guilt.

 

All checked up and ready to go

by Hilla Duka - View comments

pink and yellow roses

So, on Friday I went, butterflies in tummy and all, to see my oncologist and find out the result of the last scan, and was very, VERY, relieved to hear there was no sign of new growth! The metastasis in my skeleton are still there, but nothing new is growing, so now we know that the hormone treatment is actually working for sure, until it stops working (which may sound dumb, but that’s actually how it works - they give you a drug, that keeps the growth at bay, and then at some point, you become immune to the drug, and bad things start to grow… and the real kicker is you have no clue as to how long until you become immune, could be months, could be years.)

 

My liver values on the blood tests where slightly worse, but according to the oncologist that’s explained by the fact that I am, as she put it, a bit on the rounder side, and - again her words - would probably not suffer if I shed a pound or two. Hear hear, doctor. The weight gain is one of the most bothersome bits of the cancer (aside from, you know, the not quite ignorable risk of dying). Aside from looks, it means getting around is heavier, and more difficult, and being physically active is one of the most important things in fighting this horror.

 

And as I raise my glass and say a silent, thankful prayer for good results, I look back on the three months since the last good news, and then ahead to what will hopefully be great news in three months (this is how I live my life now, nice and tidy compartmentalised boxes of three months) and I’m desperately, obsessively, thinking back on the time gone, the time to come: did I use it well enough, could I have been less stressed, raised my voice less with the kids, was I really present? I guess there’s no real answer there, but I’m happy that I’m asking the questions.

 

The three months to come will start to a trip to Gotland with the whole family, and I will make a massive effort to be present, create great, loving memories for the kids and for myself. We’ve actually made some efforts with the whole redecorating / create more space project, and I can’t wait to show it (but, you know, I will - wait I mean, because I’m going to what will hopefully be sunny Gotland right now)!

sunset in the city