Showing blog posts tagged with: cancer

Q&A from GA

by Hilla Duka - View comments

purple thistle

I think it’s really fun to look at my Analytics, mostly because I like to look through the search terms people have used to find my blog. Some of them make me laugh, others leave me wondering, but of the more coherent ones, along with emails I get from people, I thought I’d do a Q&A series! If there are other things anyone wants to know, feel free to email me at hello@hilladuka.se, or comment below. I’ve divided it in to 3 parts based on what people have searched for and emailed me about: cancer, kids room / living in a small space with kids, and drawing / doodling. I’m starting off with the cancer bits so that we have more fun topics to look forward to!

 

What you need to know when you find out you have cancer

Here’s what I wish - really really really wish - someone could have told me when they told me I have cancer. This is what I would have needed to know to pull myself out of that pitch black grave I fell into as the doctor started using words like malign and spread.

 

You have cancer, and it has spread throughout your body. We have no way of curing it, but that doesn’t mean that we don’t have ways of treating you. Yes, treatment will be tough, but you will get through it. Even if right now it feels as if your life is falling apart, you will be happy again. Even though it feels like you’re already dead, you will go on living and enjoying your life. It won’t be the same as before, but it will be a good and fulfilling life. And yes, this probably means your life will be shorter than average, it probably means you won’t turn ninety, but the future is never written in stone, nothing is for certain. What matters in the end is here and now, and knowing is better than not knowing. Knowing means we can use what we’ve got.

 

 

Should I chose a wig or a scarf during chemo? How do you tie a chemo scarf?

I have no idea what feels right for anyone else, for me I wore a scarf at times and nothing at all at other times, depending on how I felt and how my scalp was. Some days the scalp is just in no shape to be exposed at all, and on those days a scarf was the best option. Even though I tried it towards the end of my chemo, a wig is just not for me. I tried tons of different ways of tying a scarf, and basically found two ways that really worked for me. Tying a scarf when you have no hair and chemo makes you really sensitive can be tricky work. This video shows the first technique I learned and stuck with most of the time. It’s really good because it requires literally no skills at all.

 

The other way that I found works for me is tying a tichel. A tichel is basically a Jewish modest hair covering. It’s different from the Muslim head coverings that I’ve seen in that it doesn’t matter if some hair shows, and it’s not there to cover your neck or any other parts, and I found the way you tie it further away from your face to be far more comfortable than other tying methods, apart from the one I linked above. There are some great tutorials on how to tie a tichel if you're interested, best way is to just search for it on YouTube!

The easiest way to tie a chemo scarf

What is it like to have breast cancer spread to the bone marrow?

Well, it sucks, for one thing. Any kind of spread means that it’s terminal. There’s no way of ever getting well, it’s just a question of how long. Of course I keep hoping for a very, very long time - long enough for someone to find a cure, but my Facebook feed is a mixture of ramblings against the racist party here in Sweden, new babies, weddings, and deaths. On an average, someone in my Facebook friend list dies about once a month. I guess that’s a big difference.

Also, having your cancer spread to your bone marrow means it affects your blood, which also means it affects how you feel. In my case I was extremely anemic, as my blood count was about half of the lowest acceptable value for healthy people. That meant I got extremely tired, dizzy, out of breath… Once you start getting blood transfusions you already feel better, and during an effective chemo, as the cancer cells die your body will start to make more blood, so you’ll not feel as weak. These days, my blood count is rather ok, and it’s not the bone marrow spread that causes me problems but the spread in the skeleton, which has weakened my back.

 

What is it like living with cancer/ terminal cancer?

I still don’t know how to actually describe it, because the whole point of being healthy and not close to death is that you’re really not supposed to understand, I think. It’s like I’m standing with one leg in the normal reality, and one leg in terminal illness. At times I think about what it will be like for my family when I’m gone, and then I'll fill myself with rebellious spirit thinking I’ll screw the cancer and live until there’s a cure.

 

I cry a lot. I have a hard time concentrating sometimes, because the thoughts in my head are so loud I can’t actually focus on what someone’s saying. I can be doing something completely mundane, or extremely important, and in my brain I get this really vivid image of how it's going to be for my kids and my family when I'm gone, and it's at once extremely real and at the same time impossible to take in, abstract and unfeasible. 

 

I’m always in some kind of pain, sometimes I’m in a lot of pain, and it’s been hard finding effective medicines against that. Now, I take 12 hour morphine two times a day, and extra morphine when needed. I also take Ibuprofen to help relieve some of the pain, get acupuncture once a week, and with my therapist I explore ways to mentally control the pain level. But here’s the thing - being in pain doesn’t mean the same thing to me as the patient as it does to those around me. I can feel like “it’s *just* pain”, it might hold me back from things I want to do, but it’s honestly not horrible. However for the people around me, seeing me in pain is horrible, it’s the worst thing they can imagine. So I try not to let it show too much.

 

What I’m trying to say is that, if you’re someone recently diagnosed with terminal cancer and you’re wondering what lies ahead, don't. Take each day as it comes, and just know that the first extreme reaction will pass. You'll not wake up and feel like someone wrenched out your heart as you remember forever. Having cancer will be a part of you, but it won't define you. There will even be moments where you'll forget that you have it. And as with everything in life, there'll be bumps in the road, highs and lows. Practice Mindfulness, and learn to be in the here and now. But then again, I think that's pretty much the answer to everything...

 

What’s it like to go through chemo? How does chemo change you?

I went through ten rounds of chemo, and had three weeks between each turn. For different cancers there are different chemo cocktails, some you have to take every day, others once a week some once every three weeks, it all depends on the type of cancer. But for me this meant two things - I was lucky enough to be able to live at home, and I would have almost two weeks of being kind of well between each turn. The first week is really shitty, and I’d feel like I literally hit rock bottom, and then I’d spend two weeks slowly climbing back up. Each round would be different, so I’d never know how I’d feel, and constantly live in fear that the next round would be impossible to cope with.

 

Another thing that I didn’t know going into chemo, was that the chemo would slow my metabolism, along with the fact that I’d be basically bedridden, and some of the meds I was taking would make me hungry like all the time. In my head I saw really skinny dying people, and I thought it was a good thing I didn’t lose any weight. Instead I put on a stone and a half, which I really didn’t need. The extra weight is close to impossible to lose as things are now, and it’s giving me poor liver values…

 

And, lastly, going through a long period of chemo gives you chemo brain. Chemo brain, this disorganised, new scatterbrain is a bit of a handful, it's strange to adjust and adapt to a new you. But that's true for life after chemo in general - nothing will ever be the same. 

sunset over a harbour in Gotland


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

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


It's half full. It's bloody well always half full, it's just hard to see sometimes.

by Hilla Duka - View comments

Jonathan splashing around in the water

As spring was approaching we were asked how and when the kids would have annual leave from school, and were informed that Jonathan would not have any kind of day care all summer(up until now the kids have always had as much day care as I would need, but apparently a ten year old is perfectly capable of taking care of himself all day long...). At first I started to freak out and wonder what I was going to do with him all summer - How in gods name was this going to work??? And when I was good and properly stressed out and literally couldn't think straight I took a step back, and surrendered. This sounds quite insane, but I've learned to do this more and more (and I get better at it the more I meditate) - I simply give up trying to make something work out the way I on some level want it to, and just surrender it. I let things fall into place, and they might not arrange themselves the way I want them to, but things generally just work out, which is more than I can say for when I try to bend the world to my will.

All three kids playing in the water

Ok, slight side track there. The point was, I surrendered the nightmare of trying to puzzle together Jonathan's ten weeks off school with my annual leave and what we as a family wanted from the summer. And as soon as I did, I realised that of course I would take the ten weeks off work, because spending the summer with my kids was more important than anything. And it would work out, somehow, because it was the right thing to do. And as it happened, it did work out (partly because it was the right thing to do, and partly because I have an amazing boss and workplace). So now I'm rocking ten weeks of summer with my kids. Absolutely amazing.

Jonathan and Jacob playing in the water

Of course it takes me a while to get into holiday mode, but a few trips to the beach later I am now practically almost not thinking about work, and I don't check my work email more than once a day. Ok, I'm still working on accomplishing holiday mode, but I'm working on it from under a tree, where I'm watching the kids splash around in the water, which is a really good place to work on stuff. Or not work on stuff I mean.

Ilir and the kids roasting marshmallows

And what do I plan to do with this obscene amount of family time? Well, thank you for asking, I intend to take my not-so-little family around Sweden. Because we haven't had a car before, the kids haven't seen much of Sweden apart from where we live, and Ilir hasn't really been anywhere, so now we're going exploring. We're spending a week in Gotland, (which is where the majority of Stockholm goes during the summer so the boys should all feel perfectly at home), and are planning some shorter trips to the Stockholm archipelago, Dalarna and hopefully a day or two in Gothenburg (although we'll probably have to go by train since I doubt the boys will last that long in the car). I'm kind of showing them all how great Sweden can be during the summer, like some sort of Swedish guide. Also, I haven't given up on the idea of getting a summer house somewhere, so that might have something to do with why I've opted for renting cottages all over Sweden this year - I'm sneakily trying to win the rest of the family over to buying a house. Then once summer is over, and we all start reminiscing, it's autumn and the prices on summer houses drops, and bam! - the whole family is on board and we're buying a 150 year old cottage. Did I plan this in way too much detail? 

Milo by the seaside

 

Well, that's how it's going to go down, just as soon as I've had my next checkup (the result comes in in nine days, not that I'm counting or nervous or anything) and the doctor tells me it's all good. "All good, no sign of growth" is what I'm trying to envision her saying. Pleasepleaseplease, let that be what she'll say.

 

The way you worry about checkups as a cancer patient is insane. You worry up until them, you worry during all the tests, and you worry in the space between the tests and your visit with your oncologist, when they'll tell you the result. And then when they say it looks good, you only stop worrying for a little while, then you start all over again. You constantly try to judge how you feel. Are you more tired than normally? Do the metastasis hurt more than other days? Does it hurt in some new place? Is that ache in your back just from sitting in a meeting or is it a different kind of ache? And then you try to not become some hypochondriac... I haven't slept naturally since I found out about the cancer over a year ago - I take a sleeping pill and knock myself out so I don't dream, but if I did - I'd be having nightmares about the checkups.

summer flowers in a field

Anyway, the jury's kind of out on this checkup, I have no clue. On the one hand, I feel ok. That's partly because I recently took some cortisone which is like speed to my body, so for the past week or so I haven't had so much pain in my joints and I don't really walk like a ninety year old lady, but the effects are wearing off and slowly the stiffness returns. Partly, I hope, it's because I'm doing my physiotherapy religiously, and am slowly getting stronger again. On the other hand, I've really been under a lot of stress work wise lately, and haven't really felt like I had a good work / family / me balance. When you don't really know what makes one person stay in remission and another relapse, you start taking anything and everything into consideration. Have I taken my vitamins? Am I in a mindful state of mind? Exercising? I can so completely understand people who start believing in weird stuff going through this. Magic stones? Oh well thank you, why not. Anything that suggests answers, because the fact is that medicine offers no answers and that sucks. 


365 days of horror

by Hilla Duka - View comments

Little flower arrangement on a table

It’s now one year since I found out I have cancer. The last few days have been filled with the roaring thunder of my mind, the echoes of storms past and storms to come. Cancer storms. Deadly, all-consuming storms that steal what I’ve worked so hard for, snatch it out of my hands.

 

These days have been filled with the memories of lying on a narrow hospital bed, knowing things were bad, but not how bad. That first surreal feeling, that I was somehow experiencing another person's life, because surely this wasn’t meant for me. Snatches of conversations, sharp as knives in my heart.

“What did you say to them?”

“I told them Hilla has cancer.”

“Oh.”

 

Other, wordless moments, eyes meeting in horror, when there are no words to be said. Hands fumbling for each other, to offer if not comfort then at least a short refuge from the loneliness.

 

Memories of how I raged at this huge, unmanned weapon, without intelligence or compassion, still I tried to reason with it. “I have children!” I argued. “Please, you cannot actually do this to me. I’ve learned my lesson, slap on the hand, I’ll be a better person, honest”. And while I’m still there in that same spot, one year later, and cancer is still without intelligence and certainly without compassion, I’ve learnt that the universe isn’t. I’ve touched a love and caring so deep and profound it has given me strength when I thought I could not go on.

 

This new feeling of being here-but-not-here. Hearing my family talk about me as I half slumber after chemo. “Can she eat? Did she vomit? She looks so weak...” Watching the people I love hurt, and knowing there’s nothing I can do to reassure them.

 

The way my heart shattered every single time I woke up, as I realised again and again that it was true, it wasn’t a bad dream, it was all true and nothing would be the same again. For weeks this went on. I’d wake up and for a second I’d not remember and then it would hit me and it was as if my heart was sucked out of my chest in that instant, and I’d weep and not stop until there were no more tears.

 

Somehow some people loved me enough to stay with me. Not just in the beginning, when all was new and shocking, but through this year and onwards.

 

I didn’t understand then what this year would bring. I would have never thought then that I would be happy again, that I would laugh and love and make plans and look forward to things again. One year has passed, and I’m still here.


 


Death and corsetes

by Hilla Duka - View comments


black and white drawing of little creature going mental at other people's stupidity

I’m meeting a woman at Olmed, an orthopaedic service company working with hospitals, to improve life for people with handicaps. I’m there for a consultation about maybe getting a corset, to help with the pain from the metastasis in the skeleton.

 

The woman I’m meeting: So you’re here to be fitted for a soft corset. It says here you’ve had breast cancer.

Me: Have. I have breast cancer.

She: Then you’ve just recently been operated?

Me: No, I’m terminal.

She: What does that mean?

Me: It means there’s no point in surgery. It means the cancer has spread, it has created metastasis, amongst other places in the skeleton, which is why I’m here to discuss if a corset could help me.

She looks at me as if I just told her I come from another planet. This goes on for quite a while longer than what’s comfortable.

She (finally): I don’t understand. Are you scheduled for surgery? It says here that you’ve had breast cancer. I don’t understand.

Me (possibly a bit more agitated than normally): HAVE. I HAVE breast cancer. I will have breast cancer for the rest of my life. Terminal means I will die from it. There’s no cure and surgery won’t help. Now do you understand?

She (quite disbelieving, challenging me): So you’re going to die? From breast cancer? And when will you be doing that? Well… It doesn’t say that here. It only says breast cancer. (looking quite annoyed at this interruption in her day). Shall we get you fitted then?

 

We don’t talk much more after that. She gets me fitted for a corset, half tosses me a brochure, as if she’s afraid to touch me, or look me in the eyes. As if she could catch it if she gets too close.

 

What I want to say, but obviously I don’t, is this: I hate you for making me spell it out. For making me say the words. I know the deal, but I try not to think about it. Until people like you force me, and then it’s there in my mind, the truth is etched in and won’t let me pretend. I hate you for being ignorant and healthy and I hate you for the fact that I am not. Learn fucking words. Understand what terminal means.

 

And the sad truth is - even nurses and doctors, people who work in healthcare, when informed I have breast cancer assume I've had surgery, assume I'll be ok. They assume that I'm not terminal. Because we have such great medicines, and mammograms and early detection and what have you, and it’s only like 2% of all breast cancer patients who are as young as me and find out so late. But I am one of those 2%. And every time you force me to spell it out it hurts, and I walk around for days with the wound opened again, the grief fresh and sharp. Wounded, exposed, fearful, sad.

 

Today it's one year since my cancer journey began.


black and white drawing of an angry bat


Wish upon a star (or a lash)

by Hilla Duka - View comments

Flower in Fjärilshuset, HagaparkenWhen I was little, I learned to wish upon an eyelash. Basically, like this - if you drop an eyelash on your cheek, you can make a wish and blow away the eyelash. If it flies away, your wish will come true. (Don't try this with mascara heavy lashes, they never fly away and you'll feel like no one wants to grant your wishes.)

 

I taught my kids the same thing, so when one of their extremely long and curvy eyelashes fall to their cheeks, I hold it out to them, and watch them close their eyes and mumble a silent wish. It used to take them forever to think of a wish, but now their mouths start moving in silent prayer as soon as they close their eyes. I've told them they can't tell what they wish for, but I can easily read their lips - "I wish mum will get well again".

 

I still wish upon my own lashes, even though it's silly and childish (I mean honestly - so am I). But I can't think of a wish so quickly. What would be the point of wishing to get well, or live for ages, if something would happen to the boys? As I found out about the cancer, I mourned that I wouldn't get to be an old lady, and ever since then, as my body deteriorates and my joints ache, as I'm going through menopause and deal with less strength and energy - as I'm basically feeling and looking like a little old lady - I've thought to myself that I should be more careful what I wish for. So these days, I close my eyes and I wish for my kids to be happy and healthy. I wish that they will know how loved they are. 

Milo is smelling the white flowers in Hagaparken