Showing blog posts tagged with: life and other questions

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


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.


 


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


Unforeseen blessings

by Hilla Duka - View comments

white flowers blooming on Pear tree

Though I had a bunch of posts planned (mostly photo bombs of lovely escapes during the long weekends lately) this day could not go unmarked. Today was the day we (as in my physiotherapist) found a way to lessen the pain.

 

As a rule, I don't want people to know how much pain I'm in, partly because I'm not good at being weak and partly because it doesn't mean the same to me as it does to others. As a result, very few people, even amongst those closest to me have seen the damage the constant pain from my metastases in the skeleton cause me, and to none but the nurses I have admitted the extent of the pain. Usually, as I'd meet a new nurse they'd ask me to estimate how much pain I'm in, from zero to ten, and I'd estimate about a seven. They'd be shocked, and tell me that wasn't ok, and I'd explain that we were trying different medications, but that we were stuck, since I don't want to take more morphine than I do, and the other things don't work. I'd resigned myself to always being in more or less pain. I'd come to accept that I was walking with halting, small steps and that my back always, always hurt.

 

Until today. Enter my lovely physiotherapist Ida, who to her credit never gave up, kept insisting that we'd find a way to deal with the pain, and today showed up with a TENS machine. TENS, which I refused point blank when giving birth, has turned out to be my lifesaver. As she put the pads on my back, I immediately felt the pain leave my body, at once I could see how this would change my life. The pain I've learned to live with was gone, and in less than an hour I could walk around more freely and with greater ease than I have in months. I'm still in shock, but so happy and grateful!

 


I measure it in milimetres, in minutes of love

by Hilla Duka - View comments

ridiculously lovely proper champagne

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

 

 

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

 

 

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

 

 

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

Champagne glass

 


happy little wonderland

by Hilla Duka - View comments

ink drawn manga cat

In my teens I opted for art school and had great big dreams of becoming an artist, perhaps illustrating stories or something. I spent three years trying to learn, and left feeling quite certain it wasn’t for me. I drew little childrens drawings, happy manga chibis cuddling, I drew little worlds where everything was lovely and happiness ruled. I still to this day remember my art teacher, this sturdy britton who took himself most seriously looking at my work and telling me “Happy people can’t make art”. I took that to heart, decided I’d rather be happy than an artist, and went on with my life.

 

Then when I had kids I started doodling for them, little animals in some ipad vector app, and then as I found out about the cancer, I started drawing again. The things I’ve always drawn; manga girls kissing, happy foxes and gnarly trees. Ink on paper, nothing more. The kids love colouring them, and sometimes they get inspired and draw themselves.

ink drawn little manga fox

Maybe my art teacher was right, maybe happy people can’t make art, surely no one would consider the things I doodle art, but as life becomes something large and threatening, a looming shapeless monster of fear resembling only your worst nightmares, it feels good to balance that out with creating peaceful happiness, girls in love and magic forests where nothing bad can ever happen.

two girls kissing drawn in ink

And unlike the eighteen year old me, I’ll not apologise for not drawing huge agonising art. That’s just not me. The drawings I make reflect something inside of me, and frankly, I think the world could do with a bit more magic and a bit less agony and pain.

 

Switching off

by Hilla Duka - View comments

golfängarna lake sundbyberg

Sometimes I have to turn it off. I take a pil and a deep breath and I all let the emotions just fall away.

 

Like when Jacob hesitantly says “They say you can die from cancer, mum?” And Jonathan - cocky, sure of himself, safe in his knowledge, answers “Not from that type of cancer, maybe from like heart cancer, mum can't die from her cancer, right mum?”

 

And it's bedtime and I really can't start to tell them horrible truths now, and how would they deal with it anyway and so I mumble some half truth, about how lucky I am to be living in a country with good medicines and how well I'm responding to treatment and how I'm not planning on leaving, and I wait until they're asleep and then I stumble out and can barely see for all the turmoil inside of me, I feel my way until I find my pills, I take a double dose because I need to feel nothing now, nothing at all. Because I feel both like a traitor and like a protector, I feel both very mortal and as if the idea of me dying is ridiculous, I feel everything and everything and I need to feel nothing.


I hate cancer. I hate it so deeply, with a vengeance for how it's hurting the people I love.

tulip closeup