Showing blog posts tagged with: cancer

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

 


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


What it's really like to be terminally ill

by Hilla Duka - View comments

cuddle time with Milo

A while ago I my sweet cousin, also living with advanced cancer, posted a link to a story about what it’s like to be chronically ill. As she’s someone I really admire, and it’s a subject that touches us both, I read the story, and much agreed with the author's points. Only after a few days, I realised I was still thinking about it, adding amendments and removing some bits in my head. So here’s my revised version of what it’s like to be terminally ill instead.

 

You always feel like a burden. Well, technically your illness is the burden, but after a point it becomes very hard to differentiate between yourself and your illness. Obviously I don’t believe that I am the cancer, but having cancer becomes a part of who I am. The cancer is a sorrow unto all our lives, and I’m the one who has it.

Also, practically, I’m always more or less of a burden to others. When my bones ache and I see the pain in the eyes of my loved ones, reflected, magnified. I want to tell them it’s not so bad, it’s just physical, but in this, it’s as if we don’t share a common language, they don’t understand, our experiences have made us unable to understand each other. I find that there are lots of things like that, that I cannot explain.

The feeling of being injected with Natriumchlorid was one of the earliest. I found that I hated the experience, and tried to explain: “It’s like a horrible smell under my skin, but it’s a smell I can taste.” That didn’t do much in terms of understanding each other.

 

You are literally living other people's worst nightmare. Even most other cancer patients worst nightmare. Healthy people spend quite a lot of time and effort trying to be admired - whether it's for their looks, clothes, home, carrier or love life, the goal is to be successful. That option is beyond not available to you when you're terminally ill.

 

You have a whole set of dreads and horrors completely real to you that you can’t talk to anyone but your therapist about. As my father asked me if he could take my oldest son to Israel, I inadvertently blurted out “Can you not wait with that until I’m gone?” That did not go down well, I’ll tell you. People know what’s to come, but we can’t really talk about it.

 

Most of the time, you’re in pain, and you know it’s just going to get worse. And a part of you is forever checking, measuring, to try to judge how much you can take, how long you will be able to go on.

 

When you feel neglected, your first thought is: “It’s as if I’m already dead”. Yeah. That one’s hard. And unless you watch your thoughts constantly, it’s really easy to feel neglected.

 

You can't ever really be honest with people. "What are you thinking about?" is a question that shouldn't really be answered when the answer is likely to be "Oh, I'm just trying to imagine what my funeral is going to be like". Its a bit of a conversation killer... Or, being terminally ill means having the most rigid self control ever, to not think about those things.

 

There is no escape. At one point a friend of mine blurted out “I can’t do this cancer thing 24/7!” and while I really do get that - there are no options for me. I have to live with the cancer thing 24/7. And while healthy people can have great hopes and dreams for the future, the only thing you hope for when you’re terminally ill is a cure. A cure to be developed before you die. All the other dreams, you’ve already had to say goodbye to. So when people talk about how they plan to buy a house, in my mind I’m thinking about the house dream I had to let go of. 

 

But here’s the thing. Being terminally ill makes you strong. I thought I was strong before this, and that was nothing - nothing - compared to this. And it makes you good at being weak. It makes you a better person, and it makes you great at living in the here and now. And while I appreciate all those perks, all I really want is a chance to watch my kids grow up. You can have the new house, or the great car. You go on the trip to the Maldives, dive with dolphins or get the great book contract. I won’t mind, honestly, if I can just please, please, get to see my kids grow up. There is no joy, no wonderful moment, no second of any day that isn't tainted by the horrible, all-engulfing sadness of leaving my family.


Being odd

by Hilla Duka - View comments

Jacob up close

By chance I happened to be at school today as one of my kids had a complete breakdown. As I soothed him, held him in my arms and helped him take deep breaths, the story unfold. Two other kids had made a drawing, of me. An exaggeratedly ugly drawing, showing me fat, with one eyelid hanging and no hair on my head. They were showing it to my son, saying how it was me and how strange I looked, and my son completely broke down.

 

My heart broke for him. Kids can be so mean, so thoughtless. How much more does he have to go through, this little man of mine, who’s already been through more than a child should have to deal with, when we already know that rougher times are ahead? Does he really have to deal with this as well?

 

I’m quite used to being the odd one out, but I’ve been spoiled in the sense that I’m not used to this affecting the kids. It’s a horrifying experience.

 

Fears and consequences

by Hilla Duka - View comments

Flowers in the hospital

The past week I’ve spent in the hospital, in the oncology part that I fear the most. Why was I there? Because I let fear take over my decisionmaking.

 

A week ago I finally gave up trying to pretend I only had acid reflux and headed to the emergency room, with what turned out to be an inflamed esophagus. A week I was there, hoping that maybe tomorrow I’ll get to go home, maybe tomorrow I could drink something, be in less pain. It was a week of no eating or drinking, anything. Of pain, fever, inflammation and infection, of longing and missing and hoping.

lovely flowers from my coworkers!

It turns out I’m allergic to one of my daily medicines, one I opted for taking as a pill every day rather than have to go in once every three weeks to get as a shot. Because I didn’t want anything that reminded me of doing chemo. My fear of chemo put me in the one place I fear the most, the oncology section.

 

Apart from how I hate being ill and stuck in a hospital (I actually went into a nervous fit when the nurse I spoke to on the phone said I would have to be committed!) it's been interesting and horrible to see how my absence has affected the kids. I saw them several times, and was even home for an afternoon, and it was subtle but a definite difference in how the kids behaved, the family feeling not really at a high. 

 

I missed the sensation of water flowing down my throat. I missed eating. I missed being home with my kids, and I missed taking pictures...At night I dreamt about snapping amazing photos, marvelling at the quality of my own pictures, at the sheer luck of being in the right place at the right time. Only to wake up and realise I never took those photos, that I was stuck in a boring and uninspiring room, staring at my own feet and a gray wall. It was a horrible week, one I hope I never have to live through again.


I hope that I will remember not to let fear rule my decisionmaking in the future, and I hope I can remember a bit of how grateful I feel right now, to be home with my kids, to be able to drink some water, eat on my own again. Truly, I'm so thankful to be home, and on the mend again!

Our cat Aidan about to leap


Phantoms

by Hilla Duka - View comments

white berries on a winter branch

If you get diagnosed with breast cancer, most likely at first your life will fall apart. It’s the nightmare news that no one wants, and all of a sudden you’re living your own and everyone elses worst nightmare. On top of that, you get scheduled for surgery, and one of your breasts will be removed. Except, if you’re a stage four, there is no removal, no radiation. I understand going through surgery must be very hard, and then you might want to have a reconstruction, and a whole new mess unfolds. But when you’re a stage four, the tumour in your breast is not the problem - at least in the doctors eyes. It’s the spread that is.

 

So you’re stuck with the breast that’s trying to kill you, not really knowing how to feel about this body part. Even within the hospital environment, breastcancer equals a removed breast, so you constantly have to point out to doctors, nurses et al, that you haven’t had surgery, that you’re terminal. Or chronic, as I prefer to think about it. And every time you have to say those words, because someone didn’t read your file properly, it chips away a little at your soul. Your cheeriness sort of slides off a bit, something raw and wounded becomes uncovered.

 

I still have my breast, though for the longest time I didn’t know how to feel about it. Inside of it was a tumour, one that had spread and was trying to kill me. This part of my body - one that had nursed my children, that I had highlighted in deep v-necks and push-up bras - was still there, only it was doing a very good job of getting rid of me. I wanted it gone, I wanted it removed, but was stuck with it. Today, the tumour is gone, but the effects of the cancer will never leave me.

 

And in some ways, still having my breast intact has made me feel as if I’m not really a breast cancer patient. I still have my breast, I’m not to go to any mammograms. On the outside, I could have any cancer.

 

I don’t think of the breast as being there. In my mind, it’s gone. If the tumour is gone then the breast is gone. Only it’s still there. Kind of the same as my right arm, that has been rendered useless by lymphedema, after so many rounds of chemo. It’s in many ways as if the arm is gone - I have to learn to write with my left hand, can’t carry anything with it, the list can go on and on. Only it’s still attached to my body, painful, covered by a compression glove and sleeve, making me look a bit like Darth Vader, and much improving my Cyborg transformation. My arm and my breast are still there, but it’s as if they’re gone. It’s like a phantom breast and a phantom arm, to go with my phantom fears.

wheel tracks in the snow