Showing blog posts tagged with: chemo and other treatments

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. 


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.


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


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


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


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!