Showing blog posts tagged with: pill popping

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.


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

 


Dark and delicious

by Hilla Duka - View comments

Coffe

As I'm no longer doing chemo the doctors have put me on a whole new set of drugs, all of which have some funny side effects. An implant I get once every three months puts me in menopause (something all my guy friends cringe at when I talk about - I never realised menopause was such a taboo!) which means night sweats and mood swings that would put any teenager to shame.


Another drug, one that's meant to help strengthen my bones, I have to take in the morning on an empty stomach. Not a big problem - except that means no coffee when I wake up. Thirty excruciating minutes of waiting until I can finally have my morning fix. And I can honestly say that no drink has ever tasted better than the cup of dark, delicious instant I make the minute the timer rings and then gulf down in about three seconds. So delicious...


Good days and bad

by Hilla Duka - View comments

2014-11-22_21.27.23

How can you stay so positive? It’s not just once I’ve had that question, and I hope, if my dreams of becoming a miracle patient go pear shaped, that my kids will remember me as someone who was happy. Because I am. I am and I’m not, you know? It’s a landscape of extremes. I am so incredibly happy for what I have, more so than ever before. It’s in some ways as if the cancer diagnosis put new glasses on my nose, and I can see everything so much clearer, feel so much stronger. I love my life, and the people in it with a new sort of ferocity. I never knew how much I would be willing to sacrifice, just to stay around with them a bit longer. As parents, we often say how we would give an arm and a leg for our kids, now I get to see how true that is.

Milo and Jonathan

And at the same time, trust me, I’m not so bloody happy all the time. I cry, so unbelievably much, it’s insane I haven’t dried up yet. It’s inconceivable to me that I will die, long before my time, and not see my kids grow up, not be there for them. And when the realisation hits me that this is a likely scenario, it smites me down every time, and there I am, floored, crying my eyes out and making sounds that don’t belong in a human mouth. I can live with my present, I can live with looking odd and being in pain, but I can’t live with the idea that I will leave my loved ones. So when that idea takes a grip on me and holds me in it’s claws, I’m not so positive anymore.

 

I’ve lost quite a lot of functionality in my right hand. Chemotherapy induced neuropathy, it’s called, and apparently it’s here to stay - at least for as long as I am. I am, of course, right handed. I can more or less type on a computer, though not write by hand. I can’t draw much, or crochet, and I really shouldn’t hold a cup with that hand. It hurts, or rather aches, quite a lot of the time, and it’s very swollen. Still, I don’t care. Take it - take my arm! I want to shout at the cancer, or the chemo - it’s very hard at this point to know who or what I hate. Take it all, if you will just leave me with some life left in me.

Ilir and Milo
These are the thoughts that go through my head, especially as I recuperate after another round of chemo. When my days are filled with vomit tasting and aches and pains and loneliness and mind tricks. And then I pick myself up, after these long days are over and I finally have some energy again, and I go out and have a coffee with you, and you ask me how I can stay so positive. This is how. There are good days and bad, even if I don’t show them all.


Colouring outside the lines

by Hilla Duka - View comments

Scarf

As I put on makeup this morning, I realised that I no longer have enough eyebrows to make out where they begin. So I started drawing about where I thought there ought to be eyebrows, only to realise that I looked like an idiot… It took a few tries before I thought I got it about right, and then a few checks with old photos to make sure it looked somewhat the same. I wonder if I will get better at making up eyebrows as I go along, or if this is where all that time I’m saving on my hair is going to go…

 

I hate the fact that I don’t have my eyelashes and eyebrows as I used to, as they were such a big part of how I looked, in my own eyes. I spend time each day putting on makeup, not to try to be pretty, but to try to still be me. If I’m not wearing any makeup, to me I look like just another cancer patient. But when I go about my usual routine, I look like myself, only with cancer. And if I look like just another cancer patient, then maybe I am just another cancer patient, and my odds of surviving are just the same as anyone else’s - but if I look like me, then I remember who I am, and I know that I can move mountains. I’ve done the impossible before - and I can do it again, if I just remember who I am.

 

Today I went to give my blood sample, hoping against hope (as always) that my blood count will have gone up, but not really expecting it. If it’s too low, I’ll get a blood transfusion as well as chemo tomorrow, if it’s ok (that is basically anywhere above a hundred), it’ll just be the chemo. Of course I would prefer only getting the chemo, but I’m very happy that I can get blood when I need it, it makes a huge difference, but as we’re constantly low on supplies of blood here, I feel guilty when I have to get some, thinking it’s two bags less for someone who’s having surgery or are otherwise in dire need of it…

 

It’s been harder this time round than the last, no point beating around the bush. Instead of almost two weeks of feeling well, I’ve had two weeks with various aches and pains. My back hurts every day when I wake up, the skin on the back of my hand hurts to touch, and despite my efforts not to, I still worry about the checkup in two weeks time and what it will show…. And after the awful Day Three the last time, I’m quite concerned how Monday’s going to turn out.

 

This staying at home business is also hard to get my head around. On Monday, I did nothing but stay in bed all day, then spent all evening berating myself for not having done anything with all that time. Then yesterday, I shocked myself by cleaning the house, doing some washing and actually making cup cakes for when the kids came home from school. I was so stunned I had to sit down and have a glass of wine to recover! I know those of you who know me won’t believe it, so I’m adding some picture proof here. Three different kinds of cupcakes they were - raspberry, blueberry and chocolate. I know - clearly the age of miracles has not passed, and a good thing it is for me too!

There you go - picture proof of my super productive day!