Showing blog posts tagged with: waiting for news

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. 


Chemo verdict

by Hilla Duka - View comments

Dsc00261

Today came the verdict - six months of chemo, my whole life altered at the very core, and the score? It seems it could be 0 - 0. It could be that I have scored a bit better than the cancer, but after half a year of focusing on the goal and mentally picturing becoming the miracle patient, basically I find out that we don’t even have the instruments to tell if I ever get there.

 

The blood count has continued to go up - which is a good thing and should be seen as proof the cancer cells in the bone marrow are receding. At least that could be the reason, and since no one knows anything, that’s what they tell me to believe. The jury’s out when it comes to the metastases in the skeleton. Apparently, the only way to know if I’m in remission is to see when new cancer cells start growing there. If that doesn’t happen for a few years, then I was in remission for those years. So, no news, really.

 

The only good news is the fact that I have no new metastases. Which I really shouldn’t have since I’m on chemo, but still something to be grateful for when there isn’t much else.

 

I think a lot about my grandmother these days. She was 88 when she was diagnosed with cancer, and assured everyone she was quite done with life, and didn’t mind going. I wonder if in reality she felt inside as I do. I think that she must have had moments when the sadness took over, and she broke down in tears at the thought of leaving her children, her home, her body. How can you ever truly be done with life?

tel aviv by night

I have so many things I still want to do! I don’t because my bleak future restrains me, and I don’t want to leave Ilir with too much of my mess. Most of all, of course, I want to be there with him to watch my boys grow up, to help them and support them as they carve out their place in this world. But other, smaller things too. Like owning a dog again, getting a cottage in the countryside and go there on weekends, going to Israel and go for a late night swim in Tel Aviv. Getting strong again and take great long walks in the forrest.

 

But the cancer doesn’t care about what I want. It didn’t care whether or not my grandmother was ready. It rages through my body just as I rage against it. At the moment we're at a stand still. So cheers, here’s to No Progress. It’s not the miracle I had hoped for, but at least I’m still not dying right now either.

 

Booked!

by Hilla Duka - View comments

Holiday

This past week has been so rough, physically and mentally. Physically mainly because of the different tests I’ve had to undergo for my halftime evaluation, and in part because I chose to participate in life. I went to vote, and I deliberately wanted to do it on the election day (even though it meant standing in line for ages). I don’t know how many more times I’ll get to go and vote, so I wanted to do it properly. I went bowling with the kids, and after much persuasion I actually did some bowling myself (the last time was in my teens, I ended up dropping the ball and someone was hit in the head...) My fingers and my hands hurt for the rest of the day and then some, but it was worth it to do something fun with the kids (they all love bowling).

 

Mentally, because I’ve been waiting for my half term results. I got them today, and I’ve been a nervous wreck waiting for them. Imagine if you got the result of all of your university exams in one day, and then multiply it by some factor - it’s not just a university exam at stake here, but my whole life, my whole future.

 

My head was in complete and utter turmoil, but it turned out to be good news. The ultrasound didn’t produce much - as the tumour is lobular it’s spread in a very spidery way, making it very hard to tell if it’s shrinking or not. The mammography results weren’t back yet, but my doctor was more than pleased when she examined the breast - much smaller, almost as small as the healthy one!

 

My blood tests showed that I was producing blood by myself, at least some of what I need, which is a good sign that the metastases in the bone marrow are receding, even if my blood values where lower now and I’ll probably need a blood transfusion on Friday when I have my next round of chemo. And my lymph nodes were almost normal in size! So, all in all, really good news. The best bit was that there was no new metastases, and the fluid in my right lung that had been there before had gone away.


To celebrate, I’ve booked tickets for the holiday that Heidi and all the lovely people who contributed enabled me to go on through the fundraising campaign! A week of sun, bathing, drinks and ice cream with all my boys - the kids are going to love it! And I will too. And it’s just two weeks away! It’s been hard settling on a date - basically I’m in no condition to do anything for the first week after treatment, and then comes four days when I’m extremely sensitive to infection - not a good time to be on a plane. And after that I have about ten good days, before it’s time for another round, so it had to be on October first. Thankfully, I found a great trip on
Fritidsresor. I’ll be home a day before the 6th treatment, and we leave just as soon as I stop being so sensitive to infection after my next round - perfect! It will be just perfect.

 

 

The picture is borrowed from Fritidsresor, of the hotel we'll be staying at


The art of living

by Hilla Duka - View comments

2014-07-26_06.31.25

In June 2014, my life changed forever. I finally got to see a doctor who took all my strange symptoms seriously, examined my breast and my swollen lymph nodes, and who answered me gently, but made it clear that cancer was a real risk. The next day, after I had left some blood samples, a doctor called me and ordered me to go to the emergency to get a blood transfusion. As my doctor’s office and the emergency didn’t have the same data system, my doctor’s office had faxed my papers, and as I signed in to the emergency room, I was given those papers, to give to the doctor I would see. Naturally I checked them, and from the statement and values it was clear to me that I had cancer. The next day, I was told that it had spread to my lymph nodes, and a week later that it was also found in my skeleton and bone marrow, meaning that it was stage four cancer, with no way of ever being cured from it.

 

Since then, so much of what it is that I’m coming to terms with, is a question of learning how to live with death as a part of life. This is not something we’re forced to do in this day and age, and learning how to is alien and stressing and strange. My reality is that the best I can hope for is that my body can manage all ten chemos now, and that the cancer cells can't, and then… Well, yes, then it’s the question of what then. Basically, after that, it’s living with death around the corner. Even if (or when) I manage to get through all ten treatments, and they give me the amazing news that they can find No Evidence of Disease (NED), the rest of my life will be spent worrying about some lump I’m feeling or a pain in the side or whatnot. I’ll go on checkups, and when I get all clear and they tell me they can’t find anything, I’ll celebrate. And then the next day I’ll start worrying about the next checkup, the next lump, until one day they tell me they can find new spreadings. Coming to terms with this kind of future is taxing and difficult and horrific, and is not something I would wish upon anyone.

 

I’ve done my fair share of trying to negotiate with this unarmed weapon pointing at me, hell - I’ve probably done most peoples share of that. I will willingly, gladly, accept this future as long as there is a future and it’s long, but simply accepting it isn’t the same as understanding what it will mean. It’s a bit like when parents tell someone who doesn’t have kids that they’re tired, and that person goes ‘Yeah, I totally understand’. They don’t, because you can’t unless you’ve been there. It’s not that they don’t want to understand, it’s just that unless you’ve stood there with the baby that just won't stop screaming unless you carry it and rock it at exactly the right pace, while you’re legs are aching and you’re ready to fall asleep standing up, indeed walking around, for the fifth night in a row, you really can’t get it. I think it’s the same now. It’s like I’m standing on one side looking into this thing that will hopefully be my future, and trying hard to accept it and understand what it will be like, only I can’t really understand it yet, because I’m not living through it yet. Almost, but not really yet. One leg is there, and the other is still standing in chemo-reality.

 

But as they say, hope is the last thing that leaves you, and as humans we must have something, that is just maybe out of reach but not entirely, to hope for. And as I’m not religious I can’t really hope for salvation or heaven, and I’m not really interested in eternal peace anyway. The only thing I can hope for is more time, more future. So it stands to reason that a lot of the machinations of my brain will therefore investigate what kind of future I can hope for, if all goes well. It turns out, even in the best outcome of this I have to accept death, as part of my new life.

 

Ironically, I’m actually way better at living since I found out I’m dying. I mean, not right now, and in some sense we’re all dying, but you get the idea. I’m so much better at life, when life also involves death. I’m better at embracing my feelings, I’m better at being grateful, I’m more conscious of the sort of thoughts I allow into my head, and whether they’re worthy thoughts or not. I’m better at enjoying the here-and-now moments, and I’m so much more grateful. Before, I had a good job, decent money and great friends and family, and while I did appreciate every bit of it, I think in some ways I felt entitled to it. It was due to me, as a result of who I was, of what I did.

 

Now, as I’ve struggled to understand how wholly unfair life actually is and that there really isn’t anything you can do about it, whether or not I deserve something is completely unimportant, because you don’t actually get the things you deserve. In comes the gratitude. Yes, I may have cancer and it will change everything about my day to day life and my future, and my death, and it’s not fair in any way, but it’s just part of the portion I’ve been served. I’ve also been given incredible kids, a wonderful husband, loving family and friends, great opportunities to do amazing things… The list goes on and on.


I’ve had to give up basically everything that I was, everything that I thought defined me, but in return I’ve gotten something back. It may not be a fair bargain, but I’m so not left empty-handed in this. If the price I’m paying for living is a life with death as a participant, I’m ok with that.


Not football

by Hilla Duka - View comments

Photo

I had this post planned out in my head. It was about football. Basically, some specific and in my opinion helpful tips that would in general improve the game. It was a cheery and trying-to-be-funny post. That's not what I'm writing today. Today, it'll just be a sad and depressing rant / up-to-date since I don't feel witty or funny or anything positive right now. The tests came back, and the cancer has spread to the bone marrow and to the skeleton. I was so busy staying positive, that wasn't even an option I had considered, and it's just left me devastated, in complete and utter shock. 

 

I wake up in the morning, and the tumors in my neck hurt (a lot) and the metastases in my skeleton, mainly in my lower back, hurt (a lot). As I wake up, there is no longer that brief moment of pause when I still think everything is normal, and then it hits me that this is now my life. I wake up now, and I know it's bad. It still kicks me in the groin, but it's not the completely unexpected kick it was at first. I can't even get a massage, because apparently, everything that's good for me is also good for the cancer. I'm wondering if smoking or getting stoned (which by all accounts should count as bad for me), might kick the cancer a bit? I'd be willing to chip in, you know, for the general good and all. As it is, I can do a bit of yoga, and Ilir is making me smoothies with icky stuff like wheat grass, spirulina and such in them. 

 

My blood values went up after I had my blood transfusion, from 70 to 95, and then a few days later all the way to 99 (in spite of my body's brilliant idea that the day after the blood transfusion was the best day to have my period), so hopefully I wont need another blood transfusion before I start chemo. (Normal people have an HB of between 130-175, so all of this still counts as severely anemic.) 

 

The plan now is to start chemo next week, then do a series of hopefully ten treatments, and - fingers crossed! - watch all the tumors in my body shrink down or disappear, and then keep me on anti hormonal treatment and keep our fingers crossed that the cancer cells don't decide to start growing again. Which they will at one point, but my plan is also to stay extremely positive that some kind of wonder cure that can kill skeletal metastases will develop, if I can just keep it together that long. The thing is, no matter how much I try to focus on this positive image, my mind keeps returning to the much less happy scenario of well... I'm sure you get the picture. 

 

It hurts so bad that my kids will have to watch me be ill, that they need to watch me be weak and worry about me. So far, I've told them I'm sick and that the illness is called cancer. I've told them that I'm not working right now, and that I'll never be completely well again. I so, so, so much don't want to have to tell them any more than that. We know that the cancer is hormone receptive, which is at least one good thing in the midst of a million bad ones, as it gives a better chance of the chemo working. Still, the fact that it's in my bone marrow and in my skeleton means what it means. 

 

I hate that I have to wait for treatment. I hate that first I had to wait one week for a conference, which turned out to be just a meeting, since they don't see any point in surgery, and now I have to wait another week and a half, during which the cancer is spreading and wreaking havoc in my body. I know that I'll be unwell when the treatment starts, but I'd rather have that than this wait. I need to fight, and right now I'm just holding my breath. 

 

I haven't had the energy to reply to all of the wonderfully kind comments, texts, messages that you've all sent me, but I really, really appreciate them. Thank you all of my sweet colleagues and friends and family members from far away who've taken the time to write! I miss normality, I miss work, I miss my life. It's so hard to comprehend, that a few weeks ago I was a bit concerned about a weirdness in my breast, and annoyed as hell that I was so out of shape and often got sick. It's just a few weeks ago, but it's another life, and I miss it badly.

 

Now, my best positive thought is starting chemo and then being able to see how the larger tumors are shrinking. 

 

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