Showing blog posts tagged with: for the love of friends

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


Married

by Hilla Duka - View comments

Wedded

Yesterday, on a high overlooking the entire city, I married my best friend, the steadfast rock who's always been there for me, the love of my life, and the father of my children. In a simple ceremony marked only by love and respect, with family and beloved, supportive friends around us, we became husband and wife, and I know that this we will remain for all of my days. 

I'm so grateful to everyone who took time to come and celebrate with us, making it exactly as special and still relaxed as I had hoped. It was an amazing day. And to my friend Cattis, without whom all of these ideas about getting married would still just remain ideas. When I found out about the cancer, Ilir asked me to marry him. When we started planning, all we could really come up with was that we would like a small ceremony, in a very relaxed way, having some champagne with our loved ones. Since I can't plan far in advance as I have no way of knowing how I will feel in six or so months, we knew that it would have to be short notice. This meant we couldn't simply book the next available time at the registry office, and as I am a non believing Jew and Ilir is a non believing Muslim, finding someone prepared to marry us seemed more than difficult. Until Cattis came in, found a lovely minister who didn't have a problem marrying such a religiously strange couple as us, and also promised to work around Jonathan's very harsh opinions on mentions of God or Jesus. (I think I've mentioned that before? While I'm somewhat of a religious carnivore - devouring all but believing in nothing, Jonathan has very strong opinions about especially Jesus. I think it stems from going with school to church before Christmas, where the priest told the story of Jesus as if it was fact, and Jonathan stood up, pointing fingers at the priest and calling: You can't know that's what happened, it was over two thousand years ago, YOU weren't there!) Thankfully, this very open minded minister didn't have a problem working around all of this, and Jonathan, whilst initially sceptic, soon warmed to him and played and laughed with him after the ceremony. 

My lovely friends from work read this poem, which brought tears to my eyes and joy to my heart (chemo brain is making me mushy and sentimental and emotional...):

När jag står på bergets topp

När jag går i den djupaste dal

Finns det inget på denna jord

Som jag inte kan klara av 

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt 

När dom vänder mig ryggen

När människor blir små

När vägen är mörk

Ska jag fortsätta gå

För med dig är jag modig

Jag är den jag vill va'

Och hur det än blir nu

Är allt som det ska

Om du finns hos mig

Om du tror på oss

Ge mig din hand

Med dig vid min sida

Klarar jag allt

Klarar jag allt

And then we were done, and after some champagne we went down to find some grass and some shade and had a picnic. It was exactly the sort of simple, relaxed day I had hoped for, and though I was sad that some of my friends and loved ones couldn't make it, we toasted to absent friends, we laughed, and it was a wonderful day. I hope it will be a day the kids will always remember. I know I will. 

 

And today is my birthday, I'm turning 35. A few years ago I invented IHAD (International Hilla Appreciation Day), so my birthday is usually a day of drop-by visitors having some bubbles and toasting me and telling me how wonderful I am, rather than the cake, gifts and off-key happy birthday songs you'd normally have. Celebrations are so important. At every chance, every birthday, happy turn, achievement, at every piece of good news, we could all do with a bit more celebrating. God knows we grieve enough. 


Bucket lists and expectations

by Hilla Duka - View comments

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Once, the idea of getting old scared me. Then I reconciled myself with it - thinking it happens to everyone. Getting old is something we've come to expect, we think of living until we're ninety, or at the very least eighty, as a right, as default. The thing is, it's not. Getting old means having hit the jackpot. It's my ultimate hope and goal that I get to grow old, with my loved ones around me. Soon I'm turning 35, and truth be told, I can't know for sure or even expect to turn 40. If I do, I will most likely be the happiest, least neurotic forty year old ever! For now, I'll be happy and grateful for turning 35. For this day, and for, hopefully, tomorrow. 

 

When I turned 25 I was at such peace with my age. I was exactly where I wanted to be, everything on my bucket list neatly checked. When I was about to turn 30, I started thinking about what was on my bucket list at that point, what I wanted to have done and experienced by the time I actually turned 30. It wasn't very much or very thrilling, I wanted a change of career, to drive a forklift truck, a trip to the sun with the kids, to visit my grandmother with all three kids... Might not sound like much, but they were on my bucket list. I did some, but not all, and went quite happily into my thirties. Now I'm about to turn 35, and I don't have a bucket list anymore. I don't wish for money, a better career (I love the one I have, and hope to be able to return to it soon!), I don't need a big house or to travel to remote parts of the world. What I really wish for, is time. Time, and everyday life. Small things like making the kids breakfast, seeing them experience new things, learning, having fun... Saying good night and knowing I'll see them in the morning. Those are the things I wish for most of all, and yet they are the things that we all take for granted. The best bits of everyday life turn into little gems of memories, like beads on a strand, and I gingerly collect them; greedily asking for more.

 

My sweet friends Cattis and Cissi from work, and Cissi's husband Hasse, gave us one of those precious experiences when they offered to take all of us out on their boat. The kids were absolutely thrilled with the idea of going on a boat, visiting a small uninhabited island, roasting marshmallows and going off exploring. It was just magical and beautiful, and seing the kids so happy and excited did wonders for me. More treasured beads for me to collect - the look on my sons faces when they were allowed to try to steer the boat, jumping into the cool water, or simply sitting at the front of the boat as it cut through the water. We climbed into bed way later than their normal bed time, exhausted and sleepy and utterly content.  I'm so, so grateful!

 


So much love...

by Hilla Duka - View comments

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Since I found out about the breast cancer, and how it spread through my body, I'm astounded at the amount of love, thoughtfulness and caring that has come my way. It's not even been two months since I received the shocking news, but I can honestly say I don't think I've ever felt so... cared about, I guess the best word is. So much of it is coming from my friends at work, which I think is truly amazing. Most people have colleagues, and a few of them they like well enough to form friendships with. I think this is especially true for Sweden, where friendships are formed in school or at least when you're young and single. At (almost) 35, and through other past events, I've lost most of, if not all, my friends from school, and the friends I made when younger I have mostly lost touch with. I don't mind, as it's part of life - you go through stuff, some people are there for you, others will back away. That's how you learn who truly matters to you. Enough to say that my "colleagues" from work are not mere co-workers, they're friends, true friends, who worry, send positive thoughts, encouraging gifts or lovely thoughtful cards that make me laugh and give me a moments respite from this new reality. 

 

In a support group for breast cancer patients (yes, I am refusing to use the word "victims" - I will not be a victim) I was shocked to read a thread on how to deal with losing your family and friends in this battle. One woman describing how her children refused contact with her anymore, and others reporting similar situations, friends who no longer get in touch, don't want to meet up, the feeling of loneliness added to the battle against the cancer. How fortunate I am in the midst of all this not to have to go through that! It's true, old friends who I thought might reach out have not, but they are not anyone I'm close to, and I don't miss them for it. It's true, my entire family on my mothers side have remained silent, but on the other hand other family members have come forward to offer sympathy, sending positive thoughts my way. Most of all, my family and friends have been there for me. My lovely friends from work who will come over with puppies for me to cuddle with, or a bottle of wine to share on my balcony when I'm too weak to go out, even starting a fundraising campaign to send me and the kids on a dream holiday and give us all a break from this tormenting reality we're now living with. The father of my children, who upon hearing the devastating news asked me to marry him. My amazing brother, who dropped everything to be there for me, to support me and help me so that I would not have to go through this without him. Who when I had to shave my head, shaved his own in support. My parents, who've not seen or spoken to each other in twelve years, burying the hatchet and making peace so that they can both be here for me and the kids. In these regards, I'm so very fortunate, and thankful for it. 

 

Today is day four after the second chemo, day three - five are I think the worse, and I do feel quite weak and tired, but am not in pain really. This time it's easier for me to accept that these days are not good days, because I know that they will pass and I will have more energy soon. The first treatment, I was reluctant to admit how weak I was, thinking it would not go over so quickly and that I had to fight more to stay strong and energetic. I see a breast cancer therapist, who helps me understand the mental aspects of receiving news like these, and how I can deal with them not to let them overtake my entire life but still find joy and happiness, and not be irreverent of life by thinking harmful thoughts or let the thoughts of death and dying consume me completely. This helps a lot. I can wake up in the morning, and be grateful for this day, even if it is one of those days when I can't do much or don't feel too well. I know that there will be laughter and cuddles and happiness even in this day, and I can be thankful for it. I still wonder "Why me???", but I also know the answer - life is a game of roulette. It could be me, it could be anyone. 

 

One question I get quite frequently, is how could it have gone so far before I found out? I'll try to answer that one as best I can. The type of breast cancer I have is called lobular breast cancer, and is the hardest to detect. Rather than growing as a lump on one side of the breast, It grows directly under the nipple, and not as a clear, hard lump, but as a softer, more weirdly shaped jellyfish of sorts. It wasn't until it reached a size of about 5 cm (though measuring it is tricky since it's not round), that I could tell there was a real difference in size compared to the other one. Even then, as I googled and tried to make sense of it, it seemed most information discarded the idea that it would be cancerous. And it took me some time to accept that it might be, and get help. I think I was in denial for about a month. I knew something was wrong, as I was so short of breath, tired, bones aching, but as I went for checkups and doctors appointments, they would claim one thing after another, asthma, some sort of viral pneumonia, or just prescribe coughing medicines. Had they taken a proper blood test, as indeed the last doctor did, they would have found the cancer. For about four months I went to different doctors, going through this routine, but in all honesty, if they would have found it four months earlier, it would probably still have been stage four. My doctor believes I've had it for one to three years, without knowing, and given the fact that I have no record of early breast cancer in my family, I had no reason to check it earlier. Also, lobular breast cancer symptoms are not covered in the self check info you find online or at the doctor's office. This is why I think of it as roulette - it's just a series of unfortunate circumstances that's lead to this...

 

I also got some questions as to what a port-a-cath looks like, so here's a quite unflattering picture of me showing my port-a-cath. The round thing is where they insert the needle, and the small tube is what transports the drugs into my blood stream. Genius!

Another question I get a lot, is why I'm being so open about this. I think for most people who know me well, it's obvious. I am very open as a person. I also don't believe it's my fault that this has happened to me, so I don't feel weighed down by guilt. And if there's a small chance that reading my ramblings would help someone else who goes through something similar, that would also make it worth it. And, lastly, it might make a difference for my kids to read one day, when they're older. So there you go. 


At Sofia's house

by Hilla Duka - View comments

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This time, when I headed down to London, I stayed at my friend Fia's place. I hate staying at hotels (at least when I'm working) and spening time with a friend is not something I'm spoiled with, so this was such a win for me. Fia and I know each other from work and became friends (this is so rare for me, I find it so difficult to make friends, especially in Sweden) and she's one of those people that you spend time with, and then come away feeling happy, energised and more appreciative of life. 

Also, this time instead of having a really mad schedule with tons of meetings, I had three really important meetings, that also turned out to be really good ones. Even though the crazy schedule was necessary last time, I was quite happy this time to be able to focus on quality rather than quantity. Also, getting a chance to hang out with a friend, go shopping and spend long lazy nights sipping wine made this a really good trip! :)