Let the river in

It's been a while since I picked up my Canon. Before I got sick I spent a fair amount of time working on my photography. I loved to create dreamy photographs with interesting themes. Topics that inspired me and got me out of my comfort zone. It was such a huge part of my life. So when I got sick.. and I mean really really sick - when going through chemo it helped me so much. It was my lifeguard. My outlet. My canvas. Those photos are still very personal and intimate to me. You can view the series here: Chemo Chronicles.

During recovery I reached a point where I couldn't watch myself in any photographs, creative or snapshot. It was just all way too confronting. All I could see was the pain. The destruction.



Recovery is a process. Not a day goes by I'm not working hard on healing my body, mind and soul. And that's a tough thing to do. It's exhausting. I get angry at times, I feel lonely sometimes. But I keep climbing that mountain because I want to reach the top and enjoy the view.

So even though I already felt exhausted.. today I picked up my camera and went on a photowalk. I forgot what that was like... nature, me, muddy shoes, putting your tripod in dog shit, things like that. Deep fresh breathe of air. The birds. The sun light. The silence. Although I'm not completely comfortable in my body right now (I've gained some weight because of the Tamoxifen AND the anti-depressants) I took these photos like I used to. And I think they mean a lot.

They stand for healing. Acceptance. Let that river in. Go with the flow.  

Because there is still good stuff

July. Wow. What has happened to the concept of time? Crazy.

So I talked to my psych again today. It was a good one. I think. She complimented me on the small steps I have been taking over the last couple of weeks. Which felt really good. I really need inspiring, encouraging people in my life right now. I know I have to find back my confidence, and I have to do it myself. But sometimes these little things can set your mood. They can change your day and turn it into a better one.

So I told her I finally understand that I am depressed. I also told her I want to talk to the psychologist after his vacation about medication. I haven't said yes to the meds yet, but a conversation wouldn't hurt anyone.

So I still have my bad days and I feel lots of sadness inside of me. But here's a list of my little projects that might not mean much to you but for me are big steps into the right direction:

-I bought a ladder book case for my house. I have collected so much stuff and now I finally have a place to display everything! Although I still live with my parents it feels good knowing one day I'll be back on my own. When I'm ready.

-I bought an Ikea Moppe cabinet and turned it into a 'Pimp Moppe' project. I decorated the drawers with cute flower paper.

-I bough this simple pin board and turned it into a card holder/memory board. It looks so pretty and nice and I'm in love with it.

-I did start my 'One Line A Day' journal on the first of July. A few lines before I go to sleep. Empty the head.

-I have been working really hard on my Etsy store and I was able to sent off packages to England, Germany, France and The Netherlands. So proud of this!

-I love working on my Wreck This Journal, it so much fun and a great distraction! 

-I finally made an appointment at the dentist! I have been putting it off for so long.

-I love drawing and painting in my art journal.  Okay I think I basically like all kinds of craft. Could that be possible?

-Snuggling with the baby bunnies! 

-Postcrossing, snailmail, penpals... a filled mailbox makes me happy as well!

-I love nature, taking a walk... I love the green, summer, the pond with duckies. 

-I was so against it, but now I really love my Kobo e-reader. It is such a nifty little 'book'.

-Thrifting! I love finding treasures! Whether it's vinyl or a cute porcelain little bunny.

-Instagram addict. 'Nuff said.

Love yourself first

I seriously have way too high expectations. Life, people... blah. Words do hurt. The absence of words do too.

All I wanted was a bit of happiness, a bit of sunshine. So far it has been raining and not exactly a good month. But May isn't over yet. Perhaps it's not too late.

I am so tired of feeling all these feelings. I'm scared and lost. Lonely and angry. Sad and nervous. I know I try too hard sometimes. But I just wish a day would go by without me thinking about the c-word. Because I am sick and tired of it. Everything. People have no clue about the ripple effect.

Next week I have to talk to the insurance doctor at the UVW about my sick leave. Not exactly something I'm looking forward to. But hey it's the c-word... and that is how it is.

I hate how much I doubt myself. I can't stand how emotional I am. I stress about everything. I can not even begin to explain it. You might think I'm crazy. But trust me the effects of the c-word are HUGE. I know I'm better off accepting it. But that is very hard. Because the c-word took away so much from me. I know if I get through this it will make me a stronger person. With a different view at life. But I'm not there yet.  

Okay at least let me try to end this with some positive news. Six of my photos will be available in the Cardcetera webshop as a postcard series! I am so proud of this! You can read an introduction here. I really should listen to my own advice I just realized. These postcards are pretty clever ;)

Hair

I had a tough week. I realized I really am my own worst enemy. I am being so hard on myself. I need to let go of a lot of things. But I'm having a hard accepting my current life. Which is crazy. But let's talk about that another time.

Because I finished my chemo in April 2013 and started to document my hair growth on a monthly basis. So 12 months have passed... and I'm not really all that happy with the way my hair looks right now (it's the out of bed look, but worse... like an explosion). At the same time I treasure every hair on my head and I'm so happy to see that it looks like my natural curly/wavy is coming back. I just WISH it would grow faster. I think I'll be more happy with it in a few months.

I got rid of the hats somewhere between month 4 and 5. Picture 5 also shows the first time I dyed it again. Grey hairs gone. 

So here you have it 12 months of hair growth.

The last 2 KM

So after my adventure with the Fluvoxamine anti-depressants and talking to my psychiatrist I (we) decided to try something else. Something just for my anxiety called Pipamperon. Now you have to know I love watching The Walking Dead but actually turning into a zombie now that's a complete different story. It did exactly the opposite as the Fluvoxamine did. I do have to admit it helped with my anxiety but other than that it was horrible. I felt no joy any more. I couldn't even have a normal conversation with my parents! They said I had no facial expression. I couldn't sleep, constant head aches and I was trembling on the inside but looked numb on the outside. So freaky weird.

So for now... no more drugs.

I seriously was about to quit the last two Herceptin, that's how bad I felt. A dead battery; no energy left. But now that I quit those damn pills, okay I'm still nervous as hell... but I do feel better. I feel like myself again. I started painting in my art journal and I enjoy taking walks. Although I don't feel festive and I will be so happy when the Holidays are over... I think I need to finish this treatment even if it's a struggle.

I talked to my psychologist today. She said, "You're not going to quit 2 KM before the finish line right?"

So tomorrow is my birthday, I am turning 32. I am trying not to think about this year too much. I read somewhere, "Don't look back because you're not going into that direction", and it seems very fitting.

I think I will start my New Year in February instead of January. It will be something different for a change.

Happy Holidays to my dear readers! 

Some days there won't be a song in your heart...  SING ANYWAY!

Dementor's kiss

You can exist without your soul, you know, as long as your brain and heart are still working. But you'll have no sense of self anymore, no memory, no... anything. You'll just -- exist. As an empty shell. And your soul is gone... lost.

Autumn blanket

I was doing okay for a while. But then it comes back like a blanket. Now I just want to hide underneath there. Makes me wonder if I really am depressed.

I try. I try so hard. But every morning is a struggle. Getting up is the hardest part of the day. Taking it day by day. Step by step. I've never felt so tired before. Physical and emotional. Trying to keep it all together. Like I said I want to hide underneath my blanket and have somebody wake me up when it's February. No more Herceptin.

I seek distraction. I go grocery shopping. I take walks. I snuggle with my bunnies. I sometimes take photos. I focus on my art. I visit work. The last time I was there it didn't go so well though. There were only a few people I do not really care for. At some point I was talking in the hallway to 5 or 6 people and then this one girl showed up that, well let's just say is not a fave colleague of mine. If we used to run in each other during our break we never even said 'hello'. But now... she stood there next to me listening and asking questions. And I was thinking to myself, 'what the fuck are you doing here?!' I just felt like her interest in me wasn't sincere. I was just a story to her. An interesting break from her work or something like that.

It really is hard to get excited or to look forward to something. My art journal has become important to me. I usually draw/paint something after I talk to my psych as well. It has become an important way for me to express myself. I like talking to my psych even though it's very emotional and hard. When I come home I'm usually not a 'happy' person. It's confronting, it goes deep. But I guess it's all part of the recovery process.

I'm kinda sick and tired of October Awareness month as well. It's too confronting right now. I can't take it. I try to close my eyes for everything out there but it almost seems impossible. It's pink in your face. There's a part of me that wants to read everything and I feel that I have to know everything about my disease. But then again, a big part of me wants to block it. Because it's too painful.

There was one thing that really spoke out to me though. The Dutch website for young women with breast cancer asked people younger than 35 to write a one time blog about what it is like to be diagnosed at such young age. So I wrote my story down in 800 words and it was published on their website this week. Writing my story down in my mother tongue was very confronting for me. The story and how it all pretty much began, kept going through my head for a couple of days. But I'm proud of it anyway. I got some really great responses and people could identify to it.

Because my bunnies are one of the few things that still make me smile here are some cute fluffy pictures I took for World Animal day.

Not a pink ribbon

Sweet-jesus-on-a-cracker tomorrow will be October. Last year I wrote a long Breast Cancer Awareness month plea. I’m going to do it again this year. Last year I was the newbie on the block, this year is different… Because I can officially say: been there, done that.

The reason I’m writing this piece is because it’s something I feel very strong about and I want other people to become more aware of what is really going on.

So what is wrong with the pink ribbon? It has become a marketing tool. We are supposed to feel good about buying pink stuff with pink ribbons on it. But in other words these products mean major profits and advertising for a corporation or organization. The sad part is that sometimes not even one dollar/euro or even a penny will go to breast cancer research. So when you’ll see that pink scarf designed by a famous star, or lip gloss, bracelets and pink shoes you normally would not buy; PLEASE READ THE LABEL. Rethink pink. I’m telling you right now you don’t even have to race for the cure. Just simply write your favourite charity a check. It’s that easy.

I’ve always felt ashamed of the fact this lasts an entire month. Because there are so many other diseases that do not even ‘get a day’. Why do we need an entire month of awareness? To listen to all the courageous stories? Cancer doesn’t care if you’re courageous. The pink ribbons and balloons do not speak of those with metastatic breast cancer. Because this would not be good for the fundraising campaigns.

That pretty little ribbon. Oh such a pretty feminine colour. Well let me tell you it has nothing, absolutely NOTHING to do with breast cancer. Because cancer will haunt you for the rest of your life. It will change your future. Cancer blows up in your face. It punches you in the stomach with fear and panic. Cancer takes your hair, eyebrows and eyelashes. It takes and takes… and then some more. Cancer makes you feel empty, like you’re stuck in a black hole. It isolates you from the rest of the world. You will get test after test, you will be shoved into crazy loud machines and waiting for results seems to take forever. You will be poked at with needles, IV’s with hardcore cocktails, and the side effects are always horrible. Cancer takes away your confidence, and eventually your positivity. BUT NEVER YOUR HOPE.

It’s time to get the knots out of the ribbon.

Up

I talked to my psych again. She wanted me to tell about the person I was before I got cancer. Which was hard. Because it reminded me of my old life. Little old me. The curly care free silly dreamer that turned into a neurotic sad little bird.

I told her I believe I'm not depressed, during our previous appointments, that I am just sad and anxious. But today she sort of made me think maybe I am. When I came home it was quite a shock to me. I hate labels. But I suppose it doesn't really matter whatever the fuck I'm calling it. It is what it is. I feel what I feel. I already came a long way accepting my feelings and I firmly believe positivity will not save you. I hate to break it to you but in my opinion it's true. You have to accept your negative feelings, make room for them and listen to them. Give them a voice as well so they don't become a silent panic within you.

I started an art journal which feels really good. It's mixed media, so I draw, paint, scrap book etc. etc. It feels good to have another outlet next to photography and writing. I also became a member of postcrossing. Which is a postcard exchange project that invites everyone to send and receive postcards from random places in the world. So I'm really trying to seek distraction. 

 

So accept all of your feelings but also make sure there's a spark. Things that will make you happy. I know 'happy' is a word that some days do not apply. But try. Really try to find things close to you. Think of picking up a new hobby, or blow life into an old project. Because you need that strength, that energy, to keep going and going. We can't quit. We can't give up now. Up we go. 

P.s. My hair diary is updated.  

Here comes crazy

Exactly one year ago I had my surgery, a lumpectomy. I try not to think about it too much. What's the point?!

I'm here now.

A long road it was and still is. I think that is the hardest part. The part that other people will never understand. That cancer is always on my mind these days. Finding distraction is so hard. After a year of treatment I feel like I have barely any strength/energy left. I still have to do six months of Herceptin. And it's Her-crap-tin.

There's so many small things, it's too much. Little things. A normal person wouldn't even bother to give it even one thought. But after a year on this crazy roller coaster I can cry over almost anything now. The Tamoxifen I haven't started and I'm so scared about the side effects. All the Herceptin I still have to do. Telling my story. Answering questions. It's hard to say it out loud, "I'm not doing so good right now." The side effects from chemo and radiation therapy. Confrontations. My hair which of course isn't growing as fast as I want to. Losing a nail. You name it. I cry about it.  



So I have some news, I'm finally going to see a psych! I will have my first appointment on Monday. Really nervous. But then again, if you can name one thing I'm not nervous about these days I'll applaud you.

Also wanted to thank those that found my blog and emailed me. I'm sorry I haven't taken the time to respond personally but it's just so hard. Sometimes I just don't know what to say... but do know I appreciate every single email. 

Being brave

I talked to my onc last Thursday. Made a list with things I wanted to talk about before I went. I spent like 45 minutes in his office. He is wonderful for taking the time like that. How important is it to have a good relationship with your doctor. Seriously. I trust this man. I sit there sobbing in his office but he's still able to make me laugh.

So we talked a lot. About everything. He convinced me I'm completely normal. He also complimented me on coming to him asking for help. So he's going to search for a psychologist for me... According to him there needs to be a certain chemistry between a patient and a pshych so he's going to try and find me a good match.

Tamoxifen also came up. But since I'm not feeling so great right now... and Tamoxifen has like a billion side effects and depression is one of them. My onc decided he wants me to see a psych first and feel better. Which is quite a relieve actually. I have enough on my plate for now. The results from the blood test showed that I haven't hit menopause yet... but it's coming close.

In the meantime I'm working very hard on the being the in now and not thinking about my next Herceptin treatment. One word: DISTRACTION. I sand and paint old furniture, I draw, make cards, send out packages, take photos, I take walks, hug the bunnies, I bought a record player... that sort of things.

Today I had my first walk outside without my hat. My hair is still really short but it's too hot for a hat right now. I think it'll look better in one or two months. Maybe I can even dye it by then and get rid off the grey hairs.

I also donated 50 of my photos for Ann Marie's Bravery Bags. She's making bags filled with goodies to lift spirits of those fighting the C - battle as well. My photos feature strong and inspiring words with sweet and pretty backgrounds. So happy to be part of this project! 

Broken wings need time to heal

Just another Monday. Two months post chemo.

I'm obsessed with hair. Or lack of it. I don't understand why some women have full heads of hair after 3/4 months post chemo and others (I'm talking about myself here) get the old bald man look with no hair on top. Okay so it's growing back, but it's scarce. This is just extremely frustrating. It makes me sad and angry and basically I hate everybody with pretty long curly hair right now. Sorry it's nothing personal.

I don't expect miracles. I just want that sexy pixie haircut and I promise I'll shut up. So hair... please grow grow grow!

Patience is just not my thing right now.

The next two weeks are going to be tough for me. Wednesday I have another echo coming up and if everything is okay I will have Herceptin 6/17 Friday. Not really looking forward to it, because last time I had quite a few side effects. Really have to keep my fingers crossed this time will be better.

Then Monday it's coming. My first mammogram after being diagnosed. Of course my breast knows this and I have been feeling all sorts of weird stuff lately. I am really nervous and oh so scared. So scared. Lots of scenarios went through my head. The bad ones. Then on top of everything I will also get a Dexa scan and a blood test. I will get the results the next day. I am thankful for getting these tests and my aches and pains will be taken seriously because I once had cancer. But oh boy I just know these things will never get easy. Always in the back of your mind... there's that little voice.

So I still cry my eyes out from time to time. I actually had some bad news about my job shoved into my face as well. As if dealing with breast cancer isn't enough. But there is nothing I can do about it right now. So I have decided not to worry about it.

So obviously there are ways to stir your soul. They don't always work, but sometimes they do. So I try. I keep trying. Sometimes this results in creative projects like keeping a little notebook with positive quotes. A colleague visiting with his son. Sending packages and being in contact with my breast friends. Unexpected gifts from sweet people. Or a bike ride all by myself for the first time after chemo. Maybe just feeling some sun beams on my pale teary-eyed face. You keep trying, if not today then tomorrow.



Most of you know that I took photos during chemotherapy. And it was one of the few things that kept me going. It resulted in something I now call the Chemo Chronicles. You can view the entire series on my portfolio website here. Or click the link in the menu on the right.

Skeleton leaves

New colours

Oh these long haired hippie bunnies of mine are very high maintenance. But I love them. It's kind of sweet and funny taking care of their fur while I have no hair at all myself.

Now I'm exhausted. But I wanted to come here and write because after all, tomorrow is my last chemo. I still can't believe it actually. Number 8, finally.

November 9th 2012 I started with the AC treatment 4x every three weeks. February 1st 2013 I started my first Taxol/Herceptin, 4x every three weeks and I was suppose to finish on April 5th 2013.

As you could read in my previous posts, unfortunately after three treatments my ejection fraction dropped down to 53%. I did a MUGA scan last Tuesday and will have the results back next week.



So I will be finishing chemo, Taxol... but no Herceptin for me until... well until I talk to my oncologist next week.

So this is not exactly the way I was expecting to finish chemo. April 5th is a date that has been in my head since November. It's hard when things don't go as planned. I'm having a hard time letting go. I don't know what I'll do if they tell me I can't do the Herceptin at all. I really hope we're going to give it a try and that they keep monitoring me closely.

But for now let's focus on finishing that chemo chapter. It's scary. I know the story will continue. But I also hope there will be some light at the end of this chemo drug hole tunnel. It's very emotional. Because I've been through so much. Now comes the time I'm probably going to realize it.

May number 8, the last one, be gentle with me.

Being a wild bird

So looking back at my previous post it would be fair to say I had a few things on my mind that were bothering me.

So yesterday when I got out of bed I figured hey this is my life we're talking about. My heart. Let's take back control. And it felt really really good.

I decided to email my oncologist instead of waiting for him to call. That same afternoon he replied. Basically he told me he wants do a MUGA scan and until the results come back no Herceptin for me.

A MUGA scan creates video images of the ventricles (lower chambers of the heart that hold blood) to check whether they are pumping blood properly. It shows any abnormalities in the size of the ventricles and in the movement of the blood through the heart. Today the hospital called me and we scheduled the scan for next week Tuesday.

So there you have it. I feel a little more at ease and also very determined on finishing these Herceptin treatments. Which is kinda crazy of course... Because at first I was so not looking forward to them. But now I realize this treatment was prescribed for a reason and that is why it is so god damn important I finish every single one of them.

Of course if the results from the MUGA scan are seriously fucked up and the risk is too high... well then it becomes a different story. You see I don't want to die of a heart attack. That would be a bit ironic.

Lucid dreams

Here comes nervous Nellie

It's chemo week again. Friday I have number 7 in front of me. Which means: distraction! I have been working on creative projects, updated my photography website and took lots of photos. I went shopping today. None of my jeans fit me any more because of the weight loss.

I also sort of wrote a BC guide. You can find it on the menu on the right or just click here. No medical advice, because every case is different. I see it more like a guide with products and other helpful tips that helped me through surgery and treatment. I hope it will be helpful for those just stepping into this crazy roller coaster.  

Distraction, I actually overdid it a bit I think. The thing is, I am still wondering when I'm going to break down. When am I going to lose control?! What a mindfuck!

I worry about so many things it's crazy. A peek inside my head? What are my neighbours going to say when they see me. When do my colleagues expect me back at work. Will everybody assume I'm okay once I have hair again. How do I maintain a healthy lifestyle without obsessing over it. How will I get back into shape. Will I ever get through a day without thinking about cancer. What's going to happen with all the scans and mammograms I still have to do. Will I ever be truly happy and carefree again. That worst-case-scenario, what if. Will I ever be able to talk about fertility and the invisible scars. (...)

Well you get the point.

I do realize these thoughts are actually pretty normal, going through something like this. But it's hard to keep things under control. That is why my friend Ashley and I set two goals for this week. I decided to take pictures to help me practise them.

1. Being in the now: most of us are actually elsewhere, rather than in the here and now. We can't control the future. We can't change the past. Being present is almost like meditation. There’s a concept called Flow. Basically it's about losing yourself in whatever you’re doing — reaching that magical zone where you forget about the outside world and are completely doing what you’re doing, whether that’s writing, drawing, yoga, running, taking pictures or whatever. It’s a wonderfully productive zone to be in, and a state that also makes you happier. Productive and happier at the same time. Hard to beat that.

2. Let go: worry is a mindset, a habit. Energy flows where you focus your attention. Understand that we can choose to focus on positive rather than negative thoughts. The best way find relief from constant worrying is to learn to let go. Worrying does not bring you any closer to solving problems. In fact, it only makes it more difficult to find clarity in your head.

Get your hat leave your worries

Another ER visit

My last post was published at 7:28 p.m. (Central European Time) and one hour later I found myself once again in the ER.

Seriously. After my appointment with my oncologist I had enough excitement for a day... but no I spent 4 entire hours at the ER before being dismissed.

I had noticed this burning feeling while peeing the last couple of days but didn't give it much thought. Even my oncologist mentioned it that morning, it's just one of the many side effects of chemo. Completely normal!

Then when I took a shower early in the evening I all of a sudden felt the need to urinate even right after I emptied my bladder (no not in the shower). The pressure and cramping became worse and worse so I called the Oncology department and they told me to come right away and bring a pyjama just in case I had to stay.

Then the torture started. I am absolutely not afraid of needles but I really felt like a pin cushion this time. The first blood tests were incorrect so they needed more blood. My veins didn't agree and well I'm poked all over. They even tried my finger and it took forever to fill a tube.

Then I had to pee in a pot. Three times! Three freakin' times! But I delivered!

Finally after all the test results came back and it was determined I had a bladder infection I got antibiotics in my IV. When the doctor told me I could go home I did a little happy dance and a big cheer. Still have to take crap tasting antibiotics for 7 days though. Ugh.

Breathing Flowers