Home

I am now officially 33 years old and Christmas went by pretty quickly. I was actually able to enjoy myself. Well I did the best I could. Being with my family was good. Opening presents and stuffing ourselves with good food. Watching Home Alone (1 and 2). Snuggling with the bunnies. It was good. Better than last year and WAY better than two years ago.

But.

Right now I feel terribly sad. I think I am done with 2014. When I look back I think of all the projects and hobbies I picked up to help me through the day. Whether it was Wreck This Journal, photography, blogging, writing letters, Postcrossing, Swap-Bot, Etsy, art journals, flower pressing... or a helluvalot DIY projects.

But it's not enough any more.

I want my life back. I am so sick and tired of feeling miserable. I want to feel alive and part of this world. I want to be independent again. I need to be where I belong. Oh dearie, I miss my home.

So where are we on the apartment cleaning? Not quite ready yet, but it's slowly coming along. 

I was hoping I would feel better by now. Be more steady. Less mood swings. More happy days. But what if I'm waiting until I'm ready... and perhaps no one is ever ready to do anything. What if there's no such thing as ready. We only have now.

Of course I have to stay patient and trust my journey. But what if all it takes, is one big step? I know I have my safety net, it's always there but it still is god damn scary. So 2015 I challenge you to be better! I don't know exactly when... but I am coming home.

Remember December

December is a tough month for me. But I think it is for many people. Because it's not only a month of celebrations (Christmas and my birthday) but also one where we get a bit melancholic and look back on the miles we walked. It's getting dark earlier, we light our Christmas tree and we think of the people that are no longer with us. While magazines and TV show us how Christmas should be celebrated with lots of glitter and happiness... I truly believe many people feel sad and lonely during December.

The road to recovery is long, bumpy and very dark at times. Recovering from cancer treatment isn't just about the outside — it's also about healing your soul. Sometimes we forget where we came from, the things we had to face and the battles we fought so hard for. Sometimes we need to be reminded that we are not where we want to be, but neither are we where we used to be.

So for 2015 I made a memory jar. I am going to collect happy moments, accomplishments, milestones, silly fun times, daily blessings and surprises and I will put them in this jar and read them all on December 31st 2015. I will get to relive these special moments and be proud of the steps I took

I hope I can inspire you to do the same thing and enjoy the little things in life... for one day we'll look back and realize they were the big ones.

I met with my new oncologist the 1st of December and everything was fine. I have to say, I miss the conversations I had with my old onc.. it was way more personal. But this new onc was nice, friendly and seemed to know what he was talking about. I was able to ask him all of my questions which I always write down. If all goes well, I will see him again in December 2015! So that's good. Less trips to the hospital. Another mammogram is scheduled June 2015.

I also met with my psychiatrist again. We're still experimenting with my anti-depressants. I am now on 45 mg. Fingers crossed I am going to feel better because I don't want to try another pill with possible new side effects. I know I need to give it some time and like I said, December is a tough month.

So no more hospital visits this month. I am going to try to focus on all the family stuff. Enjoy spending time together. Being able to buy them presents. This is my first Christmas without treatment. My birthday is coming up, turning 33. I'm going to try to enjoy these small moments... even though it's hard and I have dark memories in the back of my mind.

But next year will be lighter and brighter!

Heavy emotional baggage

While the rest of the world seems busy with their ice buckets I have been struggling on the treadmill and lifting weights. Heavy.

So this whole physiotherapy training thing isn't really going well. Physically, I can handle it. But I absolutely hate the place, how it makes me feel being there. The confrontation. The commitment freaks me out. So mentally... I'm not doing too good. I cry before I have to go there, and I cry when I come home. I don't expect people to understand this, but I can't help myself, it's how I feel. I try to tell myself this is going to help me recover. I try to look at it in a positive way. But I'm not feeling it.

So last time I was there the question we all have been waiting for popped up. One of the women asked me why I was there. We were waiting for the rest to show up... so I told her I had breast cancer and was treated for a year and half. She was in shock and well never would have guessed I was 30+. It was very emotional, telling my story to a stranger.

Then the physiotherapist AGAIN told me it would probably be better if I came twice a week. This time I felt like he was really pushing me. So I felt like crying right away. But of course I didn't in a room filled with sweaty, heavily breathing old people. But I can't go there twice a week, I can barely handle once a week!

Then one of this old blokes, he tried to grab my attention before but I ignored it, asked me what was wrong with me as well. Well I felt really uncomfortable this time and told him I was sick for a year and a half and that I was trying to get back in shape. He wanted to know more but I told him I'd rather not talk about it. Which felt good. So yay me!

I talked about it with my parents... and next week I will have another physiotherapist so I will give it another go. But if this thing is making me upset and unhappy it's not going to work I suppose and I might quit. I have to admit I got upset about this as well (OMG I get upset over ANYTHING, get it now?!) and it makes me feel like a loser. Like I can't handle it. Like I'm not doing the right thing... Afraid people are going to say but you do want to recover right?! But maybe this is just not the way for me. We all have to follow our own path I suppose. We'll see. I'm just happy I can talk to my parents about these things and they really understand and help me so much.

Perhaps it also has something to do with what my colleague's husband told me. He went through ten years of cancer treatment himself and he told me to kick my butt and get back to work. I was flabbergasted. His words really hurt me. Obviously he was speaking from his own experience... and has no clue about my story or the person that I am. His story made me sad but once again this proves you can not compare cancer to cancer. Or people with people. Fucker. He even told me I was spoiled for still living with my parents. I mean hello... don't you think I'd rather be living at home with my sweet bunnies all by myself if I could?! Argh.

Talked to my psych about some of the positive things (yes yes). I visited work, I had colleagues coming over with their dog. Or their 2 year old boy. I have been busy with my Etsy shop. A Vespa ride with dad to a farm. Lots of outgoing and incoming snailmail. I met with my pregnant friend and her 3 year old daughter. Even though some of these things are very hard for me... I also sincerely enjoy it and it feels good to be able to connect with people again. Because I feel so god damn lonely sometimes.

The only thing that bothered me about the psych is that I told her about my new blog and that I wanted a place to blog about happy things. She said why couldn't you do that on this blog? Because, she said, I should not forget it's all the same, it's all me. WTF?! You think I'll forget that?! I know cancer will always be a part of my life... and I'm not ignoring that. I just want this blog to be informative for people who are going through the same thing and not having to deal with a post about pimping an Ikea cabinet. There.

Something nice to finish. I have been looking for new glasses. Which is a big deal! A new look! I found lovely brown specs... but they have to come all the way from Denmark so I'll have to wait a few weeks probably. 

Sporty spice

Yes I had a couple of days that were pretty okay. I think my psych now realizes she inspires me more when she encourages me and gives me confidence. So even though our conversations emotionally drain me, I would like to think they will help me in the future.

I actually think that people around me started to notice I might be doing a little bit better. Maybe I am scared to admit it, because another bad day is peeking around the corner. But that's because my depression is still overshadowing everything. My psych says, even that person, the one I feel is lost... is still in there. Deep down. You don't lose your core. Everything I do, or feel, my entire being... has been taken over by depression.

At first I didn't believe that because I am having good days as well! But you can be depressed and have a good day! Such an eye opener for me!  You can wake up extremely sad and emotional and go to bed that same day feeling pretty okay. These mood swings are just another sign of depression. I never knew, I never realized this. I think accepting this, and embracing it, letting it be... is the first step in healing.

Now that we're talking about taking steps. I went to this physiotherapist that specialises in people being sick and wanting to get back in shape. I have to admit our first conversation wasn't a great one. His phone kept ringing... and hello I am sitting here telling you a fucking painful story! But I decided I came this far, I bought a new comfy sporty outfit, so let's do this. Still I have to admit I wasn't looking forward to our first appointment. Which was today.  

So I always hated all of these fitness machines. That is why I always loved dance, yoga & running. But now I can officially say I walked on a treadmill. I did some exercises on a huge ball. Which was awkward. I also spent some time on the... cycle hometrainer thingie. There were so many old people, but I didn't really care about that. My physiotherapist was more in his element in this room than he was during our conversation. So that was okay I guess.

But it feels like such a big commitment. I want to feel better. I want to feel less tired. I want my head to have some peace. This whole thing is such big deal to me and it's very upsetting. Because I am 32 and I have to train with all these golden oldies. Because of all the crazy treatment and medication that fucked up my body and mind. But this is new to me. I am not good at that right now, dealing with a new environment, new people, commitment. All I can hope for is that it will make me feel better at some point. That it will give me some confidence! Perhaps that I find some joy or satisfaction?

Here comes the story of the hurricane

Everyone has a story to be told. Sometimes struggle is part of that story.

How do you feel about your home? Is it your home sweet home? Did you decorate it, picked out the furniture and the colours? Do you have lots of happy memories that make you smile. Do you picture yourself growing old in that little corner in the world that is yours. Because after all, there is no place like home?

Now picture a hurricane totally destroying that same house. Everything you built is gone, destroyed. Not just the outside but on the inside as well. Every little detail that once made you feel safe... is now gone.

That is cancer.

Exactly two years ago I was diagnosed with breast cancer and it was a big fucking hurricane. So no this is not a cancerversary because I hate that word. Treatment might be over, but I'm still stuck in the middle of this crazy dystopian story. Trying to pick up and dust off, some of the pieces. A hurricane leaves quite the mess. That place, that used to be so solid, is now trembling. It is still burning. No longer do I recognize it. So lost and confused, where to begin?

Recovering from cancer treatment isn't just about the outside — it's also about healing your soul. It is an emotional struggle. I read last year's post and realized I have come a long way. I am not where I want to be... but I will one day. Progress is progress, no matter how small. I think I finally feel/understand that now.

For a year and a half my life was all about getting through treatment. These days I embrace my good days, and as for the bad days I try to let them be. They say grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.

Seriously?!

Today was my appointment with the insurance doctor at the UVW. The Dutch safety net for people who are sick for longer than two years. I was nervous but prepared. Or so I thought.

I was meeting with this doctor under the assumption we would talk for an hour. He shook my hand and then said, "So you had a tumor and are depressed now?"

Wow. I mean wow. REALLY?! That's how you start a conversation?

So I answered that my story was a bit longer than that and so was my treatment plan. So we discussed that for a bit, I went through the numbers... radiation therapy, chemo and herceptin.

Then he wanted to know why I wasn't working. I know he was doing his job, but seriously just a tiny bit of empathy would have helped and made me feel better. I gave him the papers of my oncologist and pharmacist because I came prepared. He made a stupid comment about the font size of the paper work the company doctor sent.

Then we talked about my emotional state of mind and he asked me why I wasn't seeing a therapist more often. Fucking rude dude!

If you think that's all... no he wasn't finished. After 15 minutes (!!!) he asked if I wanted to add anything to our conversation or felt something was left out. I was flabbergasted this was it. So I told him that I didn't feel our conversation did justice to the pain I am feeling and the horrible thing I went through at age 30. You know what he said? "It could have been worse, you should be happy to be alive."

So yes I left there very upset. Yes that's an understatement. I called my boss afterwards and I'm thankful for her support. I know whatever happens I still have a job. I also have a good feeling about our company doctor and his judgement.

At first I was really upset and sad... but now when I think about it I get so angry as well. Treating me like that after everything I have been through. You do not have the right to speak to me like that! Motherfucker. It's not like I broke my leg or something like that. I didn't go on a cruise asshole! I had cancer and my soul and body feel torn apart.

Next week I have to go back for another meeting with an employment specialist. I am seriously hoping for someone a bit more qualified. Or better yet, a bit more human.

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 ;)

Oh spring I miss you

"It always seems impossible until its done." - Nelson Mandela

True. True. I still can not believe it, but I'm done with Herceptin. Her-crap-tin. Done. Goodbye! 

So you would expect me to feel happy and relieved and part of me is. I think. But I'm mostly confused. Not sure what to do now. So this is what they call... life after cancer. 

I need time to heal and I need to give myself this. I owe that to myself. I also need to accept this, which is a tough thing. A year and half I have been riding this medical roller coaster and now I'm getting off. Life just doesn't go on. Or maybe it does... but it's far from anything you're familiar with.  

I am still sad and I still have so much to process. A lot of people don't seem to understand this. It is so hard for me to talk about everything that happened. I still cry a lot (which according to my mother is a good thing).

So I was doing groceries with my mother when we ran into a guy she knew. We talked a bit and I told him I was done with Herceptin and blah blah and while I tell him I notice how sad I get. Then we run into my neighbours... again I have to tell my story. They even asked me if the Herceptin worked? I know I should not get angry for people asking stupid questions because two years ago I did know nothing about cancer and treatment either. But you can't be patient all the time. It does make me angry. Egh and I hate all these questions. To top it all, the lady behind the counter said, "Oh you're hair is growing but I really liked the short hair!" Permission to punch? 

So then I come home I am so sad and all these words and conversations go through my head over and over again. Everything is so overwhelming and I know it's part of what I have to go through to deal with everything. But you're just so damn sick and tired of everything after a year and a half. 

I want sunshine. Little beams of happiness. 

Hair diary update!

But first comes number 17

I am so glad the Holidays and all that festive crap is over. I was so not in the mood. Basically I went to bed at 10.30 p.m. on New year's eve and slept through everything. I was perfectly fine with that.

So now it is a brand new year and I have 1 more Herceptin to go. One. Only weeks ago I thought I would never make it. But really, it's happening. I am doing it!

The thing is, with the Herceptin being gone... I am not done. It's the chapter Herceptin that is closed, finished. I have noticed this is hard to understand for people but I can not simply pick up the pieces and move on.

There is so much 'stuff', unfinished business, left in my head. I am scared. Because for over a year I had my life planned out. I knew I would get sick every three weeks. Everything evolved around cancer. Now I start with a new chapter, a blank page, and it scares me so damn much. I don't even know where to begin.

Thank god for psychologists and people like that. Because they actually have 'ideas' about this issue. Phew.

I am still such an emotional person. Getting up in the morning is the HARDEST part. I feel so sad and lost usually. But sometimes I have better days where I go out and do things, even if it is just groceries, take walks or visit work... I do all of these things. Little steps.

It is so hard for me to answer people's questions though. Not only because I get so emotional and always start crying. But because it is so obvious people will never understand me and I always have to explain everything. According to my psychologist it is all part of the healing. I have to learn how to say I do not want to talk about it. Or perhaps start to talk about something else. It's all one big learning process. Slowly and with a little patience.

But first comes Herceptin number 17/17 on January 24th. 

Mixed feelings

I am not sure if it's smart to write a blog the evening before getting another Herceptin IV. Because I am not myself, so nervous and emotional.

But there's stuff. Things I need to get off my chest. And well it's not like I have many happy days these days anyway.

Before all this cancer crap fell down on me I was working as a project assistant. Before that I worked as a secretary for almost ten years at the same company but at different departments. It was a nice job to start with when you're in your twenties. I've learned a lot about the job and about people.

I am not much of a career person. I prefer a place with a nice atmosphere where I feel comfortable. But when I saw the big 30 coming up, I felt I was ready for some change. I applied for a job as a project assistant within the company. It was a big step for me. I don't like change. I got hired and I knew it was a temporarily job for as long as the project would last. I was sort of hoping it would turn into something permanent and they told me maybe it would. So it was all good. I needed the experience. I would start a new chapter and again learn and develop myself.

About 9 months later cancer hit my world.They never officially replaced me but the project is now finished. My contract will end December this year. Basically my contract says I will go back to being a secretary again. This hit me hard. I don't know why because the thing is, if cancer wouldn't have showed up in my life this would have happened as well. But I would have had more control over it. I would have been able to look around for another job.

Now it feels like something cancer is taking away from me as well. I am god damn tired of cancer taking and taking. It feels like another step backwards in my life.

When I reason this with my mind instead of my heart, I know it's not that bad. I should be happy I still have a job during these hard times. I dare saying I was a good secretary or management assistant as we called it. I know the drill and when I do get back to work, I will at least start with something that is familiar to me. Perspective, perspective! I have a bunch of great colleagues and they will always support me and be there for me. I was there last week and spoke to two colleagues and it felt really good. No big groups of people. Just two of my fave colleagues. That is what I need. No worries about money. Because being a secretary again means lower pay grade. I really have to remind myself health is more important. Happiness is more important.

But all and all it was enough to make me cry for a while.  I am so glad it's almost November. I will meet with a psychiatrist about anti-depressants and my oncologist this month.

The sleepy girl

I'm tired and that's a fact. I would like to explain that there are different ways to feel tired. Because it's an important factor to deal with when you're a cancer patient.

Treatment takes its toll on your body. Chemotherapy and radiation therapy obviously have a huge impact and can make you feel exhausted, even years after finishing treatment. The build-up of toxic substances that are left in the body, yes even when you're done with treatment, can cause extreme fatigue. Doctors do not know all the reasons cancer patients have fatigue. Many conditions may cause fatigue at the same time. It's confusing for both sides I guess. But it makes sense when I tell you that your body needs extra energy to repair and heal body tissue damaged by treatment right?!

Side effects. Yes a lot of us need to take the five year pledge of Tamoxifen. A fantastic drug with a billion side effects and fatigue is one of them. I mean serious business here. I've read stories of 30 year old women whom felt like 90-year-old-walker-grannies. This is one of the reasons why I am so scared to start taking this little pill. Depression is the other one.

The emotional stress of cancer can cause physical problems, including... yes fatigue. It's common for cancer patients to have changes in moods and attitudes. Anxiety and fear are big words all of a sudden. So we often reach a point where we feel both tired mentally and physically. A tough place to be in. Throw in depression. You'll get one big messy pile. Oh so fragile. 

I have FIVE Herceptin left. So I decided to approach this matter in a positive way in my art journal. But when I was done I felt like crap. Five is still a lot and it was so overwhelming. I hate the fact I won't be able to finish my treatment this year but that I have to do two more in 2014. 

So my mood swings are horrible. They go up and down - up and down during the day. I get upset over the smallest things. I worry worry worry. All while I try not to get upset and not to worry. Get it? How this contradiction is wearing me out. 

I am so sensitive. I open facebook and I read another story about breast cancer. I cry. All the Pink Awareness crap I have unsuccessfully tried to ignore. I am sorry if that sounds cruel. But there's another contradiction there. I get so much strength from reading everybody's stories that are similar to mine. And then again, they make me so sad as well and sometimes I just want to avoid breast cancer in general. I don't know if that makes sense. Fight Club quote: "You met me at a very strange time in my life." True story.

So what else is new? I am now taking calcium and vitamin D medication because of the whole osteoporosis thing. I'm seeing my therapist next week again. Psychiatrist and Oncologist are scheduled for November. Wonderful. 

I noticed a small change inside of me. A positive one. The introvert I used to be is slowly turning into someone who thinks communication is a wonderful outlet. Even though it's within a small safe zone, it's progress. When something is bothering me, I now ask myself; am I going to worry about this for three days or just say what is on my mind? It usually comes down to it that I speak my mind. So that's a good thing and I'm hoping to develop it further.

Hair diary update! It's starting to look curly on the back. But hello I want curls on top as well. Guess it's still too short for that. 

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.

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.  

I try

Did you know there is a direct relationship between the lack of estrogen after menopause and the development of osteoporosis? After menopause, bone resorption (breakdown) outpaces the building of new bone.

Although the results of my Dexa scan and blood works were okay. My onc gave me a call and told me he wants me to see a Osteoporosis nurse anyway. I think he wants me to be on Calcium and vitamin D supplements or something like that. He told me it's because I still have such a long road to go with the Tamoxifen and all. So it's all a precaution.

But for me it's another appointment at the hospital. Medications I have to take related to my cancer. I fucking hate it. I'm so tired. I have 4 hospital appointments scheduled in September, one at work... and this Friday it's Herceptin nummero 10/17.

Waking up in the morning is the worst. I have never been a morning person... but there are times I don't know how I'm going to cope with everything. I try. Man I try. To be positive. The stuff I tell myself... but it just doesn't always work. You're just happy to make it through another day. 

I still get so sad sometimes. About everything. But also about the lack of understanding from other people, especially when they're close to you. Words that can hurt so much. I tell myself they haven't walked in my shoes, so they don't know. They can't possibly know.

I did visit work again, which was good. It still feels weird and uncomfortable being there. But it's important for me as well. To interact with my colleagues. I get so overwhelmed though, when I'm in a room and all of a sudden six people show up and they all want to know how I'm feeling.

Of course there's lots of comments about the hair. There are days I love my hair, I love every single hair on my head. But when I look in the mirror I'm also reminded of the story and the pain behind it.

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. 

As much truth as one can bear

That is actually the title of an album by one of my favourite singers yet to be released. However it seems fitting for this post.

Life after chemo has been hard on me. With a sad face I want to pout, 'Herceptin isn't anything like they promised it would be. You liars, it reminds me way too much of chemo.'

I know I always described chemo as my black hole. The darkest, coldest, loneliest place on earth. But this weekend I think I hit rock bottom. It was freakin' hot and sweaty with lots of salty tears.

I have been feeling so sad for the last couple of months. My heart aches. I am nervous about everything. Everything. I seriously do not have any control over my nerves any more. I don't enjoy the things I used to. I'm so sad about everything that has happened to me. So scared about everything that is still coming up, the Herceptin I won't finish until January 2014. I see bears on the road everywhere. I'm done. It's been over a year and I'm done. I could not make it one step further.

So there I stood... in the middle of the room with my hands clinging to the dining table. Crying uncontrollably and screaming out loud I was going crazy. With my dad on my right side and my mum on my left side. Holding me.

I broke. 

So it's time. To reach out. I realized I can't do this all by myself any more.

So we called my oncologist and his secretary forwarded my appointment to next week. I am going to tell him how I feel and that I'm ready to see a psychologist.

Advice is like snow - the softer it falls, the longer it dwells upon, and the deeper in sinks into the mind. 

Yes. I finally made my decision and I realize that I won't be healed in a week or forgotten everything after a year. No this will be my bagage for the rest of my life. So I better make sure I give it a nice place. A little corner. Because I deserve that.

Fuck cancer

So there are a few terms in cancerland I really loathe. Today is the perfect day to explain myself and let you know why I feel this way.

Let's start with Cancerversary. Because after all today would be my one year Cancerversary. Really?! A Cancer-fucking-versary?

An anniversary is a day that celebrates a past event that occurred on the same date of the year as the initial event. 

I'm sorry but the appropriate response to a "Cancerversary", is just NOT “congratulations”. There is nothing good about having cancer. I get that some people see it as a date to celebrate life and the fact they pulled through. I don't feel like that. Maybe when I am done with treatment and step by step putting this behind me, when I will feel 'whole' again, like a person. A new me. Better, stronger and improved. Hell, maybe even carefree some days. I will celebrate that new woman's life and enjoy every single minute of it. But I do not need a stupid fucking Cancerversary for that.

The other term I'm really uncomfortable with is survivor. Just like Cancerversary it's just not something we use in my language related to cancer. Yup no concept of “cancer sur­vivor” in Dutch. Maybe that is one of the reasons why I would never call myself like that. 

Survivor is someone or something that still exists after an event that could have killed or destroyed them.

Last night I was watching Homeland (great show) and Brody said, "Don't call me a hero, I was captured and shoved in a hole and all I did was not die." And I could relate to that. Maybe I don't give myself enough credit here. Maybe it's unfair to all the pain I felt and am still feeling. But what word do we have for the people who fought just as hard and didn't make it? And why only cancer? We don’t say the same thing when someone has con­gestive heart failure.

So today I cried. Bawled my eyes out, exactly like one year ago. Only this time it's because I'm so sick and tired of everything cancer. 

"Remember how far you’ve come, not just how far you have to go. You are not where you want to be, but neither are you where you used to be. "

How are you

It's always weird when strangers confront you with your illness. I mean seriously, I know I would never do that to a person I do not know. But apparently there are people out there confident enough and see no problem with it. I was with my sister at this health store buying Weleda products. I was wearing my hat not my wig.

The lady at the counter asked me whether I used these products before. Yes yes I'm a fan. She then asked me whether or not I tried the pomegranate line. I told her I'm not familiar with those products. She then said, "I'll give you some samples, may you use lotion and oil products? I ask because I have a friend... and well I know there were products she couldn't use during treatment."

Okaaaay. Weird. I felt weird. A little uncomfortable. There were people standing in line behind me. Quickly I told her I already finished chemo and I can basically use anything. "Oh gooood", she said, "and your prognosis?" Wow. Really. "Yeah I'm fine, everything is fine!" I said.

Aw-kward.

Truth is. I'm not fine. I'm having a hard time lately. Three months since my last chemo and I have been crying for the last two weeks. It just takes me off guard sometimes. These feelings. My head becomes a dark hole. My heart weights so heavy. The pain is intense. I do not have any control over my nerves. The tears just keep coming and coming.

I think I have accepted these pretty pretty tears by now. It makes sense right?! After all the shit I've been through, I also have to go through this. I have to process what happened to me. I was worrying so much about not knowing how to pick up the pieces but I'm not even there yet. First you mourn I guess.

So yes I have been thinking about seeking help or reading a book about dealing with cancer. But again: not there yet. Today I realized I need to seek distraction in things that aren't cancer. Things that make me happy such as art, being creative, shopping, bunnies, books, TV series.

Since my hair is working hard on a serious come back I decided to dedicate a page to it. You can find it on the menu on the right or just click here. I will update this page every month.

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.

The sound of silence

I'm struggling.

It's been almost three weeks since my last chemo. I will have Herceptin #4/17 coming up this Friday.

I talked to a colleague on the phone this week and it really hit me that people will never understand what I went through. I know I've always realized this, but talking to her all of a sudden made it so clear and obvious. She is the sweetest person, but was completely clueless.

I think it made me feel so isolated and alienated from everybody else. During chemo I only had my family around me, a rare visitor every once in a while. But it was just my family who saw me at my worst. So how do you connect with people after going through something like this? I'm nervous for all those 'first time' conversations.

Life is so different for me now. I need to find balance and structure. A way to deal with everything that has happened. I am not the same person any more. I know that must be weird for other people. I understand it's hard talking to a 'sick' person as well. But I feel so alone in many ways. Cancer is like sitting on a freakin' deserted island. This is my worst nightmare and it goes in a bag pack that I have to carry with me for the rest of my life.

The only people who really get it are other people who have had or have cancer. It's good to have 'breast' friends.

So yeah it is hard for me to talk about everything that has happened. I think I'm really learning and experiencing what to tell to whom. This morning I read a quote on the Pinterest board as if it were meant to be:   

"Sometimes it’s better to keep silent than to tell others what you feel because it will only hurt you when you know they can hear you but they can’t understand."