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!

Home is where the heart is

Despite me freaking out about my conversation with my company doctor... I took some big steps. I can feel the change.. and it makes me very nervous... but it is with mixed feelings because I'm also proud of myself.

+ We started cleaning my apartment.
+ I bought some new things for my home. 
+ I spent there an afternoon by myself which was very emotional and therapeutic.
+ Even though I do not live there yet, I had my boss over at my place for tea.
+ Saw my company doctor and explained why I freaked out over our last appointment and he totally understood. He also said I should continue to work on these steps I'm taking. But that I'm not fit for work yet. So for now I'm trying to focus on moving back home, trying to enjoy life more... be more stable.
+ Sold all of my Christmas postcards in my Etsy shop.
+ I had lunch with an old colleague.
+ Spent some time with my sister; shopping, tea time, lunch etc. 
+ My colleague and his 2 year old son visited me.
+ I really enjoy swap-bot! You can't buy happiness but you can swap?!

- I still feel very emotional and cry about really silly things. 
- I am overwhelmed by almost everything.
- I panic when I have to make appointments or have to add structure and rhythm to my life. 
- I'm having doubts whether the 30 mg antidepressants are enough. I have to discuss this with my psych in December.
- I sometimes cross my boundaries and I end up feeling really exhausted. 

+ Despite living at my parents' place for two years my home still feels like home. 

Stormy head

So I come here to write about the bad days and today is one of them. Which means prior I had a couple of pretty great days; I visited my colleague's farewell party (which was a HUGE step) for me, I had another colleague and his son visiting me yesterday, I also spent some time with my sister interior shopping and eating ice cream which is always good. But today... is crap.

Last week I talked to my psychiatrist and he is a very nice man. He gets it. Which is nice. Although he has a Lego lunch box. He explained a little more about how the anti-depressants work and such. I have another appointment in six weeks. Until then we see how it goes... But I'm not climbing this mountain without any bumps in the road... that's what he told me. It's completely normal that I still face bad days. To be honest I think I'd freak out if I didn't had any after everything I've been through. He also said, I react the way I do to certain situations, because of what happened to me. I don't have enough 'leverage' to respond in a way I would normally do.

My company doctor told me to spend more time socializing, replace cancer by fun stuff. If only it were that easy. But he also gave me another compliment that I'm doing great even though it might not always feel like this. He said, "Six months ago I couldn't even have a proper conversation with you and here we are talking and laughing."  He wrote down he wants me to work on my physical condition and that I should spend some time at my own place. By giving me these 'orders' I totally freaked out of course... because I feel I have to do this my way, in my own time.

But hey last week we started cleaning my apartment. After two years I have to say... it IS necessary. My parents are helping me with this, and when we're done, perhaps I can spend some time at my cute little place by myself. We see how it goes. When I'm ready. I should do this my way. My way. Or the fucking high way.

I bought myself the new iPhone 6 plus, very happy with it! Also got my matching sport band so I can start walking again. If it ever stops raining that is!

So for the last couple of days I sort of had these moments were I feel dizzy for just a second. Not when I get up, but more when I sit or stand still. It's weird. The hypochondriac awakes... definitely do not trust my body. I mean I was confronted with my own mortality at age 30, this is just... well obviously you think the worst. But then again you don't want to jump to these conclusions after all the treatment you have been through and well, you don't want any more doctors or fucking scans... so what to do? I know it's probably the medication causing this and I will bring it up next time I speak to one of my doctors. If shit hits the van and it becomes worse I will see my home doctor. But for now I just have to believe I'm okay. Okay. 

Once again the weather fits my mood. It has been raining and feels a bit stormy all day long. Lets aim for a better day tomorrow!

Changing colour

So it's been a while, Hello October. In case you were wondering, I'm ignoring Breast Cancer Awareness month. Call it denial. Whatever. I am so done with that shit.

As for the running part... that didn't go as planned. Wow nothing does go as planned did you notice?! Better all let it go and see what happens... So I ended up with some serious knee ache and decided it was better to quit for now. I cried a lot because of the quitting part yes. Because I finally had found something that made me feel normal, and not like a patient. Something that felt so good... and wow my body could handle it. Guess not. So I am not giving up on this... but for now it's back to walking. Today I walked my first 5K. It was pretty good... the music, nature, just me, myself & I... at fast pace.

I'm still experimenting with the anti-depressants. I am now on 30 mg. Because after a few weeks things were back to normal (in other words: lots of crying). But I can't really say the 30 mg is making me feel a hell of a lot better. Don't get me wrong I have good days, but it's still a struggle sometimes. I know with anti-depressants you have to give it a few weeks.. so that's what I'm going to do... and I'm meeting with my psychiatrist in a week or so.

What else, what else? I saw my radiologist which brought back lots of bad memories. Radiation treatment. The dressing room, autumn, walking through that hallway with my upper body undressed. So I try to do what my psychologist says, I let myself think about it... for a while... let it flow. Then I tell myself, you are here now, no treatment whatsoever. You're okay. And then I try to move on. Sometimes it works, sometimes it doesn't. I suppose it takes practise, but I kinda think that is the way to approach these triggers.

Next week I will have my Zoladex injection. But it's the last one this year. 

I have been keeping myself pretty busy with penpalling, snail mail, mail art, mail swaps, etc, etc. I enjoy it a lot! I also have been working on Christmas postcards for my Etsy store, they are already available if you want to check them out!

I also had my second hair cut! It really is growing and my curls are sooo coming back! I also have a pair of new specs which I really love. I have started to buy some new autumn/winter clothes as well. Which feels good. Ah and I also gained some weight. Hallelujah!

Blue sapphire

He said, " You really are different from last time I saw you. The problems seem to have less control over you, it is more like... you have taken back control."

That's what my company doctor said. He was quite happy with my progress (remember: progress = progress no matter how small). But I took some steps, made some decisions. Here I am, voilà it's September.

So let me start with that horrible physiotherapy training. I quit. I did it, I finally decided it wasn't for me. Thanks to Ashley who reminded me there are 100 ways to climb a mountain.

The only thing it did give me was enough confidence to put on my running shoes and just go for it. Before I got sick I used this app called Get Running and I really liked it so I am using it again. You can find more information about it here. Basically it's a Couch-to-5K running plan, but I will start running twice a week instead of three. I will take it slow. Let my body get used to it. But fuck hey, I'm doing it. My first run... was very emotional. Because I was thinking of the horror my body went through... and now I was here all of a sudden... fresh air, beautiful nature, wind in my HAIR! I really cried my eyes out when I got home. It was good. A milestone I would think.

I always do some yoga stretches after my run. If you're interested, I follow exactly this routine. I try to do some other exercises for my upper body through the week, low key, whenever I feel like it. No pressure. First priority is: running. Because it is something I like and I think I really could benefit from this mentally as well.

But I made another decision after talking to my psychologist and psychiatrist... I was going to give the anti-depressants another go. So I made this long list for my psychiatrist and he was pretty cool and understanding about everything. I am still seeing my psychologist every three weeks and it's nice talking to a woman. But this dude, well he gets me. Which is good I think when somebody prescribes you medication. I have been taking it for almost a week now... I think I feel a little more calm, a little less emotional... more steady? Of course it is way too early to tell how this will work in the long run. But at least I'm not freaking out or feeling like a zombie (it happens, been there.. done that). So I think we're on the right track with this as well. Which made me cry as well. Weird eh? I have been feeling so much pain and heartache... now I finally get a little bit of fresh air... As if I'm taking a deep breath... and I cried because I didn't have to cry.

So all and all that sounds pretty good and uplifting doesn't it? I don't expect miracles all of a sudden.. but at least there's improvement. I expect more bad days, but I know the sun will shine as well! 

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. 

Rain grows flowers

Just before I went to sleep last night I checked my phone and stumbled upon this message on facebook about people with a lumpectomy that did have a reoccurrence. 

Try getting some sleep then. 

I actually realized that I haven't been thinking that much about reoccurrence. I think I have that hidden somewhere deep down inside of me and I don't want to think about it. But last night that door was set open.Wide open.

It totally freaked me out. What would happend if I had to relive my worst nightmare all over again?

Forever and always my biggest fear will be that my cancer may return. 

So there I was in the middle of the night. A silent, yet paralyzing fear that I felt in my soul, in my bones and heart. Creeping and crawling. I told myself I was okay and kept repeating that.

I stood infront of my window, trying to get some fresh air. Without my glasses the world looked so blurry and dark. As a photographer what do you do when life looks blurry through the viewfinder? You adjust your focus.

It's weird how everything seems worse at night. Because I don't want to feel like that again. I have been disappointed by people as well. Cancer is isolation and loneliness. 

But hey who's in charge here? It's little ol' me. I need to make some changes. Some decisions that are good for me. Be selfish with myself.

Because if a certain person/website/board/social media/... or whatever it is that is making you feel bad... it is time to cut them out. 

Simple as that. 

I am going to focus on things that make me happy. Sweet people that are loyal and true and are helping me to feel better. Love is stronger than fear. So I am going to try and love really hard. 

I know I already took some small steps... I want to fill my heart with what is important to me and be done with the rest. Starting another blog where I write about other things than my disease is one of them. You can check it out here: Tea with Bunnies.  

Courage, dear heart. Don't be so hard on yourself all the time. Be happy with what you have, while working for the things you want. Time and patience are your best friends.

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.

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.

Acceptance

Hello I am Ciel and I'm depressed.

So remember that my last conversation with my psych didn't really go so well and she only made me feel worse? Well we talked about that... and at first she pulled out, what I feel like were some psych tricks... but then we set things right. She explained what she meant. I told her how I interpreted her words. I think we're fine now. Except that she wants me on meds again. Again I told her no. I want to give myself a few more months to see if I can do this on my own and if not then perhaps I will talk to the psychiatrist again about medication. But seriously, I'd rather not.

Yesterday I saw my company doctor. I spent 30 minutes in his office and we had an interesting conversation. UVW came through and they are now my safety net, so I do not have to worry about money. Which is good. But my company doctor made it very clear to me that I am depressed. He actually said, "You are sick in the head". Which is completely normal, he added, after everything you have been through. But still, he thinks I need to accept my depression like I have accepted my cancer and my treatment. He has a point there.

Because I have been telling everybody I'm mentally not doing so great. That I'm emotional, vulnerable, unstable, sad, angry... but no not depressed. I don't know why this bothers me so much. It's not like I should be ashamed of this and I think I have proven I am a strong person by now. So why oh why do I not want to label myself as depressed.

The answer is I don't know. Perhaps my psych can show some light on that next time. The thing is, I am starting to doubt (fucking cancer took away my confidence) whether or not I should be taking any meds. I've tried them twice before, unsuccessfully a.ka. big disaster. Something I never ever want to experience again. But with the right kind of meds... I also understand things might be a little bit easier for me. Am I torturing myself while this is totally unnecessary?

This whole sick in the head reminded me right away of a song. It's by (Keith) Mina Caputo. Who's music has been in my life for over ten years. She actually contacted me the other day on Instagram, posting one of my photos and I also got a message on facebook which means the world to me! What a kind soul, such pure music. That goes straight to my heart. Especially now that it feels a little broken.

 Pure heart and soul, the treasures I own
Where did you go and how have you grown?
I'm sick in the head in a number of ways
I recommend a psychotherapist to clean up your brain

So I don't know, I think I'll wait for my next appointment with the psych and discuss everything again and see how I feel then. Gotta let it go for now.

Now to focus my mind on something else I bought Wreck This Journal by Keri Smith and I can recommend it to anyone! I am having lots of fun with it and it really is inspiring and creative in a unique way. I am also considering buying One Line A Day by Chronicle books. Which is a five year memory book. Right now besides this blog I don't keep a paper journal or something like that. Just my art journal. So this seems like a nice therapeutic book to start writing again. 

I also figured it was time to give my photography another chance, so I set up a Facebook page you can now like. Or you can even buy postcards in my Etsy store! Yay!

Face this

Sometimes I don't know what to share on all of these social media sites. I have been open about my disease from the beginning. But I always have been afraid people will not understand the things I post. They see pictures of me smiling together with the buns and will think I'm happy. I post pictures of my hairgrowth because I'm proud of that. I share my artwork. I show a new dress. When I share a funny picture they will think I am okay.

But... what they do not see is me sitting on the couch sobbing. Because there are no pictures of that. You don't post about the sadness of it all on facebook, now do you? The real truth is much darker. I cry A LOT, I scream and then there's a billion other emotions (no Emoji icons for that) and yes... sometimes I laugh.

I may be done with treatment but that doesn’t mean cancer doesn't still affect my life. I suppose it will always be a part of me. Recovering from cancer treatment isn't just about your body — it's also about healing your mind. Right now, for me that means an emotional struggle, trying to pick up the pieces while fear, grief and fatigue still play a big role.  That is what I shared with the world today. I don't really expect people to understand because they can not and never will, unless you went through the same thing. 

I hate it when people tell me they 'get my journey' because their aunt had cancer or something like that. You don't know shit. Three words: DO NOT COMPARE. Please.

I also shared some great news, because I had another mammogram today. The results were fine! So yes I can breath again. Did I mention that it hurt like hell?! Far worse than the first two times, which probably has something to do with my weight loss. But hey I am thankful for this and for each hair on my head.

Wreck this

It seems to be the month of tough conversations.

So after I let everything sunk in from my appointment with the insurance doctor at the UVW... I received his report. It is so freakin' hard to read what people write about your emotional well-being. Especially when our conversation didn't last any longer than 15 minutes and I still get mad when I think about the pain his words caused me. But guess what his report wasn't so bad! He got the point pretty much right. The essence of my story and why I am not working right now.

So today I talked to the employment specialist and I wasn't sure whether or not I was going to bring up the insurance doctor or not. But we got to talk about the report pretty soon and so I simply told him everything. That it caused me a lot of pain and that I felt I was treated badly. That you don't deal with people this way. He knew this doctor pretty well and we had a good conversation. Which was such a relieve. I have to wait for there final decision, but if everything goes right I'm just going to leave it at that. At work they wanted me to file a complaint but I don't think I want to. It will cost me too much energy. The report was pretty much okay. My appointment with the employment specialist made me feel better. Hey we even got to talk about bunnies! So sometimes you have to let things go. All I want is other people to understand why I am not working at this moment and the safety net that is out there to catch me. Because I have fallen. From high.

On Monday I talked to my psychologist. Not a great conversation either because... yes here it comes... she told me that my cancer diagnoses hit me hard.. perhaps harder than it would hit other people. Seriously WHAT THE FUCK?! Do we not learn that you can not compare yourself to other people? And that grief can not be compared to grief? I was and still am very upset about her remark. I lived my own personal horror story! I don't know what she meant by it. There might be some truth in there, but it sure as hell isn't doing me any good. Which sucks, because so far, no matter how painful they are, our conversations were always pretty good. I definitely have to ask her about this next time because it's been bothering me for a while now.

She actually also wanted me to be on anti-depressants again but I refused. I hate it how I let things become so big and then they just blow up in my head. Not good. I am fragile and emotional YES! I cry ALL the time. But never do I want to feel again like I was on anti-depressants. I know they weren't they right ones for me... but I don't think a pill is going to solve everything. I have to find my way through this. Grief, cry, mourn, scream... whatever. But at least they are real feelings. They are me.

Next week I have my mammogram. As you can guess I'm absolutely crazy nervous about this.

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 ;)

Hello May

Hello May. I want you to be a good month. I want sunshine and baby ducklings! Bunny hugs and bare feet! I want ice cream and well most important... I want to feel good.

Being sick for two weeks brought back a lot of the bad stuff. Almost as if they waited till I was down and then started kicking me one last time! Lots of chemo memories. Other stuff. I just want to forget it. Move on.

I had another Zoladex injection and fuck, I hate it so much. This one has got to keep me going for three months though. But seriously, I have been through a lot. Pin cushion that's me. But this Zoladex injection, even with local anaesthesia it is one tough son of a bitch. Egh!

I met with a colleague yesterday. We talked outside on a bench at the river side. It was nice. I still get upset so easily and I am tired so quickly. Sometimes this blue blanket of sadness just comes over me in the middle of the day. It could be something a stranger says, or something I read, something on TV. Last week I woke up and I was all of a sudden sitting in a hospital bed, bald. The image was so vivid. Almost real.

But I don't know, I just want to enjoy life again. Even if it is just the small things. I also have some exciting news coming up (photography-wise) and that is why I want May to be a good month. Are you with me?

Stress

Well I haven't really learned to draw the right lines yet. Again I am exhausted. When I'm tired I also turn into a cry baby. I start to go over everything and always find a billion things to worry about.

Stress has been something that pops up a lot lately. I freak out over EVERYTHING. Silly little things, they become huge inside my head and it just drives me nuts.

For example I decided the monthly Zoladex injections were too much of a burden and so my next one will be for three months. I'm already nervous about it. Because I've had barely any side effects so far and what if that changes when I get an injection for three months? What if, what if. I have to try it and just really really hope I'll be okay. I have to be okay. I couldn't do it, these injections 12 x a year... each month, it would be way too confronting. So please please let me be okay with the injections for three months, because that means I would only have to see my home doctor 4 times a year! What a big difference.

I am also feeling a bit under the weather for the first time. I have a sore throat and expect to get a cold. It goes around. But I totally freaked out about it because last time I had a sore throat I was admitted to the hospital for six days. I don't want to feel sick. I am sooo scared of actually feeling sick. Even though it is just a cold and it is nothing like chemo.... getting sick scares me so much right now.

I also have a strong trigger that goes off when I open my closet. So many clothes, so many memories. I remember exactly which hat I wore with certain outfits. I remember which sweater I wore when trying out medication. I remember every fucking little detail. So I filled two bags with clothes and gave them away. But at the same time it made me cry because I wanted to burn everything and I realized it wouldn't change a god damn thing.

So let's try to end this with some positive news. I made 25 new designs of photo cards that will go into Ann Marie's Bravery bags for chemo patients. I already had 25 designs so I now have 50 different versions and I hope they will spread a little faith and hope.

I also have been talking with an online postcard shop who are interested in bringing out a postcard set of six of my photos. Now come on that is exciting news! 

Lines

Last week I crossed my own lines. I think it took me about three days to fill up that battery again.

I saw my psych which always has a huge impact on me. I talked and cried about everything. She said that during treatment my emotions were on hold and that they are coming out now. It's not just sadness or depression, but anger and frustration as well. The thing is by not accepting... what it is... I am physically and mentally racking myself.

So then I had another visit on Wednesday at the hospital and my blood results were fine. But going there is always upsetting for me. Because everything is cancer related.

The other days I tried to pick up some pieces by going out for a while by myself. And I also visited work. I hung out with two colleagues. We sat outside on the terrace, cup of tea... it was nice. Explaining my feelings to them and where I'm at right now was tough. Of course I only start to notice this when I come home. When it's too late. But I have to learn from these things I suppose. Draw some new lines. Because it was bad.

When it's bad... I get upset about everything. The big bad monster comes out and tells me about everything that could go wrong. I feel broken. I see happy family facebook stories, I read about beautiful young people dying from cancer. It is just all so fucking wrong. People talking about their vacation and all I can think about is how to make it through another day. How I worry about the Tamoxifen and the Zoladex. Once I'm in that state of mind... there is not much I can do. Let it be. Throw it all out. Break.

After a few days I return to a more... well what should I call it? I don't have a word for it. I am a work in progress. But I realize it is wrong to compare my life to others. It isn't going to do me any good.

This is my 100th post! Milestone? Lets try to fill our hearts with what is important & be done with the rest.

Ode to an onc

Holy macaroni. I am freaking out over something that might seem a little strange.

But once you have been diagnosed with a horrible disease your doctor is your best friend. If you do not totally trust this person than go find another one.

My oncologist takes his time. Which means you usually have to wait 30-45 minutes in the waiting room. No matter how sick, anxious or horrible I felt, he was there... making sense of everything. He carefully explained every question I googled. He took the time when I had long lists with crazy questions. He emailed me back when I forwarded him research material I found on silly websites. He called me back, even if it was around dinner time. Sometimes he even made me laugh!  

When I first came to see him with a bald head he told me I looked good and he meant it, because that's the type of guy he is. We talked about other things as well such as his family, my photography and art. I even showed him some of my photography and he loved it and thought I was well.. special. 

Yesterday I found out he's leaving for another job. An important job... But he won't be my onc anymore. I wanted to cry and hug him, but I didn't.

He gave me a compliment, because things weren't easy for me during such a long period of treatment. But he told me I am definitely a fighter. He also said it was a bit strange to say because he is a doctor and I am his patient, but he was proud of me. He told me he was happy that I am taking the Tamoxifen and the Zoladex. The last step of our treatment plan and that I should now mentally work things out. That I should focus on that.

He also said it was hard for him turning over his patients to another doctor. He already found his replacement and he said it was a long process of finding the right type of person. But he thought that I would get along with the newbie. Hopefully my next appointment won't be for a while though.

So we shook hands and I thanked him for everything and he knew I meant it.

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.

Who is in control

My psych told me to keep writing so here I am. Behind the keyboard.

It's been two weeks since I started my Tamoxifen/Zoladex trial. So far I have only experienced mood swings. Although I have to admit I've had those before I started this trial. So... I am not really sure where this is going. I tried to ignore all of this stuff and not think about it. But then I read a piece on fbook (darn internet) and I got all upset afterwards. Because most reactions weren't positive. All messages from women with horrible side effects. Even one that wrote her side effects started after three months. So now I'm not sure what to think of this anymore. My psych told me to integrate it with my life. Make it a part of my new life. I guess I just keep on going and when I reach a moment the side effects kick in and I can not handle it anymore; I know in the back of my mind I can always quit. But now that I have started... I feel like I have to do this. I want this. I want to be that positive voice that will be able to say okay Herceptin and chemo were hell on earth... but Tamoxifen/Zoladex... not so bad. I want to be that person. Please let me be that person.

I also had an appointment at work about me applying for official sick leave at the UWV. Which was tough. My brain can not cope with so much information at the same time. This guy kept going and going.. and all I could think about was how painful this is. I kept wondering if he understood that. So we have to collect all these different papers and fill them out next time. It's crazy. But I guess I have to be thankful my country has a safety net like that. I had a good talk afterwards with my boss though. I really explained some of the things I am going through right now.

One of my favorite authors came to my town and I got a signed copy of one of his books. At first I didn't want to go because I was afraid I couldn't stand in line for that long. Things like that make me really nervous. Places with lots of people. It's so totally out of my comfort zone right now. But I went anyway and it was good.

The weather has been spring like lately and I have been taking walks and feeding the ducks and swans. 

I have been drawing a lot in my art journal. A great outlet. Gives me more joy than photography right now.

Today I went shopping for new jeans (yes still weight loss) and ended up buying some cute spring clothes. Which I haven't done in ages. I was totally exhausted when I came home.

So these are good things. But I hate how the bad things always have the upper hand. How extremely tired I am. Fuck that shit. I am a 32 year old woman and I am so jealous when I see a person jogging with their iPhone. When I freak out over the smallest things. How I always have appointments scheduled at the hospital. A new mammogram is already scheduled for June. Then I read about a young girl's cancer returning. And it just breaks my heart. This horrible fucking disease I hate so much. It is always present and that makes me so sad. 

The trial

I went to see my oncologist with a picture in my head of how it all was going to be. But for a second I forgot things never go the way you plan them.

My blood work came back fine. Everything looked normal. Which is always a relieve to hear. 

I was going to say yes to the Tamoxifen and no to the Zoladex.

But my onc says we're dealing here with European guidelines. Basically it's all or nothing. First you try the whole package. If you can't handle that for whatever reason, then you look at other options.

So I have my first box of Tamoxifen at home now. Tomorrow my family doctor will give me my first shot of Zoladex (for a month, not three months like it's normally given).

I said yes. To the whole package. Because I know I can never live with myself if I said no. Do I have faith? Do I really believe I will be able to take these meds for five years? I hardly can to be honest. I know that isn't a good start. But my response to medication in the past has been well... upsetting. Definitely causing some traumatic experiences. I am SO scared to get sick. How ironic is that? These pills should prevent me from getting sick. But at the same time... they have terrible side effects.

I know, I know some people are taking them without much trouble. But because of my experiences with Herceptin and other drugs... I just feel this WILL BE the next bad experience. I am just so scared and sad. I wish it would all go away *poof* like that.

My onc told me that if I make it through all of this pain I will still have the scars. But in the end I will become a different person because of it; better and stronger. Even more interesting and colourful. I want that. I really really want all of that. I really feel like I am going through the pain. I know I am not hiding from it. But it's all taking so much time and patience and energy. It's exhausting to live your life like that. A constant struggle.

Anyway I have an appointment with my onc in five weeks and we'll discuss how everything is going. If I can't handle it we'll look at other options or perhaps I will quit the whole damn thing. A month. I'm giving myself one month. 

Hair diary update. 

Blood test first

So I saw my oncologist last week and I got to ask all my questions about the Tamoxifen. We also talked about the Zoladex injection. Which kind of freaked me out. My onc wanted to do a blood test and he will get the results back in two weeks. I will then have another appointment with him. He told me to write down my questions again (and you bet I will) and we'll make a treatment plan.

He told me perhaps I can start the Tamoxifen every other day so my body can slowly get used to it. Which sounds appealing to me.

In the mean time I have been asking around about the Zoladex injection and found out not that many women actually take it. So I'm having seriously doubts about that one. I will spare you all the menopause side effects details. But it's some scary shit.

So I am tired. Of all this crap. But somewhere, deep down, I have to believe that maybe this time... the side effects won't be so bad. That I have been through so much and that I can handle this as well. I have to believe. If not, I made a promise to myself I'm done. I will quit the shit and will try to move on. But first you try. First you have faith.

He said it takes at least 6-9 months before my body will feel a little bit better after everything its been through. I might never reach my old energy level... but then again nothing is sure in cancer land. 

Today I saw my company doctor. My company hired a new one. Although he read my file he wanted me to tell my story in my own words. I did it without crying this time. Which was pretty awkward actually. It was a good talk all and all. He was pretty nice and not pushy. July 2014 I will be sick for two years and then different rules apply. He said I won't be back at work by then. So I have to apply for sick leave at the UWV. This doesn't mean I can start working on a therapeutic basis whenever I feel like it. However I have to file like a billion papers before April now which is really just wonderful, exactly what my mind needs right now.  

Tomorrow I have an appointment with my psych. And so the story continues...

Decisions

So is this the last chapter where I am going to break my head over? The hormones estrogen and progesterone can stimulate the growth of some breast cancers. Hormone therapy is used to stop or slow the growth of these tumors.

In my case I was told to take the medicine Tamoxifen as a 5 year adjuvant treatment. I am seeing my oncologist Wednesday to talk about this.

Of course there's a catch here. The 1001 side effects... that come along with bringing a 32 old body in menopause. The risk of uterus cancer. The pressure that comes with taking medication like that, physically and mentally. Just to name a few things I am worrying about.

I also came to realize I am scared. Scared of taking another pill. I have been a 'patient' and sick for a year and a half and I'm done with it. I want my life back. I don't want to feel like a 80 year old. There's such thing as quality of life.

So I have read many stories on the internet (too many). Of course the ones where people succeed and actually take this pill for five years are few and whenever I read one it doesn't stick with me. No it's the bad ones that keep going through my head. The side effects. Because if anybody knows it's me, pills come with side effects. I am so tired. I don't know how much more of this shit I can handle.

Do I have enough energy left to get my hopes up once more?!

At some point enough is enough. 

So I have decisions to make. I made a list with all of my questions and will come prepared as always. I will talk to my oncologist and I trust him, I have faith in him. But in the end it will be my decision.

A letter

Dear Pain,

I don't know exactly where you are hiding, if you're inside my heart or my soul, but you're so strong and raw.

I don't exactly have a "happy place" to go to and I'm not running away from you either. I have tried numbing you with pills but I lost myself completely there.

I have tried taking deep breaths and letting my tears stream. Rivers I have cried. I am not suppressing you, I am staring you right in the face. Even though you're pretty fucking hard to accept. You make me so angry sometimes. But it is pointless I know.

You, Emotional Pain, also seem good friends with Physical Pain. Do you guys walk hand in hand?

So I don't like you, but I do acknowledge you and stay open for you. I will listen to you. Because I don't believe in escaping from you or pretend everything is fine.

But I have to admit, I am a little scared of you. What if you never leave? But then again, I read somewhere everything is temporarily. You hurt right now. You hurt like hell. It did hurt yesterday. It might not hurt tomorrow. So I have to have a little faith and be a little patient.

So Pain, this is the present moment and you're here and I can't change that. Let's have a cup of tea together and I will look you in the eye. 

With love,
Ciel

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.