August 20, 2014

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. 

August 3, 2014

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.

July 31, 2014

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?

July 12, 2014

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.

July 8, 2014

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.


June 24, 2014

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!

June 4, 2014

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.

May 28, 2014

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.

May 23, 2014

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.

May 15, 2014

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 ;)