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.