Showing posts with label fear. Show all posts
Showing posts with label fear. Show all posts

September 18, 2015

The fear

Living with 'the fear' is one of the hardest things when you deal with cancer. You take nothing for granted any longer and you realize how carefree life used to be. The 'what if' pops up regularly, but you try to avoid going there when you can. Because at some point you have to take back control of what once possessed you and your entire world.

I think every person has these alarm bells, but after having to deal with cancer let me tell you they start to ring a lot louder. We can never be sure if the fear is grounded, but it's real and happening. Just as we were landing back on our feet we get hit by the fear. It consumes you. It's like a bad deja vu. A serious mindfuck.

When I started to have breast pains in my other breast this week I thought the cancer might have come back. The scenarios in my head were endless and the fear was creeping in. I think it was for the first time in three years I seriously thought something could be wrong...

I visited my home doctor the same day and she reassured me it was probably nothing. She felt no lumps and everything seemed normal. Just to be sure she made me an appointment at the Mammacare poli at my hospital. What do you mean deja vu?! So the next day I saw a nurse, a doctor and a radiologist (which sounds like a bad joke). They made an echo (because I had my mammogram like three months ago) and told me I was fine. I learned a little more about breast pains and such but I'm especially very very thankful for the way they handled things. They took my complaints very seriously and they were very sweet and gentle. I have to come back in like 6 weeks for another check-up and I think this puts me at ease. I can breathe now.

For me this was a serious reminder though. How scary and lonely this disease is. How fragile our lives are. We really need to slow down and go with the flow.. really see things and breathe. Enjoy and be thankful for the tiny treasures. Sometimes things don't work out, or you're having a rough day.. that's okay because you can try again tomorrow.

Love & light.

April 7, 2014

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.

October 8, 2013

Dementor's kiss

Dementor's Kiss

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

February 19, 2013

Through the veins

Yesterday I talked to my oncologist on the phone. We talked about me staying at the hospital for six days and what other options we have to prevent such thing. He decided we're going to try a Neulasta injection with my next chemo treatment.

This injection will be given the day after chemo and stimulates the bone marrow and promotes the growth of white blood cells. These white blood cells help your body fight against infection. Most common side effects: bone pain. 

So yeah that doesn't exactly sounds like a treat. I already read way too many stories about it on the internet. I'm just so scared. All the poison going through my body. What's going to happen this time? Will my body cope? Will I be in a lot of pain? There's no way to predict. You just have to accept it, deal with it, hope for the best and let it run through your veins...

The Poison Running Through My Veins

February 15, 2013

Hospital horror

Two weeks ago I had my first Taxol/Herceptin treatment. It already seems so long ago because a lot has happened. But this is the story. Uncensored.

I was incredibly nervous. By nervous I mean having to puke in the hospital's parking garage. By nervous I mean having to puke in the car six hours later. It was the first time I had to stay that long and I hated every single bit of it. The smell of chemo department is just... obnoxious. It's just so disgusting, even now.. when I think about it I feel sick to my stomach.

The first few days I was very tired. I slept a lot. Then I started to have the famous flu-like side effects. By the time it was Wednesday I had a very sore throat, nose bleeds and muscle pain. On Friday it got so bad I could barely swallow and I also had a fever. We called my doctor who dropped by that afternoon and told me to go to the ER for some blood tests.

I was under the assumption I would leave there with some antibiotics but was told right away I would be admitted to the hospital because of my fever. They also did a picture of my lungs. When the blood tests came back it was obvious my white blood cells were way too low and I had a throat infection. I was given antibiotics through an IV right away.

When starting chemo you know it isn't going to be easy. You know you're going to get sick. But at least you're home. In your own bed. I'm not much of a hospital person. I already knew this. But it was very hard for me to accept that I had to stay there. So I cried my eyes out. I felt so out of control.

The first two days I had the room all to myself - thank god. On Monday I got a roomie who barely spoke any Dutch. I'm all for privacy in hospitals. And big screen TV's. I really had a hard time trying to keep calm but as days passed I more and more started to adapt to the situation. Being admitted to the hospital once was my worst nightmare when this whole breast cancer story started. So all and all considering I didn't do so bad.

The not knowing part drives me crazy though. Not knowing when you get to go home. Not knowing when you're having lunch, when it's pill taking time, when the doctor will see you... you have to depend on so many other people it's frustrating! A couple of the nurses were really sweet for me though. One even brought me ice cream for my throat.    

At first they told me I would probably get antibiotics for like two days through an IV and then I would change to pills. However, eventually they kept me on the IV for 6 days. At some point my veins got all blue and hard and they had to give me another one. I had to do a blood test every other day. I still feel and look like a pincushion!

After a few days I my throat started to feel better and my fever went down as well. I got to enjoy the lovely hospital food. Insert sarcasm here. 

After six days, on my mother's birthday (Valentines day) I finally got to go home. I still have to take antibiotics for three more days. But I'm home. At last. Reunited with my furry bunnies.

The fact I have three more of these treatments scheduled make me feel very nervous. My oncologist will give me a call Monday or Tuesday and I definitely have a some questions for him and will tell him about my worries. For now I'm hoping to rest and gain back some of my strength because believe it or not, treatment is scheduled next Friday. Time flies... when you're busy being sick.

January 29, 2013

How dementors make chemo suck

When you get cancer everything changes and you know your life will never be the same.

I would like to use this quote from Laura that describes everything just perfectly.
"Cancer changes everything in life. Cancer can be cured one minute, then it can come back and kill you. Chemo can make you infertile. Cancer slaps you around the face, kicks you in the stomach and pulls out all your hair, eyebrows and eyelashes one by one while you're still lying on the floor, too weak to move or fight back. It takes away your confidence, your lust for life. And slowly, it can take away your positivity."
Reading those words really gave me goose bumps because they hit so close to home. Because of her words and my chemo black hole experience I all of a sudden started to think about dementors.

The Darkness Behind Her Eyes

The "soulless creatures" from the Harry Potter books. They are the guards of the wizard prison, Azkaban. They are soul-sucking fiends who, as their name suggests, cause people who encounter them for too long to lose their minds. That would explain the whole chemo brain.

Being blind, dementors hunt their prey by sensing emotions. They feed on the positive emotions, happiness, and good memories of human beings, forcing them to relive their worst memories. The very presence of a dementor makes the surrounding atmosphere grow cold and dark.
Besides feeding on positive emotions, dementors can perform the Dementor’s Kiss, where the dementor latches its mouth onto a victim's lips and sucks out the person's soul. Chemo is like meeting the dementors!

After some research on dementors (that's the kind of geek I am) I found out Rowling created the dementors after a time in her life in which she, in her own words, "was clinically depressed". Dementors really can be viewed as a metaphor for depression. I thought that was a pretty cool fact.

However, because these dementors are immortal, very few methods exist to repel one; but Harry used a Patronus Charm to shield himself and drive them away. Chocolate is an effective first aid against mild cases of contact, which may suggest a non-magical, physiological effect on a person's endorphin level.

So how to prepare for your next chemo?
1. Bring chocolate.
2. Practise your Patronus Charm (mine is a bunny of course).

The Proper Dose Of Chocolate Chip Cookies 25/52 Hogwarts

It also made me realize chemo stinks. Why can it be fun? Why can't the pills be happy pills? Why can't the side effects be smiles and laughter and feelings of zen? We need some happy camper side effects such as absolutely beautiful drop-dead gorgeous hair grow. We want a huge aquarium in the middle of the room to decrease stress. We need furry white rabbits jump around. Why aren't there rainbows painted on the walls of chemo land yet? WHY?!

October 13, 2012

Go on

Radiation treatment. I finished #14 and have only 7 more to go. After my third week I started to feel tired. My breast looks a little red/purple but it's definitely not as bad as I thought it would be. I try not to think about it too much and just go there everyday as if it's a normal thing. Yeah sure because undressing your upper body in a cold room and getting radiation treatment is a completely normal thing to do when you're 30 years old. Not to mention the waiting room. I haven't seen anybody my age. The youngest are in their 40s, but most are over 60 I think. So it's always a surprise when it's my turn and they call out my name... and I get up instead of my mum or dad.

I have an appointment at the ENT specialist next week. My ears, nose and throat always have been a 'weak spot'. After being diagnosed with breast cancer I don't really trust my instincts any more. Going to the doctor will never be the same. What else are they going to find?! I just want to make sure everything is al right before starting chemo. My oncologist agreed and got me this appointment. 

The last three months I have been reading lots of similar stories to mine. Although most started with a lump. Mine did not. 

I remember exactly. May 2012, sitting on my couch, wearing my favourite Beatles shirt, not wearing a bra. All of a sudden I noticed a dimpling in my right breast. A dimpling is weird. Is it really there? When I was wearing a bra you could barely tell. So what's the first thing you do? You google.

I wasn't alarmed by all the websites I found. I remember reading that most changes found in the breast turn out to be benign (not cancerous).

But.

I did regular self-examinations after that and soon I noticed more changes. Again... no lump. Instead something I would describe as an area of thickening underneath the dimpling. Early July my breast started to hurt sometimes. Time to see a doctor. Who also told me that most changes found in the breast turn out to be not cancerous. But he took my story very serious and made an appointment at the hospital. I was 99% sure it wasn't cancer. After a mammogram, echo and biopsy I was told otherwise.

I just wanted to share and write down my story more detailed than I have before. None of these breast cancer stories are the same. We have to remember that not only the medical facts are different with each person but also the way a person actually deals with everything. I sometimes read stories about people who kept working during radiation treatment and chemo... and it makes me feel bad because I don't. But this is my disease and I have to do whatever will gets me through. I should not feel guilty for taking the time to cope with all of this. I am so focused right now on my treatment I don't want to deal with anything else. I have to set my own boundaries. I will. Even when people aren't always going to understand them.

Let's do some highlights:
  • One of my photos was published in a book called 101 Ways by the Impossible Project. The selection presented in the book shows a wide range of ideas what to do with an Impossible photo once ejected by your Polaroid camera. You can buy the book here.    
  • Celebrated World Animal Day with the bunnies and baked them cookies. Also made a donation to the shelter where I got Charlie from. 
  • It's been a while but I laughed so hard I almost peed my pants. My sister never rides her bike.. but when she does, it was raining cats and dogs! So I offered her this lovely plastic purple poncho and she looked hilarious!  
P.S. It's still October Awareness Month. Say NO to "Pinkwashing".

"Pinkwashing"

September 13, 2012

To wig or not to wig

The last few days were very hard for me. I feel as if I have so little control over my life and well it just hit me how much I miss my old life. I am being ripped away from my everyday life. Julie compared our journey to a road trip. Her comparison seemed so spot on! With each treatment they will give you time to recover before the next. But in fact it's nothing more than a short break to pee. You gotta get back into the car until the next rest stop. You stretch your legs and use the bathroom, maybe you will feel a little better. Then after a while, you start to feel trapped in your car. You start to panic about everything. Oh my god where is that next rest stop?! Then I haven't even mentioned our destination yet: live a long and healthy life. But wherever we go next... we will carry this road trip with us in a large bag pack and it will hang heavy on our shoulders.

03/52 Movie Star

After I found out I had breast cancer I knew right away I was going to get bald. It was only a few days later when I stood in front of my mirror with a scarf wrapped around my head to see what I would look like. My first instinct was to go with a wig. But after talking to the nurses and reading more about it online I figured it would be more comfy to wear a scarf. Then I met several people online rocking the wig and decided to change my opinion once more. I mean, why not try it all?

So today was my first appointment at a store specialised in wigs. It was weird. WEIRD. Trying them on, I wasn't sure whether to laugh or to cry. The girl helping me was very sweet but at some point I  looked like Anita Meijer. The plan is to go medium short and curly (my hair is now long and curly). The wigs they had were way too blond for me. Blond is not my colour. (It was obviously Marilyn Monroe's thing. I took the photo above in January this year for a movie star theme. I bought the wig on Ebay for 7 euro). So I'm thinking more brownish, warm, mocca, chestnut. But hey there was at least one that I sort of liked. So they are going to order it in several colours. They will also order a few more so I get to do another wig party. When I pick one out, they are going to cut my hair similar to the wig to prepare me for chemo. Yup nobody said it was easy. 

August 12, 2012

Everything is cancer

A few days after I was diagnosed with breast cancer I was taking a walk with my sister. People were staring at me. It felt as if the word 'cancer' was written on my forehead.

When the cashier at the grocery store wishes me a happy weekend I just cringe and want to get the hell out of there.

When a guy uses his car horn to impress me I just wanted to scream at him he won't be using that after I have turned into miss Baldy.

Everything is different now. Everything has a different meaning all of a sudden. But it's me who's changing and not the rest of the world. I am the one who's much more aware of everything happening around me. I notice things that I would not have noticed before.

Watching a romantic movie? The girl dies of leukemia. Looking out of the window? A woman wearing a scarf wrapped around her head passes by. Reading a magazine. Why is the one with Sylvie van der Vaart lying on top?

It was al there before this happend. It just never hit so close to home.

August 11, 2012

Underneath

Something must be wrong. There is nothing wrong. You're okay.

29/52 Underneath

But I can feel it crawl underneath my skin. It creeps and it crawls. I've got monsters living under my skin. It's a wilderness of despair up there. Oh what a tangled web they have woven. But they're not getting this soul of mine.

August 8, 2012

It's all happening

Today I found out I’m having surgery next week. So it’s all happening... The first step.

It’s not just the cancer that sucks. There’s a whole lot more to it. Genetics, do you really want to know? Infertility, temporarily or not? Without a crystal ball it’s almost impossible to make all these kind of decisions.

And then all of a sudden the hypochondriac inside of you has woken up as well. Every lump, pain or complain can now mean something. You no longer trust your own body. I used to be one of those people that went with my feelings, trusted my instinct. But I cannot depend on that anymore. It’s out of the window.

I am now living in a different world. A world that exists of chemo and radiation therapy. A world where people are sick and lose their hair. The future can no longer be taken for granted.