June 21, 2016

First day of summer

I keep thinking I need to update.. but then I start reading my own blog. Page after page, words written by me. How those three years changed my entire life. How I handled things. A horror story. Yet written with humour and sarcasm. The medical facts, the struggles and the forgotten memories. Broken to the core. But hopeful and creative.

I'm just so thankful I started this blog almost four years ago now. It feels quite amazing reading, experiencing, looking back. It was such a long dark road.

I think it helps to heal. The road to recovery and remembering where you came from, it'll give new insights. Today. Matters. The here. The now.

I had my annual mammogram a few weeks ago. That feeling, that you'll never be able to shake this off, will start creeping and haunting you a couple of weeks before the date. Nervous Nellie here she comes. Sometimes I barely notice it but the tension in my entire body says enough. This time it was a little chaotic, new hospital wing, they were running late, long waiting hours.  But she called out my name and that is my cue. Strip down. And smash those boobies. They hurt me so much this time. The mammogram actually left me with several bruises on my breasts. It is such a fucking torture. They need to come up with something different here. We can go to Mars but not come up with a new boobie machine?! Anyway after waiting some more I got to go home and she told me everything looked fine! I just felt extremely tired that moment, I had a nagging headache. I was relieved but not happy. I think the tension builds up so much you need to get rid off it before you can feel happiness again. The next day I had another appointment with the mammacare nurse and she confirmed as well everything looked fine. The day after that I was able to finally feel happy again (and bought myself a new bag and ordered Chinese food yessss).

Work is going quite well for me. The short version is that I decided to jump (once more) and I started working as a secretary again. Same division, different building, different people. It was hard at first... but I think it helps me as well. I'm way more visible as a secretary, can not really hide behind anything anymore. I get to meet new people, I run into former colleagues.. people who know me and my story, people I don't know but know my story (well or so they think). It is a bit of a weird experience. All the responses you get. The super weird and sometimes very intimate questions. Sometimes it is hard and I'm freaked out about it.. but I'm also able to deal with it. I'm getting stronger. I enjoy spending time with colleagues, silly office humour, the teasing, the smiles... it is good for me.  It really helps picking up the pieces for a 'normal' everyday life. I enjoy working for my boss. To be able to assist him, to help other people by doing my job. It helps with the confidence to feel useful.

Today I talked to my psych.. about many things. We are now working towards closure. I will have a few more appointments and then in December we'll try to finish and have our last one. It feels good. It really does. I'm coming to terms with things. I have come so far, and I especially realize this when reading this blog. She complimented me on this as well, I have changed so much in the last few years. Slowly, slowly I'm getting there. Finding back old pieces and creating new stories. The glue is holding it all together.

I have a vacation coming up. Which feels a bit weird because when I had my last vacation, this thing all started and I did not come back for like three years. I hope I'll be able to enjoy it after a few days. Reintegrating is pretty exhausting and it should be good. Relax a little nervous Nellie.

I do have something special planned... which I'm definitely going to write about more. You see my eyebrows never grew back after chemo. Like 5 hairs... quite sad. I'm getting so sick of drawing them on my face every morning ugh. Sometimes I'm scared I'll smudge them or when walking in the rain they will fall off. Tough life. So... I found this amazing woman who does cosmetic and medical tattoos. And she is going to tattoo my eyebrows with this special 3D microblading technique. Apart from the radiation dots I have no other tattoos. So I'm really excited about this.. but also a bit nervous! I mean, come on it must hurt to have a tattoo in your face right?! But I'll be so happy afterwards, waking up in the morning with the perfect brows! Will keep you posted!

March 11, 2016

Life got in between

Hello there, remember me?! I wanted to write another update to tell you about my progress. Because I hate blogs that aren't updated anymore and you never know what happened to that person. I just hope one day, somebody reads this and feels a little less lonely. That my words or photos will mean something to just one person. That be enough.

When I started working again last year, at the same time one of my former bosses found out he was sick. A melanoma spread to his brain and lymph nodes. I was his secretary for about 4 years. So I sent him a card and in January I wrote him a long email. He wrote me one back and was so happy to hear from me. We chatted about our treatment, hopes, distraction, loving family/friends and photography. He knew he wasn't going to get better, but there were still lights of hope. He had surgery and was going to start immunotherapy... but it wasn't meant to be. He got partly paralysed because of a cerebral hemorrhage and died at home with his wife and twins. 

I really felt the need to be at his cremation. To be surrounded by people who knew him. I have been thinking about him a lot. Mostly happy memories of a secretary. The cremation was intense, sad and personal. Music was our 'thing' and we always talked a lot about concerts.. he even gave me a CD for my birthday once. So when I heard James Bay, Venice, Dotan & Coldplay... it was just perfect. 

Afterwards I went up to his wife who also spoke during the cremation. What a beautiful soul! What a gorgeous strong person. It's strange how people you barely know can touch your soul like that! Wow. I told her my name and she said her husband showed her my photo series of the Chemo Chronicles. She gave me a tight tight hug.. and she said, "But look at you now, you're still here.. you're still standing strong"... and at that moment I realized what the term 'survivors guilt' really means. But don't get me wrong I'm really really glad I went.  It was a powerful goodbye. 

I have slowly started to cut back on the antidepressants. Well at least one of them, the ones that are making me fat and hungry. I'm still taking the Citalopram, but I kept gaining weight on the Mirtazapine. I'm a vegetarian but I felt like I could eat an entire horse every night. It really got out of hand and it made me sad, which is exactly the opposite of what its suppose to do right?! I took a 1/2 pill for 3 weeks, and now I'm on 1/4 for the second week. I have had some withdrawal symptoms but I'm determined to quit this happy-but-fatty-pill. 

I have been seeing my physiotherapist twice a week. We are working on my muscles, strength, condition, balance, flexibility etc. It is hard work! He makes me sweat like a pig. 

I am currently working 5 hours on three days.. and I also work a couple of hours at home. It still is a struggle.. mostly the fatigue and joint pain. But I enjoy being among colleagues. People seem generally happy to see me, I still get hugs and kisses when they see me. I started working as a project assistant for a pretty big project and that is something I have always enjoyed. I'm still not sure what is going to happen to me, because I'm reintegrating and I don't have a permanent job, I'm surplus. But I try to not to worry about that, and have faith what will meant to be will be. Also I might have to work as secretary again.. and that feels like taking a step back. Being back at work you see people with new jobs, who have developed and educated themselves. I talked about this with my psych and what matters now is I will feel better about going back to work. Finding back my confidence, a daily rhythm. I am still young and I have plenty of time to find out what it is I really want. 

My company doctor. Oh my, don't get me started on this guy. He actually told me.. and I quote, "Compared to other people in your situation, I think you can't do anything." Are you fucking kidding me?! I was so pissed. I told him about how hard it was for me to look at the things I have achieved and that I am working every fucking single day to look at the positive things in my life instead of the things I have lost. I was really emotional but determined! In Dutch we say, die heb ik een poepie laten ruiken.. I kicked his ass! 

So from that point on my appointments are a little more pleasant. He actually gave me a compliment last time we spoke. Ha! So always, ALWAYS stand up for yourself... but also realize you never EVER have to apologize for the way you chose to survive. Don't abandon the person you used to be.. but carry her! Be brave, be strong!

December 7, 2015

This is her fight song

I have been back at work for about three months now. I'm currently working three mornings at the office and I'm planning on making some extra hours at home. It still is a struggle. There are times when I'm really happy to be back. To be a part of 'something'. Complain about the weather or the computers. We talk about pets, silly things.. office humor. But I'm struggling with the damage cancer left and the current side effects. The fatigue, the joint pain and the mood swings. I try not to let it rule my world. But I have to make it a part of my daily routine some how. Which is hard.

Yeah it IS hard. Sorry, but I'm not sorry for saying that out loud. My company doctor basically called me a 'pessimist' the other day. I don't really think he understands the power this disease can have over you. Our worlds are far appart.  And that's okay. But don't you sit there in your fucking chair and judge me. Because I've seen more dark places you can ever imagine. However we agreed to keep my working hours the same for the rest of the year. I need to find some sort of rhythm, balance, peace. JOY!

Today I saw my oncologist. He told me that because of recent research it is now proven I would have benefits (like +2%) from using the Tamoxifen for 10 years instead of 5. They're not quite sure about the Zoladex yet though. So it looks like me and 'menopause' are going to be together for... a long time. Tamoxifen is the first hormonal therapy medicine choice for postmenopausal women so of course this puts me at ease. But it's also quite a lot to take in. I think I'm going to focus on the first 5 years (it will be 2 in February 2016) and will deal with the rest when I have to.

I will leave you some links that I actually found pretty interesting and perhaps you will feel the same!
  • What’s it like to go through cancer treatment? You definitely must read this!
  • This designer was diagnosed with Stage 3 Hodgkin’s lymphoma at age 24, going through nine months of chemo and radiation before going into remission. She designed the cards she wishes she's received from friends and family. 
  • "Give yourself time to be sad, frustrated, and angry. Give yourself time to heal, accept, and to grow. Time doesn’t erase anything, but it can provide you with enough space to be able to breathe again. And then one day you wake up and your heart has a little bit of sunshine in it. And day by day people offer you pieces of their hearts to help remake your own. Allow yourself to be where you are at, to feel what you are feeling, and to experience everything that means. And during this process, look and listen for that glimmer of hope. It is there, I promise. And it is waiting for you to see it. Because one of the most beautiful things about humans is their capacity to heal, grow, and survive. Facing it. That is how you get through." - Jessica Jensen
  • If you want to spread some kindness but don't know where to begin, join the Card Bombers Anonymous and become a Kindness Ninja! 
  •  You MUST watch this if you need a little something to lift your spirit. Will make you cry, that's a promise! 

October 23, 2015

Let the river in

Let The River In

It's been a while since I picked up my Canon. Before I got sick I spent a fair amount of time working on my photography. I loved to create dreamy photographs with interesting themes. Topics that inspired me and got me out of my comfort zone. It was such a huge part of my life. So when I got sick.. and I mean really really sick - when going through chemo it helped me so much. It was my lifeguard. My outlet. My canvas. Those photos are still very personal and intimate to me. You can view the series here: Chemo Chronicles.

During recovery I reached a point where I couldn't watch myself in any photographs, creative or snapshot. It was just all way too confronting. All I could see was the pain. The destruction.

Autumn Light & Love

Recovery is a process. Not a day goes by I'm not working hard on healing my body, mind and soul. And that's a tough thing to do. It's exhausting. I get angry at times, I feel lonely sometimes. But I keep climbing that mountain because I want to reach the top and enjoy the view.

So even though I already felt exhausted.. today I picked up my camera and went on a photowalk. I forgot what that was like... nature, me, muddy shoes, putting your tripod in dog shit, things like that. Deep fresh breathe of air. The birds. The sun light. The silence. Although I'm not completely comfortable in my body right now (I've gained some weight because of the Tamoxifen AND the anti-depressants) I took these photos like I used to. And I think they mean a lot.

They stand for healing. Acceptance. Let that river in. Go with the flow.  

Soon The Sun Will Rise

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.

September 1, 2015

The real world

I think it is time for me to write a little update and tell you I took another big step. Big as in huge. I went back to work. Can you believe it?! A year ago the thought of work alone would have me breaking down and now I'm doing it.

I am living on my own and I'm working. I am becoming whole. I'm part of this world, this society, again. I'm not stuck in a parallel universe any longer. Does that sound strange?

So I have been talking to my company doctor a lot and I will keep this short, unlike my company doctor who likes to draw and make up silly stories that are kinda pointless. But oh well, we are on the same page in the end and that is what matters. He told me to go back to work for 2 x 2 hours. Which might seem nothing to you, but I have been gone for three years!

Sometimes it feels like someone screwed up my time line. So much has happened. The worst years of my life. And now *poof* I'm here. Back at work. Back at home.

I was really REALLY nervous about going back to work, but at the same time I realize it is a big part of my recovery. I can not predict the future, I don't know how many hours I will be able to work. I don't  even know if I'm able to work full-time. But who cares, really. I'm back baby. People at work have been really sweet. My boss has been incredibly understanding and super sweet as well. But still I can not help but feel overwhelmed by the whole thing. I am having a hard time adjusting and I can not really concentrate all that well. But I know I need to give it some more time.

My company doc told me I do need a goal. So we decided my goal is to work 20 hours by January 2016. Which sounds pretty fair. Then we'll have another chat with my boss and we'll see what else is possible. Because of my treatment and the Tamoxifen and Zoladex I still have some health issues (menopause, joint pain, fatigue, etc) but I hope they won't get any worse. I also gained weight because of the anti-depressants. Which makes me feel sad (how ironic). But I guess it's better to feel happy with a few extra pounds than to be thin and depressed. Ha.

P.S. Check out my profile pic, I can officially wear a messy bun now! YAY! 

June 21, 2015

(En)joy!

Summer has officially started and it's raining cats and dogs. So I'm on my laptop, listening to some music while staring out of the window. I'm home.

I have been back at my place for about three months now and although I still have crappy days... it feels good to be able to take care of myself.

I actually feel like I have been able to really 'enjoy' things. Fresh flowers on the  balcony or in my home. Saturday movie nights with the bunnies. Simple walks through my neighbourhood or bike rides to the farmer's market. Shopping and lunch dates with my sister. The birds checking out the new birdhouse on my balcony. Getting another haircut. Cooking and trying new recipes. Talking to my bestie from High school who I had not spoken to in over ten years! Doing yoga with my Tara Styles DVDs. Restyling my home and finding a new coffee table while thrifting. Having my retired colleague over for a visit. And of course there's always a creative craft project to work on!

I still feel very fragile and vulnerable though. I'm easily swept of my feet by other people's thoughts or cancer related news on the TV. But hey, I have been through a lot and I'm okay, even though sometimes I'm not. Life doesn't have to be perfect to be wonderful. Sometimes your heart needs more time to understand what your brain already knows. So lets be patient with ourselves. Embrace ourselves and the strange things that make our weird big heart happy. Stop comparing ourselves to other people. We are all beautiful and unique.

I also had my annual check-up which is always a nerve-wrecking thing. I get nervous and come up with these horrible scenarios about three weeks before the actual mammogram date. But I went in, chin up.. smashed boobies afterwards... and I was told everything looked fine. So that was quite a relieve as you can imagine and I celebrated with ice cream and cake. My treat.

I try to remember myself we have no control over the future. Later is now. We really do not need a lot to be happy. A kind word, sincerity, fresh air, clean water, your health, flowers, books to read, furry paws, a cozy home and to love and be loved. Joy must be the most magnetic force in the universe.

March 31, 2015

Leap...

"Leap and the net will appear." -John Burroughs
I did it!

I really did it.

One of my biggest goals for this year was to move back home into my own apartment together with my bunnies. After living with my parents for two years, the support they gave me... I have no words for that. I will be forever and ever grateful for that. They were next to me with every step I had to take.

Despite me moving out and oh my god it was very emotional... for everybody. It was the right move. The right time. Spontaneous and crazy. But I have changed and I know now, the net is there when I need it. I love my family. This whole disease has changed our ties. The connection I feel, the love, the warmth. It heals me. We cry, we laugh, we hold hands.

I've lost a lot because of cancer and I know I still have a long way to go. But I finally feel like I'm rebuilding my wings. I also know that every single emotion I felt or went through.. it had to be felt. Exactly like that. Because I have to work through it... in order to move on. The people that are no longer in my life... well that is fine. I don't need them. I'd rather surround myself with people who actually support me and inspire me.

This thing will always, always be a part of me. But finally... there is light. Love and light. And wounds are healing. Body, mind & soul. I have planted a seed and it's going to grow and bloom. There will still be bad days. Depressing stormy rainy days... but they will pass.

I think I'm finally benefiting from the anti-depressants and the Mindfulness training I went to... it all lead to taking this step forward. So we keep moving forward... because that's the way it works. Climbing the mountain... while running into some bumps every now and then. 

So here's to spring & new beginnings.

March 7, 2015

I have a thing for lists

+ I had 5 sessions of the Mindfulness training so far and it has been good! I'm so glad I took the big jump and went for it. I love the meditations techniques, the way how it's actually a lifestyle. It changes your perspective, even though it's hard and it goes very slowly. But this is something that is close to my heart. Definitely. I can recommend it. Whether you've dealt with cancer or not, depression or anxiety or stress at work.. or simply feel the need to take a deep breath. Check it out!

+ I spent a couple of afternoons at my own place. Watching TV, drinking tea, a walking meditation through the neighbourhood, rearranging my livingroom. AND I even brought the bunnies with me twice! It was so cute and emotional and it brought back so many memories. I love these sweet fur babies. Hopping through the house, finding back their old favourite spots. Next step: spending a night in my own bed. My psychiatrist told me that I still have some mourning to do, but there's only one place where I can do this and that is my home. I guess that makes sense and all. So it is not going to be easy, but eventually things will get better and I hope to feel more confident about myself.

+ I am trying to get of the couch and set new goals. So I went to the Kröller-Müller Museum with my dad and saw work of Picasso, Monet and Van Gogh! I was nervous and tired... but I did it. I also went to this children's farm/petting zoo with my parents. Hey never too old for these things. I refuse to grow up especially when I hug a goat. It was wonderful! I love animals! We also went to this beautiful protected nature area for a windy walk and it was good. Fresh air!

+ Another thing that was really important to me was visiting my friend who had just given birth to a beautiful baby girl. I was really looking forward to seeing her and her first daughter as well. So cute! So it was good talking to her and I had a lovely afternoon with lots of smiles. 

+ I also had one of my favourite little visitors coming over, my colleague's son. Who is just adorable and we played on the ground and had fun. 

+ I also celebrated Lola's 5th birthday. Can you believe it? Furbabies, they grow up so faaast! 

- The bad stuff. I'm still struggling with my anti-depressants. I am now using a mix of Citalopram and Mirtazapine and the side effects for the last four weeks have been awful. I did lots and lots of crying. I have been feeling like crap. Emotional, vulnerable, scared. I'm meeting with my psychiatrist next week so I'm hoping it either goes better by then and otherwise we have to talk about our next step. Perhaps I need to take a break from meds because I'm so tired. But this scares me as well, because I really could use some 'help' with the big steps in recovery I still have to take. We'll see, we'll see. 

+ I'd like to finish with something positive. At Mindfulness training we had to keep a list of positive things that happened during the day for a week. Because we often remember the bad stuff and neglect the good happy tiny pleasures in our life. I actually felt really good about this and decided to go on with it. I found a wonderful app called Gratitude356. Practising gratitude has been scientifically proven! You can check it out here if you're interested. Give it a try!

January 23, 2015

What is Mindfulness

You could call it awareness, attention, focus or presence. Mindfulness has roots in Buddhist philosophy and religion which I find very interesting and fascinating. But it also takes on a new, secular definition when viewed from a Western psychology view finder.

Or as the famous Dr. Jon Kabat-zinn defines it, you can think of mindfulness as simply being fully in the moment, paying attention on purpose, in the present moment, non-judgemental.

Sound simple? It's not. Being engaged 100% doesn't come easy, especially in our world of distractions. It means actively listening and not zoning out (even a little) when your co-worker tells the same story for the third time, and it means using all your senses in even mundane situations like washing the dishes or waiting at the bus stop.

So what's the point? Well the benefits sound pretty amazing actually:

+ Mindfulness is good for our bodies: A seminal study found that, after just eight weeks of training, practising mindfulness meditation boosts our immune system’s ability to fight off illness.

+ Mindfulness is good for our minds: Several studies have found that mindfulness increases positive emotions while reducing negative emotions and stress. Several studies in fighting depression and preventing relapse.

+ Mindfulness changes our brains: Research has found that it increases density of gray matter in brain regions linked to learning, memory, emotion regulation, and empathy.

+ Mindfulness helps us focus: Studies suggest that mindfulness helps us tune out distractions and improves our memory and attention skills.

+ Mindfulness helps people with PTSD: Studies suggest it can reduce the symptoms of Post Traumatic Stress Disorder in the aftermath of a traumatic happening.

Here are a few key components of practising mindfulness that Thich Nhat Hanh, Jon Kabat-Zinn and others identify:
  • Pay close attention to your breathing, especially when you’re feeling intense emotions.
  • Notice—really notice—what you’re sensing in a given moment, the sights, sounds, and smells that ordinarily slip by without reaching your conscious awareness.
  • Recognize that your thoughts and emotions are fleeting and do not define you, an insight that can free you from negative thought patterns.
  • Tune into your body’s physical sensations, from the water hitting your skin in the shower to the way your body rests in your office chair.
If you're interested in reading more you should definitely check out Thich Nhat Hanh and Jon Kabat-Zinn books written on Mindfulness.

I have decided to jump (with a heavy nervous heart)... but I'm going to be part of a Mindfulness training. It's organised by the psychology department in my hospital... so I will be familiar with the surroundings. But I'm very nervous about the whole thing. However I do think, this type of thing fits me and I could really benefit from it. I will start next week Wednesday.

So let's take a deep breath...