Tag Archives: TUTD

#11 Sometimes, it’s okay to think of the children too

It’s raining outside and the clouds are floating rapidly above my head, swirling and twisting into a different shape before they carry on and forget about me watching them. And I think: I feel so much like that cloud.

I’m pushed and pulled towards an unknown destination, constantly reshaping and changing and never staying the same. I’m angry and upset and alone. I’m a volcano, ready to erupt the moment someone steps on my toe and then I burst into tears and I yell uncharactistically and deflate. Empty and alone again. And then I think: why do I bother?

Why do I bother to care and give and tire myself out when no one truly cares about me? When there’s no one there, here, to listen? When there’s no one spreading their arms and wrap them around me? When there’s no one to hold me while I sob?

I love my mum, my family and my friends and it warms my heart there are so, so, so many people thinking of her, supporting her, sending her unexpected but so much appreciated flowers and cards; but at the same time, it hurts because no one thinks about the people who have to watch all this sadness from a very close position.

When I go outside, everyone is all about: how’s your mum? And I reply: she’s okay. Fine considering. While I think: if only you knew the pain she’s in but I don’t want to tell that because that would make the conversation awkward. What would you say to that? I hope she feels better soon? Well, yeah, me too. And then those people continue: it’s really sad how many people die of cancer before the age of sixty.

Wait.
What?
STOP.
This is NOT why I got outside for!

I reply (rather coldly may I add): well, people have always died whether they’re young or old because of cancer or not. It just happens. And they keep talking and talking about cancer as if that’s the ONLY topic they can talk about with me. As if I don’t hear about cancer every day. In every conversation. With each person I come in contact with. At least twenty times a day.

That’s where I crack. People mean well by asking about my mum and I understand they have a need to say something about cancer but then they move on and leave me standing on my own: one huge emotional volcano waiting to burst as soon as I get home and spending my night curled in bed crying because I am hurt, scared and alone and wished someone would ask, after they asked about my mum and talked about their general cancer topic and have ripped my heart out and taken all my positive thoughts away: but how are you feeling? How are you coping?

The idea of losing my mum hurts so much that I can’t breathe. It makes me physically and emotionally sick. If I were to lose my mum today, the most important person in my life would never experience the mile steps in my life: she’d never meet my future husband, she’d never be at the wedding, she’d never see my house nor meet my children. She wouldn’t be there when I’d be needing her the most.

I don’t have a significant other half to pour my feelings on. I don’t want to burden my feelings upon my mum or dad either because they already have a lot to deal with. But where they find support from me, my brother, my family and all our acquaintances there’s no one out there giving me words of support during my worst moments in all of this. When I have a tough moment, I have to deal with my depressing thoughts on my own and it hurts to be alone during this.

I wish people would look beyond the obvious and think about this more broadly. When there’s cancer in a family, the children (whether adults or not) are affected too. Reach out to them, give them a supportive hug, hold them.

Because they need it too.

#10 The Ugly Truth Diaries – Writing101: Serially Lost

Cancer is a sneaky bastard. It lurks, waits and then strikes when you least expect it. Not once, not twice but all the time. Even when you know that parasite is playing house in someone’s body, it can still take you by surprise. It forces you to revalue your life. Especially when the strongest person in your world stands before you. Weak. Trembling. Pale. Mouth covered in sick. Hairless.

And that’s when I realise: I can’t do anything to make her feel better. A sense of lost rips apart my heart and I try hard, really hard, not to cry it out in emotional pain. My view of life has been tested before but my automatic view of the role I play in relation to my mum, has forever changed. She used to be the one to comfort me and be strong but now the roles have been swapped. The young woman from last June is forever gone.

It’s been another rough week and an outsider wouldn’t have been able to notice how much things have changed since I’ve been back from Rome. Past the walls of our home, I try not to talk about my mum. People ask about her but I return their questions with ambiguous answers. I don’t want to tell the truth because the truth is ugly.

The truth is: my mum slept for five days after her hospitalisation, barely able to wake up long enough to eat.

The truth is: my mum can’t eat anymore because her oesophagus has been temporarily damaged by the radiation.

The truth is: my mum cries when she tries to eat because it hurts so much.

The truth is: my mum gags the moment that little bit of food touches her stomach, as if something’s burning deep inside. Which it most likely is.

The truth is: my mum can barely (and not even that at most time) hold back her medicine to protect her oesophagus and stomach.

The truth is: right before I typed all of this, I was in the bathroom with my mum grasping the sink as if her life depended on it. She gagged and threw up all her dinner in a time range of ten minutes. And she stood there, so weak and sad and sick that all I could do, was hand her that glass of water to rinse her mouth and rub her back. All I could do, was help her to the shower and get rid of that dirty, empty feeling.

She’s lost over 7 kg in the past week and all I can think of is that tomorrow will be another day and it will happen all over again. The chemo is working. The radiation, although done now, is still doing its job. It’s the reason why she feels miserable. It’s the reason why she can’t eat.

Her final chemo session is nearing but I truly hope that she can start to eat soon. Although her blood values were good on Monday (6,000) I fear that if she can’t have a good week before her next session, it might be postponed.

The end is near but it feels farther away than ever.

#9 The Ugly Truth Diaries – Third chemo session

I’m back from Rome and a lot of things have happened while I was there. The obvious, indulging myself with Roman culture, and the not so obvious events will be talked about in a different post so keep an eye out if you want to read about my adventure in Rome (handy tips included if you’re visiting soon!).

Being gone while my mum had her last week of radiation therapy, was not easy. I missed her so much but being away for a few days helped to release the stress that was taking over my health. I finally got some rest (and some nice, hot weather after a month of typical Belgian rain). However, relaxing lasted until Thursday.

That’s when I received a phone call from my mum. She had her blood tested on Thursday to see if she’d have enough WBC (=white blood cells) in order to start her third chemo therapy on Monday. Unfortunately, her count was 900. Too low. Chemo therapy delayed. Another slap in the face. She needed 1,500 minimum. Although postponing the therapy isn’t necessarily a very bad thing, for the success of the therapy it is recommended that everything can continue the way it’s planned. But emotionally, let’s just say it’s a lot tougher to hear it’s delayed because a thousand different questions go immediately through your head: how long will it be delayed? A week? Do we really have to go through this a week longer? Won’t the delay give the tumor time to grow? Or adapt? Can tumors adapt to the therapy? 

Of course, this news had its effect on me while I was in Rome.

When I woke up the next day, I wanted to go home. I wasn’t interested in Rome anymore. I wanted to be with my mum and hug her. I was in the worst mood ever and I feel sorry for my cousin, having to undergo this but I didn’t care about the Colosseum or the many shops we could visit. I wanted to be home. And it was too hot anyway. But when I heard her on the phone again later that day and that she was resting a lot, I felt better. If only just a bit. She also mentioned that she had to return to the hospital on Monday for one more radiation and that they would test her blood again.

I came back home last night around 2am. I had just enough time to hug my mum, tell her about the crappy flight (it got delayed) and then went to bed because I knew she had to get up early (and so did I, back to work I’m afraid). By the time I was up, she was gone with my dad. Around lunch time I received a phone call: her WBC were 4,000+. She immediately had to stay today for her chemo and thankfully, she was prepared for this scenario. Although I’m truly relieved that the therapy didn’t have to be postponed, I’m also sad that I won’t be able to talk to my mum properly for the next few days.

I don’t have time to visit her in hospital because I have to work until 6.30pm and by the time I’d get to the hospital, visiting hours will be almost over. I also know she’s not really up for visitors while she’s there, the chemo taking its toll on her body (and will continue doing so for at least a week). I miss her and I want to talk to her about Rome. I want to hug her so badly.

But, I should be grateful that everything continues as planned and while I wrote this I remembered another particular phone call in Rome. Sometime during August, my mum had another PET-scan as preparation for the radiation therapy and then they had noticed that my mum’s tumor had shrunken after her first chemo therapy. This is super good news and had me so excited!!

Perhaps there’s still hope that this nightmare will be over soon but I won’t get myself overjoyed too much. We still have a while to go but the light at the end of the tunnel is getting brighter as we near it.

Until the next post!

Fien

#8 The Ugly Truth Diaries – Clovers & Letters

“If this therapy doesn’t bring any changes to my cancer, then I don’t want another one.”

Those words are hunting me. Hurting me. Upsetting me. And they show how tough the last couple of days have been. My mum isn’t well. Her therapy is going great so far but her spirit to fight is gone. Although I know she’s a strong person in the end, she’s someone who’s easily depressed by the slightest obstacle when fighting a battle that seems lost to her.

Swallowing has become difficult now that they’re combining chemo with radiation. Her blood pressure varies each hour, going from extremely high to normal, back to too high and then to too low. It makes her dizzy. Her stomach is upset with the chemo that’s still in her body from last week’s treatment and the radiation makes each day a very long and tiring day. Going twice a day to Ghent easily takes up 4-6 hours. 168km a day. That makes it 20-30h in a hospital and 840km a week. And this multiplied by three.

So of course that would make her tired. And I understand that it does, but hearing those words today, ripped my heart out of my chest and now it feels as if whatever I’m doing is so pointless. Reading a book doesn’t inspire me. Writing takes too much effort. Even opening the laptop is becoming a pain because there’s no energy left.

And yet, when all seemed lost in our despair, we received a nice and beautiful card from someone we didn’t expect it. It contained a beautiful letter with such supportive words that I can’t not mention it. Inside this card, there was something wrapped in paper.

Fragile.

We unwrapped it carefully, curious to find out what it could be, and there it was. It was green and a symbol of luck: our own freshly plucked four-leaf clover.

It made me smile and describing how warm it made me feel inside wouldn’t do it justice. To know someone was out there, thinking of us and willing to take time to write a letter and find that lucky clover is beyond words. I’m so thankful for this gesture because it means so much. It means the world. I know today will be a dark day but tomorrow is a new start. So thank you to everyone who sent us flowers, cards and emails or tweeted me with support. Know it’s been appreciated and they helped us to go through dark days like today.

If you know someone with cancer, send them a little letter or a note. It doesn’t matter what you say as long as it’s truthful and that you’re thinking of them. Because that’s all that matters.

It’s heart warming to know we don’t have to be alone to carry this burden.

So thank you.

#7 The Ugly Truth Diaries – Losing hope

Today, they took away our hope.

I can’t breathe. My hands are shaking and I feel dizzy. I’m losing  control, I’m losing my hope. I panic. It feels as if someone’s pushing a cloth against my mouth, as if someone’s pressing a hand upon my chest and I scream but there’s no sound. I kick but I don’t get free. I’ve been pretending to be strong for everyone but I’ve been struggling to cope since last Thursday, a worry slowly building inside my chest.

Being yelled at on the phone by a client (we work in the construction sector) because of something I couldn’t do anything about, shattered me. She called me rude and unfriendly while I apologised multiple times for the delay. Told her I’d be able to give more information this week but she wouldn’t accept it. Something stupid as that, something so ridiculous, has knocked me down and ever since then, I haven’t been able to crawl back from that thought that I don’t matter and I’m just one piece of shit trying to please everyone’s life but getting nothing in return.

I know that’s selfish. I know but – and don’t get this wrong – everyone’s asking about my mum and she gets all the support one needs going through this and of course everyone cares about her, I wouldn’t want it any other way – but I suffer too. I’m scared that I will lose my mum and end up alone without my best friend. I’m the one who tries to motivate her, listens to her and hold her when she cries, be with her 24/7. Staying positive for everyone all the time, is exhausting. I sleep 3h a night and even then, I wake up in cold sweat, hyperventilating. Everything hurts. I’m stressed but the moment someone sees me, they don’t ask “how are you dealing with this?” but “how’s your mum?” and I don’t mind but I could use a hug too. I could use someone to listen to me too. I could use a shoulder to cry on too. And if they do ask how I’m doing, they don’t expect me to say “Crap. I can’t deal with this anymore.”, they expect me to say “Okay. Fine. Considering.” because I’m not entitled to feel crap. I’m not the one with cancer. I’m the one who should stay positive and help my mum out as much as I possible can.

And it is okay for them not asking because my mum deserves all the support in the entire world. But it’s just…I’m feeling desperate and alone and crap and it’s killing me ever since that woman yelled at me and told I was unkind and rude (while I never yelled and only tried to reason with her). I don’t think I deserved this.

And it makes me wonder: if people are allowed to yell for something as stupid as a screen blocking flies from getting inside her house being delayed by one little week; then I’m bloody well allowed to stab her with a knife and tell her to shut the fuck up and get a life. Seriously though, where has respect gone these days? I deal with people like her every single day. What makes them so special that they are allowed to yell at me? Call me names?

So with that being said, this is how I’ve been feeling since Thursday. Yesterday, I got a panic attack during work. I couldn’t breathe, I couldn’t think. I shut down. My mum’s started to lose her hair now and I knew this would be a difficult moment. It hurts to see this happening. It just hurts and I can only imagine how it must feel for her.

Today, she had to go back to hospital for blood samples and see if she can start another chemo session on Monday. Luckily, she can. There’s not a problem. However, the oncologist-nurse started talking about something; an evil word was mentioned: palliative care. Our world fell apart. Palliative? She’s not dying. They told us she isn’t. Why, why, WHY say this?! WHAT IS GOING ON?!

It’s for research. If they could follow her up perhaps. But she’s not dying? Why would she need palliative care then? It’s confusing and it hurts and right now, I could be sick just by the idea of her dying. I don’t understand. My mum’s hope is completely gone. She’s pale and I am panicking. How can I interpret this? What did the nurse really mean? Did we miss something valuable? Did we not hear them say: we are going for total cure? Did they really say: “I’m sorry but curing is not an option, she’s dying.” and we totally misheard this?

So I try to cheer her up, like I’ve been doing for over a month now. We have been worried about next week when the toughest part of the treatment will begin and watching her lose all hope now, is  upsetting. So while I deal with her emotions, I push mine away again.

As soon as I’m alone, I sob and crave a pair of arms holding me, comforting me. I need someone to tell me it’s going to be okay even if it might not because I’m so, so, so alone. There’s no one here I can talk to, no one that cares because those who care (my mum and dad) don’t need to see me like this. I’m their positive rock they’re leaning on at the moment but I can’t do this anymore.

I’m tired. So tired.

#6 The Ugly Truth Diaries – Finding light in the darkness

Sometimes it’s hard to believe that something is wrong; when everything seems fine and we are able to smile. It’s that moment when we believe everything will be fine and we can conquer the world. It’s a time of laughter and happiness and for a moment, all’s forgotten, even if that moment only lasts one entire second.

Then, something little and insignificant can crush that feeling and it feels like a fist gripping your heart, pulling at it. It becomes difficult to breathe and when I look at her there’s that dark thought. It’s a whisper first but the more I try to ignore it, the louder it becomes. It makes my heart beat faster and tears to well up in my eyes and it’s stupid, so very stupid to let this thought rule me for that moment but I can’t help it. It’s consuming me. I have to look away. I have to do something.

But it won’t go away.

It’s that fear that if I don’t look enough at her now, I will regret it for the rest of my life. If I don’t talk to her now, I’ll miss all my conversations we could have held. What if I don’t hug her now, it could have been my hundredth hug before I get to ninety-nine? As if, for that entire thought, my mind has come up with the idea that even though everything seems fine now, who can honestly say that she’ll get through this? What if she’s secretly dying in reality but we can’t see it yet?

She starts coughing and my eyes are immediately drawn to the sound and if I were a cat, my ears would twitch with the sound while I determine the severity of this cough. It doesn’t stop. Should we call a doctor? Are we over reacting? So we call, the conversation lasts ten minutes. That’s all but we feel better, comforted and the next day, the cough is gone.

The fear isn’t.

I can see it in the way her eyes don’t shine and how her smile doesn’t reach it’s natural height. I see it in the way she holds her head down and how weak her voice sounds. She’s giving up today and it scares me. It makes me want to hold her, makes me want to comfort her and tell her everything will be fine. I’d do anything so I talk to her, ask her what’s on her mind but she doesn’t say. Not really. But I know it’s that consuming thought I’ve had the previous day so I try to cheer her up.

I’m quickly learning to enjoy each moment while it lasts. When she’s feeling good, we enjoy it to the max and when she’s feeling down or ill, I try to find that twinkle in her eyes, reminding her that up until now, it could have been worse. She’s here with us, with my hand soothing her back while I talk about silly insignificant things that has made me happy in the past twenty-four hours and I see her relax.

This journey is all about finding the positivity in the tiniest things. If it’s not throwing up, then so be it. If it’s her being able to get outside for a few minutes to enjoy the nice weather, then that’s great. It’s not always easy to find those moments and acknowledge them for what they are but it’s important to find them now because it can all change within the hour.

I started writing this at 6am in the morning after I couldn’t sleep and in the meantime, my mum’s woken up and the cough is back. Yesterday was amazing (morning and evening, afternoon not so much) but now we’re back to reality, hoping that this cough won’t turn into a cold.

I hug her and think: hug one hundred-and-one or hug ninety-nine?

#5 The Ugly Truth Diaries – First chemo

Day 27.

I’m exhausted and if I’m this tired then I can only imagine what my mum must be going through from this week’s chemo. Monday was the big day. Nervous about everything, we headed towards Ghent at 7am. Not much was said in the car or while we waited. Our eyes connected with patients sitting in front of us in the waiting room and I wondered: do they also have cancer or are they lucky enough to escape this mess? I hope it’s the latter. For their own sake. I had to swallow back tears.

We had a meeting with a doctor first (not ours, she’s on holiday) discussing what we could expect but nothing prepared us for that day. The nurses were so kind once we arrived at the lung disease’s ward, giving us time to adjust to the room and settle down. By 10 am, my mum was in her bed and the first fluids were given to protect her kidneys while we waited for her chemo to arrive. Once it did, she received medication (strong medication against throwing up and trying to keep the nausea as low as possible + cortisone) and around lunch, it was time.

The nurse put on gloves. There was a bag covering the chemo so we couldn’t see it. It was all rather intimidating and official and scary. It was clear that this was a toxin. My mum winked. I tried to smile but the tears were clouding my vision. The idea of chemo, hurts. I don’t want it to touch her blood. I don’t want her to feel sick. I don’t want her to lose her hair. This is my mum. My rock. My everything. Leave her alone!

Three long hours. That’s how long it took for the first chemo to pass through her veins. And then they needed to rinse. This took about 15 minutes. Honestly, we thought it was over but then the male nurse from the afternoon shift (whom I honestly love because he’s so kind and funny and was the first person who made me smile that day!) came with another bag of chemo. Our spirits plummeted below zero. Another hour of chemo. Oh, my beautiful and strong mum 😦

It was around 4.30pm that the chemo had officially ended for the day and we could breathe again. But then the rinsing started and after three hours, another bag of fluids to help my mum get rid of those chemical toxins inside her body. Apparently, the chemo destroys the cancer cells of the tumor and this leaves her body via the natural way. So drinking water is necessary! They kept a close eye on her temperature and weight because if she didn’t get rid of the fluids, they’d have to give her extra medication. It has to leave the body! It’s very important and dangerous for the kidneys if it doesn’t leave.

At 8pm, one of the hardest thing in my life happened. This may sound dramatic but that’s how it felt. We had to leave her behind and it hurt so much to see her miserable and nauseous while we left for home, to our own beds, knowing she had still six hours to go with the fluids. Closing that door, watching her cry, broke my heart. The knife-twisting-inside-the-heart-and-taking-it-out-with-a-spoon kind of pain. Oh mum. I’m not supposed to be home without you. It’s not natural. I cried too. And I cried silently on our drive back home. I really could have used a hug then but my father and I, we don’t hug.

Needless to say, by the time we had dinner our appetite was gone. And then my aunt dropped by. Talking about her sister who had died of cancer. Although I appreciate her story, her telling us how serious lung cancer is and that, in fact, her sister died because of lung cancer in the end, almost made me shout: SHUT THE FUCK UP. Because, I don’t want to hear this. I need my hope. I want my mum back. This is going to work. SO SHUT UP. But I stayed calm, smiled sadly, looked away and swallowed the tears away. But it was said and it echoed in my head. The damage was done. My heart had dropped, breathing hurt and before I knew it, I was crying. Again. And when I found my mum’s note saying “I love you both. Mum xxx” – well, I couldn’t hold it any longer. I kept texting her, asking how it was going. It was such a long, long night.

By the time we arrived at the hospital the next day, it was 1.30pm (a full hour before visiting hour) and my mum had changed rooms. Everything was so chaotic that day. My mum received visits from the psychologist, social assistant and oncology-nurse, all giving us extra information about what to expect. I’m pretty sure that our heads exploded at one point and all we seem to be doing lately is argue what time which appointment was because we can’t remember it! The good thing, however, was that my mum was allowed to go home after her chemo (one hour chemo + rinsing) but we had to be back the next day at 9.45am for an MR scan and even more chemo.

She was tired when we got home. She immediately fell asleep but she complained how sick she felt. An instant thought flashed through my head: I wish I could take your nassau so you’d feel better. I would throw up for her if I could. I was scared she’d throw up. She needs to keep her food down if she wants to stay strong and they explained to us the dangers of her getting ill (besides the cancer). We have to monitor her temperature every day to make sure she doesn’t get a fever. If that’s the case, we have to get an appointment with our GP immediately so she can get antibiotics. If her white blood cells are too low, chemo therapy will be denied and delayed. Never a good sign. And if we’re ill, we’ll have to wear a mouth cloth whenever we’re around her so she can’t get sick.

Once we were back in the hospital on Wednesday, everything happened all over again, besides the MR which took forever. They started the chemo again (has to be given around the same time, every time) around lunch time, but it leaked. What a panic it caused! We were immediately pushed aside by the nurses and they came rushing in with all kinds of protection (gloves and aprons) and then they were discussing if they had to order a new bag of chemo because there was some amount lost and if it would hurt but that meant another hour added to the already long list of hours at the hospital. Fortunately, it hadn’t been much, so they could continue the treatment.

And then finally, FINALLY, we could go home without having to be back for a full four days. Oh the bliss.

My mum is tired now, sleeping a lot and being dizzy. The chemo and medication makes it difficult for her to concentrate and come up with words, so speaking is slow and she is hoarse. I assume this is from the chemo and medication, stress and tiredness. She has the idea that she can smell and taste chemo all the time (which I don’t doubt) and she’s come to the point that the thought of chemo makes her feel momentarily ill. Life at home has changed a lot too. She has to flush the toilet twice and whenever we wash our hands, we have to use anti-bacterial gel too to make sure my dad and I don’t get in touch with the chemo. I need hand cream now and it’s not even winter!

Our next appointment is on Saturday to get her head measured for a wig. We have decided to not go to a local hair dresser’s but made an appointment with someone 20km away. I think my mum doesn’t want anyone around here to know that she’ll be wearing a wig soon. It’s going to be hard enough without anyone pointing it out and gossiping about it. And then we’ll be back in hospital on Monday for blood tests, some kind of armour preparation for radiation and Tuesday another PET to see what the chemo did with the tumor. By then, I have to go back to work and I really don’t look forward going back. I don’t care anymore.

We are now anxiously awaiting whether or not my mum has a brain tumor and if the chemo worked. When we’ll hear about those results, I don’t know. But we’re sure it won’t be next week.

Previous posts:

#1: Raw Emotions
#2: A Battle of Morality
#3: Daily Night Demons
#4: All Things Medical