#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

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2 thoughts on “#5 The Ugly Truth Diaries – First chemo”

  1. Thanks for sharing this. I’m wishing your mom all the best and hoping her reaction to chemo improves as she continues it; in the research I’ve done so far in terms of my mom, I’ve read that has happened for some people. I just emailed you as per my last comment and mentioned that there but wanted to add that here too, for any other readers going through this as well.

    Also wanted to highlight the opposite of the kind of stuff your aunt was saying: Craig Blower’s inspirational blog about his lung cancer has given me much hope; he’s been making great strides over the past 2 years in his own lung cancer which had spread to his brain at one point. His blog is at http://craigblower.wordpress.com/

    And Richard Bloch, a man who beat terminal lung cancer he was diagnosed with in 1978 and lived until 2004 (and when he died it was of natural causes not related to cancer); his foundation’s website is http://blochcancer.org/about/

    Thanks again for writing about what you and your mom are going through. I admire your strength sharing this, and it will be so helpful to me and others who are going through this too.

    1. Thank you for your support and the links to Craig Blower’s and Richard Bloch’s blogs. I’ll check them out soon. 🙂 I’m glad that my blog can be helpful for you and others although it’s just me trying to find a way to get rid of my thoughts and emotions. I hope you’re okay and that your mum’s having a good day too.

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