April 14, 2017

The poison.

I know it may seem like a bizarre wish – but I wanted to lose my hair. In my mind, chemotherapy that was killing my abundant head of hair would surely really be giving it to that nasty cancer. So when my first oncologist told me that I would keep my hair, I was disappointed. Decidedly so. It was sold to me as some good news amongst the bad. But I didn’t want to keep my hair. I didn’t want to keep any cell in my body that might make the difference. Eyelashes, eyebrows – take them all.

When I met my second oncologist, the outlook for my beautiful blonde tresses took a dive. I was going to be placed on an enhanced chemo program. A triplet chemotherapy (three drugs) that are together called FOLFIRINOX, a regime that had demonstrated positive outcomes in patients with metastatic colorectal cancer. Life extending outcomes. And it would almost certainly take my hair out in the process. Excellent.

My chemo was going to be given to me via a port that would be installed in my chest. The port was fitted during a simple surgery, the day after my second colonoscopy (there was a lot of fasting that week!). A two centimetre incision was made to my chest, just above my right breast, and the small, triangular access point was placed under my skin. It has a soft top that can be easily tracked down by expert palpating fingers and ceremoniously jabbed by a needle. The port is wired via a catheter directly into a vein that delivers blood to my heart. Day to day, the port lives in my chest minding its own business. When I need to have blood drawn or drugs given, a long needle is inserted through the skin in my chest, straight into the port. The port is convenient and also saves the veins in my arm, both from regular needle attack, and the damage that the chemo drugs can have on the blood vessels in the arms and hands over time.

The chemo kicked off the day after the port was fitted. If I am honest, my body was feeling a little brutalised by this point. Fasting, colonoscopy prep, anaesthetic, colonoscopy, recovery, an express six hour food window, more fasting, more anaesthetic, surgery, more recovery. Nevertheless, I woke on Wednesday 29 March feeling so energised, so ready to get started. When I had made the switch to my new oncologist, I had expressly outlined my requirements: no change to my chemo kick off date. Of course, my new team had obliged.

This is chemo cycle one, and it runs on a fortnightly schedule for eight doses, or around four months of treatment. I start a treatment day by visiting my oncologist at his rooms, bright and early. Tim, my mum, Joshua and I arrive at the carpark around fifteen minutes before my appointment time to meet Tim’s parents, Joshua’s Nanna and Papa. Each time so far, Joshua has prepared a full nappy for us on the way. So dependably delightful. I mean it. These moments, with family, be they stinky or not, are so precious. My beautiful support crew change the nappy in the boot of one of our cars, handover the pram and the nappy bag and the food bag, and off Joshua goes for a perfect day out, while I set off for my favourite day in.

The review with the oncologist takes only a few minutes. He gives us the plan, updates us on any results that have been returned since our last visit, patiently re-listens to questions that I and we have already asked and provides precise answers that satisfy us – until we forget or consider another angle and ask again. Once we are satisfied, we head off to the Day Oncology ward at Epworth Eastern.

My chemo regime is a big ol’ dose of drugs, which means I am there for a long time. The longest time, actually – I have gone two from two so far as last drip standing, meaning I am getting as well acquainted with the cleaning crew as I am with the staff and volunteers. I have a nurse who is assigned to me for the duration of my treatment course, meaning we spend a lot of the day together as we progressively work through my pre-medications and chemo and peculiar drug reactions. I adore him. His laugh is infectious, his love for his work is clear and his care for his patients is dished out in abundance.

My pre-medications prepare my body for the onslaught of poison that chemotherapy delivers. And make no mistake: this stuff is toxic. The ferocious and merciless nature of drugs that are capable of wiping out cancer cells will inevitably take a run at other functions within the body. Six pre-medications in total attempt to handle side effects that include nausea, vomiting, diarrhoea, cramps, and other pleasant things.  In the scheme of chemotherapy as a treatment for cancer, these pre-medications are very new. From what I can understand, chemo was a significantly more horrendous experience prior to the advent of these good drugs that manage the bad (even better) drugs.

Chemotherapy affects different people in different ways. Many people suffer from fatigue. Despite the role of the pre-medications, many people still suffer from nausea and vomiting. And then there are a bundle of rare and random responses that can occur, depending on the particular chemo drugs you are taking. I have my own special set of reactions that are rather uncommon – in keeping with the ‘exceptional’ nature of my cancer experience!

The twitch. It developed slowly during my first experience of chemo. I felt it in the back of my legs, then it rose through my glutes and into my lower and then upper back. Before long, my arms, lips, eyes and throat were all twitching. Once it took hold, it was there to stay. My team found my nurse and he watched with what appeared to be both curiosity and careful evaluation as I described how it felt. I didn’t need to describe it really. It was very clear. What wasn’t immediately clear was why I was twitching – and there were quite a number of drugs to consider as culprit!

This peculiar twitch was made a little more disconcerting when mixed with a known (yet rare) side effect of the oxaliplatin, one of my chemo drugs: a tightening of my throat that made it difficult to swallow. Especially when I drank anything that was cold. Or even room temperature. My tongue felt swollen (it wasn’t) and I felt at risk of choking on it if I didn’t think carefully about the action of swallowing.

Enter the phenergan. Formally an anti-histamine, it also works well as a sedative. My chemo meds were paused as I was filled with phenergan, as a strategy to reduce the twitch. There was no obvious improvement, but I also didn’t get any worse. I finished my chemo course for the day and my oncologist stopped by to check out the twitch for himself. When he saw me, there was no hesitation: I was going to be staying overnight for observation.

When I announced my hospital stay via social media, many gorgeous, well-intentioned people expressed their sympathies for me. I love to read every thought and comment that people have for me. They fill me with such positivity. Yet, to be honest, there was nowhere else I would rather have been at that moment. I knew I was taking a rather potent combination of chemo drugs, and I wanted to keep taking them. Staying in hospital was a way to put everyone at ease, and keep me on my poison. I got to spend the night having a girly sleep over with my mumsy (including the obligatory midnight chats). And my twitch only lasted 12 hours. Piece of cake.

I left the hospital early the next day, with my ‘doggie bag’ of chemo: fluorouracil that is slowly pumped into my system over a 46 hour period. The pump was removed on Friday afternoon, and by Friday night, I was tired.



Saturday and Sunday were sleeping days. At times, it was difficult for me to differentiate between asleep and awake. On Saturday, I went without a shower. On Sunday, I thought about a shower for at least three hours before I opted to execute the walk up the stairs. At the landing, I turned left into my bedroom instead of right toward my bathroom. Another 30 minutes of rest was enough to get me prepped for a shower, and it felt great. And then I ate, and went back to sleep.

My appetite had deteriorated fast before my cancer diagnosis, but on chemo, it is raging. I eat like a champion every two hours. During my sleeping days, I need my team to pick food for me, because everything sounds mildly revolting. But once food is in front of me, I eat just about everything. As I ate and slept and each day passed, I felt better, less fatigued. By Monday I was walking around the park, and by Tuesday, around the block.

Another significant side effect of chemo is the increased risk of infection that occurs because of a reduction in white blood cell count. Neutrophils are the white blood cells that we all need to fight infection, and they, like many other ‘good cells’ within the body, can be attacked by the chemo. Febrile neutropenia – which is a fever and a low neutrophil count – is very common in chemo patients and can spell bad news. Any fever above 38 means immediate relocation to the hospital for a dose of antibiotics that fight any lurking infection. My team check my temperature multiple times a day, to stay on top of this risk. A couple of times, I felt a little shaky and warm, like I might be getting a cold. And then, on Tuesday 4 April, the fever hit me in a matter of minutes. Lying quietly on the couch at 8pm, I went from relaxed and comfortable to sweating and hot. My fever was 38.5 and my oncologist arranged a bed for me on the Epworth Eastern Oncology Ward within 10 minutes.

As it turns out, I just had a fever. No neutropenia. In fact, my neutrophil count was great. I had all the white cells I needed to fight an infection. Blood was taken and tests were performed in an attempt to pin-point the infection that had caused the fever. Could it be viral? Perhaps. There were definitely blood results to point to an infection, but in the words of my oncologist, “we couldn’t grow anything”. Antibiotics were delivered via my port and had the fever down in a very short time. Tim was with me; we drank tea and watched John Oliver. After one night on the ward, I felt good.

And then I realised I wasn’t going home yet. The course of antibiotics was to continue for two more days.

With my schedule dictated, I really had two options – begrudge, or benefit. Certainly, I was going to benefit. I took advantage of the opportunity to do the things that I knew were helping me and my fight; and in doing so, also helping the people around me.

A couple of weeks ago, my mum joked about the irony she faced in trying to teach me to be selfish. After 32 years of raising her baby to think about others, she now struggled to get me to just forget about everyone else and look after myself. I can’t do that. Not exclusively. But I know that making my head and my heart and my body as fit as possible is helping the people around me. So, feeling healthy and relaxed, I was able to fill my hospitalised days and nights with writing and family visits and walks in the park with Joshua. I got to know the oncology ward nurses. I avoided the hospital food as much as possible. I did two mini circuits of squats and lunges in my room. I listened to music and meditated and practiced mindfulness. And when it was time to go home, I was feeling great.



The rest of my week was wonderful. We ate fresh and fantastic food, stocked up Joshua’s winter wardrobe and hit the gym. On the eve of my second chemo treatment, Tim and I decided to treat ourselves to dinner at Coda, our favourite Melbourne restaurant. We sat at the bar and I drank a glass of champagne, and Tim a beer, and we just chatted and laughed and ate delicious food. It was perfect. I already knew I was going to be staying overnight after my second round of chemo, for more observation, and my mumsy was going to be my roommate. Because that is what great teams do – share the load.

On Wednesday morning, we met in the carpark, changed our nappy, passed our baby and visited my oncologist. We learned that we were adjusting my pre-medications as a strategy to overcome my twitch. And then we found out about the outcomes of my blood tests, taken the day before. My tumour markers were significantly reduced following my first chemo treatment. It was wonderful, positive news. We also had a deeper understanding of my cancer type, meaning we could augment my chemo with a targeted drug called bevacizumab. Now, we would be using the chemo to kill the existing tumours, and using the targeted treatment to block their blood supply, preventing future growth.

I arrived at Day Oncology and met my nursing ‘A team’. I ordered my GF chicken and avocado sandwich and put myself on the list for a free manicure (which, along with being a pampering perk of chemo time at the Epworth, is also recommended to protect nails from the same poison that attacks hair). Then I settled in for my six plus hours. Phenergan was one of the first pre-medications I was given, and it knocked me about significantly, far more than it had the fortnight before. My eyelids were so heavy. But I stayed awake – for a little while!

The chemo medications were unloaded into me. Eventually, my twitch returned. I notified the nursing team immediately and we paused and served me more phenergan. We caught the twitch much earlier this time, and we already knew I was staying overnight. We stabilised it and wrapped up the treatment; I ate soup in my room and we had our mummy daughter sleepover. Today, being Friday, I have had my take home chemo pump removed. Each time I complete a treatment, I feel a pang of loss. It feels pretty good to have the poison attached! Now, I will likely sleep for a couple of days. And then, back to my new normal of taking care of me and my people to the very best of my ability.

We need this chemo to work. It’s the first stage in our fight and we need it to change things. So far, the results are good. So next fortnight, we will do another baby swap. We will hear more blood test results. We will fill me with more poison and introduce me to my targeted drugs. And then we will deal with my side effects, paint my nails and have another sleepover. I cannot wait.

Nic x