It’s Chemo Day, the 4th cycle of AC. Not only that but it’s the last chemo day! I’m actually quite excited! Even the cherry blossoms bloomed to help us celebrate.

We head into the infusion unit and it’s really busy today. None of my usual nurses are there and there is no sign of Bx or KS who have both been a great help through these treatments. I’ve brought a little thank you present for the staff but with the lack of familiar faces I decide to hold off gifting it and bring it back another time. After all it’s not like it’s my last visit to the hospital.

Chemo goes smoothly as usual. I’m hyper aware of the changes that happen during the infusions now. The Red Devil’s familiar awful taste is immediate. We have coffee and split a giant ginger cookie but the metallic chemo taste even undercuts that.

We play our usual chess game. It’s the best game I’ve played so far I think. At one point I have a nice attack going and I take Susannah’s Queen unexpectedly. Shit, she exclaims loudly. Then, Oh sorry, to the neighbouring patients. No, don’t worry, says the lady next to us, We are all quite invested in the game now!  I can almost tell when the infusion drugs affect my brain and my concentration and decision making abilities decline. The game eventually goes to Susannah but I almost had her. Really, I did. Results of the Great Chemo Chess Tournament: Susannah 7, Me 1

When we are finished  we leave quietly. Looking around everyone is busy so I we wave general goodbyes and slip out the door. It almost an anti-climax. But it’s done.

Later in the day I think over the side effects of chemo that I have experienced:

• Brain Fog: this is for me by far the most annoying side effect. I am extremely forgetful; my short term memory is horrendous. I lose words and have trouble making simple decisions. I haven’t worked since diagnosis and think if I did I would hazardous (I work in banking). I don’t trust my mind anymore.
• Mood swings: Oh yes – this one is very important as I didn’t make the connection. I’d recommend getting your partner, carer, helper to look out and monitor this as the drugs can be altered to help. The depression is awful (if you’ve read this far you’ll know!) I wish we’d figured this one out earlier.
• Menopause: I was perimenopause before all this so still getting periods. Chemo put a quick stop to this and also chucked me deep into menopause. Periods stopped immediately and I now have horrific hot flashes everyday. It’s worse at night when I literally sweat head to toe and play the constant game of duvet on, duvet off. I use a handheld Japanese folding fan during the daytime to help keep me cool.
• Insomnia: I rarely sleep well. On and for about 5 days after chemo I take a sleeping pill (zopiclone). It usually helps. Other days I take amtryptilene to relax me. At one point I needed 2 pills at night. I also sometimes use Andrew Johnsons Sleep meditation apps on my iPhone. He at least gets me to sleep for a crucial 3-4 hours which helps.
• Fatigue; It’s constant. Even on my good days I feel a level of fatigue. On bad days I nap a lot. It’s not just physical though, it’s mental and emotional. I find even socialising will wipe me out afterwards. 
• Diarrhoea and Constipation: I put these together as it seems to be a cycle of one then the other. I have IBS anyway so this just made it 100% worse adding in the constipation which is drug related. There are a lot of options here. Natural things that helped are Kiwi Crush, fruit smoothies, Juice, cereal, brown rice. There’s also a few drug options in pill, liquid and powder form but I’ve struggled to get the dosage and timing right so the constipation doesn’t swing too far the other way.
• Blurry and altered vision: My eyesight has generally deteriorated. I will wait to see an optometrist as it may improve a little. I also have blurry or cloudy periods where it is like looking through a sheet of cling wrap. It’s worse in the morning, at night or when I’m really tired. Lots of blinking helps.
• Hair loss: Lost all my head hair, eyebrows, some eyelashes, and some body hair. It started to grow back, when I paused chemo for surgery, but is now falling out again.
• Nausea: I coped well on Paclitaxel but not so well on AC, probably because it’s stronger and also because the effects are accumulative. The meds are really good though so I have stuck to the program and taken them as prescribed. I’ve only thrown up once and I’m not even sure if that was completely because of chemo.
• Reflux: I wake up with it and go to bed with it so it seems worse when lying down. There’s a pill and it works. If I don’t take it and don’t sleep I just feel sick all night.
• Dizziness: My blood pressure decided to do aerobics and had me worried for awhile but has settled down – today’s reading at chemo was 120/90. I do get a bit dizzy standing up and sometimes walking but I suspect that will pass as the chemo drug exits my body.
• Neuropathy in my feet: I had some damaged nerves on the left from my back injury so it’s hard to tell how much is from chemo. My right foot runs several degrees colder than my left foot and doesn’t seem to warm up even with thick socks. That’s new. I also possibly have a wee bit of neuropathy in my hands as well as I can’t hold things as well as before and I struggle with delicate things.
• Nosebleeds: I had a few while on Paclitaxel – my nostrils were very dry and the smaller vessels broke a few times. They were nothing major though and I had no issues on AC.
• Black toenails: 3 all on the left foot. They haven’t fallen off and they don’t hurt. I’ve just been clipping them short and they are growing out so that’s ok.

Despite all of this, I feel I got off fairly lightly and coped well with just few changes of meds and attitude adjustments. I tried to concentrate on the bigger picture and the why of what I was doing. And for the big question, if I knew exactly what it was going to be like and had a choice would I do it again? Yes, without a doubt, even though the first rounds didn’t work for me. The most important piece of advice I have is for you to be your own advocate – let your Oncologist and the Oncology Nurses know of any changes, any concerns you have. They are there to help you and to get you the best outcome possible with the least impact on you.

And on that note, a HUGE thank you to all the staff in the Rongoa Marie Infusion Unit at North Shore hospital and to my Oncology team; you’ve all been amazing and made the whole process so much easier than it could’ve been. 

I appreciate you.