My chemo side effects. And top tips for managing them.

In the chemo chair. Each session took around 3 hours.

Everyone reacts to chemotherapy differently and there are so many different types of chemo. But here is how I experienced FEC - the famous Red Devil.

When I found out I needed to have chemotherapy, I scoured the internet for what to expect. It’s almost impossible to compare as no two people are the same but I know from talking to other cancer patients that my experience was quite similar to many. So here’s what happened to me.

My first chemo protocol was pretty hard core stuff. 3 months of a cocktail called FEC, which includes fluorouracil, epirubicin hydrochloride, and cyclophosphamide. It’s similar to AC, is given every three weeks, and features the famous ‘red devil’. It looks like aperol spritz and turns your pee red. Be warned - the nurses would be dressed in full hazmat suits to administer it, as it’s so toxic. It causes serious burns if you get it on your skin. Crazy that they pump it straight into your veins.

For me, chemo was administered through a port, which is embedded under your skin, under your collar bone. This was inserted by day surgery two days before my first infusion. Most often it connects into a vein which runs across your chest. In my case, directly into my jugular! (my chest vein was apparently too small). Over time, chemo can damage your veins, making them smaller and more fragile, so it’s worth having a port to make things easier.

The port surgery was done under local anaesthetic. It was more full on than I was mentally prepared for. There was so much else going on, I didn’t have time to mentally prepare for it. They literally strapped me to the operating table, and the surgeon was working away with a scalpel at my neck. It wasn’t painful but I was panicky. I wish I’d had some kind of sedative to help me relax!

Feeling rough. My brain couldn’t cope with much more than junk.

The chemo process would take around 3 hours so I would bring some easy reading, podcasts, TV and a few snacks. I was advised not to bring food that I really really love as it’s highly likely you’ll then associate it with chemo. Good advice! I’ll never eat a tuc biscuit or cheese sandwich ever again.

For me, side effects would kick in about 6 hours later, which is probably faster than most. I would get home, go for a little ‘chemo walk’, try to eat and drink something and then prepare for feeling sh!t.

I can honestly say I have never felt so ill in my life. For me, it was the nausea and vomiting. In spite of a lot of drugs to control it, I would always have breakthrough puking. And the headaches were pretty wild. Generally, I would feel ok (ish) in the mornings, and then get progressively worse as the afternoon wore on. I didn’t actually throw up that often - maybe 2 or 3 times each chemo - but I felt like I was at level 10 nausea a lot of the time. So for the first few days, I couldn’t do much, other than sit or lie still, staring at the walls.

The first chemo, I was so scared that that was how I would feel all the time!

But luckily, it’s relatively short lived. Days 1&2 after chemo were the worst for me. I tried to eat little and often. Just tiny mouthfuls. Sips of smoothies. Fizzy drinks. Anything to just keep a little bit of something in my tummy and stop me getting dehydrated. Any healthy eating goals were straight out of the window. It was just about getting something, anything, in.

By the end of day 3, I was starting to feel better. For the first few days, I couldn’t be around the smell of cooking, so only managed to eat cold food. And hid upstairs when my husband was making food for the kids so I didn’t smell anything. One day, he cooked fish fingers, and I thought I was going to die.

By the end of day 3, I could manage a small meal. My taste buds were different each time. One chemo I craved salty stuff - toast and marmite, tomato soup. The next round, the only thing I could face was mint choc chip ice cream and toast and nutella. In many ways, it was a lot like being pregnant. Eating little and often helped control the nausea. The cravings were weird and strong. I made myself a chemo snack box with a variety of options so I could choose whatever I fancied with no effort.

On my second round, I ended up back in hospital due to a weird racing heart thing and uncontrolled vomiting. After that, my doctor prescribed me a magic potion! It’s a drug normally used for schizophrenia, which also affects the dopamine receptors in your brain and helps you sleep. I was told it doesn’t work for everyone. But that even if you don’t stop vomiting, you probably won’t care! It helped me a lot.

One of the weird things about having chemo is that they just send you home from hospital to figure it out for yourself. It’s very strange the first round but I can also understand why. It totally depends how your body processes the drugs. Many people never feel sick at all. I knew I would as I’m like a car sick child - motion sickness, vertigo. But it’s not always the case. I know one 80 year old who hasn’t had any significant side effects at all. Generally, the support drugs these days are amazing. Top tip - never skip the anti nausea drugs, even if you think you feel ok.

Even on the days that I felt absolutely dreadful, I would drag myself out for a little walk. I designed a ‘chemo loop’ near my house. It was about 1km. On day 1, I’d do one lap. On day two, two laps. On day 3, 3 laps. My neighbours thought I was mad. This bald girl in pyjamas, dragging myself around in circles. But it helped! Fresh air, nature, a mission.

By day 4 of each round, I would be feeling OK again. I’d get up, get dressed, put some mascara on and make breakfast for the kids. I could go back to ‘normal’ mummy mode and would be able to manage a longer walk, eat proper food, and maybe do some gentle pilates.

On days 5 and 6, I’d try a little spin on the turbo. And by day 7, normal life would resume. I could jog, bike, climb again. Slowly! I had to be super careful not to get my heart rate too high or overdo it, though, as some chemo drugs can be toxic for your heart. This is different for everyone. On one occasion, I over-did it too soon. A slightly too fast run, too soon, meant a whole night, wide awake, with a worrying racing heart. I slowed it down after that. It scared me.

Back on the turbo on day 6. Slow and steady but good to feel ‘normal’

Food wise, once I was past the initial few days when getting any food in at all was the mission, I focused on eating really healthily. Balanced meals in small portions, supplemented with snacks every few hours. I found I couldn’t eat big portions and that eating six small meals a day helped control the breakthrough nausea. I also really upped my protein intake. My oncologist had advised me that my protein needs would go up during chemo and that it would also help prevent muscle loss. So I supplemented with protein powder and protein bars once or twice a day, to make sure I was getting enough.

I was also fastidious about oral hygiene. I did get some mouth sores, but they were mostly controlled and manageable. I never got to the point where eating and drinking were too painful. How? I used a baby toothbrush every day and changed it every week. I brushed with bicarbonate of soda. And used a special mouth wash, prescribed by my oncologist.

My hair? I chose to shave it before starting chemo. My pubes were the first to go. Followed by leg and arm hair. And then the hair on my head. In spite of having shaved it, I still got the weird prickly pain as the stubble fell out. So I wore soft chemo hats, even at night. As my head rubbing on the pillow would wake me up. Once it’s all gone, the weird pain stops.

I had my eyebrows tattooed before I started chemo. I am sooooooo glad I did. It made me feel normal and helped frame my face. If you have the opportunity, do it. My eyelashes just about hung in there until the end. And then they fell out, which was annoying. But it made me feel better that I could wear a little mascara.

Each chemo round got harder. On round three, I picked up a cold from the kids, which turned into pneumonia. And meant chest scans, lots of inhalers and two rounds of antibiotics. Luckily it wasn’t more serious, but I really could have done without it as a simple cold dragged on for six weeks and left me feeling exhausted from coughing all night. My advice! Wear a mask - especially around snotty kids, even at home.

Looking back, I realise how tired I was. But at the time, I just pushed through. I went to bed really early and needed nine hours sleep. If I did too much, I wouldn’t have enough in the tank for the kids. It was a balance.

Overall? It was hard. But it was way easier than I imagined. And the good days far outweighed the bad. I actually have some lovely memories of wonderful, quality time. My pace of life slowed down. I learnt to live in the moment and be more present. My social life also changed. I saw my friends for cake and slow walks in nature rather than always being hectic and on the go. Chemo changed my perspective on life - for the better.