Top Tips for Chemo (Part 3)

Posted on by lauraricecake

Here are my final five top tips for chemo. To read the first ten, click here for Part 1 and click here for Part 2.

Track your symptoms but prepare for chaos

In theory, because chemo is given in cycles, it is possible to track your symptoms and work out how you will be feeling on day 1, day 5, day 10 etc. This is recommended as a way to see a pattern and thereby work out what you might be able to manage from one day to the next, maybe even to maintain a sense of normality.

This is all well and good, but the pattern I found was… there was no real pattern. Granted, I did feel worse a couple of days after chemo, and at my best the day before the next treatment. In the first couple of months I was fairly active, but this changed as the months went on and the effects became cumulative (see tip below).

I also found myself caught in an interminable, hellish side effect loop, where drugs to help the chemo side effects created more side effects, which led to more drugs and more side effects, and so it went on. A boredom loop ran alongside the side effect loop, which involved having absolutely no energy or concentration to stave off the boredom. People asked what I did with my days during chemo and I honestly don’t know, I existed in a drugged state.  

As the weeks went on, the steroids made me feel crazy, the injections to boost my white blood cells (necessary to ensure I could keep getting the chemo) made my bones ache, and both made sleep impossible. Keeping to a schedule felt ridiculous when battling the effects of steroids and filgrastim. I was constantly wired and tired, my body groaning under the constant attack.

You can spend a lot of time trying to make patterns out of ever-changing chaos, or you can (try to) accept that the pattern is chaos that will eventually come to an end.

The effects become cumulative – ask for a break when you need it

Several years ago, I walked the 38 miles from Keswick to Barrow in one day. It was a crazy thing to do, but it was a community fundraising event and I’m glad I did it. It went well, but when I got to the sign for the last mile, when 37 of the 38 miles had already been done, I burst into tears and said I couldn’t do it. I had nothing left in me to push through, one more mile seemed impossible. I would’ve happily just gone to bed then and there and did not care one jot about finishing. After a small rest, several snacks, and friends cheering me on, I eventually made it to the finish line, swearing that I would never do it again.

When I’d done 11 out of 12 chemo sessions I was physically and mentally exhausted. The effects of the drugs became cumulative and the steroids made me sad and weepy. I felt weak, vulnerable and exhausted from the relentless logistics, decision-making and drug-induced sleepless nights. Everyone was excited that I only had one more session to go, but I didn’t feel any sense of celebration. I felt like I’d been shot 11 times and I had to go in to be shot once more. I had nothing left.

I arrived for a blood test two days before my scheduled last session and sobbed uncontrollably in front of the whole chemo room. The nurses were kind and apologetic (“we’ve done this to you!”) and postponed my final session for a week, a week that ended up making all the difference. It was a few days without extra medication. A few more days for my body to gather strength. A few more days for me to mentally prepare. Although I didn’t feel ready for another chemo (who would), I felt strong enough to face it which was what mattered.

A break is an option. Not a well-advertised one (if I’d known I could postpone sessions I think I’d have postponed them all indefinitely…), but if you have a family event, a big birthday, a holiday, or you simply can’t take it anymore, you can ask for a break. Often a break won’t make any difference to the treatment outcome (especially in the later stages of a regime where the chemo is referred to as “mop-up chemo”).

Chemo is likely the biggest endurance test you’ll ever face. Your medical team are there to support you through it, so tell them you’re struggling and if a short break gives you the headspace to get back to it, take it.

Brace yourself for the emotional impact

Inevitably, when active treatment starts immediately, the trauma of a cancer diagnosis will not be processed. The treatment will then involve massive changes to your life, work, body image and relationships. You’ll live in a constant state of high stress, waiting for scan results, dealing with side effects, and being on alert for people harbouring germs that could result in a hospitalised infection. Then there’s the loneliness that comes with being surrounded by care, but the only one with cancer, and the isolation that results from shielding. I went into my own personal lockdown the minute that everyone else came out of the national ones, which bred jealously and resentment of loved ones living their lives.

Before my first treatment, the nurses talked through the list of potential side effects and one of them was “low mood”. I was sure it was the having to have chemo that would result in low mood, rather than the chemo itself. A few months later I felt furious when people told me to stay positive when the drugs I was taking listed “anxiety and low mood” as a primary side effect. Then the brain fog made me feel like I didn’t really know what was going on anymore.

Cancer treatment forms an emotionally-exhausting series of mini-traumas, that taken in isolation would each require significant processing time. Don’t be surprised if they catch up with you the moment you think ‘ah, I feel okay today, the sun is shining, and I have no appointments planned’.

Accept that cancer will take over your life*

In the days after my diagnosis, when I was a wounded animal clinging to my old life like you’d cling to an iceberg, I thought that cancer would be something I’d do on the side. An inconvenient extra-curricular that would slot in around my actual life.

I never anticipated that it would become my life. I hadn’t accounted for the emotional load, the processing time, the adrenaline, the nerves, the waiting, learning to be a nurse, a logistics manager, administer injections, take care of a wig, manage side effects, keep on top of all the appointments, deal with the total upheaval, the changes in work, changes in body image, brain fog, giving up independence and becoming dependent on others. I collected as many appointments in the first couple of months as I had in my entire lifetime before that. There certainly didn’t feel like time to maintain a job or a hobby or any semblance of a normal life.

Sometimes trying to be normal carried an extra sting because it reminded me of what I was missing on my drugged days. Things got better once I took the ‘pressure to be normal’ off and stopped pushing myself to do things that I didn’t have the energy or inclination for. After all, there is nothing normal about going through chemo in your twenties.

*and the lives of your loved ones.

Survive the chemo, then make lifestyle changes

The final few miles of a marathon are not the time to be trying a new route or energy drink or stretch or trainer. The final few miles are just head down and get through it, then focus on the recovery and what’s next. Chemo’s much the same.

People will start telling you about this thing that helped them, or this new diet that helped their friend, or how so-and-so meditated for hours and felt much better, and the thing is that you really have no capacity to try anything new right now. Chemo is an all-consuming rollercoaster and you’re clinging on (or not) for dear life.

Survive the chemo, then focus on healing and lifestyle changes. Don’t implement anything new while your whole system is in chaos, being both controlled and saved by drugs. Do whatever you need to do to get through it, then focus on the after when you get there.

I hope you never have to go through chemo, but if you do those are the fifteen top tips I’d offer. It’s tricky, because there’s no one size fits all, and everyone’s experience will be vastly different. I do think that enough commonalities between experiences exist though, meaning some of what I’ve written will be universal. Since you probably have information and advice coming out your ears right now, I’d also tell you to ignore all the tips and trust that you’ll figure it out as you go along.

In truth, I’m not really sure how anyone gets through chemo, but you do. In the words of the great Nelson Mandela, ‘it seems impossible until it’s done.’

Summary of the tips (clickable links):

2 thoughts on “Top Tips for Chemo (Part 3)”

Leave a reply to wildlifelass Cancel reply