Not long before I started a grueling two months of chemotherapy, I was given a long list of potential side effects that I might experience.
I don’t recall insomnia being on the list, but it ended up being an ongoing issue during my treatment.
Looking back, I’m sure there were several reasons I had trouble sleeping, which I’ll also discuss later in this article. One of the main culprits, however, turned out to be the corticosteroid dexamethasone.
Note: this article does not contain any information related to the use of dexamethasone in patients with COVID-19.
Waking in the night
Throughout my life, I’ve experienced insomnia to varying degrees. I often have what’s sometimes called sleep onset insomnia (it takes a long time to fall asleep).
My sleep was affected differently when I underwent chemotherapy though: I would fall asleep quite easily but then wake up in the middle of the night and have difficulty going back to sleep. This a form of insomnia that’s sometimes referred to as sleep maintenance insomnia.
Awake but not tired
I would typically fall asleep around 11 p.m. and wake up between 2 a.m. and 3 a.m. on many nights.
Strangely, I would feel totally awake and not at all sleepy or groggy. I’d then stay awake for between two and four hours, before eventually drifting off again – through sheer exhaustion I suspect.
Some of the other side effects I experienced (like nausea, tinnitus and low mood) were more worrying, so I didn’t seek much advice from the medical staff about my insomnia.
On reflection, I’ve come to realize there were probably several reasons I experienced insomnia during the treatment.
When I raised it with my oncologist, he suggested it was possibly due to the standard dose of the corticosteroid they were giving me to help with nausea. I think that’s only part of the story though, and there were probably other concurrent factors affecting my sleep.
As the medical staff suggested, I think the main contributor wasn’t just the chemo drugs (Bleomycin, Etoposide, and Cisplatin), but the corticosteroid dexamethasone.
A 2006 study of 60 patients found that 45% reported experiencing moderate-severe insomnia. However, the researchers noted that their study was not able to show if the dexamethasone was the direct cause of the sleep problems and other symptoms, or if it was the cancer treatment itself.
When my dose of dexamethasone was halved to see if my sleep would improve, it did seem to help. I don’t think it was a placebo effect, as they didn’t actually tell me about the change in dosage for a couple of days. I know it’s not conclusive proof, but it’s interesting nonetheless.
Another key factor for me was the level of anxiety, worry and fear that comes with having cancer.
I’d often find myself awake in the night ruminating, worrying about the treatment and my chances of survival. Anxiety and stress are known to cause or exacerbate sleep problems.
I developed tinnitus as a result of the chemotherapy, which was at its worst on the days I was receiving treatment.
I found the constant buzzing sound annoying, and it would keep me awake at times when it was particularly loud.
4. Disruption of sleep patterns
My normal routines and patterns were disrupted as I needed to go to bed and wake up at different times to take various tablets.
Keeping a stable sleep schedule is an important part of good sleep hygiene. So this disruption made it hard to sleep well.
5. Change to diet
It’s well known that chemotherapy can affect your appetite. Dexamethasone can also affect appetite, and in my case, I had unusually intense cravings for carbohydrates.
I’m sure my partner at the time must have wondered if I would ever stop asking for spaghetti for dinner!
6. Generally feeling bad
As anyone who goes through chemotherapy will know, you tend to feel unwell and just not quite yourself a lot of the time.
I believe this contributed to the sleep problems, as I would often wake up feeling pretty dreadful. I’d then find it difficult to distract myself from the sensation of discomfort I felt in my own skin.
Coping with the insomnia
Even when the dose of dexamethasone was reduced, I still had sleep problems and just tried to cope as best I could.
I tried to stay calm, and remind myself not to stress out when I had difficulty sleeping. I did simple breathing exercises to take my mind off any discomfort and help me relax.
I made a concerted effort to eat healthy food, avoid stimulants and heavy food in the evening. And I went out every day for some fresh air and daylight, even if it was just for a short walk in the park.
Essentially, I just tried to manage my insomnia the same way I would do if I wasn’t having chemotherapy.
Looking back, I don’t think there’s a lot more I could have done to improve my sleep other than taking me off the dexamethasone altogether.
I didn’t take any sleeping tablets, as I already felt up to the hilt in medication. So largely I just put up with it and tried to remember that I was going through all this to try to cure me of cancer.
And fortunately, I’m still all-clear ten years later. July 2021 marks a decade since my last treatment, so it’s a major milestone.
My advice to anyone experiencing sleep problems during chemotherapy is to talk it through with your oncologist. At the end of the day, there’s a reason they use it but they still might be able to help you with your sleep problems or other side effects.
I also recommend adopting good sleep habits in general, because every little bit does help. And work on the anxiety side of things using your support network and any other options available to you.
Have you been through, or are currently going through chemotherapy? Have you had problems with sleeping, and do you know what might have caused it?
Please share your story and thoughts in the comments below.
If you don’t feel like commenting, but are currently undergoing cancer treatment, I wish you the very best. Stay strong, and stay hopeful.