Frozen Toes and Sleepless Nights: The Reality of Being a Cancer Survivor

Frozen Toes and Sleepless Nights: The Reality of Being a Cancer Survivor
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For the past week, I have been living in what I can only describe as a state of unrelenting exhaustion. The main culprit: chronic insomnia. The impact on my body and mind has been debilitating.

Most of us have experienced sleepless nights. But for those of us who have been through cancer treatment, particularly aggressive chemotherapy, living with insomnia is a familiar and frustrating reality. At this point, I can’t even remember when my nightmare relationship with sleep began.

I have never been a good sleeper. I sleep incredibly lightly and have always struggled, even as a kid, to get a good night’s sleep. Combine this with getting sick, taking a range of sleep-inhibiting medications, chemotherapy, hormonal changes, body pain, and extreme temperature sensitivity, and my ability to sleep has completely deteriorated since my transplant last year.

I wrote in a previous column about my addiction to sleeping pills, and how being on holiday without them forced me to quit cold turkey. As challenging as that was, I felt like I had overcome my dependency on them, and for the first time in what seemed like forever, I was sleeping soundly without pharmaceutical assistance.

But back home in my London flat, without all the sunshine and the swimming to tire me out, the ease of getting a good night’s sleep was short-lived. Rebound insomnia quickly returned with a vengeance. I’ve felt like a walking zombie this week, surviving on just three or four hours of sleep a night. While my determination to stop taking medications means I’m committed to pushing through, it’s still tough.

My troubling relationship with sleep got me thinking about the other side effects we cancer survivors deal with, and the ways in which they continuously affect us. I think one of the most difficult things is accepting the long-term reality of some of the symptoms.

Often, these long-term symptoms aren’t serious enough that we feel it’s acceptable to complain about them. We don’t want to be someone who constantly goes on and on about their pain and problems. But the reality is that even when we appear to be healthy again, and everyone around us has all but forgotten about our diagnosis, we’re still dealing with bizarre, frustrating, and painful symptoms.

When I asked my fellow lymphomies about the long-term side effects they commonly experience, one that frequently came up was Raynaud’s disease. If you haven’t heard of Raynaud’s, perhaps you’re more familiar with its symptoms, which include extremely cold fingers or toes, color changes in the skin as a result of a lack of blood circulation, and numb or stinging pain when warming them up.

I noticed that I had Raynaud’s after my first cancer diagnosis, when I went through six months of ABVD chemotherapy. Back then, it wasn’t as severe as it has been now, post-transplant. Now when I’m cold, entire toes and fingers go completely white and numb, as if I have frostbite. It isn’t as painful for me as it is weird and uncomfortable. But for those living in especially cold climates, dealing with Raynaud’s can be burdensome.

Additionally, I’m hypersensitive to temperature. I become so cold, especially at night, that I must sleep with socks in the summer. I can’t fall asleep if I’m cold, yet I also struggle when it’s too hot. So, there I am, lying in bed, constantly pulling my clothes off and putting them on again. (I feel bad for my future partner!)

Other side effects common to lymphoma survivors are bone, joint, and muscle pain, and digestive issues. Before my transplant, I mostly could eat any food I liked. Nowadays, stomach pain, bloating, and irritable bowels are an everyday reality.

For cancer survivors, it often seems as if we’re constantly dealing with yet another symptom. Just when we think we have overcome one symptom, another ache or pain surfaces. It’s exhausting and infuriating. Additionally, it’s difficult to speak about because we feel guilty, as if we should be grateful to simply still be here, healthy and alive.

Yet that’s what I love about this community that we have created: We have a safe space to talk, express our concerns and frustrations, and simply vent to those who truly understand. It’s special.

I would love to hear more about the symptoms some of my fellow survivors have been experiencing since treatment. Please feel free to share your thoughts in the comments below, and don’t forget, you’re never alone!

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Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lymphoma.

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3 comments

  1. Jeff Shapiro says:

    The weirdest symptom I got after my first round of Rituxin was hypersensitivity when I would go swimming in the lake. This is a lake i grew up in and have swum in virtually my whole life. But as soon as I went in the water, my feet started to itch and turned bright red. As soon as i wiped off, the itching stopped. I’ve had 28 infusions over the last 3 years and while that response isn’t as bad, I still get some tingling when I first go in the water.

  2. ForwardObserver says:

    Welcome to the club. I’ve been called the poster boy for Agent Orange. 5 types of cancer at last count. I consider myself lucky. I got 50+ years of living that 58,000+ young men didn’t. I was very fortunate my entire life to have never been hospitalized. A childhood bout of polio did not result in paralysis, unlike my younger brother and sister. At 69, the first symptoms of non Hodgkin Lymphoma appeared. Night sweats, excruciating itching on the backs of my ankles. Hard boiled egg sized lesions surfaced on my forehead. After two years of chemo, it went into remission. Shortly thereafter, bladder cancer. Two years of chemo trying to save my bladder. One surgical scraping. A week later, a stroke. Finally, removal of the bladder which revealed a cancerous prostate. Two years later a renal mass removed summer 2020. Oh, and that large scar on my forehead? Skin cancer. I’ve experienced most if not all of the side effects mentioned in the article. You learn to adjust and accept. Staying active and exercising no matter how minimal is paramount. Perhaps my attitude would be different we’re this to have happened well before the twilight of my life. I can’t answer. I want to live!

  3. Pat says:

    Thank you for your courage to express and give a voice to what you have experienced with many who are in various stages of the journey.

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