what does it feel like to have cancer

Someone again recently asked me how it feels to have cancer. I offered my usual  brief answer that it depends on where it is and a lot of other factors, but I couldn’t stop thinking about the question and the actual answer.

When I had my first round with breast cancer, where it started in my left breast, I had no sense of feeling of cancer being in my body. Most of the symptoms I experienced with breast cancer the first time around had to do with the treatment: the surgery, radiation and chemotherapy. The last results of the treatment were long-term fatigue and chemo brain that took forever to dissipate.

When metastasis occurred in the bone in my spine, pain was the first and overwhelming sign that something was going on. The pain was excruciating and debilitating. Until my diagnosis, agonizing pain was the only new sensation that I could identify. I don’t know that I could have even felt pain or anything else in any other part of my body because the pain was so intense. By the time of my diagnosis on January 28, 2009, and immediate admission to the hospital for surgery, I hardly realized that my toes were numb. The pain after surgery was like nothing compared to what I had been dealing with before the surgery. Then came the radiation to my back. They administered the beams from four positions that circled front to back in an effort to reduce the tumor further. I definitely felt the effects of the radiation as it went through my stomach; nausea started after about ten treatments. The skin on my back burned, of course, and this was complicated by the back brace I wore all the time. To help the skin heal, I had to lie down without the brace as much as possible. I was still working at that time, and it was a bit of a challenge trying to deal with all of it. I remember that even after the radiation treatments ended, the back burn continued to worsen for about a week before it started to heal.

Then came the chemo, and that lasted until early 2010. I suppose that with all that severe treatment, it was not really possible to feel the effects of the cancer so much as the treatment. The most constant reminder for a while was my stiff and inflexible back. The surgery not only removed tumor and repaired vertebrae damaged by the cancer’s osteolytic and osteoblastic lesions, it added about two feet of titanium bars to support the weakened vertebrae. Even after I stopped wearing the brace all the time, after over a year, I could feel that my back was different. It always feels strange and very stiff. Because of dancing for so long, especially modern and jazz, my back was very flexible. I could sit on the floor and lie flat over my extended legs or kneel and bend backwards till my upper back was on the floor. Neither position was difficult. Now, I am unable to bend in any direction. I don’t attempt to bend since my spine surgeon advised that a lot of movement in the spine could cause the metal pins to loosen, and that was something he advised against. By the same token I can feel the stiffness from the bars in my back so that I don’t think I could bend if I even wanted to try. That sensation is always with me, limiting my movement in a way that at times feels so constrained as to be exhausting. Walking comes with effort as it seems like the stiffness in my back somehow interferes with the fluidity of the pelvic movement during walking.

I would say the overwhelming sensation now is a constant fatigue. It never diminishes significantly. And, as of the last month or two I feel a constant strange sensation in my ribs that I can only describe as discomfort. I get muscle spasms in the ribs that sometimes take my breath away; it feels like those times I pulled a muscle in the intercostal muscles and it hurt to breathe. I don’t always have nausea or diarrhea from my treatments, but I often wake up with a mild case for no apparent reason. I have random pain. I have neuropathy in my toes and fingers. Often I feel just not right. It’s like I can feel something is at odds in my body though it’s a feeling that is not concentrated anywhere in particular. It’s like I can feel my body is under attack; it’s the only way I can describe it. I know that I never wake up without some kind of symptom or sensation that reminds me something is awry in my body. I miss waking up with the feeling that I can conquer the world.

Most important, I avoid thinking about this alien inside me trying to overcome my body’s best defenses. Doing what I love and staying busy, no matter what kind of energy I have at that moment, is the best remedy for distracting me. Despite the pain or discomfort, I always have something to keep me occupied. That is a blessing.

I suppose this would rather exhaustively answer the question, what does it feel like to have cancer.

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© 2004–2012 Donna Peach. All rights reserved.

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14 responses to “what does it feel like to have cancer

  1. When I think of how it feels to have cancer it makes me angry. I was diagnosed with stage 4 breast cancer in 2010. Now with it metastasis in the bones, I wonder if all the treatments I am getting now are really worth it. Then I receive your Blog via email and think of how strong you are. I am a fighter and each time I read your blogs I want to fight more. I feel the pain you have and find strength to carry on. So thank you for being there.

  2. It’s a good description. That question is hard to answer, because of course cancer is so individual in both presentation and responsiveness to treatment that what is true for one is completely unimaginable for another – a friend of mine had cancer that took her with lung and brain mets, but she never experienced the pain that is my constant companion. On the other hand, she experienced a level of fatigue on a long term basis that I only felt during one specific treatment.

    That said, it’s helpful to hear from other people in the cancer club, because by using a sort of pick-and-choose process we can at least get some idea of what we are likely to be facing, and sometimes get help in dealing with certain issues (side effects, pain relief, etc) by getting advice from others who have gone through similar experiences.

    What we do have in common, I think, is certain concerns for family and friends, and certain emotions that center around our prognosis and our treatment/doctors. And boy, is it helpful to get those things off our chest, knowing that the people we are talking to will understand and not judge!!

    xoxoxoxoxoxoxoxox

  3. Donna this is a really provocative question and I’m sort of heartened to hear that people have actually asked you. I feel like its a question that people might want to ask but feel it would be inappropriate to do so – I don’t think so.

    I often liken living with metastatic cancer to being in a metaphorical prison from which there is likely no parole. I find the relentless regimens of treatment, dr appointments, scans and tests, side effects etc, to be quite suffocating at times. Often I feel like every decision of every day is dictated by my cancer. I so relish my off chemo weeks where I can at least feel halfway human and o things that I love to do. But it’s a constant mind battle to keep moving forward aside from the physical side effects. Like you I have constant physical reminders any time of the day – for me it is the loss of the use of my left hand and the associated nerve pain and challenges a one handed existence presents.

    But like you, and countless others somehow we find a way to just keep on keeping on, but it’s certainly not the life I would wish on my worst enemies

  4. It’s amazing that you’ve been asked that question. I think most people are too afraid to ask and don’t really want to know. I remember feeling like I’d been invaded by an alien life form, and waiting for Ripley to come along and fight it off for me.

    Thank you for attempting to answer. I don’t have mets, but I have reminders every day – pain, fatigue, loss of mobility, fear of recurrence. Is that what it feels like to have cancer? That’s what treatment feels like. As far as cancer itself, It’s an ever-present, lurking threat.

  5. I am so sorry you have had to endure this terrible disease. But I was interested to read your story because my sister has just been diagnosed with cancer – not breast – and is beginning preparations for chemo. Her son did not cancel the birthday celebration he had planned for her on the 14th, so I am going to OK (weather permitting) and your answer gives me an insight into what you went through, although hers may be different. Love you, and many wishes for the best. I am full of admiration for you, and you are an encouragement to everyone. Earlene

  6. What a powerful and sobering answer! Thank you so much for sharing. I might answer on my blog, too — I will, of course, lead my readers to YOU as the originator of the thread!

    Be well,
    Jacki

  7. Donna, Such a simple question that doesn’t get asked very often for a wide variety of reasons. Living with side effects from the treatment of cancer presents a real challenge doesn’t it? I’m sorry you have such limited motion, fatigue and discomfort. I’m sure there are many more challenges as well. Thank you for sharing a little bit about what it’s like to have cancer from your point of view.

  8. Pingback: my Breast Cancer blog » Blog Archive » What Does Cancer Feel Like? (PART I)

  9. Hi there i was alone except hubby and pets
    no family cared at all! very sad…….at least i can say how i feel
    and how others treat me and im a stranger here
    i do like poetry and write poems also
    take care, Wanda

  10. Pingback: Becoming a corpse; sensibility, vulnerability, subjectivation. | attempts at living

  11. Wow Donna, thanks for saying it like it is. Reading reality makes reality easier to manage. I also wake up every morning not knowing which of a myriad of symptoms will assail me which I cannot talk about because I’m asked/told ” you’re being looked after now aren’t you?”. I beat fatigue by doing the best bits! I save myself for the people and stuff I love. It’s the way forward.

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  13. You’ve been through so much! Thanks for sharing your story! I’m six years out and feeling weird again and very tired. I wonder what’s going on. Curious as to your first experience with BC and then the mets appearing. How long between one and the other?

  14. thanks for sharing, I am a male, have/had? breast cancer, had surgery, chemotherapy, and, recently, done 25 rounds of radiation; so many side effects, what an ordeal. wishing everyone battling cancer, all the best

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