I’ve been wondering what I would say to someone if they asked me what the worst part of having cancer is. I mean, I complain about everything related to my disease — nothing about it is pleasant. Ok, maybe the wonderful people I’ve met, but that’s about it.
I realize that it isn’t a specific thing or event that makes the cancer experience so bad for me. And of course I can only speak as an early-stager.
Let’s talk about chemo, for example. For me, chemo was not a walk in the park, but it was doable. I had some challenging side effects. Some days were better than others. There were times I felt so ill, I was not sure if I would survive the treatment. These chemicals are heavy on our bodies. For instance, I remember the terrible constipation that went on for weeks at a time because of Adriamycin – the worst constipation you can imagine. I wondered if I was going to lose my intestines. Eventually all this trial came to an end. But even after all this suffering, this is not the worst part of having cancer.
And what about radiation. Well, that wasn’t too bad compared to chemo. The most annoying thing was having to be at my hospital everyday for 21 consecutive days. The burns caused by the radiation were not pleasant but eventually the skin healed. I have to say though that, emotionally, radiation was worse for me than chemo. There was something about that machine shooting an invisible laser, and me not being able to move while being watched by an entire hospital staff staring coldly from behind a window that made me feel… subjugated. And yet, this is not the worst part of having cancer.
Let’s talk Tamoxifen. I know some patients have a better experience on this pill than others. I am not a happy camper when it comes to Tamoxifen, which I’ve been taking for almost 5 years now. My moods are all over the place. I experience pains everywhere. I often feel like an old lady. My intimacy is suffering a lot. I have to continually check my uterus to make sure the pill isn’t causing a secondary cancer. I am unable to build a family while I am taking this medication. At times — every day, really — I want to stop taking it, but I am afraid to. I know that eventually this treatment will come to an end. Perhaps this is why being on Tamoxifen is not the worst part about having cancer.
And it isn’t even the follow-up appointments and the anxiety I experience a lot of times in my life due to my diagnosis. And it’s not the relationships I’ve lost due to the different life I now live.
So what’s the worst part about having cancer?
For me, the worst part of having cancer is the fact that no matter how many treatments I’ve completed and how many times I’ve had NED (no evidence of disease) results, I am never really done with it. I always feel like cancer is watching me. Forever.
I’ve experienced some bad things in my life before. I believe I’ve overcame those things. When I think of those experiences today, I look back and say “damn, that was painful! But I am glad it’s over now”. I can’t say that with cancer though. True, it’s a great feeling not having to do those heavy treatments anymore, but the ghost that is cancer never leaves my life completely. I have to involve cancer in every decision I make. And because of this, every decision feels heavy, making my life more complicated to live.
Although I am done with chemo and radiation, I still need to be on a pill to help keep my cancer at bay. And after I am done with Tamoxifen, there’s another pill I may need to take. I will always need to be seen by an oncologist. Scans will never end for me. The fear that cancer will come back is always in the back of my head because there’s no cure for it, regardless of how early you ‘catch it’. No matter how many times I get good results at the doctor’s office, I am not completely done. And yes, I do embrace those moments when I receive good news about my health. Until the next time. And the next time.
Absolutely. I agree with you. We have lost the certainty that most people who are healthy don’t even realize they have. They never have to wonder when they might stop existing – they just exist. It is a sword that always dangles above your head (this image of the sword comes from mythology – look up the story of Damocles). My therapist, who is a cancer survivor herself, told me that eventually you get used to it being there. I’m getting there. Maybe I will always be “getting there.” Some days are easier than others. Know that those who go through it will always understand. Xoxo
Oh how I miss my denial! I believe that is my biggest loss. I am not sure we are able to stick to one identity or place of belonging. I find that survivorship forces me to bounce back and forth a lot. In a way, I’ve gotten used to the idea that this is the best I can do considering my difficult circumstances. But like you said, some days are easier than others. It feels good to be understood. xo
The worst part of cancer is the loss of innocence, no matter if you are stage 2 or stage 4 like me, the whole world shifts and you feel like you are living in a parallel universe to healthy people. You have been handed a time bomb and regardless of where you are, who you are with, whether you are happy or sad, the new soundtrack to your life is an incessant ticking. I used to have such a big life, and now you have to adjust to a new normal. Most people have no idea how impossibly difficult it is living with a disease that will steal your life.
Hi Andrea, you described it perfectly. I also appreciate the acknowledgement that it doesn’t matter what stage we are, it still feels like a ticking bomb. I agree the majority of people don’t get it, until they face it (or know someone closely who has). I am sorry you’re dealing with stage 4. I hope you get the best possible outcome with your treatments. xo
I can relate pink sister. Well said. It never ends. I see my oncologist on June 1.
I wish you good luck with your upcoming appt.! Hoping for good results. xo
it must take a lot of guts to write about these – big hugs
In a way, I’ve also lost a sense of shame. xo
🙂 you have done amazing telling these and others in your posts. I have great respect for those touched by cancer directly or indirectly (like caregivers or family members/friends) mostly because I can understand to some degree their ordeals, feelings, and experiences only because they tell us… I think this enables us to be more aware of this disease and develop empathy. thanks to you and thousands of others out there that share their experiences. many thanks for this. cheers!
Thank you for your kind words, my friend. I appreciate your stories/reflections too.
I feel the same -beautifully written! I had to switch from taking letrizole to tamoxifen due to my estradial number being high for someone my age-I am having terrible mood swings from it and llke you are afraid to stop taking it.. Thank you for sharing!
Jane, I can imagine the fear of switching meds. We don’t know what surprises we’re going to get. I am driving my guy crazy with my mood swings. He usually asks questions to make sure I mean what I say. And in many cases I just warn him, “it’s my Tamox talking! Let it talk.” I am planning on taking a break from it this year. Good luck with Tamox. I hope the side effects are to a minimum.
Rebecca, I totally get it. I was an early stager, too, but cancer is like the Sword of Damocles over my head. The psychological impact, such as the intense fear factor, is upsetting to say the least. I understand why you are conflicted about Tamoxifen. I took Aromasin, and although I was afraid to stop the medication, I had to because I was essentially crippled. It was a relief to be taken off this medication by my oncologist, but at the same time I knew I was putting myself at a disadvantage by not taking the medication.
Oh, and I totally relate to the constipation during chemo. My gosh. Worst ever.
All you can do is live one day at a time. Savor the moments. I’m sorry we all joined a club we never wanted to belong to.
Hi Beth, I am not sure people (and even some doctors) really understand the aftermath of cancer, both psychologically and physically. I recall you mentioning you had stopped taking the pill and I am glad you continue to do well without it. It’s encouraging for those of us who want to take the same route. I am still traumatized by the constipation caused by chemo. The worst side effect I experienced for sure! And you’re right, all we can do is live one day at a time. There’s no easier way. xo
I feel for you, being diagnosed so young. That really sucks. I was diagnosed this year at 45, just short of the magic 50. I think I have it in my head that if I can make it to 50, everything will be better. I’m undergoing radiation now, which I gladly do knowing I won’t get chemo this time. I’ll take every mercy I can get. I think I might be in denial about the future too, like maybe this will be taken care of and end at some point, but I know I’ll always be a cancer patient. I decided that I need at least ten more years, enough to see my kids grown. That’s all I’m asking and I’m going to fight like hell to get it. Beyond that, it’s icing on the cake. 🙂 Till then, one day at a time. Many (((hugs))) to you and yours~
Hi Lisa, thank you for your kind words. Being diagnosed at any age sucks. Period. I am sorry you are going through this mess too. So glad you don’t need the chemo. I hope you’re doing well with the radiation treatment. Hoping your recovery goes quickly and smoothly. We all cope differently, and I know keeping some level of denial helps us keep going. Some days are better than others and it’s OK to allow ourselves to experience all the emotions that come with this experience (good and bad). I wish you good luck with everything. May you live for many, many more years! xo
I agree. I was 32 also when I was diagnosed with breast cancer — I’m 47 now. I had a different kind of cancer prior to that, so I’m pretty much always going to be waiting. I suspect it won’t even be cancer that takes me, but it’s always in the back of my mind.
HI Carmelita, I am sorry you were diagnosed so young (and with two different cancers too!). It’s encouraging to see you continue to do well after all those years. I am afraid cancer will always be on our minds. For me, it feels safer to be aware that it could happen again. It wouldn’t hurt as much as the first time. Stay well! xo
I was an early stager too. Bilateral mastectomy and chemo but then nothing because triple negative has no pill or follow up after that. They don’t even do scans because it’s unlikely they would catch it if it came back. I try not to panic over every ache or pain but sometimes it just feels like this monster is just waiting for me to feel free and then it will rear it’s ugly head. NED since 2009.
Rachel, I completely understand your fear. I try not to worry about every ache or pain unless they last longer than 2-3 weeks. This is when I contact my Onco. Just happened to me this past winter with hip pains I’ve been experiencing since last Nov. Got xrays, MRI and PT. Thankfully nothing was found, but the pain persists (left hip). I blame it on the Tamoxifen, but I do have moments of panic. Sigh. Happy to know you’re doing well though. Please stay well. xo
I am so glad you said something about your hip pain! I was 58 when I found lump – lumpectomy 5 nodes with cancer stage 3a. Chemo and radiation now taking Arimidex almost a year – have had capel tunnel syndrome and hip bursitis that is really bad and I’ve done everything but it won’t go away!! I think the Arimedex is the problem but I won’t stop taking it – I am also doing Zometa bone infusions 2 X a year for 3 years to make bones stronger. You are right we may be passed the worst but it is always there – I have to rely on my faith everyday. Thanks for writing this – no one knows what it’s like except those who have gone down the path – 💕
Hi Ali, these side effects from our treatments are no joke. I am wearing a lidocaine patch right now for the left hip which is the one that hurts. Thankfully scans don’t show any cancer but my Onco suspects it’s the Tamoxifen doing this to me. She asked me to take a week break to see if the pain goes away and I did not listen. Instead, I ran to another doctor to get scans. I hope my onco still loves me. I am sure they understand our fears though. Arimidex is def. a contributor to your pain. I’ve heard the same complaints from many other patients who also take it. I hope the Zometa infusions are helping you. I hold on to faith too, but there are times when I doubt everything. And thank goodness we have each other to walk this path with. Thank you for stopping by. Stay well. xo
Hi. Thanks for sharing these thoughts. It helps me feel less alone while I try to come to grips with the fact I am not really done, will never be done, this is my new normal….learning to live with the feeling that something is there in the shadows watching me. One year after my early stage diagnosis, surgery, radiation and Aromisin now for 9 months, I am NED and I’m trying to learn to live without letting the lurker in the shadows darken my otherwise very beautiful life. I hope your news is always good news…I wish that for all the women and men living with the cancer.
We’re def. not alone on this one. It’s a hard thing to accept, that we’re never done with cancer, but eventually we learn to cope on our own way. Having each other helps. Congratulations on the completion of your treatment. I hope you don’t experience any side effects with Aromasin. And thank you for your kind wishes. I hope the same for all of us too. xo
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I think the worst thing about cancer, apart from the debilitating treatments and the permanent, unpleasant and ongoing changes to my body, is the constant spectre of death that is sometimes right in my face, at other times a lurking sinister shadow in the back of my mind. Such is stage 4. I understand that dread of it returning, I have been NED 3 times and it was almost a relief to find a new tumour because then i wasn’t waiting for the axe to fall anymore. But then the spectre rises from its resting place and we are back on the treadmill. Good things happen around and in spite of cancer but cancer is no good thing. I pray that you never get back on that treadmill xxx
Karyn, I am sorry you’re dealing with this disease. You said something very interesting, ‘it was almost a relief to find a new tumour because then i wasn’t waiting for the axe to fall anymore’. I understand exactly what you mean. At this moment I feel like a bouncing ball with no place of belonging (or identity). I know people who haven’t done cancer do not understand this part of survivorship. It’s no picnic. It’s a struggle. I wrote about this before – here’s the article: https://thesmallc.com/2015/06/17/stuck-in-between-two-worlds/.
Like you I appreciate the good days I get. Thank you for your kindness. I wish there was a cure for cancer so no one would worry. I wish you good luck with everything! xo
Loved this so much,I have always said to people who ask that the fear is the worst bit, the wave of panic that washes over you when a new pain or symptom occurs.. I also use the 3 week rule, my onc recommened it.. Sometimes its a f**king long 3 weeks though!!.. I was 34 and it was 2009 and have had primary breast and then a single met in my stermum 3 years later.. Apparently you can get along fine without an upper sternum.. I am proof!!.. I’m still hoping that one day I’ll get used to the sword dangling.. Until then one day at a time I suppose… Take care and keep writing xxx
Oh yes! I am very familiar with that feeling of panic. I’ve had liver scans as well as hip MRIs because of my fear. In fact, every time I feel something I pay close attention to it. I never used to do this before my dx. Well, not as frequently. And I get what you mean about 3 weeks being too damn long! I am sorry about the met. I am glad you’re doing well so far. One day at a time is how we do it. xo
The worst part is not being the mom I used to be before cancer…not being awake when my 16 year old comes home from school, not having the energy to cook any meals, not being able to spend time enjoying my college daughter’s summer vacation because I’ll be having radiation for 5 weeks and working to make the money I lost over the past year while in chemo and having surgery… I’m so very sad to not be the mom I want to be …
Hi Phylis, I am sorry cancer happened to you too. Treatments can be so debilitating. I hope you have a good support system. Someone who can hold your hand and tell you you’re a wonderful mom, because you are. I am sure your kids understand and admire you for all you’ve done under such difficult circumstances. And if they don’t get it now, they eventually will. Remember to be kind to yourself, too. And I hope days get better for you soon. One day at a time. Please stay well. xo
That photo is the best for this one. ❤
Mandi, nice to see you!! I probably could have left the words out and just leave the picture, which basically says it all. xo
It’s like you were reading my mind! It is always on my mind. And I don’t think friends and family understand the trauma we have been through and how it can always return.
Had chemo, AC and Taxol…Left breast mastectomy, and 33 days of radiation. Stage 3
2 year checkup coming in June. Very scary.
Thanks for sharing your story!
Hi Kerrie, I think people want us well, and perhaps it is difficult for some of them to process the fact that we’ll always be in ‘danger’ with our health, hence the continuous monitoring. I agree it is frustrating when people can’t understand our fears. We had the same type of chemo (not fun!). Glad you’re finished with treatments. Now we deal with survivorship, which isn’t a picnic either. Still, I am grateful to still be here. Good luck with your upcoming appt.! I have my MRI next month. And yes, all of this is scary. Stay well. xo
It’s true that we can get through most things if we see an end in sight. That’s called hope. When something is ongoing and there’s no end, it takes a heavy toll on our mind and emotions. Thank you for articulating this so well.
Exactly, Eileen. Now I have a difficult relationship with hope but I try to hold on to the good news I receive about my health. I hope you’re feeling better these days. It’s always good to see you. xo
You’ve said it so well here. I took Tamoxifen and then Aromisin, and after I took that last pill, I remember that I took a deep breath and said out loud, “Ok, body, we’ve done everything we can from our side here. Do your thing.” You never lose that insecure, on-edge feeling. I know: I’ve been cancer free for 20 years.
Hi Kay, your story is so encouraging! 20 years with NED is wonderful. I often hear that feeling of uncertainty never goes away. I am trying to accept it. Thank you for commenting and continue to do well! xo
I look forward to your being able to stop taking tamoxifen. That will help, and yet, it’s hard to put breast cancer entirely in the rear view mirror when we know that it can recur after many years of NED. I call breast cancer “The Stalker.” It’s hard to forget. One day at a time is all we can do. xoxo, Kathi
Kathi, I am looking forward to it too! I agree it would help, once I get used to the idea. BC is a stalker, yes! And the more we know, the harder it is to keep a sense of denial. But in my situation I’d rather know all the facts. Hope we all have more good days than bad days. xo
You really have put down exactly what the cancer diagnoses leaves you with. I had small early stage DCIS/IDC, 2 lumpectomies and rads. No chemo. My scans at 10 moths are all clear. ANd yet I am hung up as a cancer survivor. Yes every action decision is colored by the cancer. Like someone else also mentioned, I figure I need 10 more years to see my younger one graduate college and find a job, a niche in life. SO I pop my tamox every morning faithfully praying for my 10 years. I already have bad knees so the added tamox does not help. I’m trying to calm myself down and simplify stuff in life, but I love the fast hectic pace my life was before, and yes I kind of regret the loss of innocence and invincibility that I had before diagnoses. Take care and enjoy life. It has new meaning now.
Surbhi, I am sorry you’re going through this. I am just glad we are not completely alone. There are others who get it and understand. The strange part of all of this is that even though we are not alone, we still feel alone, if that makes any sense. And yes, once diagnosed, we no longer have the same level of innocence we once had – one of the things I miss the most. It’s def. a different life and one I’ve learned to appreciate despite all the misfortunes. I am still grateful to be alive. Please stay well. xo
Re read the article again today. It’s still true it colors my life too much. I’m still at some level fighting my new normal till the fatigue or some follow up hits. Take care.
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You described my feelings about radiation to a T. Agree with ever other thing!!