Life After Cancer: Do you feel prepared for it?

Life after cancer is not our true life. I have/had SCLC. Did my chemo & radiation. I was told I am in remission the first week of August. I was on a "high" for about a week. I was soo thin , had no hair,I was so weak I couldn't even go to the store. Fast forward to now. I look pretty good but I am in constant pain (CIPN) I and dizzy from the different medications. My only saving grace is the pain medication that makes me feel almost normal for about 2 hours. I can now shop for about 1 to 1.5 hrs. Go to the park and enjoy my family. BUT in the back of my mind cancer is always lurking in the shadows. I don't know if I will ever be "normal" or if this is the "new normal" for me. Yes I am so happy I am in remission but well see above. God Bless you and I do smile so try that. Oh I forgot I cry a lot. At babies ,puppies, & beautiful flowers. I just cry.

I think we all have to find our "new normal" but no one ever prepared me for that. It seems so naive of me when I look back on it. It just never occurred to me that what I considered my normal would be no more once this journey began. I just wish practitioners were more forthcoming with that information. I know everyone is different and we could have the same cancer but entirely different journeys. I just think there needs to be some sort of discussion whether it be with the physicians or a therapist that specializes in these sorts of issues, the discussion needs to take place so that no one begins this journey thinking they can get through the challenges and come out on the other side with their "old normal" waiting on them. Things will be different. Those changes may last a few months or be lifelong. And we should all be prepared for that.

I am so sorry to know that you feel isolated and defeated: with the fallout from your treatment, how could you not? I also feel your frustration at not being prepared for it: I felt that, too. (I often yelled out, "This is bullsh!t!") 🙂 I hope you can find the courage and support to keep seeking help for your symptoms, and that you're able to give yourself some grace that even though a post-cancer life is not what you expected or were prepared for, it is still life. As long as we can rage or cry or laugh or mourn, we're still here.

Wise words, my friend. What I think is missing from cancer care in general is a spiritual (not necessarily religious, but that's okay, too) component. A cancer diagnosis is an existential/spiritual crisis, and when we're not able to address that, and especially receive guidance for it, we can feel as though something essential has been overlooked. Our culture is terrible at acknowledging life and death issues: we're all supposed to "get over it," and "move on," etc. My hope is that as we continue to talk about these issues, it will bring spiritual care into cancer care.

You're absolutely right. Sometimes it's difficult to be grateful for life when it isn't the life we once knew, but I think trying to keep the "I'm still here" attitude is essential. I've struggled with that a lot, but reading your response definitely reminds me that this is still life. It isn't what I knew. It isn't what I expected. It isn't what I was prepared for. But it is still life. I also agree that part of cancer care should include a spiritual component. Whether we're religious people or not, we are all experiencing that existential crisis and there is very little focus on that. You're also correct about our culture. I do feel like some people look at my situation or hear my story and expect me to have fully rebounded by now. The worst is over, right? Why am I not over it? I've been fortunate enough to have the majority of people in my life express their understanding (as well as confusion) about my current struggles, but I've also had people act as if what I'm going through now can't possibly be as bad as what I've already gone through. That just isn't the truth of the situation. I still struggle as much today (if not more) as I did when I first had surgery or when I was in the midst of my radiation. I think continuing this talk amongst ourselves as cancer patients and survivors is pivotal. Hopefully, we can continue to support each other until our treatments include the proper support...and beyond. Even if we don't necessarily need to talk about these issues with one another anymore I think having this community of patients and survivors is important for all of us.

Yes, we're all here for support, to give and to receive! That expectation to be 'over it' is so dang frustrating. When my spouse and I left my follow up appointment, when everything was fine, no more cancer, etc., I was upset by all the well-meaning staff questions about 'celebrating.' I told my spouse, "I feel like I was kidnapped seven months ago, cut into, irradiated, then poisoned and shaved bald, and now my captors have released me and want to know when the big party is!" 🙂 I was, and to an extent still am, traumatized! This community of patients and survivors is so important, and I'm glad you're here.

When I was first diagnosed I made my husband & daughter promise not to tell anyone. Well after the weight lose & hair lose people knew. Now I preface many conversations with I have/had lung cancer. I ask myself why do I do that? I want to scream sometimes. I am glad there is this site where I can let myself go. I will never be normal, but I will be strong. Gee this CIPN is really kicking up like a demon today.

I am 3 years out from my mastectomy. I had chemo, then the mastectomy then radiation. My journey, as is everyone’s is different from that of my friends, so it seems I still need an outlet like this. My oncologist told me I had had every side affect he’d seen I his practice of almost 30 years, plus two he knew were side affects but had yet to see. Most individuals think that when the treatments are over, you should be celebrating. Unfortunately I’m still battling the side affects of my treatment and it’s hard to find others who understand. I still have neuropathy, but I’ve been treating it and the pain is less. I also have other issues that limit me physically that aren’t evident so it’s hard to explain that you are still going through cancer’s after affects. My husband has been supportive but doesn’t understand that there is no timetable we are guaranteed to be back to “normal”. My doctors keep telling me that my journey has been longer than “normal” but I keep wanting to know who defines “normal”. I’ve been grateful to find the Mayo cancer groups who understand that life after cancer is usually not what you had before. Thanks for letting me see I’m not in this alone.

@oceanlady22 Having a safe place to vent is so important, isn't it?! I bet many are nodding their heads in agreement with what you and @valentinaz have said.

I am an active chemo patient, for multiple myeloma, and the medication currently does not cause hair loss. There are other health issues on my plate right now. So, I get the "but you don't look sick" or the subtle comments of why can't I do something on a day when it was a great achievement to get out of bed!

So glad we have this space to vent. We all can relate in our own ways.
Ginger

For what it's worth, you are SO not alone, and if I could eliminate 'normal' from our vocabularies, I'd do it! Personally, I don't think it's possible to go back to normal, or anything else: there is only going forward, as much as I really hate that sometimes. I'm sorry, too, that you still have neuropathies; they can be dang uncomfortable, if not painful. I hope your treatments continue to offer some relief, and that with time, they fade. That's what I'm hoping for me, too! 🙂