It gets harder before it gets easier

At a support group the other night, some of the folks mentioned that they found things got easier as time progressed. That is, it was really hard during that time of uncertainty when you first get your diagnosis, but it got easier as you were in active treatment. I hate to be the one to burst their bubble, but my reality anyways is that it has gotten a lot harder after active treatment. During active treatment your doctors want to hear about your side effects, they want to do something to help reduce the side effects you are experiencing. After active treatment, it feels more like they are abandoning you – you are not interesting anymore – and your longer term side effects are not something they want to manage.

So, for me, at this point in time, I’m finding things a lot harder than I did during active treatment. My doctors are telling me to go away and come back in 6-months, and yet I’m still suffering from side effects. I’m also having to deal with fear – the constant sense that every time a part of my body hurts I’m afraid of metastasis. Every headache, every muscle ache (bone ache), the arthritis in my back … all of it brings on a paralyzing fear of disease spread – and yet my doctors don’t want to see me anymore. I feel like I’ve become this high-maintenance patient because I want some form of follow up … I want some form of confirmation that I’m doing OK. I also want some validation that my side effects are real, and that they suck … and perhaps maybe something can be done about some of them (or not) … some of the issues will take time to get better, and there really isn’t much else that can be done … I do wonder if the doctors also feel powerless at this point? Maybe this is why they don’t want more follow-up? … because they cannot do anything about it either … only time will help heal some of my wounds.

My point is, I’m finding this time a lot harder than I found other times in this journey. I’m struggling to reclaim parts of my life, while I deal with debilitating joint aches, feet that hurt when I walk, difficulty standing up after sitting for a few minutes, and an inability to get a decent  nights sleep … I’m trying to stay away from pain meds, and for the next week (pre-surgery) need to stop my anti-inflammatory meds, which in-turn means more joint pain and more difficulty moving, and more difficulty sleeping … and it all effects my mental and emotional well being. I  struggle with not going down that rabbit hole of “what if the cancer spreads” but that fight is really difficult when I haven’t had enough sleep … maybe I just need a few more hugs … so if you see me in the next week, feel free to give me a real hug … cause right now, I don’t hurt so much physically as I do mentally and hugs really help!

  • Becky


  • I’m really sorry to hear this and of course, I can’t put myself in your situation. I can only sympathise. The only thing I can say is that from my experience we have to allow time for life changes to be adapted to. We never know what these changes will be, but for me I am never prepared, but retrospectively realise that I have gone through a period of adaptation. I wish I could remember at the time to not fight it but go with the flow, but I never do. Hope you will feel better soon and sending you a virtual hug 🙂

  • I found the period after treatment very difficult and after starting tamoxifen I sank into a deep depression. Eventually I went into counseling at the cancer centre and found my way through my depression by working through the exercises in a book called “Picking up the pieces – Life after a cancer diagnosis”.

  • Thanks Wendy. I think I’ll take a look at that book. I’m working with a councilor here who I have seen since I was on chemo …

  • You’ve gone through a lot in the last 8 months, and you’ve been so upbeat and positive. It’s time to relax and take a breathe. Pain means your alive. How you deal with it, is how you live. Don’t let fear run your life. I know it’s easier said then done. Stay positive. Your no less a person, daughter, friend, wife then you were 8months ago. Your smart and educated, focus on your career and your husband, who’s gone through this with you, and know that you are loved and we are all proud of you for the way you handled things. Love you!

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