In Remission Anxiety

This sounds so ridiculous because there are people on here with much more serious situations than me now. I am 6 years in remission post childhood APML leukemia and my mum also had renal carcinoma in 2020 and i'm struggling mentally. I can't shake the anxiety of it coming back, i have flashbacks in my dreams and anxiety attacks all the time. If there's a mark on my skin, a bruise or anything and mind immediately goes to oh my god its back. I can't move on and live my life because it follows me around everywhere. It's been like this for years and I'm fed up. I'm a fortunate one but the mental toll it has taken on me is destroying me. Is there anyone else post treatment that has gone through this and anything you do to cope with it?

  • I’m sorry this is something you’ve been struggling with and I truly hope that you can get past it and enjoy life again- I hope that doesn’t sound too patronising.

    I’ve only been in remission for a few months now and, so far, I’ve been fine mentally so I can’t really relate to you. However, I’m obviously doing something right and so I thought I’d try and give you some advice- it may not be the best but I’ll try.

    I think what helped me a lot was watching YouTube videos of other people’s experiences. It may not be the same for you but I find it comforting, especially seeing people who’ve gone through a lot and years later seem to have completely moved on. There’s a video posted by jubilee- ‘Do all cancer survivors think the same’- one of the guys in there is just so positive and has a great outlook.

    I know this may not be the best mindset to have, but if something ever comes up (a pain, headache etc) I just tell myself it’s probably nothing and try to ignore it. Of course I’d keep an eye on it like if it was constant for a week or two then I’d probably get it checked but if not then it’s likely nothing.

    I tell myself there’s absolutely nothing I can do to stop it coming back. Sure you can eat healthy, exercise, stay away from alcohol, but at the end of the day that won’t prevent it if it’s going to happen.

    So, I just try to enjoy life because at the end of the day, you don’t know what’s going to happen. I’m terrified of being on my deathbed and having loads of regrets or wishing I’d enjoyed myself more. I’ve seen yt videos posted by people with terminal cancer and it makes me feel incredibly lucky and I’d hate myself if I went through life worrying about what could happen and holding myself back when someone else has lost their life and won’t get the chance to experience things they’d always wanted to.

    I recommend doing a bunch of things that make you happy with a bunch of people that you love- or by yourself, it’s equally as fun- and hopefully soon you’ll be able to leave your ghosts in the past.

    I don’t know if what I said will help at all or if I actually answered your question- I tend to ramble- and I’m sorry if anything I wrote comes off a bit insensitive or patronising- I didn’t mean it to.

    I wish you all the best and hope someone with better advice replies to you.

  • It 's not ridiculous because it's what you are experiencing right now and it's perfectly understandable.  I'm in the kidney cancer group and we've discussed this before.  Once you have the diagnosis it's always there and at a risk of returning, whatever "no evidence of disease" scan outcome you might be given.  My oncologist recently said he never talks of a cancer cure for that reason and I definitely am on the same page.  Once it's arrived, game changer.  

    I have also thought "oh, pain in the side, symptom of kidney cancer, what's going on?".  But there are so many potential causes; the treatment, the drugs and the side effects.  I had no idea and no symptoms when my unwelcome visitors were slowly taking hold within my body, so having a pain now doesn't really have any rationale.  Instead I think of the monitoring programme I am under, the fact I can phone in if need be, the positives from my treatment (this is definitely relevant for you) that my cancer is regarded as under control, and the likelihood of it being attributable to a cancer return (unlikely).  A mind over matter approach.   Perhaps this sounds like I am in denial.  I'm not.  I know one day my level 1 treatment will lose its battle and then I will move on to a new level 2 treatment.  

    What about looking into CBT  (cognitive behaviour therapy) or phoning the Macmillan line?  Everyone is different and one size doesn't fit all but I totally get where you're coming from.   I read a book on CBT a few years back to help me with frustrations at work.   Good luck.