Anyone else feel very aimless after remission?

[namechange0998776554799000]

Long story short, I had cancer (stage 4 lymphoma) 2 years ago which was successfully treated with chemo. Nine months ago I had a scan which was unclear and was told I may have relapsed but would have to wait and see if anything grew. Yesterday I finally got the news that all is fine, I haven't relapsed and after one more checkup in 6 months I'll be fully discharged.

The problem is, I have this overwhelming feeling of 'what do I do now?'. My friends are family are all thrilled because we've had this awful cloud hanging over us for so long and it's finally over. But I was mentally prepared for more treatment etc and now that's not happening I just feel very flat. It means I'll have to actually go back to work and the thought of just spending the rest of my life getting up, wrangling the kids, going to work, rinse and repeat just feels very monotonous and pointless. It's been so long since I didn't have the cancer cloud hanging over me, I'm just not sure what I am without it any more! Can anyone relate??

Yes ! The only way I can describe it is , I feel as if I've been on a train for a very long time and it's suddenly stopped and I've been dropped off on the desert and now I have to negotiate my way home by myself

I don't think this is uncommon, OP. I had my NED back in February. The effects of cancer on mental health are huge.

Yes totally get it. I had to give up my career because of side effects from my treatment, which I feel very resentful about. I still have physical issues caused by the treatment even though I long since finished it. I’ve been cancer free for more than 5 years. But I’m not the same person as I was pre cancer and I feel sad about that, I miss the old me.

@namechange0998776554799000 it sounds like you've had a really challenging couple of years and now the dust is settling, you're bound to be feeling What next?

it sounds to me like you need to give it more time to mentally and emotionally adjust to your new reality.

modern life seems to expect us always to be doing something, getting out there, being busy chasing after goals and comparing ourselves to others. I would urge you to come off social media for a while, give yourself time and permission to 'sit and be'. Do t feel you have to be doing stuff because everyone else is.

Do things on your terms. Maybe give it a name, make it your own "I'm getting my Life Back" phase which will take as long as it takes, however long you need, dont feel forced to do anything before you're ready, before long it will start to make sense and things will fall into place.😊

Yes, exactly this!

I'm sorry but also reassured that others feel the same. It is exactly that feeling like I'm a completely different person than before. I can't even picture what the old me was like and how I could get back to that again.

I really like the idea of intentionally giving a name to this phase @daisychain01. It's like everyone else sees this 'cancer phase' and 'post-cancer phase' and actually I need permission to have a middle phase where it's just ok to not know how I feel yet.

Have you read “ After the treatment is over” by Dr Peter Harvey. It is excellent and just hits the nail on the head. I found it a great help to understand this phase ( which I’m still going through) I finished my treatment in June and I feel the exact same as you are now. I just want my old life and the old me back 😢 xx

Thank you @Jellybaby500, I've just read it and it is excellent!

Joining in to say similar to posters above.

I was diagnosed with and treated for TNBC in 2023. Early in 2024 I was signed off by oncologist with NED. And felt….. relieved but also flat and exhausted. I now recognise that I was in a post traumatic state.

The train analogy is good. One that worked for me was that I’d been caught in a rip tide, and had washed up on an unfamiliar beach. Peter Harvey nails the process.

Absolute watershed for me was second annual mammogram and being able to say ‘Two years ago’ rather than ‘Last year’.

@namechange0998776554799000 You’ve been on high alert for a long old time. It will take a while to ‘get back to normal’, a phrase I found v jarring. But as the second year post treatment has unfolded I do feel more like me, and am living a good life, a little battle scarred, but good. And with increased appreciation of what brings contentment, and an unwillingness to engage more than I have to with nonsense and negativity. It now feels in the past.

Be v kind to yourself and give it time. Hopefully, one day fairly soon you’ll think to yourself ooo, the cloud has lifted. Take care

Another vote for the Peter Harvey PDF. I am 3 years cince original diagnosis, NED, and told recently that the risks of any further reocurrance is now very low. This thing that was always on my mind is slowly drifting away and I need to refind myself.

People who have not been through this are somewhat deluded into the later stages of life and how close it is - I have changed, I am accutely aware that my time is limited, my physical capabilities will decline, I will die - cancer or not.

Not much good advice, but going back to what made you happy when you were young - activities, music,films - seems to be the thing that makes this go away, if only for a short time.

I came here to see if anyone felt like I do. Reading this is so helpful - just to know it's not just me. I feel so tearful and empty, really depressed. I've been through chemo (which induced menopause), radiotherapy, ongoing treatment for a year and won't have the all clear for 10 years, assuming I do. the intense treatment phase was ok, this is unbearable!

I've tried to return to work and I just can't. I don't know who I am now, or what to do. I don't know if I need to get out there and exercise and keep busy, or continue to stay home and be quiet and nap. I don't know if it's hormones or treatment fatigue, or mental health. I just feel like I don't want to be here anymore. I'm 46, divorced, 3 children so lots to live for! I just don't feel it.

There’s a thread in general health called the Great Recovery. This is exactly the sort of thing that we chat about, It’s a move on thread from the cancer thread for those of us who have had cancer and are out the other side - It’s very friendly and supportive. What you’re feeling is very common.

I think part of it is that you have to kind of disassociate to go through a stressful process and turn off your emotions. I haven’t had a diagnosis, however I was on the Rapid Access Pathway for suspected cancer in the summer and had to have a couple of operations and a biopsy. It took 7 weeks from beginning to end and when I got the all clear I felt nothing, I think because it had been so stressful that I’d just closed down emotionally to get through it.

Nice to see some familiar names here trying to help OP. I agree with lots of the above. What helped me after two rounds of cancer treatment for different primaries was the gentle approach. Like others have said taking time out, being still and in nature, and soothing your system with comforting smells and sounds and foods and sensations all seems to help heal the soul. Yoga and meditation worked for me.
I too lost my career due to cancer so am now settling into an active retirement and getting fitter and stronger. Life is very different but not worse.
You are welcome on the Great Recovery thread too.

Thanks everyone. Hugs to everyone else who's finding it tough but it does help to know there are others who feel the same. My first week back at work was tough, I feel very out of practice and the whole thing was a bit overwhelming. It didn't help that DH had surgery - biopsy to check for cancer - and DS refused school as he often does, so I had two kids and a DH to deal with at the same time as work. But, I got through it and I'm feeling a bit better this week.

I cheered myself up buying unnecessary beauty products and staring weight loss injections, which has been on hold pending results and money for ages but I'm finally able to get started with. Fingers crossed things will start looking up!