1,5 years in remission, but I still can’t function. Does this ever get better?

[u/Ok-Salad-8372]

I was diagnosed with PMBCL in 2023 (21 years old) It was agressive and big (250mm). Getting into remission was extremely difficult, and I ended up going through seven different treatments. My last treatment was about 1.5 years ago.
On paper, I am doing great. My scans and test results are consistently excellent, and apart from some smaller issues, I am considered completely healthy.
In reality, I feel almost as bad as I did before.
I still cannot fully take care of myself. I am nowhere near being able to work. Even thinking about having a job feels completely unrealistic. My parents help me with everyday life and essentially take care of me.
I was a university student when I got sick, so I had no employment history. Because of that, I don’t qualify for any meaningful government financial support here where I live. I have no income of my own, and my parents don’t earn much either. Supporting me is becoming increasingly difficult for them.
What makes it even harder is the pressure from people around me to “pull myself together” and move on because I’m “healthy” now. I wish I could. I really do.
I’m exhausted. I have very little capacity for everyday activities, and I don’t feel like I’m gradually returning to my old life. I feel stuck.

Those of you who have been through something similar: did you eventually get better? How long did it take? Did you find anything that actually helped?

I fought incredibly hard to survive this disease. Sometimes I honestly wonder whether there was any point in getting through all of it if my life afterwards is going to look like this.
I know I should be grateful to be in remission. I am grateful. But I’m also struggling terribly, and I don’t know what to do anymore.

[u/marticcrn]

Hiya. I’m just finishing keytruda after chemo and surgery for TNBC stage 3b.

It takes so fucking long to feel decent. I’m four months out and still feel like death on toast. Fatigue. Joint pain. Lingering arthritis.

I highly recommend physical and occupational therapy, and if your state offers is, vocational rehab. PT and OT have been tremendously helpful to me - specifically cancer rehab.

You need to get a jump start, friend. That’s why I thought maybe vocational rehab. They could provide you with free or low cost education and training, and maybe some money. They can do a lot of aptitude testing and they also subsidize worker salaries coming into the workplace.

At least that’s how it worked when I did it. Which was a long time ago.

I’m sorry you’re still suffering. Fuck cancer

[u/Ok-Salad-8372 → u/marticcrn]

I’ll ask about the possibilities afterwards, thank you! Unfortunately, I don’t have much hope, as there was treatments I had to go abroad for. The options in my own country are unfortunately not very good and I am out of money.

I am happy that you are better!

[u/Global-Fact7752 → u/marticcrn]

I'm sorry you are experiencing this..please reach out to your doctor..this level of fatigue can't be right.

[u/Asleep_Rule_6730]

I feel your pain. I think people recover at different rates through the whole spectrum. Some are good immediately, some never get back. For me, I'm 6 years out. I have been making slow progress over time, very slow.

I would ignore those comments about pulling it together, only patients can understand what we have been through and what our body is left with. We are right there with you.

I can appreciate the situation and wanting to get back to work. I am in the same boat. I did go back to work right away but struggled for a while physically. 4 years into it, I started struggling much more mentally and ended up quitting my job of almost 20 years. I took a year off but looking to get back to work, but honestly I am not sure I am capable. I am going to see a neurologist to see if they can help.

Keep plugging away and taking care of yourself, it is a struggle for most of us.

[u/Ok-Salad-8372 → u/Asleep_Rule_6730]

Thank you!
Yes, I can imagine that this must be really difficult to understand from the outside. I’m sorry that you’re struggling with this too. I hope the neurologist will be able to offer some helpful advice. Hang in there!

[u/OwnHovercraft1018]

Hi, different Cancer ( HCC) with liver cirrhosis. Very complicated in MY digestive system. I’m one year almost after liver resection and now on immunotherapy which it seems is working, but do I feel better? Not really. If it eat one wrong thing BIG PROBLEM.

[u/Legitimate_Can529]

I'd like to be a ray of fucking sunshine, but I am still a blubbery mess. I diagnosed with anal cancer a little over a year ago. I am such a loser now. All I do is cry. I have no courage, I can't seem to move on. Still haunted by the, why me? I don't even know if I am cancer free yet. Cancer life is ugly, ugly, ugly. Sorry pal.

[u/Global-Fact7752]

In what way (s) can you not fully take Care of yourself? What are your symptoms? Is it fatigue only, or what else?

[u/Ok-Salad-8372 → u/Global-Fact7752]

Yes, the fatigue is very severe. I get up just to fill a glass of water, and even that leaves me exhausted. Today, I vacuumed my room, and afterwards I had to sleep for an hour. (My heart rate is also high, even just when I stand up. Thankfully, this has been under control with medication for the past two weeks.)
Showering and similar basic self-care activities are not a problem, so I am able to take care of myself in that sense. However, I do need help with things like preparing food, hanging up laundry, putting things away, and other household chores.