CW for cancer.
I’m 39 and I found out last May I have endometrial cancer, stage 4b and incurable. At the time I couldn’t have surgery (it’s not in the guidelines for uterine ca at stage 4b.) I started palliative chemo, I was allergic, tried another chemo, did two cycles and then my bowel perforated. They told me that was mostly it and there wouldn’t be any more re chemo…I was really poorly at this point, couldn’t have surgery to fix my bowel so we were just waiting, on bowel rest and being fed through my vein… and I was getting my death admin done.
Then the CNS (angels) helped me get a second opinion, and I landed with a new oncologist. From here, things got better, I had a long stay in hospital having tpn, then with a long infection, but eventually he found a chemo regime to try, I was going to die anyway so although risky I signed the forms and I started, and with just a bump for sepsis and a DVT in my arm along the way, the chemo, amazingly, worked.
My cancer markers were down, I was feeling okayish, and then in Feb the surgeon said why don’t we offer surgery – it was out of guidelines, risky and it wasn’t known if they’d even be able to do anything, but actually it went brilliantly and the surgeon managed to remove my massice 25cm tumour, all the affected organs and
my omentum – there was no visible cancer left.
I did two more chemo cycles – ten in total, and now I am no evidence of disease, my markers are all normal and my latest CT is clear. How amazing, it’s a bit unreal to be truthful.
So now I’ve gone from dying somewhere between now and 2 years from now, to currently having a real chance to keep it in remission for a number of years, and have a normalish life for a while…albeit I am having hormonal maintenance treatment orally and will live in cancerland, most likely, forever.
Now with cancer came huge and rapid weight loss, but since I’ve starting feel well again, and I’ve started the hormone medicine and mirtazipine, my weight has flown up, I’ve gained 4 stone since June…it’s crazy. I’m hungry all the time (which I’m grateful for because this time last year I was being fed with TPN through my vein) and my bmr is on the floor so I just feel so out of control and I feel like I’ve disappointed everyone by putting weight back on. I feel so tired still, and I’m gearing up to going back to work which is terrifying.
I feel lost and sad all the time, and mega mega guilty for it because I know I should be grateful and happy to be alive…and I am, of course I am, I worked so hard to get here. I just feel like a big failure, 39 and starting again. And I just don’t know how you’re meant to nearly die, be told death is imminent…and then go back to normal life like nothing happened. It is so jarring and I don’t know how to be okay with it.
Sorry for the ramble, I’m just hoping someone wiser than I am can tell me it gets easier.
(I do have an NHS psychologist and she is brill, I’m very lucky.)
Comments
Wow that’s quite the journey you’ve been on. I’m happy you’re still here with us. As far as being “ok” it’s likely going to be a long journey with no definitive end. There’s a saying about cancer: worst club best members. I work in healthcare no personal cancer journey but from my professional experience this seems to be very true. Maybe see if there is a cancer specific support group/therapy you can access? Or even connecting with someone online via a platform such as Reddit in a cancer sub? This total stranger is rooting for you. Please try and be super kind to yourself.
You’ve been through so much, it is only natural to have intense emotions and that includes negative feelings. It doesn’t mean you are ungrateful for being alive or anything that you’ve lived through. I’m sure there are good days and bad, but you should definitely let go of the weight-guilt. Give yourself permission to feel your feelings, then do something that makes you feel better, and try to savor those moments. Your spirit and story is amazing, don’t forget that. Wishing you all the best!
I have zero experience to relate to this, but I’m so glad you’re still here with us! You are NOT a failure. You’ve dealt with some of the absolute worst shit life can throw at a person and you’re still here! My sister had stage 3 colon cancer, surgery, chemo, etc, and now 5 years later she’s “cured”. I truly hope yours stays away, but I think you’re a total badass for getting through this. It has to get easier, and I hope that comes quickly for you. Hugs and high fives! You deserve all the happiness.
You’ve been through so much that I had double take and reread that all this has only been going on since May 2024. Literally just a year and change of unbelievable trauma. Honestly I’m sure what you’re going through is very normal and personally, I would be a little skeptical if you weren’t having some struggles after everything you’ve been through. I think you’re going to need a lot more time to process everything! Also, I’m so glad that you’re still here!
Please don’t let anyone make you feel like you “disappointed” them. You literally beat death and did the impossible. Why do you have to go back to work? It’s time to find out what brings you most joy in life. Art nature beauty people. You’ve been given more life. Now you gotta live it the way you want.
Hugs girl. No one prepares you for the “after” when everyone disappears because you’re “cured”, when you’re actually suffering extreme ptsd from the trauma of it all and your body feels wrecked. For myself and many people I’ve met it’s far worse than the early days of diagnosis and all the invasive treatments and your body not being your own.
In any event you’re not a failure in any regard. I’d recommend focusing your energy on discussing your feelings with people who have been through it and not the “you got this” people who simply don’t understand and want you to be happy and smiley and StRoNg about one of the worst experiences anyone can experience.
Continue your therapy and join survivor groups. From personal experience, leveraging those resources will help you feel a lot better in time. I’m 18 months out and still feel somewhat traumatised (the terror of it coming back has lessened, but not left) but starting to feel somewhat normal and hopeful for the future. Sending all good mojo your way.
I’m 37, and my mom has had stage 4 pancreatic cancer for five years now. She’s great and independent and still keeping up with treatment. I’ve been her primary caregiver.
All of this to say: I can’t imagine you’ve actually disappointed anyone. I’m sure it’s a genuine relief and pleasure to see you putting on weight and filling in and looking healthier. I’m proud of you, and you should be in awe of what you accomplished and are still accomplishing. I’ve been watching one version of cancerland from up close, and I’m not sure I’d have the fortitude to fight like both of you have. Bravo bravo.
As far as how you learn to live after preparing for death, I don’t know. But I hope you give yourself an enormous quantity of self compassion, because that’s an impossible thing you’ve been asked to do. You know that all of this leaves trauma scars, but I wanted to add that people who are set up for execution or immediate death that then turns out not to happen—this is considered cruel and unusual and a war crime.
I hope you find a measure of joy and of blissful denial soon.
Have you heard any comedy by Rhod Gilbert? I don’t know if he’s me turned survivors guilt but he’s spoken about his cancer journey several times. It came up on his Off Menu episode. There might be videos from his recent tour.
Does your psychologist know of any groups you can join?
The story was compelling. Sounds like the start of a really good movie. I see you’re wanting someone to tell you that it gets easier but you’ve been through so much, how can it be any harder than that?
Cheers to you! You beat the odds, kudos! ♥️ I am just getting over stage 3 CC, not fun 🙁 my last scan was sparkling clean, I have another scan next week but my doctor isn’t too worried. I can completely empathize with you because I feel the same most days. It’s hard to find people in person that can relate to these things, cancer just takes away control of our own bodies and leaves us sidewinded. The best advice I can give is what I’m doing now; just do whatever you want. I went to Europe for a month after my last scan, if this one is still sparkling I’m going to Asia maybe. Traveling is my thing, find “your thing” and just do it, take little steps to take your life back and enjoy life for the little things. You have to give yourself permission to enjoy life unapologetically
Hi, I’m in a similar boat! 37, was diagnosed with stage 4 melanoma two years ago and given a few months to live but got on a clinical trial and…I’m still here. Not NED but have crazy good looking scans. I pass as a healthy person. I’m back to work at a new job in a new city and no one would suspect I’m a cancer patient.
The whiplash is brutal. I’m so grateful to be here AND I don’t know how to handle “normal” life. All I wanted was to not have cancer be my number one identity and now I get unreasonably upset that people don’t “get it” when it comes to how fucking hard the last couple years have been.
I don’t have advice, I just wanted to express solidarity. I’m so proud of you for navigating what you’ve been through. We’re pretty amazing, you and I.
Holy fuck, girl! Feel yourself hugged. What a terrible experience.
I just celebrated 7 years in remission for stage 3c breast cancer and it really turned everything upside down for me. I was diagnosed at 30 and since then, it seems I’ve felt just about every feeling there is to feel, but I don’t know that I’ve ever stopped feeling lost. I was jarred by the sudden realization that everything that mattered to me wasn’t actually that important and it’s been just about impossible for me to care about things in the same way that I used to. It was jarring to see just how easily the world moves on without you when your world is forced to a stop.
I had to grieve the person I was before this thing happened to me, and I ultimately had to find new meaning in my life, something I’m still in the process of doing. I ended up changing my career path. I could no longer spend my days not being happy for some hypothetical future that might never come. My life is very different now, and it’s definitely not perfect, but I’m much happier with the way I treat myself these days. I’ve yet to find an answer for the loneliness that comes from feeling so alone in my experience, other than spending time with other cancer survivors which I try to do sometimes, but it always lingers. I think there’s just something deeply separating about being forced to face mortality in this way. It’s shaped this new version of myself so thoroughly that I struggle to feel understood by people who haven’t gone through it.
And I know this is fresh for you, so I’ll add that the end of my primary treatment was the most difficult time for me. I’m also on hormonal meds, visit the hospital at least every 6 months, but there was this shift when I was no longer a person with cancer. I was no longer the person I was before cancer either. I was just a person who now saw the world in a completely different way, with all of the obligations and responsibilities of this old version of myself that I could no longer even relate to, much less aspire to be again. And I was surrounded by people who were congratulating me, excited for me to return to this life I didn’t feel connected to.
It’s all just so confusing. And I’m sorry for rambling, but I think this aspect of survivorship is often ignored. I was never prepared for this and it was painful to navigate. In my desperation, I spent a lot of time trying to find books, speakers, something that would give me some answers. I’d never been a particularly spiritual person, but I do find the teachings of Ram Dass to be extremely helpful, and he has lots of lectures that I suggest people who are open to that kind of thing explore. He’s not religious, but he speaks a lot about death, meaning, suffering, in ways that helped me make sense of my experience. Regardless, I hope you find some peace in your experience. A lot of us go through what you’re going through now. Know that you’re not alone, even if you feel that way.
Oh my goodness girl. You have some serious balls! Im so glad you are with us.
Im definitely not wiser by any means but you don’t owe any feelings to anyone. You have every right to feel lost and sad. Feelings ebb and flow and change, and never stay the same. You’ve gone through something absolutely terrifying and disorienting and it’s only natural to feel this way. 💐💖
I don’t know you and I felt an increasing sense of pride for you reading this message. I did get teary eyes reading that you think you may have disappointed anyone. The people who love you are thrilled that you are still here. There’s even a bit more of you to love.
Next time you look into a mirror tell yourself what a warrior you are. Be proud of your journey.
“And I just don’t know how you’re meant to nearly die, be told death is imminent…and then go back to normal life like nothing happened. It is so jarring and I don’t know how to be okay with it.”
This is PTSD in a nutshell. War is just one cause of PTSD, other near-death experiences including near-death experiences are many others. 1 in 5 critically ill individuals experience PTSD after ICU stays – https://pmc.ncbi.nlm.nih.gov/articles/PMC11046361/
You have incredible strength and resilience I just want to say and I applaud you posting and sharing your experience thank you (sorry I can’t offer helpful advice)
What you have gone through sounds traumatic and it is perfectly normal to those feelings. You also went into survival mode for so long, that your body and brain were affected. You are healing. Give yourself time. Take care of yourself in any way you can. I’m so sorry you’ve been going through this. I’m happy you’re still here.
Wow! You’ve experienced and made sense of things through so much. I want to say every bit of weight is a testament to your ability to live right now. It signals life!
So much of what you said is exactly how I was feeling 6 years ago (I’m 34 now but I was 28 when I was diagnosed with cancer). I felt so lost after finishing treatment. Everyone expected me to be celebrating but all I felt was numb and exhausted. After a lot of counselling, it helped me to accept it’s completely normal to feel sad and overwhelmed after going through something so traumatic.
I noticed you mentioned the NHS so I’m assuming you’re in the UK? If you haven’t heard of it, there’s a charity called Shine Cancer Support that specifically support young adults in their 20s, 30s and 40s who have been through cancer. They do virtual and in-person meet ups around the UK.
Going through cancer at any age is difficult, but there are certain situations (like returning to work) that younger adults have to navigate, and I found it really helpful to talk with other people a similar age who could understand how it feels. It felt really reassuring to hear other people say “I felt exactly the same way.”
In my experience it does get easier, but please don’t be hard on yourself, you’ve been through a lot and how you’re feeling is a completely valid reaction 💜
I’m also a cancer survivor. It’s a surreal experience to go from desperately wanting to live to trying to understand what that means and how it looks. Depression and unease and feeling lost is something that I think a lot of us face as we try to settle back into “real life”.
If you aren’t already you should be speaking to a therapist. I found that helpful (even if I didn’t do it as soon as I should have). See if there is a survivor group in your area. The loss of direction and idk purpose in the day to day can be really difficult to handle by yourself and talking to people who haven’t experienced it can make it feel very isolating.
I’m wishing you the best
Hope youre healing well. Hugs ❤️
Lady, you a badass. Let your badass body rest, it deserves it. Be nice to yourself, you deserve it too. You took straight shit odds and said “not today” to death and are gonna be with us.
Everyone else should be taking that as a hint to get a second opinion like you did!
Wow this is amazing!!! I can see how it would completely shake you. I mean some of life’s biggest stressors are marriage, divorce, and having children and those are not on the same level as what you have gone through! You’re doing all the right things. My advice would be just to be gentle with yourself, try to enjoy any small pleasures you can each day. For me that’s a really good cup of coffee, listening to my favorite song, sitting in the sun for a few minutes, watching a few funny reels on Instagram every day for a good laugh, calling someone I love for a little conversation, having houseplants, taking an art class…there are so many small things to enjoy. I should add yoga, I love the way I feel after a class. Oh and having a freshly made juice after, it just feels like nutrition is going to all my cells. But seriously I’m so glad for you and sending you my very best wishes and congratulations on beating cancer. You’re extremely strong
You are amazingly strong, and I’m so happy you’re still here to tell your story. I wish you all the best in life! It’s okay to feel unsure, it’s okay to not be okay. Just keep up the amazing work.
You nearly died and you’re feeling like you’re disappointing people by putting weight on (which I promise you, you are absolutely not, the people who love you will be delighted and astonished you’re still here AND recovering after a terminal diagnosis)… I ask, have you discussed these feelings with your psychologist, because man you’ve been through some shit. Reach out to survivor groups as well – they will know everything you’re going through and have been through, and will help you through now. Well done boss, you’re still here, what a gift <3
Congratulations on your triumphant victory against cancer! The weight gain is most likely from the mirtazapine. I was on it for two years and gained sixty lbs during that time.
The constant hunger is because mirtazapine causes leptin resistance. Leptin levels, in the ideal range, are what signal your body that you’re full. Once you’re out of range, you experience a hunger that never ever ends no matter how much you eat.
I’ve been off the medication for 3 months and my hunger signals are finally normalizing, I’m down 20lbs so far. I wish my doctor had told me that this med causes weight gain. The bigger I got, the worse I felt, and the more they increased the dose. It was a vicious cycle. I hope you’re able to find a different med that works for you.
It’s okay not to be okay. You might see if you can find some appropriate trauma talk therapy, because what you have been through is trauma. Can you see if the NHS psychologist can help you find something?
I saw you were shy to reach out to support groups, but I think you might find them helpful. It’s really nice to be in a space with people who have been through or are going through part of the same journey.
Overarchingly, your feelings are valid. While I’ve not been through your experience, I have been through a similar trauma. Everything is supposed to be “okay” now, but my body is still in fight or flight. That’s a perfectly normal response to something this traumatic. I’m also trying to learn how to be “normal” again.
You are allowed to feel everything you feel and you dont have to force yourself to be grateful. You have been through a lot. Just be gentle and nice to yourself. Dont judge yourself and how you feel. I am sending good wishes your way and wishing you find joy
That’s a hell of a lot to go through and then try to go back to “normal” life. Facing death and basically torture (just because someone isn’t doing something to you with the intent harm doesn’t mean it doesn’t feel like torture) absolutely changes a person and then you have to take those changes and figure out how you fit back into your normal life. Things won’t be the same because you aren’t the same. You have to give yourself time and space to negotiate this.
I found that holding on to the past as a whole didn’t serve me well because I could never get back there. I was never going back to who I was and life had moved forward while I was sick. My friends grew up, my peers got promotions, a half a generation of culture happened that I didn’t engage with. I had a lot of anxiety about all the things I missed while I was in survival mode and how far behind I was. With time and therapy, I’m getting less attached to life as a linear progression that I’m way behind in and more towards each moment being significant. There’s an Eagles song that makes me cry every time I hear the line,”maybe someday we will find that it wasn’t really wasted time.” I’m still working towards that.
The transition back to real life will always be stressful. And it’s a very human thing to experience. Lots of people dip out of life to take care of a relative, or raise kids, or travel. Like most things, that gets easier as you get reacquainted with your new normal. Give yourself time to figure out who you are, what you want, and how that fits in with your life. Give yourself time to be stressed and lost and overwhelmed. My process was very slow. I initially wanted to keep my trajectory exactly as it was and held on to that for a couple years. Then slowly I realized I wanted different things and so I worked on building a different life.
The neat thing is that, despite everything being very hard and requiring lots of therapy and I’d certainly would rather have not gotten sick, I think I’m a much happier, satisfied, and intentional person than I was. Letting go of parts of who I was before and looking forward with curiosity is a pretty cool way to live and it’s taken me some great places. It’s not like, oh when you “come out the other side” it will all be ok, but more that there is some opportunity here. Like a silver lining.
Feel what you feel. It’s ok to be grateful and resentful or excited and terrified at the same time. For me, things did get easier. In time, I hope they will for you too.
(I was given 5 years in 2010 from a misdiagnosis. I’m chronically ill now, but for a while in my 20’s dipped in and out of “normal” and “sick” worlds often. The transitions always sucked. But I got through them and you will too.)
Could you speak to your Dr about changing the Mirtazapine to something else? It’s notorious for increasing appetite, and with long term use may increase your risk of insulin resistance. Something like Fluoxetine can support your mood without affecting your appetite this way.
You probably already know this but we now also immunotherapy treatments available for endometrial cancers (and more treatments being looked at at the clinical trials stage) so the future is also promising in that respect (I work as a cancer pharmacist in the NHS).
The book the Miracke Morning may make you feel better. The author Hal Elrod shares how he had a bad accident and cancer too. He also gives his menu af healthy foods to eat and says if you eat 89% healthy within 12 hours of the day meaning raw vegeatables, salad, whole grains good meat beef, lean meat meaning chicken, whole grains, unsalted nuts, almonds and walnuts, incl peacans, fruits too, then you can eat 20% of other less healthy foods, like chocolates, potato chips in reasonable quantity and other foods you like. The goal is to eat balanced and healthy theb a bit of other foods.
The transition out of active treatment is so much harder than you would anticipate and people who haven’t lived it rarely if ever get it.
I was in my early twenties when diagnosed with a rare cancer with low life expectancy. When I was first NED, I had an “un-funeral” as a way to mark how my relationship with my mortality was shifting again. A bit grim for some people but it helped me to talk more openly about how I hadn’t expected to survive and to be less accommodating to all the “forced positivity” that people shove at you.
Please be kind to yourself. You don’t have to downplay how difficult it is.
To be honest, support groups didn’t help me all that much, but I think this had a lot to do with my age at the time. Individual talking therapy with a therapist who had done a lot of end of life counselling helped a lot. And while I’m not religious, I did spend a lot of time exploring different mindfulness practices. This helped too.
Many years later, EMDR helped me deal with some of my medical PTSD. I know it’s not for everyone but it’s worth looking into.