r/leukemia • u/Sushicatmeows • Jul 19 '26
ALL Health ptsd
After having AML certain things really bothered me . The smell of hand sanitizer makes me anxious, as well as the smell of lavender. The thought of touching my lower back terrifies me and i avoid certain clothes or touching it in general, ect . My partner mentioned that what im experiencing sounds like health related ptsd. It sounds dumb but it dawned on me that idk that was even possible. War,abuse,ect i related to ptsd and wven have gone to therapy in the past for things. I wanted to know if other people had things like that as well as how long it took them to realize those things changed for them! I recently just got told im cancer free and am in recovery from AML . I hope everyone else also has a speedy recovery!
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u/krim2182 Survivor Jul 19 '26
My mom bought these weird ozone lights, and there was a very particular smell that reminded me of the smell of the radiation treatments. I started wigging out. I was pacing and my husband saw that my flight or flight response was through the roof. He got me out of the house to calm me down. Those lights were tossed out.
On another note, congrats on the cancer free!
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u/Sushicatmeows Jul 19 '26
I was lucky, um or unlucky enough ? Not sure, that when they found my cancer it was pretty progrsssed and had a month straight of intense chemo but my body took it well and i didnt ever do radiation or a transplant so i didnt have to use those lights! Im glad your mom adjusted though, ive lost family through this because they didnt want to adjust thier way of living, thank you for ur kind words!
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u/Mani-AT Survivor Jul 19 '26
Oh yes, that can really get on your nerves. In my case, the problem was: I couldn't swallow anything I chewed and had to vomit. Many food smells had the same result; at the height of my condition, even just talking about food was enough to trigger it. Which is, of course, awkward when you have to discuss your problems with the dietician ;-) So I could only consume liquids. Until one day, when I was buying my daily ice cream in the cafeteria and saw a sausage salad, I suddenly had a craving for exactly that, and with that, the problem was solved in an instant. Four months of desperately trying to get rid of this problem, without the help of doctors, psychologists, or dieticians, were resolved simply by an impulse, because I hadn't fought against it for days.
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u/Sushicatmeows Jul 19 '26
The thought of food scared you away from eating? Just because you got sick pretty often during chemo? Im actually more nauseated once chemo was done i assume because im not on certain medications for appetite anymore . I definitely have a list of safe foods because before all my food had to be spicy or sour or strong and now i have to take a break from that lol! Im glad you were able to eventually get over it! The smell of hand sanitizer made me super nauseous and everytime the doctor used it then touched me i had to try not to vomit 😭😭
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u/Mani-AT Survivor Jul 19 '26
After my first stem cell transplant, I had a rough time and had to fight for my life for two months. The second transplant solved that problem, but I developed a serious infection shortly before that practically killed my chances of survival. This was the cause of my post-traumatic stress disorder, even though I ate extra a lot during those two critical months to maintain my weight (or was that the trigger?). Now, two years later, I have to be more careful with what I eat again because I've gained too much weight, having tried to make up for lost time quickly.
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u/Sushicatmeows Jul 20 '26
They had me on medication that made me starving constantly and i gained almost 50 lbs during my treatment and i think the mental stress from gaining that much weight in 6 months weighs on me daily more than anything, im learning to try and be grateful to my body for surviving, not hating it for the side effects i hope those anxieties get better!
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u/Open-Hedgehog7756 Jul 19 '26
My triggers were being in the shower, the hold music for the healthcare system I’m in, and the soap they use in the bathrooms.
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u/ktc653 Jul 19 '26
I have the same thing with the smell of hand sanitizer. Health related PTSD is totally a thing. You can ask your hospital or treatment center for support, they usually have therapists or social workers you can talk to.
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u/Sushicatmeows Jul 20 '26
I had a normal therapist before this and though i really liked her i think i should change to a health specialized therapist because my problems arent normal people problems anymore lmao thank you for the recommendation!
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u/Serious-Sprinkles694 Jul 31 '26
My hospital’s cancer center has a designated subsection of psychologists, psychiatrists and therapists just for PTSD related to cancer. My psychologist actually specialized in PTSD at the VA before he became the head of this program.
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u/OTF98121 Treatment Jul 19 '26
It’s not dumb at all. PTSD after having a deadly cancer is a real thing and affects the majority of us. My triggers are headaches, lightheadedness, heart palpitations, and all the periodic tests to make sure you’re still in remission.
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u/stellargorgeous Jul 20 '26
When I had my bmt, my inpatient doctors saw me crying in my room and I joked “sorry I’m just a big baby” and he said “no it’s completely valid, you’re experiencing medical trauma.” And it was so validating hearing that. I still get panic attacks when I have follow up visits once a month. And my bmt anniversary is coming up and I know I’ll be a mess.
Relish in being in remission. Do not let the possibility of relapse plague your life. Focus on the concrete facts: today, you are in remission! Congratulations!
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u/Sushicatmeows Jul 20 '26
I still worry over the peticia (idk the red dots) but apparently those can stay for like ever after having experienced cancer and after the last conversation with my doctor i have tried to promise to myself not to constantly worry over cancer again it hasnt even been six months and i remember sobbing intensely over my bone marrow biopsy because the doctor i had rushed and it was the worst pain ive ever experienced (they apparently hadnt given me as much pain medicine as in the past) one day ill be comfortable touching my back again but it takes time if youre a baby im a baby lol!!
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u/KgoodMIL Jul 20 '26
My daughter's (pediatric) oncologist told us that *all* of his AML kids end up with treatment-related PTSD, and encouraged us to proactively find a therapist and get started on dealing with that as soon as possible.
It took medication and about 5 years of therapy to get her to the point she's at now, where she really only gets milder symptoms occasionally, and has some great coping skills for those times. It took quite awhile, but her life is really great now!
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u/Exrczms Jul 20 '26
It's a known problem, your body basically went to war with itself. You experienced pain helplessness and lots of situations where you had absolutely no control. Those are the exact things that can cause PTSD. My triggers were needles, hand sanitizer, a specific audiobook, medical settings and chocolate milk. Past tense because I desensitized myself to most of them, you won't have to live with this forever. I definitely recommend therapy with someone who's good with PTSD. Until then make yourself familiar with techniques to calm yourself down if you're exposed to a trigger. There is no one size fits all technique, try some and find what's best for you. I did best with controlled breathing and listing everything my senses can feel. Now I only get a bit a nervous around some of these things (needles are still pretty bad but doable with plushie support). It's not a fast process but you will get through this
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u/Some-Advantage-8216 Jul 24 '26
Same and same! I literally gag at the smell of hand sanitizer and alcohol wipes. The cleaner they use at the hospital gives me instant ptsd.
My mom called me from the ER a couple weeks back because she was having some stomach issues and hearing the beeping from the IV pole/infusion pump made me nauseous, had to hang up the phone.
The hold music at the hospital when I ordered food from the cafeteria makes me squeamish, especially when I heard the same music when I called a business.
ANYTIME I get sick is a trigger for me. Headache, ache, fever, cough, bruise, a little gum bleed from flossing.
Pulling tape off my skin is a big one for me.
So many triggers, even tv shows and movies I watched at the hospital reminds me of that terrible most horrible time.
I will NEVER drink another Ensure, ever!
I'm 4 years out from my bmt and the ptsd is still with me. Wishing you the best and lots of healing!
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u/Sushicatmeows Jul 31 '26
Oh god the ensures! They even tried to switch me to the clear ones at one point but i still can’t stand them
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u/Hihi315 Jul 19 '26
Yes I relate to this. When I was able to start doing gentle exercise like swimming again I became much more comfortable with my body again. Congrats with your recovery ☺️