Emotional health after cancer: How are you doing really?

In 2003, at the age of 25, I received a sudden and unexpected diagnosis of lymphoma. The situation was dire, with the location of the lymphoma giving me only about three days left to live. Swiftly, I underwent surgery and began chemotherapy within a week. This abrupt turn of events left me grappling with post-traumatic stress disorder (PTSD).

The speed of the diagnosis and subsequent treatment left me little time to process the enormity of the situation. Despite returning to school and work just three months later, I found myself harboring resentment and anger at the drastic shift my life had taken. While others admired my perceived strength, I struggled to connect with the reality of facing cancer. Pity from others became a source of frustration, making me less sympathetic to those complaining about illness. Compassion became a conscious effort for me, I don't want to feel like this.

Even now, years later, I live with the lingering fear of another blood cancer. I find it challenging, given the traumatic nature of my past experience. The memories are vivid – the red infusion solution pumping through tubes, triggering unexpected reactions like the taste of metal upon seeing someone drink red Kool-Aid through a swirly straw and getting nausea.

Recently, a routine blood workup revealed dangerously high Hemoglobin and Hematocrit levels along with the presence of the JAK2 mutation. The fear is palpable, and I'm grappling with anxiety about what the future holds. Despite my partner's perception of me as a hypochondriac due to annual blood work anxiety, each test serves as a stark reminder of the fragility of health and the ongoing battle against my fears.

Wow, truer words were never spoken. I'm amazed at how articulate you are about it. Kudos.

I'm a complete sniveling sobbing useless mess of excrement. And I'm sick to death of being sick to death. I've had PTSD most of my life because of horrifying experiences at the hands of doctors. I have never been able to just "let it go." I can't forget, and that makes trusting doctors very difficult. I know being a doctor is one of the hardest jobs on the planet. But respect is a two way street. If only doctors listened more, and I mean TRULY listened - appointments would go faster and treatment would be more successful.

It's not just you! I think we all experience it to some extent .
Early on in my cancer journey someone said "so good the cancers gone!" Internally, I realized I didn't feel that way. That to some extent it was always going to be there. But then I decided that I wasn't going to let it run my life and make decisions for me... I wasn't going to spend more time focused on " it" then I had to. It wasn't going to be an idol in my life. I began to shift my thinking to this... as inviting me to live ... to be fully present and engaged with the life that has been given us ... before it passes us by.
Fully present in each moment as much as I can be.
Cancer dx is a form of trauma and we all handle trauma differently at different times. It's about building our resilience now... doing enjoyable things, grounding in nature, positive relationships healthy habits, releasing stress.
Wishing you the absolute best days ahead!!

I couldn't agree more, it is so true. Once you have or had the "Big C" every little thing happening with your health, No matter how simple it might be it becomes a threat sending you into an emotional roller-coaster that is ingrained in you forever....it's our new Normal.

Even if you try to stay positive, even if you feel good, even if your cancer didn't need any treatment when first diagnosed or afterwards the fear of the Future is so REAL..

"NO One understands the Fear, Insecurity, Sadness, Anxiety and Frustration that most people feel unless they have walked in their shoes".

So best wishes, love and prayers to everyone here that are trying their best to be happy, healthy and positive under the circumstances.

My advise to all of us is: Smile and be Thankful for today, Pray for tomorrow and Try to mitigate as much as possible those negative thoughts that will come our way sooner or later, we got this!

This reply is for an old chat but:
I agree with the meditation app suggestion. It helps a lot to relax you or even to help you get some sleep. I listen to one from "Abide" on YouTube. They have so many to choose from on their site. Or try others with a non-religious theme, they help too. I put it on every night, I tend fall asleep calmly just listening to their stories, I love it.

You are so right! After going through the double mastectomy, chemo, Herceptin for a year, infections related to implants, reconstructive surgery I have lost who I used to be and I am trying to find out who I really am if that makes sense. I am afraid of every little pain or change and every time I have to go sit on lab results or a scan. There should be some type of help or support for after all the treatments. Maybe it’s just me

Omg.... i am so sorry you are going tbrough this! I can only relate in terms of it being rare & drs not knowing what to do or caring about you as a person... no one should have to deal with that

I'm so very sorry you're going through this. It is Definitely a path for us all, unfortunately. I was diagnosed with breast cancer Sept 2021, had biopsy soon after mammogram, then started with the genetic testing & PET scans etc. Then in January 2022 I had double mastectomy with immediate reconstruction afterwards. Lord you talk about a road! All my family members on my mother's side were breast cancer patients. We lost 3 of them. But watching family going through it, id always was scared I'd whined up like them. Was petrified to get examined to fear the worst. Yes, I agree, I do have PTSD to an extent as the result of everything.
After finding out I have the CHEK2+ gene mutation & then finding out it runs rapid in my mother's side, I was a little relieved to know but scared to death what the road lied ahead for me. It's a multiple cancer gene unfortunately. I had already had skin cancer the year before my breath diagnosis. So the same year as my surgery, I was having issues swallowing. Got examined with ultrasounds & found a very large nodule on thyroid. That too runs in family.
But it was after my gallbladder was taken out on Christmas that I demanded more testing on my thyroid due to symptoms I was having. Come to find out it too was cancer! So I had a total thyroidectomy in April of this year. Ugh.
Already going through the emotions from having my breasts removed, I now couldn't talk or swallow good without choking. So after some therapy & time, I was given OT which helps a HUGE AMOUNT on the swelling they didn't tell me I'd have after breast implants & she tackled the huge swelling I had after thyroid removed on my throat. My OT is a Godsend!!💕 I suggest you see an OT if you can if you need massaging for swelling or soreness.
But then during all this crap, my husband's family - brother & family - move in with us due to pandemic & his mom has a stroke & I'm thrown into caretaker mode! And have been ever since & currently. Ugh. It's been a huge struggle but I manage best I can. I pray alot but I too feel drained, ugly, and just plain sore & hurt a lot. But I gotta keep moving cause others depend on me.
God bless you & I hope you're emotional health gets better as well.
But I agree...not enough time or concern about cancer survivors and their mental health.

I can totally relate . Since my husband’s rare cancer came back 27 years later ….. After receiving excellent care , but a piece of cancer is still inside his skull , that could
not be removed . As we wait between scans etc…… doctors have said to me “Why do you look so sad “. Most have no bedside manner at all! I totally agree with you !

@uniquetheredmuse, I'm so glad you are feeling better today. It's hard to deal with cancer, and stress too!