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Emotional health after cancer: How are you doing really?
It struck me after my recent appointment with my oncologist how less focus is put on the emotional aspect of a cancer patient. I go to clinic I am checked in. I am asked in passing how I feel. Mostly I just say I am OK. It’s all routine. I saw my doctor he examined me we discussed the plan of action for my scans blood work. When a cancer patient is asked a how they feel often it’s “medical”. How do you “physically”feel.
Now that I am a “routine” patient at my cancer center no one stops to ask how I am “emotionally”. Don’t get me wrong there are people you can talk to. I feel things become so routine and some days I feel less emotionally “fit” than others. I never like going to the cancer center it stresses me. I am better about it but it is still a source of “depression “ and anxiety for me. When I feel this way I need routine. On my most recent visit I was given an “wrist band” to wear. I felt “branded”. Not only do I have to hold on to the appointment reminder “disc” now I am given an wrist band. It bothered me. So if you are a patient you can easily be identified by the disc and now and a wrist band. That my sound nit picky but I notice everything. If it bothers me it must bother other people as well. What would be good would be a place for patients, all patients, just patients to check in.
Ask us how we are today. Ask how we are coping. Ask care givers who bring in patients how they are coping. They should have “therapy” dogs on patrol. I love dogs and I know that would comfort me. It would take away some of the anxiety I feel each time I go to the cancer center. I am still “new” to my cancer. It’s been 6 months since my cancer diagnosis perhaps that is why I experience so much anxiety. I haven’t “accepted “ my cancer. It isn’t OK I have it. I am working through this.
Asking me how I am is a loaded question. Physically I am OK. Emotionally on some days I can be a bit of a “wreck”. The mortality aspect for me is a source of great distress at times. I realize I need to have perspective. Take one day at a time. Some days I could use a hug because even though I am adult it is scary to go to the cancer center and some days the child in me is more on the surface than the adult me. So I need to reel in the child and let the adult take hold.
Someone suggested mantras. I use one when I feel I need it. I tell myself it will be OK. It’s just a visit it’s just blood work it will be OK. That helps.
I believe all cancer patients have PTSD to some extent. I know I have it. This experience has traumatized me. Feeling sick, having symptoms, the diagnosis, the surgery, the recovery, the appointments, the blood work, the scans, the exams, the probing, going back to work, trying to regain “normalcy”, realizing there is a “new” normal, learning to live life the best you can. It is a bit much. It does get better and has gotten better. So when I am asked how I am doing it is a complex question and the answer on some days is convoluted.
At work people always ask how I am no one knows about my cancer because that is my busy but people know I was “sick”. I answer I am OK and move on because the question for me is complex. I would like to respond “ are you asking how I am physically or emotionally?”. No one has time for that. It takes too long.
My close friend asked me how I was and she and asked, “how are you really?”. In this “instant” and mostly impersonal world I am learning how the simple things, the unspoken words, the touch or hug, are often the most impacting. Cancer is teaching me to pay attention to what is around me, next to me, near by. Life is so precious don’t waste it.
How are you feeling today? How are you really? Do you need a hug? Are you feeling sad today? Is there something I can do for you right now?
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This is spot on. As a cancer patient myself I am having all these feelings too. I wish there was someone who asked it too. Good luck
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3 ReactionsVery accurate. My wife and I have this discussion many times. I am not the same man I was prior to my diagnosis 1 year ago. While I am receiving excellent care physically, emotionally I am not handling the diagnosis well. When mentioning this to one of my doctor’s his response was one of surprise saying “ oh? Why is that?”
Huh?! Seriously doctor?
Another doctor 10 minutes after telling me I have a fairly aggressive form of cancer said in response to my shock “oh well, we all have to die sometime.” I have not fully recovered from that insensitivity yet. Emotionally I have always been a strong person but now I am much more emotional and in tune with feelings. Perhaps medical school training should address this important aspect of health care more seriously.
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10 ReactionsWhenever you begin to worry and get overwhelmed, turn to God. I have had a rough year with many scans, biopsies and conflicting diagnoses among doctors. I, too, have cancer and somehow accepted it. I feel I can handle whatever comes my way with the Lord at my side. Trust in Him! You are in my prayers for strength and courage. We can get through this!
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3 ReactionsAfter calling the clinics in eau clair & lacrosse.... omg its like a weight has been lifted! They answered every concern without me asking a thing!!!
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1 ReactionI wanna thank everyone!
I can totally relate! First of all, I am sorry you are going through this. Here is what I learned starting a year ago. My cancer, a NET tumor in the breast, is so rare that none of my practitioners or specialists I consulted had ever seen it clinically. It has a poor prognosis. I felt my doctors had zero interest in me as a person. (With the exception of a good PCP who already knew me). So, OK. I had to look outside of cancer world for support. Luckily I have friends, family, a PT, a therapist, an interfaith group, and more. All of my usual supports kept on helping me. But frankly I've avoided imagining I can get emotional support from within the medical profession. At first I was disappointed and kind of keeping score and then I just gave up. I'd say I regard my doctors like car mechanics except I've got a nice mechanic who frankly seems to care holistically more about my car than the medical system cares about me! I don't think these practitioners are bad doctors or bad people or anything like that. I would just suggest getting external support, like this great chat.
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4 Reactions@uniquetheredmuse, I'm so glad you are feeling better today. It's hard to deal with cancer, and stress too!
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 !
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1 ReactionI'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.
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4 ReactionsOmg.... 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
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