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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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@scottbeameup: Cancer is the pits! I feel your discomfort in being forced into life-altering health decisions! Just remind yourself that you have made the best decision and will continue to keep updated on treatments available… just in case of tumor progression. Knowledge will give you confidence.
You are the same nice person you have always been and cancer doesn’t change that! The future is unknown for everyone, but we have constant reminders of our mortality due to our diagnosis. Hang in there - we can be our best each day! I just passed my 3 yr mark and about to finish a series of infusions hoping to add yrs of good quality life. Best to you…
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8 ReactionsMy last post on this topic was back in August. I was in the thick of Androgen Deprivation Therapy (chemical castration) for prostate cancer and it felt as if someone had reached into my body and pulled out my soul and I was just watching this other person who was me, but not me, walking around. The other me cried A LOT and got angry A LOT.
The medical establishment basically said "yeah, those are side effects" so I decided, on my own, to reach out to a psychotherapist and have been working with them for about four months now and things are much better. I began taking a mild antidepressant which stabilized the crazy mood swings caused by the lack of testosterone (and estrogen).
My treatment ended October 31 and I am going for my first post-treatment testosterone test next week. It's too soon to tell how much T, if any, came back. That said, however, I know *something* good is starting to happen because the brain fog is beginning to lift and my insomnia is getting better.
In December I will get my first post-ADT PSA test which will be an early indicator of whether the treatment worked or not, with tests every three months for two years. I have a lot of anxiety about this because if the treatment doesn't work I will have to choose between ADT for life or accepting a shorter life and, remembering how bad my QOL was, I'm not sure which one I would choose.
The hardest part right now is not knowing whether an ache or pain is just an ache or pain, or is it a side effect of treatment, or is it cancer coming back again? In the BC (before cancer) times, an ache or pain would just be an ache or pain.
All of that said, the past week has been really good. I've been exercising outdoors a lot, seeing friends I didn't have the energy to see during treatment, etc.
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7 ReactionsAbsent visitors
Not even ask how are you doing, thats great. Sometimes happen distant family members are afraid of medical centers ambiance and prefer not to be incumbents of your well bring. So asking "how are you doing" magical question is too much when other people hopefully are living their non-concern about health issues lifes.
I certainly wish you the best on your new journey. For me, almost 20 months, my stage 4 prostate cancer has me on forever meds. Although at times is so hard, just take one day at a time. I remember getting the "news" and that is not easy to go through. Take to heart when you are having a good day so if and when a not so good day comes along, you remind yourself that good days do happen. Not sure if I want to answer the original question as to how I am really doing. I guess by telling myself that it's a mix of good and not so good days, I'm answering the question. Rambling a little here but I do wish you all the best.
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4 ReactionsMy prostate cancer treatment involved lowering my testosterone to zero which, by itself, can cause depression. Add that to a cancer diagnosis and no longer being a man (no sexual function, no libido, body hair all gone, muscles gone, etc.) and I was spending hours a day crying and often thought ending my own life would be preferable to the effects of treatment. My treatment ends today with my last dose of Orgovyx but it will be anywhere between 3-18 months before my testosterone returns, if it returns.
When I reached the point where I was actively planning my death to look like an accident (so the people I love wouldn't have to deal with the grief suicide causes) I decided to at least try to get help. I joined a support group, found a prostate cancer mentor, began seeing a psychologist and started taking an antidepressant (Wellbutrin) that would not interfere with sexual recovery after treatment. I also, of course, poured everything out on this message board and received a ton of responses that made me realize I'm not unique in this awful journey no one wants to go on.
So far, it's greatly helped. I'm nowhere near the happy roll-with-the-punches guy I used to be but I also no longer stay curled up in bed for hours crying. The psychologist has helped me see that most of my life is still the same as it always was: I have a job I like, people who love me, lots of exercise, a good diet, hobbies and volunteer work. Sex isn't great and that was a HUGE part of my life so I'm still grieving that and hoping against hope that my sexuality will return to being great instead of just adequate like it is now, but everything with prostate cancer is slowwwwww, including recovery from treatment so I'd say overall I've bottomed out and am now swimming back to the surface.
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7 ReactionsI’m newly diagnosed so it hasn’t really set in yet. It’s been 2 days and I am a wreck . Don’t know what to expect yet. But I feel you. A hug and maybe a comforting word or two from the caregiver would mean more than anything. Thank you for sharing your thoughts . And good luck to you. I love you!
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6 ReactionsTrue that most people don't want to know. I can see in their eyes they don't really want to know. Sometimes it's because they don't want to face their own mortality.
When I found out I had cancer my neighbor/friend of 15+ years happened to be there. I was emotional and told her why (she didn't ask). As I was telling her what was happening she answered her cell phone(!) . I knew she was not an empathetic person so I should have known better. Since then she has never asked about it.
I have an appointment with a therapist at my oncology office next week. Long overdue since all this started. It is hard.
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5 ReactionsThx for asking. What my husband and I have learned that perhaps “cancer free” means only at that moment. Sadly, NSCLC seems to be ongoing, popping up again at any moment even tho you remain diligent with treatment. Sigh.
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2 Reactions@azkidney57 Thank you for sharing. Reading your post made me realise how very very fortunate I have been with my medical team from the get go, including the wonderful nurses in the infusion centre I attended fortnightly for a few hours then saw again for my 46 hour take home pump to be detached. My mental health and how I’m going personally has been front and centre at all times with my oncologist, nurse practitioner and GP.
I’m over 2 years NED after a full on treatment plan. Thank you to all those medical practitioners who DO get how important in the fight the mind is. Big shout out ♥️
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2 ReactionsHello @abdullah and welcome to Mayo Connect. I appreciate your post on anxiety and cancer. You are right when you say that "everyone's journey is unique."
As this is your first post on Connect, please share as you are comfortable doing so, a little about yourself. Have you personally had an experience with cancer that you would like to share?
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