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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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I went on a similar rant in another blog on this site saying many of the same things. After a Whipple procedure, seven weeks(!) in the hospital due to complications, and six months of the Folfirinox protocol, I have come to the conclusion there is nothing new OR normal about life anymore. My health has returned to about where I was except I wear a Libre sensor disc on my arm, check blood sugars frequently throughout the day, inject insulin four times a day, pop two creon 24K's with solid food, and cannot eat any sort of beef without some sort of severe upper stomach pain. Nothing normal about all that. But for me it is, and I just deal with it.
The best therapy I have found is to help someone else through their cancer treatment protocol. The downside is when you lose someone as I have lost two friends from cancer, the hurt is multiplied by the survivor guilt. The upside is you are able to offer something no doctor, nurse, friend, family member, or televangelist can offer. That being the gift of insight. The insight We are different from everyone else; We have survived a war and have the mental and physical scars to show for it. We hate the phrase "Be positive" because it more or less a platitude, and when someone calls me a "hero", I reply "A hero ain't nuthin but a sandwich". If much of this sounds contrarian and trite, it is because the only people who understand cancer are those of us who have been through it. I only tell everyone about my bout of pancreatic cancer; I carry much survivor guilt of those who have not been so lucky to survive this or any other cancer but no matter what the cancer battle is, it's the emotional and psychological effects of cancer that are the worst part of it.
To the survivors and fighters here I say this: "You are one of us now. We are different".
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11 ReactionsAmen to all of your statements. After the reality of the treatments is over, there is time to reflect - and sometimes obsess.
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2 ReactionsI don’t know how far out you are, but I can relate. My oncologist told me that I had every side effect he’d seen in his 30 years of practice plus two he knew were side effects from treatment but never seen. My attitude had to make a major shift. And the treatment almost killed me. I required hospitalization more than once. I realized earlier in my life that we truly have no control over what happens to us, only our attitude about it. I made it through the treatment but needed another attitude adjustment when I realized recovery would not be the fast process I’d always expected. I’m four years out now. I still have issues that may never go away. Recovery is slow, but I press myself to work at it. Due to neuropathy and lung damage from radiation I still have to take life slowly. I don’t have the stamina I used to, but stay with it. I was where you were, but I’ve slowly worked up to being able to do fun things with my family again. We all know that I’m still slow and need to rest from time to time, but we are together. Not only the patient lives with cancer, but the family has to make mental adjustments too. Good luck on your journey.
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5 Reactions@remington,
Your last sentence is a good summation to what many of us feel, " I just have to find new ways to enjoy it." Finding that new normal is a task, isn't it?
@ken240,
Your comment, "because I am task oriented. I have get used to relying on others, and that's hard, too." This comment is something many of us can relate to represents great insight.
@danno123
When you say, "it’s very debilitating and makes it hard to do anything." You are stating some of the frustration of chronic illness. Does the numbness create safety issues for you? For example, falling?
@ajfromchicago
Congratulations on recognizing that you can still do a lot of the things that you used to enjoy! It's also great that your wife is part of your support system. Have support is so important! You mention, "brain fog." That is a very disagreeable side effect from meds.
So, thinking about these responses let's see how we can:
1. Begin the process of creating a new normal.
2. Develop a support system (if it is lacking right now).
3. What can you add to your daily life to replace what is missing?
4. What can you personally do to help with brain fog? Any suggestions?
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8 ReactionsI guess, no I know, that I am one of the ”lucky ones”. I was walking at least four miles a day prior to my diagnosis as I was looking forward to reaching retirement in good physical shape. Continuing to walk has helped me feel better and likely also has assisted in making my chemo treatment (Folfox regimen for esophageal cancer) more effective. My wife, Melissa, has been very supportive and is my “rock” to keep me motivated and thinking positive I don’t know what I would do without her. My mental state varies; I think my attitude is good, all things considered, but I do get frustrated and angry, which may be due to the steroids included in my treatment. I am also working part time, and the brain fog is a real issue that I have to deal with. All in all, I cannot complain as I am in better shape than many. Good luck to all of you in this thread.
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7 ReactionsFor me is Lars I’m having to be tied to the toilet and all the maintenance freezing feet ringing earsCan’t feel my legs numbness in weird places it’s very debilitating and makes it hard to do anything
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6 ReactionsThanks for the response.
My biggest problem is the sever joint pain. I can't walk very far and as such can't do much. I don't want to go places because the walk from the parking lot to the venue is too much. I don't hunt anymore. I only sail on calm days ... Secondly would be the fatigue which has lead to falling behind on simple tasks including organizing my business affairs. Third would be urinary issues. That's pretty much the rank order of what I wish I could fix.
Yet, I'm alive and my oncologist says I'll probably stay that way for awhile. Now I just have to find new ways to enjoy it.
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2 ReactionsI am 66 and due for my second Folferinox tomorrow, but I feel ok today, but know that I will feel terrible for several days. I feel like I have to do everything I can today before tomorrow. But, I can't do everything, and it's hard because I am task oriented. I have get used to relying on others, and that's hard, too. It's a big unwanted lifestyle change for sure. Best wishes.
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1 ReactionHello @remington,
You bring up such a good point! Cancer patients (or any patients dealing with chronic illnesses) have a change in lifestyle and need a place to discuss those feelings of uncertainty and frustration.
Cancer causes a change in our perspective. Whereas, we might have had physical outlets for stress, we now find ourselves needing to schedule social and physical activities around treatment appointments and the reality of fatigue.
As you are comfortable sharing and kicking off this discussion: What has been the biggest change for you?
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2 ReactionsWOW! Talk about a Higher Power at work! Just 20 minutes ago I answered the Connect survey and said I needed more emotional support and this 3 year old thread pops up.
I received my advanced prostate cancer diagnosis almost a year ago, started hormone therapy in Dec, radiation in Feb, and second hormone in July. Radiation went very well and I actually was extremely positive about everything until about two months ago. While it appears the cancer may actually be under control I am having trouble dealing with the side effects of treatment. I'm always tired, sever joint pain, some minor cognitive issues, weight gain, urinary problems.... On top of it I really don't trust my urologist. Her treatment plan is working but she didn't communicate well to prep me for what laid ahead.
With all of the doctors I've seen it was my primary physician who noticed I seemed depressed and discussed possible treatments.
Being a 68yo male unable to do so many things I used to enjoy has been stressful. I'm glad I may have found a new outlet to discuss my feelings.
This is going to be an unpopular opinion, but please be careful about bringing companion pets into health care facilities. Many people are highly allergic to animals and don't expect to go to a clean environment only to be made sick by someone's pet.
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4 Reactions