Emotional health after cancer: How are you doing really?

Posted by azkidney57 @azkidney57, Oct 6, 2019

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?

Interested in more discussions like this? Go to the Cancer Support Group.

@loribmt

@dani349, I promise you’re not alone here and I wish I could reach through the computer to wrap you in a huge hug to help calm you. And I’m a great hugger! So please take a slow, deep breath and then exhale even more slowly through your lips. I’ve got you.
I think most of us are scared of the unknown, especially when we get a diagnosis with the word cancer in it. I don’t know about you, but I’m unfortunately very good at telling myself stories. I can fill my brain with all the worst case scenarios and they just never come true! What a waste of time and energy!
So I’ve learned over the years to not let my mind wander into that negative self talk. Because those dark thoughts are “What If” thoughts. And they are just absolutely wasted time and stress inducers. So my approach is If/Then. If something happens, then I’ll deal with it head on. Or I ask myself, “What if everything turns out great?”. We have that ability to change the self talk, change the narrative in our heads.
I’ve looked back on your initial post to see that you’ve been diagnosed with CLL/SLL. Blood cancer is my area of experience so I’d like to respond to your post in that thread and hopefully offer you some reassuring information about your condition. Both are very slow to develop. From my understanding it’s typically curable or manageable with treatment and can go many years before it even progresses.

Please meet me over here: https://connect.mayoclinic.org/comment/1042622/

What are things that bring you joy every day, Dani?

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@loribm thank you for your response ! Being at the beach in the sun and hearing the waves, listening to it rain. I'm gonna take your advice and try to think positive thoughts! I'm just so use to thinking negative not getting my hopes up that something good will happen ( childhood trauma) and when something good happens or I'm surprised at the result, I'm happy!! That way I don't get my hopes up ! And im now in the intermediate risk group per labs that I may need treatment between 1-5 years. But im gonna try. I like that thinking. Someone else in a post said they act like it never happened. I've started that also! Slow progress!

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@dani349

Omg! You just summed up alot of what I've been dealing with! I breakdown every time I go to my appts. Why? Because I'm scared of the unknown . Because every appt could be the one that rips the scale ! And it scares the shit out of me?! Yes I need a hug , because I don't have anyone but my self to hold me! And our Heavenly Father ! So how am I, scared...

Jump to this post

@dani349, I promise you’re not alone here and I wish I could reach through the computer to wrap you in a huge hug to help calm you. And I’m a great hugger! So please take a slow, deep breath and then exhale even more slowly through your lips. I’ve got you.
I think most of us are scared of the unknown, especially when we get a diagnosis with the word cancer in it. I don’t know about you, but I’m unfortunately very good at telling myself stories. I can fill my brain with all the worst case scenarios and they just never come true! What a waste of time and energy!
So I’ve learned over the years to not let my mind wander into that negative self talk. Because those dark thoughts are “What If” thoughts. And they are just absolutely wasted time and stress inducers. So my approach is If/Then. If something happens, then I’ll deal with it head on. Or I ask myself, “What if everything turns out great?”. We have that ability to change the self talk, change the narrative in our heads.
I’ve looked back on your initial post to see that you’ve been diagnosed with CLL/SLL. Blood cancer is my area of experience so I’d like to respond to your post in that thread and hopefully offer you some reassuring information about your condition. Both are very slow to develop. From my understanding it’s typically curable or manageable with treatment and can go many years before it even progresses.

Please meet me over here: https://connect.mayoclinic.org/comment/1042622/

What are things that bring you joy every day, Dani?

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Omg! You just summed up alot of what I've been dealing with! I breakdown every time I go to my appts. Why? Because I'm scared of the unknown . Because every appt could be the one that rips the scale ! And it scares the shit out of me?! Yes I need a hug , because I don't have anyone but my self to hold me! And our Heavenly Father ! So how am I, scared...

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@lls8000

@wlhickey, Your response made me laugh. "I'm great." When I fill out forms that ask me to rate my health from excellent to poor, I'm always stumped. Other than a note in my chart that says I have stage IV lung cancer my health is excellent. Today, I'm great.
I hope the roller coaster of emotions calms down a bit for you going forward. Everything that you are feeling is normal. Receiving more information soon should help too. Knowledge is power and helps to feel that you have some control over the situation, especially if you are presented with treatment options.
When is your next appointment? Are you seeing urology, or an oncologist?

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I guess both, waiting on CT scan then schedule surgery, I'm getting 2nd opinion first....I love that, how is your health? Well.... let's see... questionable!

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@wlhickey

Thank you so much!!!! I don't know yet the type yet. I'm full of varied emotions, right now I'm great lol!

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@wlhickey, Your response made me laugh. "I'm great." When I fill out forms that ask me to rate my health from excellent to poor, I'm always stumped. Other than a note in my chart that says I have stage IV lung cancer my health is excellent. Today, I'm great.
I hope the roller coaster of emotions calms down a bit for you going forward. Everything that you are feeling is normal. Receiving more information soon should help too. Knowledge is power and helps to feel that you have some control over the situation, especially if you are presented with treatment options.
When is your next appointment? Are you seeing urology, or an oncologist?

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@wlhickey

Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

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I'm a control freak and don't want to be told what to do but I finally gave in to the experts. They do this every day and they are usually caring individuals. When I gave in to them, I was less stressed and in a better frame of mind. Waiting results after 6 months and 35 radiation in mouth. It gets betterslowly. Prayers and success for you.

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Thanks for sharing your feelings and insight. I understand exactly, what you mean. While the clinics are taking care of the physical, the emotional side is so important. 6 months for me and results coming this Thursday. I have no udea what they will be. I'm a 77 year old guy and keep everything inside. Be strong I was always told. 35 radiations and 5 chemos later, this body is broken and trying to get 30 pounds back. When I need hugs, all the time, I turn to adult kids, grandkids, spouse and friends and they are here at once, sharing their energy
Sending positive energy to you...lots of love.

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Hang in there! I know its a Rollercoaster! I suggest you write down your questions. Keep a note pad close or start one in a notes app on your phone. I found at times I'd wake at night and think of things then ! Take someone either you whose tole is to ensure everything is snswered on the notes and to take notes on key things said in the appt. Sometimes when emotions or anxiety is high our cognition lowers and we think later " now what did they say about this"
Wishing you the absolute best care and healing

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@colleenyoung

@wlhickey, so many emotions! I know you have loads of questions. While surgery asap is being recommended, you have time for questions and, if necessary, a second opinion. Questions I would ask include:
- What type of cancer do I have?
- What grade?
- What are the treatment options?
- What is the effectiveness and the risks of each option?
- Where should I get a second opinion?

You can see more questions at the bottom of this webpage from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/bladder-cancer/diagnosis-treatment/drc-20356109

How are you feeling today? If you know the type of bladder cancer you have, let me know. I can connect you with others like you.

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Thank you so much!!!! I don't know yet the type yet. I'm full of varied emotions, right now I'm great lol!

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@wlhickey

Thank you for your honesty! I was diagnosed with bladder cancer today. I'm a mix of emotions!!!! I hands a million questions and none at the same time. Dr is saying need tumor removed asap, but do I get another opinion? Do I just go with the flow? I don't know what I feel!

Jump to this post

@wlhickey, so many emotions! I know you have loads of questions. While surgery asap is being recommended, you have time for questions and, if necessary, a second opinion. Questions I would ask include:
- What type of cancer do I have?
- What grade?
- What are the treatment options?
- What is the effectiveness and the risks of each option?
- Where should I get a second opinion?

You can see more questions at the bottom of this webpage from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/bladder-cancer/diagnosis-treatment/drc-20356109

How are you feeling today? If you know the type of bladder cancer you have, let me know. I can connect you with others like you.

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