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: Managing Symptoms Support Group.

@azashley

I understand totally 💯 %
I am a 6 year survivor of endometrial cancer (full hysterectomy, 6mo chemo, 6weeks daily radiation Treatments and generally am my same optimistic self until about a mo before my every 6 mo Pap and bloodwork; then have to wait about 2 weeks for results. It’s always harder for me to sleep and feel pretty anxious as I await results.
I also still have Chemo port in my chest I think because my main oncologist doesn’t believe I will not have cancer again at some point. Have to get a port flush every 3 mo.
So though I have my energy back I don’t have my lovely blonde hair any more; it grew back but is darker and so thin. Eye lashes haven’t grown in much either.
I think my hubby, family and even female friends all think I should be lucky to be alive. Well I am but everything I went through was difficult and though they tell me I “look great” I know I don’t look like I used too…also have after affects from so much radiation with dental problems and lots of bone pain.
I am sad to say but I think if you have major surgery, chemo, and radiation you probably live with some psychological damage for the rest of your life.
I believe in telling the truth and not sugar coating any of this
Wishing you the best < 3

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Hi @azashley I just have to ask…How do you feel about still having your chest port that you haven’t needed for 6 years? Mine was removed within 6 months after chemo/transfusions/treatment for my bone marrow transplant. Once it was gone I felt like I was finally able to move on and not feel so much ‘the patient’. I also thought IF I ever need another then it will be implanted at the time.

I admit it having it in place made blood draws easier when it was no longer needed for chemo/meds/infusions. But I was happy to roll up my sleeve because I felt pretty liberated from no longer having to deal with the cumbersome lumens dangling off me like a cyborg. 😅

Would you miss it if it were gone or have you ‘grown attached to it”? No pun intended. 😅
By the way, today is my 4th ReBirthday from my transplant! I’m celebrating big time.

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@flgirl

Thank you for your reply! I agree, we will never be the same, but I don't live with it in the front of my mind daily. That isn't living. I was diagnosed with MGUS 18 months ago. My thoughts are, I survived once and will again. I see the oncologist/hematologist for labs every 6 months. The new health issues that keep popping up, and life in general consume me, but I just keep looking forward, and up. Positive attitude and mindfulness are a must. Hugs and prayers for you, and all others here!

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Thank You 🙏
I didn’t mean to imply I live with it in front of me daily but there are times it does really hit me
I am an Alternative Therapist specializing in Hypnotherapy, Breathwork and other modalities. I have just reopened my office since the pandemic and I gain some of my greatest joy from helping others through their life challenges.
Wishing you all the best

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@loribmt

Hi @azashley I just have to ask…How do you feel about still having your chest port that you haven’t needed for 6 years? Mine was removed within 6 months after chemo/transfusions/treatment for my bone marrow transplant. Once it was gone I felt like I was finally able to move on and not feel so much ‘the patient’. I also thought IF I ever need another then it will be implanted at the time.

I admit it having it in place made blood draws easier when it was no longer needed for chemo/meds/infusions. But I was happy to roll up my sleeve because I felt pretty liberated from no longer having to deal with the cumbersome lumens dangling off me like a cyborg. 😅

Would you miss it if it were gone or have you ‘grown attached to it”? No pun intended. 😅
By the way, today is my 4th ReBirthday from my transplant! I’m celebrating big time.

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I don’t like having in at all but my oncologist is on the conservative side. Plus, Since it’s one more surgery and I have other health challenges that have required surgery,, and possibly another this summer I have elected to not add another to my list.

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@azashley

I don’t like having in at all but my oncologist is on the conservative side. Plus, Since it’s one more surgery and I have other health challenges that have required surgery,, and possibly another this summer I have elected to not add another to my list.

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That’s understandable…no unnecessary surgeries. Wishing you good health. ☺️

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I get it! It has been 15 years since my diagnosis and last radiation and chemo. I had stage 3B cervical cancer, a wonderful give from my now ex-husband and his sorted affairs, one of which was with a prostitute. It didn't reveal itself until years later; sits in the spinal cord until the body is under the right conditions and then begins to grow. I thought I was going through menopause. I was nearly 40. I had taken my 3 children and left him; moved to Georgia to live with my brother and his family until I could get on my feet. Anyway, I began hemorrhaging one day while doing mission work. I knew it was time to see a doctor. The news was absolutely the hardest thing I had to accept! And my children....how they suffered! I had a wonderful oncologist and he gave me hope. I finished the treatments (tumor was too big to operate on. It has reached the pelvic walls) and began to heal. For 3 years I did well. Then the long-term side effects began to set in. I wasn't told about those. Would not have mattered. My colon and bladder were in the radiation field. I now have radiation enteritis. It is similar to IBSC but there is no cure and no repairing it. I had no pain for 3 years. Now I live with pain on a daily basis. At times I have ended up in the hospital to manage the pain and make sure there is no blockage. I've learned a lot! CBD helps me with the pain and inflammation (not the crap you buy at the gas stations, etc. Get the quality stuff). But what doesn't show up is the anxiety, the PTSD, the depression. Now I have osteoporosis in lower back - in the radiation field as well. Sometimes I can't cope and I just weep. Not going to lie, I sometimes think it would be better if I could just check out. But I know The Father has a reason for keeping me here, so I push on. I walk every day if possible. I pray a lot. I have a friend who has walked beside me all the way; she too is a survivor. I spend as much time with my grandchildren as I can - still working. It isn't easy. But for today, I'm getting through. Tomorrow is always up for grabs! So, you are not alone!

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@loribmt

That’s understandable…no unnecessary surgeries. Wishing you good health. ☺️

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Thank You 🙏

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I admire each of you for your realistic, but positive outlook every day. Your lives are examples of what cancer diagnosis does to each of us. Being realistic is wise followed by a choice each day to find the sunshine and self-talk positive thoughts.

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@flgirl

Thank you for your reply! I agree, we will never be the same, but I don't live with it in the front of my mind daily. That isn't living. I was diagnosed with MGUS 18 months ago. My thoughts are, I survived once and will again. I see the oncologist/hematologist for labs every 6 months. The new health issues that keep popping up, and life in general consume me, but I just keep looking forward, and up. Positive attitude and mindfulness are a must. Hugs and prayers for you, and all others here!

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Agree and good for you!

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@loribmt

That’s understandable…no unnecessary surgeries. Wishing you good health. ☺️

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Thanks for your good wishes Lori : )

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@dbamos1945

I admire each of you for your realistic, but positive outlook every day. Your lives are examples of what cancer diagnosis does to each of us. Being realistic is wise followed by a choice each day to find the sunshine and self-talk positive thoughts.

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I think yours is the best response yet ❤️

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