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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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@nutmeg56 How exciting to look forward to having knee surgery soon. That would certainly buoy my spirits! Your story is good to read.
I hope your day is pain-free as well.
Ginger
Thanks for responding to my post! Have a great Sunday.
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2 ReactionsIt's great that you're working with a surgeon that you can have confidence in. Better yet, that he's essentially doing this pro bono. There still are doctors, and veterinarians, around who can do that. But theyre not in the majority, alas. Lookout forward to hearing that all went well with the surgery...
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2 ReactionsYes, I was very lucky to be referred to him.
His research is known worldwide. He runs the oral cancer center and also teaches. So he doesn't depend on surgery for his income. Even so, I was blown away when he told me not to worry. The insurance covered the hospital costs and for the diagnostics. My last surgery in November was covered because I have new insurance.
I know he wouldn't have done any less if he was not getting paid. I am amazed at the responses I've gotten since posting on here. Everyone is so kind and helpful. It means a lot, especially since I can't get out much. I've always had dogs and I miss having that loyal, loving companion. My dog died some months before Covid and since my knees had deteriorated I knew I couldn't walk a dog. I'm hoping to get one after my knee surgery. I've always had rescues. My last two were beagles and that's what I would get again. I think all dogs are emotional support animals. I hope everyone gets good news about their health in the coming week. I hope everyone has a peaceful evening. ♡♡
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1 ReactionThanks for responding. I applaud you for
volunteering your time to help on this group. So many amazing people; I'm really overwhelmed. It makes me very emotional.
I suffer from Complex PTSD.
I was physically and emotionally abused by my father from the age of 9 or 10 till he died when I was 17. I wasn't diagnosed till 2011. I knew I was deeply depressed and felt it was my fault. I've been in therapy for years and on medication. None of them really work. Some help for a few months then don't work anymore. I've been on just about every combination.
Getting a cancer diagnosis didn't help. I have a very close friend who has been there for me and I don't know how I would have gotten through without her. We were neighbors but she moved out of state right before Covid. She's married with two young boys and a full time job. But she's always there for me, no matter what. The abuse from my father was mental & emotional abuse. The physical abuse wasn't sexual. It was beatings. Usually with a belt.
The words were much more painful. I don't feel the slaps or the sting of the belt anymore but the words are always in my head. Everything was my fault; I was usesless, stupid, a disgrace to the family. I could not do anything right. Anything that went wrong was my fault. I was quiet, spent most of my time reading, and got straight A's in school. It didn't matter. Every night at dinner he would say I was no good, wouldn't amount to anything. He resented paying for my tuition, clothes, food etc. But mainly he summed it all up by saying if he had known what kind of child I would turn out to be he would have had me aborted. He wouldn't let up till I left the table in tears. Then he would laugh and say I was a cry baby.
Sorry, I got cut off so I'm continuing here. Sorry to bring everybody down. It'seems hard for me to accept kindness.
I hope everyone has a good week. Thanks
@nutmeg56 Emotional health is a fragile thing. Add in to it feelings of "less than" and dealing with cancer, we often have to do a balancing act to stay afloat. I won't say I have been in your shoes, but certainly have been in that same aisle in the shoestore!
You are bravely opening up, and reaching out. That means a lot to you, and I hope you can see that you are helping others by being able to do so. We each have our own road, but knowing others have also been down a similar path can truly make a difference in our own journey.
Ginger
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3 ReactionsGinger you always know what
What to say! I was unsure if I should reveal such pa insulin experiences. I don't want anyone to think I'm taking advantage or seeking sympathy. It's only in the last few years that spoken about it.
A few times I really regretted it. I was asked what I had done to anger my father. One friend (not anymore) kept saying there must have been a reason. I must have provoked him somehow. He didn't abuse my mother so I must have done something wrong. It took me years to realize there could be no excuse for a parent saying things like that to their child. I never felt safe or taken care of as a child. Or loved. That is very hard to admit. I have compassion for anyone that was abused, especially as a child. I realize now that I never had any for myself.
Ginger I hope you're right and if even one person sees this and it helps them feel less alone it's all worth it. Thanks
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3 ReactionsHi @nutmeg56 I am sorry to read of your diagnosis and I certainly wish you all the best on your journey!
Your post struck a chord with me. My wife and I struggled greatly with several of her doctors who had her as a patient. It's kind of a litany, but I remember we walked out of the first surgeon's office to seek a second opinion more due to his lack of empathy than anything else. My wife's GP for many, many years was so divorced from her emotional needs that we also left her practice. While my wife's surgeon was extremely good at explaining the surgery part of things to her and us, we found that was the extent of his desire to interact with her. He saw his job as surgery and not follow-up or emotional care, etc. I quickly lost track of how many specialists and subspecialists we saw, who were good at their jobs, but didn't really focus on what my wife needed most -- supportive medical care. It wasn't until we connected with the doctor who became her 14+ year neuro-oncologist who looked at her needs as a whole person and not just as a person with a disease. He remains a personal friend to this day. He understood sometimes my wife needed an ear to listen to her as much as an adjustment on one of her dozen meds or the explanation of her recent MRI. He even understood I, as the caregiver, needed that ear for advice and support at times, too.
All this said I heartily applaud you for knowing what you need in your care and, while it takes extra energy to do so, be committed to finding the right kind of supportive medical care you need! It can be worth it! It sure was for my wife.
Also, I discovered the benefits can flow both ways. Not long ago that neuro-oncologist told me he has adjusted how he treats patients differently now based on what HE learned from my wife.
Continued Strenth, Courage, & Peace
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