Emotional health after cancer: How are you doing really?

These are very powerful, valid and true feelings.
Thank you for sharing your feelings. I hope it was a healthy, productive mental release for you. I'm sorry for your diagnosis

I do not have cancer but diagnosed with a disease to which there is no cure or concrete treatment, yet.

I spend every Monday in the apherisis/Infusion unit of the hospital for over 5 hours. I am surrounded by patients of various needs. We all get wrist bands. People of all ages and walks of life. There is no discrimination when it comes to illness. My heart struggles when I hear babies crying and small children screaming. I sit there hooked up knowing there is nothing i can do to comfort them. Some days I'm not sure if i worry more for others or myself. I have been known to unhook for a rest room break and make my path past them to simply say hello, with a smile, and show them my wrist band too.

I hear what you say about the very common "how are you" question. It indeed is a loaded question. One that can have so many layers of an answer but in all honesty is just easier to reply "ok" to. My new reply has been, "hanging in" because generally I'm not "OK".

There have been many times during my infusion, as I sit alone, I have cried. At times peacefully to myself and other times behind the curtain uncontrollably.

It would be comforting to have someone on hand for mental support. That hug, the touch of a dog, etc...

I wish you the best in your journey and again thank you for being real with such sincerity. May good health find it's way to you both physically and mentally.

Rachel

Hi @azkidney57 You bring to light a very important question I think. Personally I think the ignoring of mental/emotional health is endemic to our entire society. Plus I saw this same thing at work with my wife and with me. During my wife's war with her brain cancer only one of her doctors ever would ask about her emotional wellbeing. Additionally when I would go in to see my GP she would most often say this exact sentence "Scott, you look exhausted and worn out. How are you doing?" Then she would totally ignore anything I said! I especially recall one time answering "Actually, I am very depressed right now!" She said 'oh' and moved on without addressing it at all.

I also recall when my wife's surgeon told our daughter her mom would 'be back to normal'. She never was and when I told him sometime later that was a poor choice of words -- he responded that my wife was back to being able to do normal things like talk, walk, eat, etc. He had no awareness of the fact she was extremely disabled emotionally and mentally. As a surgeon he was looking at the physical aspects only.

In my opinion the medical establishment needs to pay far greater attention to their patients' emotional wellbeing!

Strength, courage, and peace!

You shouldn’t be alone during your infusions! That’s what mean that the emotional needs of anyone with a chronic disease process is often ignored. I use to work at a dialysis center and they had a lady that would visit patients and sit next to them. I thought what a great idea! I later found out the woman was there on her own and not a paid employee. Thank you for sharing. Rachel. I was touched by your story. We are not alone! Stay strong!

@azkidney57 WOW your discussion is powerful! And so true. I’ve been thinking if there was just someone to talk to honestly. I do see a wonderful therapist but she’s not there 24/7. And most people don’t really want to know.😥 one thing I do know having been a nurse on an oncology unit for 11 years. Nurses cry all the time, either with the patient or at the nurses station or in the break room. We ran out of tears sometimes.
Have you thought about finding a good therapist?

This may sound a bit out of the norm, but Blue Cross/Blue Shield of Florida called me "out of the blue" to see how i was doing. They have a free program where certain people are flagged in the system if it appears they are going thru extreme medical situations. This is a RN, and she was very good about asking the right questions. I had pancreatic and metastatic breast cancers simultaneously. Depression was the worst. i would sit and just cry a few times every day just because. She recommended me seeing a psychologist and gave me a list of doctors in my area from which i could choose. I am not on any medication for this, but she is a licensed professional who has helped me so much thru my ordeal. Although I still feel sad/depressed at times, it is much better. As i am emerging from the chemicals (chemo, radiation and pills), procedures and surgeries, I can't recall the past two years. But it does get better if you find someone to talk it out with. I was never a believer in this, but it works. Support groups can depress you as well, so please be careful with them. Good luck in your search - once you find the right person to talk with you will see that it will make you better.

Thank you for sharing.

Dianamiracle, I am glad you are getting support. That is unusual for an insurance company to check in on patients and provide assistance that’s something I wish happened more often. No one should have to deal with a major illness alone. Cancer takes a huge toll on physical, emotional, and financial aspects of a persons life. Hang in there! I wish you the best!

First you are a very excellent writer and I share your thoughts. After going through VAT surgery a few weeks ago I am slowly feeling better. I had a follow up with the surgeon and I don't need chemo now and that was very helpful. Throughout the entire process I have not heard an encouraging word. I first began my journey at Mayo and then had surgery in Chicago to be near my family. I no longer read the information on the internet as it is too depressing. The health care providers are so accustomed to dealing with cancer they seem to ignore our emotional side. I am trying to get back to what used to be normal but it is a struggle. When I went back to the oncology department for my post op visit there were many patients with various types of cancer and all ages, but mostly older look me. I was amazed that they seemed to be in good spirits and I said to one of them that this is not where I want to be. She replied that we were in good hands. So knowing we are in good hands with our medical team and the Lord will guide us through our journey. For me I am trying to take one day at a time and on occasion one hour a time.

Time is moving forward but sometimes I feel like I am standing still and life is moving forward and it’s a blur. I take one day at a time one moment at a time as well. I believe it is a protective defense mechanism. Some days are better than others. I also notice at my cancer center some patients seem happy while I dread being there. There is laughter while I feel like crying. It is all a matter of prospective. I don’t want to be a cancer patient but I am. I think because it is still new to me. It’s been 4 months since my surgery. I have scans this month so that is making me nervous. Scanxiety is a word someone coined and it is appropriate. I have it and I need to practice to be positive because I need to be scanned. My lab work is normal I just found out yesterday. That made me glad. Living with a cancer diagnosis is rough. It takes a toll. You must do what feels best! Some days I want to be around friends other days I prefer to be alone. My dog is a great comfort. He is always there for me. He makes me laugh. He can be such a silly boy. I relish in the simple things and that helps me. I also take lots of walks it clears my mind. Keep strong and push forward. No one has a promise of tomorrow.

I am happy to hear your lab work is normal. That is a win in anyone’s books. I too have found scans to cause anxiety. I concur that friends are great but not always what we need in the moment. It is comforting to know that your dog provides a great amount of comfort, pets do indeed have a calming effect. Never feel bad that your mood is not exactly the same as the next person. Treatments and that knowledge of having cancer effects us all in different manners. Have you tried a “meditation” app when your anxiety builds?