Emotional health after cancer: How are you doing really?

I can truly relate. I had the master bathroom started when I got my diagnosis. I started chemo less than two weeks later, with the interim filled with Dr appointments and surgery to get my port inserted. I almost died from the first treatment and was hospitalized for a week to stabilize me. They removed one of the medications from my cocktail that they thought caused the problem, but I was bedridden for most of the months of chemo. I was lucky because I had disability insurance thru my employer, because we had to hire a caregiver for me. All this time the bathroom closest to me was out of order. My husband decided to bite the bullet and take out a home loan to finish the bathroom and add UV and hepa filtration for the furnace so clean the air for my health.

I don’t know your circumstances, but I started living by an adage when I got cancer the first time in my twenties. “The only thing you can control in life is your attitude.” Think about your perspective. In the scheme of things, life comes first. Get your health taken care of. The bathroom won’t matter if you die. Your family could care less about the bathroom and only care about you. If it means taking out a loan enough just to get it usable, you can worry about the rest when you are healthy. Otherwise, your family will have to worry about the bathroom after they bury you. I don’t want to be harsh, but as a two time cancer survivor, your health and your family’s peace of mind should be first!

@lisaok- Welcome to Mayo Clinic Connect. I agree that cleanliness is very important for good healthy recovery. However, I'm not sure that pushing people away because of your expectations is healthy. Perhaps a compromise might be in the making?

No matter who gets cancer - those of us who weren't surprised but shattered and those of us who were both shattered and surprised cancer will interrupt everyone's lives. In my house, we had to decide many things that would need to change- mainly schedules, travel and a partial remodel of one of our rooms. Is there a way that a bathroom update for the one that you will use post-op be done and leave everything else for when you can have it done?

I have found that expecting people to react to things the way I do is a dangerous road to travel on. I have over-the-top expectations and have to be very careful with this. I sometimes forget that no one else is in my position.

"I'm the one with cancer and in need of treatment. I'm the one who sees all of these things around me that need to be fixed..and no one seems to understand." They can't possibly see things through your eyes. Can they?

You are so right about how loaded and complex the internal reaction is to that seemingly benign question, “How are you?” Is after a cancer diagnosis. I go to the clinic, get poked, squeezed, and and inundated with information and possible treatment options. I am grateful I am in good care. I had been planning and waiting for this summer to complete some updates and repairs in my home that have been started. Then I get a cancer diagnosis just in time to derail everything I had looked forward to fixing before we hunker down for winter again. Rage kicks in an I find myself asking to push surgery and treatment out further and further so I can get my plan back on track. I have a manic panic rage driven anxiety that is allowing me unnatural levels of energy and it’s destructive. Pretty much everyone in my family has been “ripped a new one” for not caring. My demands and expectations of them have changed in my panic to complete work before I have surgery and become completely useless. I perceive their seeming lack of motivation or interest in helping me as unsupportive. My reasoning is that all the debris, filth and lack of functioning bathrooms will be detrimental to my recovery. Why don’t they care? Well it’s probably because I’m in a state of self-absorption, and unmerited self-pity. That’s what I gather. I must be the problem and cancer has exacerbated my maladjusted personality. I just feel a little insignificant and uncared for in a critical time of accepting I am a cancer patient. Ugh!
“How am I doing?” I’d rather not say.

Good morning @nutmeg56 and @callalloo Thanks for your kind words. Unfortunately, my wife passed away from her disease, but we always knew this was the most likely outcome from the time of her initial diagnosis. Yes, we were really lucky to find her neuro-oncologist for sure! The first time we met it was about 2:00 am in my wife's hospital room while she was still in a post-op coma. He was sitting on the foot of her bed when I woke from dozing in the chair in her room. I asked him why he was there. He said, "I have a feeling this is going to be very challenging for your wife as well as her medical team and I felt the need to meet her right away". It was quite a way to bond...

Strength, Courage, & Peace

So, Scott, you wife got lucky twice. The first time in having you as her husband and, years later, finding a doctor who understands healing in its multiple facets.

Wow, that is wonderful. Doctors should learn from their patients. We should never stop learning. Drs. can certainly learn from their patients. Things are always changing and I know it must be difficult to work with a patient for a long period of time and then they die. Dealing with cancer they are going to lose patients. Other specialties don't deal with death like cancer surgeons. Oral cancer has a 52 or 53% survival rate so they lose a lot of patients. There hasn't been as much research on it as other cancers. They know a lot less.
Everyone knows about breast cancer, prostate cancer,
thyroid cancer, etc. But not much about oral cancer. I certainly didn't. I don't smoke or drink, which are the main risk factors. It's hard to find a doctor that has the right bedside manner. It can take so little to make a big difference. My first cancer surgery I was a wreck. I hate anesthesia. I am afraid I will not wake up. When the anesthesiologist came over to ask his questions he saw I was nervous. He put in the line, and said don't worry, you're going to be ok. I'm going to take care of you. And he patted me on the arm. It made such a huge difference. I felt safe. Such a small thing can make such a big difference. Only takes a minute.
Maybe they think what matters is doing the surgery successfully. Not so much the emotional side of things.
For me I need both. I'mean glad your wife found someone who can empathize and also treat the disease. I think my doctor feels there should be professional boundaries. On the other hand before my first surgery he gave me his cell number so I could call him if I had questions.
And at the first appointment he said I should call him by his first name. I have called or texted him quite a few times and he usually gets back to me very quickly. I've never had a doctor do that.
I think sometimes I expect too much. More than I deserve.
I'mean afraid if I address the issue he will tell me to find another doctor.
I hope your wife
keeps improving. Having a caring husband like you is a blessing. I hope I get to chat with her one day soon. Take care. Eliza

Hi @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

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

Ginger you always know what

@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