Emotional health after cancer: How are you doing really?

The emotional roller coaster of cancer drastically effects your life.

I am 64 women with breast cancer living by myself. I have finished my scheduled treatments and in Dec will have scans done to verify no cancer remains. At first friends and family are very supported. Like  dianamiracle, a nurse from Blue Cross even called to see talk about treatments.

Now that I am done with treatment, people think your cured and life goes back to normal. I might look better on the outside, but the mind and body is still recovering. You have the fear that the next test may show more cancer. I still have problems with fatigue and being nausea, and then there is side effect of drugs.

After isolating for over year due to fatigue and not wanting to be exposed to germs, I am slowing adding activities to my life. At this stage, I thing being around people and exercising benefits me the most.

I do not think life will ever be the same as before cancer, I just have to accept a new normal.

Laurie

Hi @susandc I just wanted to add a real world example of how solid your thoughts on writing down your final wishes is.

My wife dictated to me her final wishes. She picked the music, the celebrant, location (our home), food, wine, eulogists (not me as she said I would talk too long and cry too much), cremation, locations for her ashes to be scattered, and for a variety of personal reasons she even had me write down who she wanted invited. As she put it, rather indelicately, 'Scott, I don't want anyone standing around in our home blowing smoke up your (body part) telling you how much they cared about me after I'm dead when they didn't give a (you can guess what) about me when I was alive.' She then shared this information with our adult children and her best friend so there was a core of folks who knew what was to go on and why.

She also decided to give her favorite jewelry and art to some family and friends before she died. She said she wanted to be the one to personally hand it to the next 'owner' and be able to tell them each why their item was special to her and why she wanted them to specifically have it.

She was in home hospice for the last 14 months of her war with brain cancer and we both were very pleased that she made this choice.

Not for everyone I am sure, but just wanted to share our experience with this.

Strength, courage, and peace.

Thanks Susandc. BTW, I am Connie, not Colleen. I love the idea of your list. I will do that. I also want both of us to make a list of jewelry and family items that we want our children and grandchildren to have. Many years ago when I was still a teenager our family dentist got a terminal diagnosis and they put everything in his wife’s name. She was in an accident and passed away before him and he had a nightmare straightening it out while ill. I keep telling him that no one on this earth knows our expiration date and while it would appear to be obvious, sometimes it isn’t.

Colleen, I went from being told stage 2 pancreatic cancer based on PET MRI to being told two days later it was stage 4 based on biopsy of a small liver spot they found during laparoscopic exam. This too has a pretty poor prognosis, but I've done very well with chemo at Mayo. My partner does the cooking too, but he's always been a better cook than I anyhow. I too do acupuncture and understand that it addresses our mind, sprit and emotion in addition to the physical, so I plan to continue. I read a good book - Radical Remission by Dr. Kelly Turner. It gave me hope and ideas of how to supplement the chemo with other things. I love your ten things a day list and I'm going to try it. Also please consider writing a sheet of your own final wishes even if he cannot discuss it. I want to die in hospice, not at home or hospital. Hospitals are impersonal and crowded, but in hospice, nurses can keep you clean, keep your morphine coming, suction you, etc. so loved ones only have to be fully present for you. They can step out for a breather when needed.
I have designated the music I want played, the hand lotion I want, and instructions like no political discussions or contentious arguments in my room even if I appear to be sleeping or unconscious. Hope this helps and wishing you peace and all good.

@colleenyoung. I don’t think I do such a great job of taking care of emotional health. Getting a Stage 4 diagnosis threw me for a loop. We don’t have much in the line of friends since moving here and our 2 good friends moved to KY and the other set are moving to TN in Jan. My husband is the best and we have 3 sons who call almost daily. They are terribly supportive. My parents live a few blocks from us and they Molly sit when we go to Mayo but at 88 and 89, they need more help than they are able to give. I walk on the beach a lot, read and am doing acupuncture which is hopefully going to prevent more neuropathy with this round of chemos and immunotherapy along with relaxing me and all that hoopla which I can’t say I’m convinced of yet. My husband is insistent that I give it a fair shot. Medicare and the supplement won’t pay for it and nothing at Mayo Clinic is cheap so I stress over that too.
When I got cancer the first time, we hired a housekeeping service. I am going to go as long as possible without doing that this time because all I did was see what they didn’t do. My strategy is to accomplish 10 things a day and I keep a list of what I have done...I love lists! They don’t have to be big things and honestly I’m finding that my house is cleaner than it has been in a long time because 70 things a week is a LOT and doing 10 things a day keeps me just busy enough for a few hours (or minutes when I’m doing quick things on Mayo days as we live 1 1/2 hrs away). Last time, my husband took over grocery shopping and a lot of the cooking. He found that he enjoyed it and frankly after 48 years of doing it at that time, I was thrilled for him to do it. He’s pretty much continued that to my delight. After doing it for 3 years, he’s figured out what is likely to end up in the trash and does a better job now.
But the bottom line is that stage 4 triple negative breast cancer has a pretty grim prognosis. My oncologist was quite honest when I asked. I was hoping that she and Dr. Google would have different answers. I’m a big believe in quality over quantity and I don’t want my husband to end up an invalid from overdoing trying to take care of me. We’ve taken care of everything legally and are as sure as we can be that won’t be an issue. My husband refuses to discuss hospice or other end of life issues so we’ll just have to deal with it when the time comes.

@cwm1, so nice to e-meet, Molly. She must bring joy to you and so many. Thank you for sharing her.
Besides canine care, how have you taken care of your emotional health? Who supports you in taking care of your emotional health?

@colleenyoung Our dog used to be a caring canine at Mayo Jax. While I was going through breast cancer treatment there, my husband trained Molly and she passed the testing with flying colors. After my treatment was done other than scheduled check ups, he enrolled Molly in the Caring Canine program and they went just twice a month because we do live 1 1/2 hrs. away. To be honest, we got lax and didn’t make her “follow the rules” when we were at home in our local neighborhood park with her doggy friends both human and canine. She flunked the test when she had to retest I think 2 years later...can’t really remember. As my cancer was returning, this took a backseat to other priorities. One day during her scheduled hour (and that was Mayo’s limit) we counted Molly’s business cards before starting. John handed out 83 business cards in maybe an hr and 10 minutes (because he was standing in the hall waiting for me to get a prescription filled). She loved it but she was totally worn out when her hour was finished. That is a wonderful program.

I highly recommend sharing this discussion with the patient experience office or patient & family advisory councils at your cancer centers. They need to hear the stuff you've been sharing here - all of you. @dianamiracle I can imagine how much it meant to get a call out of the blue and be genuinely asked how are you doing? I think many cancer centers offer programs and services such as access to a social worker, support groups, classes, etc. However these are all services you have to seek out. It would mean so much to just have someone sit beside you and ask "how are you, for real?"

Has anyone looked into classes or group sessions at the cancer center? Has anyone seen therapy dogs at their hospital?

If your hospital doesn't have therapy dogs, let me bring the dogs to you. I present Caring Canines of Mayo

Susan, i am a pancreatic survivor. if you wish to ask questions please don't hesitate to reply to me. Thanks

Oh, thank you. I will.