I am the daughter in law to a stage 4 melanoma patient, and we just got the diagnosis about 4 weeks ago. She was living in maui hi, which their health system was out of control. No doctors would answer my questions, she wasn't on health insurance and all they cared about was ability to pay even though they say they treat even when there is no ability to pay. The doctors don't talk to each other. The patient advocate wasn't advocating. Even the pcp wasn't communicating with the oncologist or urologist. My mother in law was initially admitted to the hospital because she had a blockage to urinate. They gave her a stent which still needs to be changed. With how the doctors weren't communicating plans and waiting on insurance we didn't have we decided to move her to California where she could get medical coverage because she moved states.
It has been an up and down rollercoaster. Some good days and bad. The 6 hour flight was so hard for her. She is now incontinent but only once or twice a day for the past week. I don't know if the pressure of the flight adjusted her stent or if her leg injury muscle tear is pulling on her groin causing her to pee or if the pain is just so bad she can't control it sometimes.
She is also sensitive to narcotics and have to play around with dosages. Meaning halving the pills. But it's still hard with her muscle tear which was never diagnosed or checked.
My mother in law is stubborn. She has always been the breadwinner, the only child, and always taking care of others before her. She has been hurt and in pain for quite some time but just 4 weeks ago finally opened up to family about how much pain she really was in living 3000 miles away from anyone. I flew over to take care of her and moved her back with me in California.
She is the strongest person I know. But with the pain and the nausea she is refusing to eat due to fear of vomiting. She only has a few bites here and there. She's not drinking enough again from the nausea. No matter how much I tell her she is more likely to vomit from the medication with an empty stomach.
And here is the kicker. We haven't started treatment yet. There are so many masses and she is in so much pain I am scared. I keep telling her we need to fight there is hope cuz we haven't been seen by oncologist here in California. And her son, my husband doesn't help much. He helps but in abstract ways. Like going shopping for me. Or taking care of the dog. While I am changing his mother's diaper and giving meds and feeding her and keeping track. I don't want to blow up on my husband when I ask for his help, when I ask for a day to myself due to my medical condition which is fibromyalgia. I need a break sometimes too. I understand that it's hard for him it's his mother. I don't want to force him to help me. So I feel alone in this caregiving. I have never done it before. I know we made the right choice by going to California but her pain is so much worse.
Any help or advise is appreciated.
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Kayleyc03
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You are in the midst of the worst rollercoaster ride there is: newly diagnosed advanced metastatic cancer in someone you love. I am sorry that your family is on this ride and that you are having to strap in for a longer haul.
Here are things that have helped me in the early times of diagnosis, and hopefully others will also chime in:
1. Have a safe place/ person outside of your house where you can share your mental/physical/spiritual burden of learning to live with cancer in your life. Hopefully writing here on HealthUnlocked will be one of those safe places. There may be support groups in your community (check with Melanoma Research Foundation to see if they are aware of a support group near your zip code. they are a legit organization).
2. Learn about melanoma from legitimate sources like these:
3. Get help in day to day living and caring. If friends/ family say what can I do to help, have a list of things from which they can choose: shopping, walking the dog, visiting with mom, watching a movie together, help with laundry/housework/cooking, reading through medical stuff and distilling it to common sense language, going to appointments to take notes while you/mom/your husband directly interact with medical professionals, praying for and with you, phone calls to you and mom to prevent and reduce a sense of isolation, avoid the news which just makes you feel the world is falling apart everywhere and saps energy, play music/ sing, take walks/exercise, play board games, accept financial contributions for food/gas/medicine/housekeeping. I've learned the hard way with hospicing my mother in law years ago that the best way to answer do you need help? is with a YES.
4. Find a melanoma specialist in your area, FAST. Melanoma is a cancer that has specialty knowledge and a general oncologist may not be able to be as efficient in providing a consultation/ recommendation/ manage symptoms and medication side effects. Your mother has stage 4 and needs to be seen as soon as possible. Come prepared, or send in advance, all medical information, records, test results to the practice. Work as a family to develop a list of questions so that your consultation time is effective and efficient.
5. Find someone to assist in looking at medical benefits, perhaps for medicaid or medicare depending on how your system works in CA.
6. Be open to how your mother in law views this stage in her life and how she is thinking about having melanoma. There are lots of different ways to live with cancer, and choices, which may vary from how you might decide to live with cancer if it were in your body.
7. I remind myself how it is an honor to be present in such a full and personal way with someone who is so gravely ill. For me, this is sacred space. It is existentially terrifying, awesome, sacred, private/public space. I respect that you and your family are in this space together right now.
8. Living with cancer is exhausting. Sleep is important, including naps.
Other Ambassadors, what else have you found helpful in the early phases of being a careprovider for a newly diagnosed loved one?
I am so sorry to read your post, you are going through so incredibly much right now. My advice is to tell your husband you really appreciate all he is doing to support you, but you need to ask for a little more help. He may be uncomfortable being his own mother's caregiver because it can be so personal. But maybe he can possibly help more in other ways, like taking over even more household chores or preparing (or picking up) meals, or reading to his mother. I am in MO but I learned just yesterday of a fantastic resource that is completely free, called The Cancer Support Community. They provide support for caregivers and cancer patients and survivors. This is for any cancer, not just melanoma. They have lots of ways to support you and have professional social workers to talk with, I think. It's okay to be sad, frustrated, and ask for help. Thank you for posting here. Here is the link to find a location near you, they have many in California, I hope one is nearby but even if not, call the closest one. You may have to copy and paste this link: cancersupportcommunity.org/...
My heart goes out to you and your love for her and strength are so very touching. Try and take small breaks that center around you- meditation/ prayer walks, baths, exercise. These are all hard things to do sometimes, but they will help. Also, I'm glad your reaching out. Support is so important. You are doing this all on your own!
I suggest having her seen immediately by a melanoma specialist and find out the tumor mutation (BRAF, NRAS, WIld-type) and getting her into a clinical trial. there ARE live-saving targeted therapies and immunotherapies and hundreds of trials. In a clinical trial, the pharmaceutical co. pays for the meds.
Having said all that, I would strongly suggest hospice. There are so many myths about hospice. They provide palliative care. If your MIL survives over the prescribed time, they just renew it! Ppl have had hospice care for years! They provide supplies, personal care, caregiver support, medications( delivered ) all free. At least I didn't remember paying anything. They were my saving grace.
I lost both my sons to Melanoma- it was a genetic predisposition- FAMMM ( familia atypical multiple melanoma syndrome). When it metastasized, it spread very quickly. My one son was on a targeted therapy that was winning the battle, but it didn't cross the brain barrier and he had developed dozens of brain mets that took him quickly. My other son was in a clinical trial, too, but developed liver complications and had to be pulled from the trial. It had been working, though. We did start a targeted therapy after we got him out of stage 4 liver failure, but it had already taken over his lungs.
Taking care of my sons was the most blessed thing I have ever done and I am thankful for every minute I cared for them. Stay strong💜
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