Hello all, my mother, 73 and heavy smoker, was diagnosed with lung cancer in late 2018. She was given 3 months to live in Spain, where she lived. However, I brought her to Miami and she did 8 weeks of chemo and daily radio therapy. She went through it like a champ. Then she started immunotherapy. She did well for about 6 months, but her mobility was increasingly impaired and she fell and broke her shoulder. The doctors found her cancer had grown in her chest and had traveled to her brain and she underwent a gamma ray procedure. Since then, a year to her diagnosis, she has had no further treatment. She has been declining very slowly. Now she can barely move, or breathe and is basically immobile. She is anxious although lucid, and can see herself fading. It is heartbreaking to watch.
TBH, I never expected her to make it this long and it is excruciating to watch her suffer.
I need to hear from people who have gone through this and tell me from this point, what to expect.
Thank you .
So sorry to hear all that you are going through. I don't have any answers for you but do share some of the same concerns that you have. My mother was diagnosed with endometrial cancer and had a complete hysterectomy in Oct. 2017. She completed six rounds of preventative chemo, Dec. 2017 - Apr. 2018. A few months later her blood markers continued to rise and the cancer metastasized to her lymph nodes in the abdomen area. She choose not to do anymore chemo because it affected her mobility and radiation was not a good option.
To date, my mom has been under hospice care since Feb 2020. She is completely bed bound. She can move her limbs but can not walk. She suffers from dementia but its been tolerable and she has CHF. Her appetite remains decent.
Like you, I would like to know what to expect.
The thing is, all patients are individual and then on top of that you already know that your mother is not typical. I'm not sure other people's experiences will give you the sort of clarity you need to get your bearings during this terrible time.
Also, they have NO answers. they said she might have weeks left when they first took her on, 6 months ago!
I don't know if any of the metastases were worse than others; the lung metastasis obviously compromised her ability to breathe and walk. So perhaps that was the central issue that overwhelmed other factors.
Either way, it was horrifying, extremely depressing, and sad beyond description. I wish I could offer some positive encouragement, but that's difficult to do.
You could be prepared for oxygen use by learning how to manage portable and stationary oxygen concentrators, how to check SAT rates at home and know when she might need hospitalization, and speak with either her oncologist or pulmonologist for more insights on what to watch for and how to handle progression.
What I would also do is make sure her Will, Durable and Medical Powers of Attorney are in place. If you're staying with her, ask her oncologist about in-home help. That would give you some relief.
You might also ask about nutrition, although she's probably not eating much. My sister developed a fondness for fruit juices, thicker ones like apricot juice. At that point it was fortunate that she could eat anything.
Make sure she's warm enough, even during summer, as she'll lose her ability to keep warm. And sleep close to her. I dragged a mattress down from an upstairs bedroom, put it on the floor and slept there so I was close enough to render assistance when needed.
We both had difficulty sleeping, so we used mood music to help us. We put on a CD of lapping waves, or something very soothing. I find harp music especially relaxing.
You might also research to find a local Gilda's Club, and if time permits it, attend one of the cancer support groups or activity. The companionship will help, but you will be with others who are facing similar challenges. it could be more depressing, but it could also be supportive.
If you don't have a wheelchair, ask her oncologist to script for one, with removable arms and legs. Try to find a slideboard; it'll be easier to help her get into the wheelchair.
She's probably quite thin, so ask her oncologist's office for information on the best support for the wheelchair so her buttocks don't become sore. We got a catalogue of DME supplies; that helped us choose the most appropriate assistive devices.
If family and friends visit, keep the visits short, maybe 15 minutes, or possibly longer. At that stage of life, the person becomes exhausted easily, and quickly, but visitors don't understand that.
Bring everything she needs close to her; my sister wanted her calendar, phonebook, comb, toothbrush, etc. all right around the area she slept. By that time it was too difficult for her to move much.
I hope this helps, and wish you and your mother as much peace and solace as is possible during this challenging time.
Do you have a bathroom close by, or are you using an alternate means to address continence issues?