I am so sorry to hear about your mother. I know that this is very hard for you and your families.
Have her doctors given you any prognosis? Stage 4 is very serious, and you need to urge the doctors to be very frank with you and with your mother. You need to be realistic about her situation in order to get her the best care possible. If the doctors agree, it may be time to call in Hospice. So many patients do not receive Hospice care until the very end, when it is too late to do much good. IF she is eligible, they can be a great help in pain control and in avoiding the mental side effects of pain meds which she seems to be experiencing. And if she gets a lot better, Hospice can release her from their care...it is NOT a final decision. And Hospice personnel can be a great help to the entire family.
If Hospice is NOT an option, please ask for a consultation with a palliative care specialist. These are physicians who specialize in pain relief for just the sort of situation your mom is in. There is much that can be done, if the right medical help is available.
Wishing you all the very best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
As, I type this I am sitting next to my mom in her hospital room. My mom is 72 and was just diagnosed in the later part of Aug of having a very aggressive stage 4 bladder cancer. It has spread in one of her kidneys that is not working now. It is also in her uteri tube , sacrum bone and pelvic bone and now in her rib bone.
At first they were unsure of what type to call it "Kidney or Bladder" But decided that it started in the kidney in the bladder tissue there and spread.
She had been being treated for systematic nerve pain for a month . She had pain in her lower back by her tail bone and had a hard time walking for long periods of time. After a MRI in July they discovered a mass in the kidney and said the kidney would need to be removed.
After being referred to an Urologist he stated he needed a CT scan because there was more going on there.
After that test he requested a different CT Scan. Then a biopsy of the kidney and Sacrum.
We didn't find out from the urologist about what time or stage of the cancer . It was only when we took her to the ER because she had a fever that her primary doctor had the results and informed us as we were on our way that is was Cancer and at a stage 3 or 4.
We got her transported to a hospital in Tulsa and that is where we got more details. Finally, and hard to hear as it was we needed to know something.
Because of a mas on my mom's spine they wanted to focus on that first with Radiation treatment so as to shrink it to avoid possible nerve damages with the spine. They said the treatment would benefit the cancer as well.
My mom started what was suppose to be a set of 10 treatments. Her drive was an hour and 20 minutes each day to and from the hospital. She had to miss a few because of getting sick and weak. And trying to manage her pain was difficult. She was having swealing in her feet and legs and now currently sitting in the hospital because of that and pneumonia. She is over the pneumonia but now is unable to walk and not sit up. We are starting PT now . They have finally , maybe got her pain under control. She has been here 3 weeks and we are trying to get her to wear she can go to a skilled nursing facility where she can get 24/7 care and rehabilitation and be close to the hospital to finish her treatments.
This happened after her first Chemo treatment. She hasn't been able to have another for 2 weeks but has been doing the RT. They have been doing so many test. Chest Xrays, Ultra sounds, CT Scans. she has been through so much.
She has 5 of us kids and we take turns staying at the hospital but we were fighting so much in the beginning it was a nightmare for us all.
My question I guess would be. Where do we go from here. We are so new to this and it came from out of no where?
We are worried about the pain medication. Right now she is on a 12 hr extended relief and it seems to finally be working after almost a week and a half. Then she gets a IR every 2 hrs as needed. She has been talking and not makine sense. And it scares me and worries me . Is there all normal. Are we doing the right by her?? Are we missing something?