Hello, I’m new on here and just looking for advice, input, anything really.
Mum was going though tests etc last year which resulted in her having to have a cystoscopy last October . At the end of the procedure the registrar refused to let Mum go home. He told her she had to be admitted as her kidney function was so poor they couldn’t let her go home. During this two week stay she had a TURBT and scans and bilateral nephrostomies. At the end of November she was diagnosed with incurable bladder cancer. An operation was out of he question and the plan was Gemcarbo chemo.
We had a meeting with the the consultant in February who, after looking at her most recent scan, said that the chemo had worked to a degree, he was finishing chemo at the end of cycle 4 and that all they can detect is the tumour that lies in her pelvis. He called it bulky tumour which was in her bladder, uterus lymph nodes and pelvis. Mum doesn’t want to know any prognosis for time etc, but I did get a chance to speak to him one to one, and he did say he felt it was an aggressive cancer. I asked if he thought Mum would be here this time next year and he said no, he didn’t.
Mum has had 4 cycles of the chemo with her last infusion on 1st March. During this time she has had four blood transfusions. She has no pain, maybe a little discomfort from her nephrostomies, but that is all.
Mum has lost a lot of weight and she spends a lot of time in bed. Her health concerned us so much that we got a Macmillian nurse to come and see her and they got her admitted for a weekend in hospital as she was dehydrated and needing more nutrition.
We seemed to get that sorted out and Mum came out of hospital with a bit more energy and ‘life’ in her. But since then she has slowly gone down hill again. She is managing to drink well, but her eating is very poor. She has supplement drinks from the dieticians but she struggles with them, and food. She has a poor appetite and when she eats, it is very small portions.
She lives at home with her husband who also suffers from poor health. I go to see her every day and so does my sister. We offer to make food for her but she is staunchly independent and wants to do it herself. She has a freezer full of cooked food which she can defrost and so I guess it’s not like she is making food from scratch.
My husband and I have told her she could come and live with us so we can care for her but she doesn’t feel she is at that stage yet. There is no room at her house to stay with her.
I Just don’t see much improvement in her at all since she finished chemo. I was expecting her to pick up, but she really isn’t. She is being sick a couple of times a week. Is that chemo related, cancer related? Is her cancer overtaking the good the chemo did? I just don’t know what to look for, how to make her life better, and it’s horrible watching her decline.
We have been so fortunate in our family in that no one has had cancer before, so this is all new to us. Ive probably missed out loads of details etc, but that’s my story. Thanks for reading
Hello and welcome to the community, although sorry to hear your mum is feeling so poorly. It would be difficult for anyone to say if it is the chemo causing the sickness, but in general, the chemo does not have such long lasting effects. We have a section here called Ask a Nurse where you will get some expert advice. Once the cancer has spread beyond the bladder, it would be hard for anyone to predict what happens next. Is your mum getting any present medical care ? Best wishes.
