Hello all,
I'm devastated that we all have to be here, but thankful that there's somewhere we can go to find advice, hope and support.
The most important person to me has just received the worst news - In May this year, my Mum (69) was diagnosed with stage 4 bladder cancer (T4,N3,M1), spread to her lymph nodes and liver - and I know this is a bad diagnosis, but I just don't know how bad! On top of this, she has two DVTs in her pelvis, and her legs are swollen to a scary stage (so she is struggling to walk now too), plus the size of the tumour means she has to go to the toilet almost every 15 - 30 minutes (even at night). She can't have a catheter because of where the tumour is located, which means she cant sleep for more 30 minutes. I'm completely heartbroken, and feel helpless watching her suffer. Her oncologist has planned for 6 months of chemo, then hopefully remove the bladder in January. The communication so far has been "we hope to".... the oncologist won't give us a prognosis other than "your 5 year survival rate is <5%...". Oncologist wants 3 chemo cycles complete before doing another scan to understand how the cancer is reacting to the treatment... which I can understand and appreciate.. but a big concern for me is that my mom lives in SA, and current Covid restrictions makes travelling so difficult.
Her treatment - she started chemo in mid-June - 1 cycle is over 3 weeks. session 1 lasts 4 hours, and session 2 (1 week later) about 2 hours. then two week break, and so on.
first chemo cycle (2x sessions) went ok, but 2nd cycle was delayed (by 2 weeks) because of poor bloodwork.... after 3 injections (over 3 days) her bloodwork was good enough to continue, and could start the second cycle. then the 2nd session (of the 2nd cycle) was delayed because, once again, her iron levels were too low. They wanted to give a blood transfusion but the only beds available in hospital were in the Covid ward, and oncologist bluntly said that if she contracts Covid that would "be the end of her".... scary!! so we opted for a two week course of iron tablets.... and this is where we are....
I'm worried that these hurdles so early on in her treatment plan are making her prognosis worse - and I don't even know what her actual prognosis is. From what I read online its less than 12 months... is that true?
She woke up the other night calling for me.... and then said something like "I feel like I am dying..." I'm now even more worried because does this mean her mindset is changing? She was optimistic in June, but I fear its changing now.... I went back to SA for her first chemo session and stayed two weeks, she seemed to look better, but now video chatting with her I can see she's lost a lot of weight, she's more frail and less energetic..... she can't keep her fluids down either.....
Please can you share your experiences, I need to have a clearer, more realistic timeline - please help me understand what's actually happening to my Mum....
Thank you
Hello DaniG123 and welcome to the group. Really sorry to hear about your Mum and the discomfort she is in. It must be difficult for you not being with her as she goes through treatment. Delays in chemo are not uncommon. I had a few delays going through my treatment and was told the delays do not have a significant impact on the results. Once Mum has scans following her chemo, they will have a much better picture of how things are going. I hope all goes well. Best wishes.
