Feelings

Hi Jenbo

Just wanted to reach out. Our situations sound similar. My mum was diagnosed with metastatic breast cancer 5 years ago. It had already spread to bones when they discovered it. 

Sorry had to register …..

My mum doesn’t want a prognosis either so we have no idea if time scales. My sister and I also spend all available time with her. My mum has just spent two weeks upstairs and was admitted due to vomiting three days ago. It is a horrific roller coaster to ride. People suggested asking mum for permission to speak to her oncologist about her situation. When I asked he said ‘no’ but maybe your mum would grant permission for oncologist to speak to you. I know they can’t say for certain. But I feel like there must come a point when they should give family an indication of what is happening and time scales. We don’t know whether to get family to visit or not. I’m off to the hospital but I’ll check in later. Take care 

Forgot to say 6 months ago mums cancer spread to liver and has been growing since. We also don’t know whether or chronic fatigue is due to side effects of treatment or disease progression or both. And feel it is difficult to know where to ask questions because she doesn’t ask them 

Thanks so much for your reply Lou. Sounds like we're in a very similar situation, I'm so sorry to hear about your mum.

We've already spoken to my mum about the permission thing but she's also a solid no. My mum's words are it goes in a box and we don't open the box until we have to. But at what point do we have to? I know this sounds so selfish and I can hear it in myself but it's the simple things, do we go on holiday? Do we go out with our friends and try to enjoy ourselves? We have no idea where we are in this horrendous journey and the not knowing is torture. 

I've just had a good chat with the hospice nurse here to help my mum and she's suggested a couple of services which my sister and I could use for support. I really appreciate it but still feel lost. Feel like we're losing who we are and there's absolutely nothing we can do about it. 

Hope the hospital visit goes ok, thinking of you all.

Very similar for how I feel today.  My mum didn't want to know timescales either and I didn't think knowing would help.  But I find it hard.  I just don't know what I'm meant to be doing.  I can't 'get on' with normal, because I feel the rug can be pulled away at any minute.  Today has been a real wobble of a day