Angry, Sad and Frustrated

Hi Laura

I’m not surprised you’re angry, sad and frustrated - your situation sounds horrendous. My 91-year-old Mum is terminally ill and in hospital but at least she is receiving some support. The situation is bad enough without you feeling entirely abandoned. 

It seems to me the lack of the diagnosis is the huge problem here. The same thing happened to my friend and her husband - he never got a proper cancer diagnosis from the hospital. By the time they called him back for further tests, he was so ill he couldn’t go. She got barely any support from the GP or the district nurses, precisely because there was no diagnosis.  In desperation she contacted the local hospice even though he’d never been referred to them. They provided more support in two days than she’d had in two months. 

I’ve found the same since Mum was diagnosed in January - it’s the hospice nurse who has helped most and signposted us to further support. The district nurses came once and were never seen again, the GP sent someone mainly to get Mum to fill out a Respect form. Never seen again either. 

Have you got a local hospice you can contact? Is there a complaints system at the hospital you can use? My friend wishes she’d made a much bigger fuss than she did at the time.

I seriously hope you get some action this week. Keep posting on here - it’s good to vent and often people will suggest solutions for you. I’ve found the forums invaluable. 

Thank you for replying, I’ve just looked on the hospice website and they do offer self referral. I’ll give them a ring today. 

I’m not sure how it’s going to go with my mom as she keeps saying malignant cancer isn’t a confirmed diagnosis but either way, she’s so unwell, we need support.

I’m sorry to hear about your mom, hoping her symptoms are being managed effectively in hospital and thanks again. 

Hi Laura

Im sorry to read about your mum. We do seem to have a problem with diagnosis, especially when someone is older. It took almost 2 months to get a diagnosis for my husband yet they knew it was a very rare and aggresive cancer. ( he died in October). I often wonder if it would have been quucker if he had been younger.

As Livia said, do make a fuss. They have a duty of care. Go back to the GP. Hope the hospice comes through for you.

Keep talking here, it helps x

Thank you for taking the time to read my post and respond. I’m sorry to hear about your husband. 

I will keep fighting for my mom, fingers crossed we get movement soon. I do find reading people’s posts helpful, I don’t feel so alone. 

Hope you’re doing okay and thanks again. x