Sorry I need a rant!
Mum has secondary breast cancer HER2+ in her liver lungs extensive in bones. It came back after 7 years but due to being fobbed off as back pain for a year by all it was not diagnosed until last year. It then took four months for a liver biopsy and result to find out it was HER2+ positive by which time she had started with facial numbness, eye pain, headaches and severe nausea. It took a casualty admission to get the MRI of the brain brought forward. She had a paraclival tumour and they then pulled out the stops and gave her stereotactic radiosurgery in August.
She improved until Jan though the nerve damage to her face and mouth was permanent. MRI Jan good next due June. In Feb her sight suddenly started to go and the pain and numbness in her face got worse and started spreading. A sign the tumour might be back? But the oncologist at Doncaster insisted it was side effects of the radiotherapy at every appointment and due to heart problems and an SVT event she saw her nearly every week but they were adamant she can't have an MRI until its due in June. In the meantime she went blind, even that didn't raise a concern. This last few days she has the severe nausea and vomitng, in a lot of pain as she cant keep a sip of water down. We rang the Macmillan nurse who to be honest is very flaky and has never once followed up on an action she has said she would do. You can't talk to the hospice only a call centre in Nottingham. Yesterday the Macmillan nurse said if no better today she would get her admitted to hospital, as usual she hasn't even phoned back so contemplating an ambulance. My dad is deaf and doesnt like asking for help or to be a burden on health service. I live abroad having just returned from a visit to mum. I try to go every month for a week but my husband is currently having radiotherpy so I am completely torn.
I know nothing anyone here can do but does everyone have the same experience? What does it take for them to listen to mum and do an MRI? Going blind wasnt enough! By the time she gets the MRI and results in June it will be four months since the symptoms started getting rapidly worse. I know she can't be cured but they could have maybe given her better pain control and possibly more radiotherapy but the damage is done she wont get her sight back now and it has significantly compromised the quality of what life she may have left. Her GP is useless and the one who refused to refer her when the cancer first came back so we have no time for him. I just feel very bitter because they seem to have written her off because its terminal.
Sorry for the long post.
Hi Almondnut
Can I offer my sincere condolences for the loss of your mum. I'm glad to hear how good the nurses were with her.
Sending a supportive ((hug))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
