Hi all,
I never thought I'd need to join a group like this but here I am. My mum has cancer. She's been having symptoms since January and we've just found out on Friday. She is very ill and in hospital. She cannot eat and drink by herself and her abdomen is full of fluid.
We have not received an official diagnosis, however her GP called her on Friday to say they have found a huge mass on the CT scan, her bloods have come back in a bad condition and that it is in operable. We had her admitted to hospital on Sunday with severe dehydration caused by sickness and diarrhea. She previously went to A&E last wednesday but was sent home with suspected IBS.
They think it is ovarian cancer which is affecting the bowel and spleen. She's being treated with antibiotics for an infection, but they are not sure where it is, and she's on anti sickness tablets. She is also on a drip for fluids. They won't give any proper information until they have their MDT meeting on Thursday.
Now I am angry for the following reasons:
1 - Not one doctor had examined my mum until she was admitted to hospital. Not even in January when she had symptoms. They kept fobbing her off with a water infection. This past week, everything has been by phone. The GP knew she wasn't eating or drinking, and that she had sickness and diarrhea and all they prescribed over the phone was anti sickness and a food supplement. Even when she went to A&E no one looked at her and a doctor phoned her whilst she was sat in A&E to send her home!
2 - Everytime we speak to the cancer nurse at the hospital (we are not allowed to visit) they said a care plan will come eventually, probably after a biopsy, but for now she is still under the care of the GP. We've asked for a biopsy now but we keep getting fobbed off by them saying 'its only early days'. NO - she cannot eat and drink and she is dying, why are they not doing something now? She is getting weaker and weaker by the day!
3 - After the MDT meeting they are going to have a meeting with my mum to give the diagnosis and tell her the plan going forward. Last Friday they said she needs to have someone with her but now we are not allow to attend. THIS IS NOT RIGHT!!! She cannot take in the information and she needs support. She's too ill.
4 - The government keep batting on about how the NHS is still open for business yet everytime we ask for help we get told no because of COVID!!!!
I am just so so angry and I don't know where to turn to get help. The lack of care and empathy that she has experienced is just horrific. The words the GP used to tell her were 'Oh, you do know you've got cancer don't you?' is just diabolical. Not one person cared when she complained that her stomach was swollen and that she couldn't eat or drink. Not one doctor had the decency to examine her and they hid behind the excuse of COVID.
I'm sorry for the rant but I don't know where to turn. Does anyone know what I need to do to get the care she needs? Who can I complain to? Who should I be contacting?
Thank you for reading xx
Hi and welcome to the online community
I'm very sorry to read about how poorly your mum has been recently and that she has suspected ovarian cancer. I'm sorry to hear also that you don't feel the doctors and nurses involved in your mum's care have shown much in the way of empathy.
It's perfectly normal to feel angry when someone you love is going through tests and you're waiting for a treatment plan. Everything seems to go so slowly but it's important that any tests and biopsies that are needed are done so that you mum's treatment can be tailored to her.
Once her team have got all the information they need there will be an MDT (multidisciplinary) meeting where a range of specialists, which may include surgeons, oncologists, radiologists, etc, will get together to plan the best treatment for your mum. This is important because everyone's cancer is different and for the best outcome lots of things need to be taken into account.
You mentioned that your mum was having a meeting yesterday to find out what treatment is planned for her so I hope this was able to go ahead and you're all feeling less stressed now that you know what will be happening. I realise that this tip is too late for yesterday but, for future appointments if your mum can't take anyone with her, she could record the conversation on her phone so that you can listen to it later.
Your mum should now have been assigned a cancer nurse specialist (CNS) who will be her point of contact if she has any queries regarding her treatment or is worried or doesn't understand anything that she's been told. I know only too well how she'll feel after being given lots of information. I made an appointment with my CNS a few days later so that I could go over in more detail my diagnosis and treatment, as I had lots of questions that I hadn't thought of at the time.
If at any point she's struggling to get information from her team then she could get in touch with PALS (Patient Advice and Liaison Service) at the hospital where her team are based. Part of their job is to help with health related questions and to resolve any problems you might have.
Please come back and let us know how she got on yesterday.
Sending a supportive (((hug)))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
