Hi sorry if this is the wrong place. My dad is 78 and went for a CT scan at the end of October this year as he was suspected of having dementia. The CT was to get an proper diagnosis. He also was suffering from intense pain in his stomach/upper bowel region but this was always dismissed as indigestion or an infection ( for about a year). So he didn’t get any investigation or treatment for this other than ant-acids and paracetamol.
Turns out it wasn’t dementia but brain tumours secondary to another cancer. He was put on the 2 week brain tumour pathway and had a MRI on 22nd November.
That’s when things started to go wrong with his care. Fast forward to today and we’re still waiting to be seen at oncology and for a full body CT scan to find the primary. He’s been given no pain relief other than paracetamol and is obviously on a lot of pain.
thw neurologist said his GP can prescribe pain relief but the GP haven’t had any report from the hospital. Even attending A&E a few days ago, when he was feeling faint and eyes rolling, he was sent home. He has carers 3 times a day as I live 400 miles from him. But the carers are privately funded.
I think I just need to get this all off my chest. But has Thai been anyone else’s experience?
Thank you (I’m on my way to stay with my dad to try and get Thai sorted out).
HI Helenfmb
a warm welcome to the online community. So sorry to hear about what you are going through with your dad. I can empathise with your frustrations over the lack of treatment/explanation.
My husband was diagnosed with a grade 4 primary brain tumour in early Sept 2020 and initially the treatment was great but once we got handed across to the oncology team things have gone downhill. I feel as though we are excluded from important information far too often.
My strongest advice would be to speak to his medical team and get a clear picture of what the plans are. I'd also suggest writing down your questions to take with you as once you're in front of them its very easy to become overwhelmed and forget to ask the things that are important to you.
I've found this group a great source of support over the past 15 months so please stay in contact. There's always someone around who "gets it". There's another group that you might also find helpful - Carers only forum - Macmillan Online Community.
It’s always good to talk so remember you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
I hope that you get some support and some answers soon, even if its perhaps not the answer you hope to hear. Not knowing is far harder than knowing the full picture.
Sending you lots of positive vibes and a huge virtual hug. Hang in there. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
