Over the past 16 plus months I have become slowly and steadily disillusioned with the NHS- sorry. I know they do an awesome job in the majority of cases but I'm at the end of my tether today!
Since my husband was diagnosed with a terminal brain tumour in Sept 2020 we have seen 4 separate oncologists via video link, been sent round 9 separate hospitals in our health authority and been be told by the CNS( who initially promised us heaven and earth when it came to support) to call the triage line if we need anything. You call the triage line and they refuse to help you because he's not actively receiving cancer treatment at this time. His treatment ended in Nov 2020. It's a farce of a care system.
He's on a cycle of 3 monthly scans to monitor tumour regrowth. In Oct they sent us to a mobile MRI unit. They screwed up the scan. No idea where things went wrong but the 4th mystery oncologist said that due to scanning abnormalities he couldn't give us an update on the size of the tumour.
Today we went for the next 3 monthly scan and were sent back to same mobile unit- and guess what.... yes, they've screwed up again. They were unable to inject the contrast dye for some unknown reason. They may have told my husband the reason but due to his mental state he can't understand or remember things and due to covid restrictions I can't accompany him. They've done the scan without contrast. Lord knows if it will show anything useful up! He was advised that they may recall him for a repeat scan but he's refusing to go for any more as he doesn't want to know what's going on in his head. He can't understand that the kids and I need to know.
The last accurate scan was July when the tumour was 5mm (tiny I know) but it had grown approx 30% in the 8 weeks from the previous scan. We've not had a clear update since and at that growth rate and the published average growth rate for GBM4 tumours, it could potentially be approx 20mm or more by now.
it really shouldn't be this hard or heartbreaking to get an accurate update on what's going on here, should it?
Just pray this scan has actually shown something of use and that we get a familiar face on the video screen on 17th Jan. (If its oncologist #4 it'll be a waste of time as he was so ill-prepared for the last call it was embarrassing.)
thanks for listening.
A very disillusioned
Wee Me x
Hi Wee Me
You really have had a terrible time. I have heard of this within my family but that was years ago and I’d hoped they’d sorted out this lack of communication to each other and the patient. Also I cannot believe that you are not allowed to be there under the circumstances you are in. It’s ridiculous.
I’ve been cared for by the bowel cancer team and I think that many departments could learn from them.
I really hope that you get better support
Ann
thanks Artsie
xx
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