Waiting times

[Thby2023]

I posted on here a few weeks back when my mum was diagnosed with lung cancer that has now created 2 small tumours in her brain. She was diagnosed on the 14th, she saw a consultant on the 15th and had a biopsy on her neck last Thursday.

what is the usual waiting times for a plan for treatment? She was hospitalised initially on the 7th as her face was drooping slightly and it’s pretty much been a month with no treatment or any real idea of when it’ll start. They have told her they are planning to treat her. She’s been told she’s fit and healthy aside from this. She literally had no symptoms at all. No breathing problems, headaches etc.. it’s a blessing this small tumour has sat somewhere which has caused some form of issue.

But there has been literally next to nothing in terms of support for her or us. A nurse called her once on the 14th and nobody has bothered with her since. Her life has been turned upside down as has ours and there’s nothing in terms of timeframes or any emotional support offered. Has anyone else experienced this? Is it normal? We don’t even have a point of contact who we can chase this up with.

thank you for reading.

Frighteningly ‘normal’ in our experience.

A delay of over a month for an operation, by which time it had grown and parts were inoperable, then a further 5 + months for treatment, by which time the tumour had grown further and so they are now terminal, and no support from anyone.
There should be a cancer nurse specialist at the hospital, although ours doesn’t seem to do anything. If you phone the switchboard of your hospital they should be able to put you through to them so you can ask for some support.

Alternatively you could contact the support line Macmillan offer?
https://www.macmillan.org.uk/cancer-information-and-support/get-help

You can also call and speak to the consultants secretary and ask if they have any information they could tell you wrt any updates/appointments/plans.

I’m sorry you and your DM are finding a lack of support at such a worrying time

I’m so sorry of your experience, that’s absolutely awful I can’t believe it. I hope you’re able to get a massive complaint and something out of that because it’s awful!

She’s giving it until Wednesday and then will be chasing it up. I’ve told her to lift confidentiality for me and my sister so we can chase it up too. Don’t know if it will change anything but we can only hope!