Palliative care - brain tumour

[Guineapiggiesmalls]

My mum was diagnosed with a form of lung cancer (stage 4a) in 2022, which was luckily able to be maintained with a daily pill. At the beginning of October this year we thought she was having a stroke but it transpired to be either brain metastases or a second primary brain cancer, thought to be a high grade glioma. Because of the effects of the daily lung cancer medication, she can’t tolerate the surgery for a biopsy so has come home for palliative care.

She’s very philosophical about it all, but the toll of being a full-time carer is starting to hit me. She’s been at home for five weeks now, and I’m scared of how long this could potentially continue. Obviously I love my mum, and am keen to respect her wishes of dying at home, but we’re getting little support from the council.

I wonder if anyone has any experience of palliative care at home? My mum is now not receiving any treatment for either of the cancers and is only on steroids to manage the symptoms. Our oncologist suggested around 2.5 months but honestly she seems like she’s soldiering on much as she was when she first started showing symptoms, and I’m not sure if we need to start making alternative plans before I totally burn out as a carer.

We had input from specialist palliative care team in the community, so basically district nurses coming in twice a day. I wound call your hospice tomorrow and also the GP saying she is dying at home but needs personal care and will need pain relief. You should be receiving some support. Sorry you’re going through this

In terms of how long, the specialist palliative care team are best placed to estimate prognosis as this is their area of expertise. Having said that, there is always an element of guessing.

I am constantly surprised how bad other health professionals are at doing this but then, it's what I do for a living.

I agree with everything above and would also add that if you have a Maggie's Centre nearby to speak to them. It was our local Maggie's that helped sort out the allowance and a blue badge for when we took DM to hospital for consultations. I will forever be indebted to them for the kindness they showed us when so many other professionals treated us as if we should know what to do.

Good luck.

My husband's cancer spreading to his brain signalled the beginning of the end for him.
This was a decade ago, and I can quite appreciate that things are tighter now, but his oncologist referred us directly to Macmillan, and in our case they were incredibly helpful. Occupational Therapy was also called in end assessed the house and had various things put in place, including, eventually, a hospital bed. Macmillan also filled in all the forms for us to make sure that we get all the benefits we were entitled to, and fast tracked a blue badge.

I do hear that Macmillan can vary hugely between areas. They were no use to my friend in a different part of the country, at all, but they should still be your first call. If you can get the hospital or her GP to refer her to them, that might also help.

As things got worse and he had a syringe driver for morphine, we had regular visits from the district nurses and carers. There was never a real option for him to go to the hospice (though he wanted to die at home anyway). Beds there are like hens teeth, even though there are three large hospices near us.

All the best. It's hard. In our case we were fortunate to have the support to keep him at home, and it was all very peaceful and positive at the end. I hope it can be for you too.