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Secondary brain cancer is cancer that has spread to the brain from a primary cancer...
My Mum was diagnosed with breast cancer last year and finished treatment and was doing brilliantly, she then unfortunately found that it had come back and was incurable. She then had a stroke and when undergoing scans found that it had spread to the lining of the brain. She was recovering from her stroke and doing well at home when we then had to take her into A&E where she had a seizure and went into a coma, she woke which was a miracle and came home 5 days later. She was home for 2 days and suffering from very bad headaches and sickness (reaching so much). We took her back in and she stayed there for a week where they sorted out her medication to control her symptoms which now do feel controlled.
We realised we wanted to get her out of hospital straight away so she’s now in an amazing hospice which strangely we all feel happy with as the care is 24 hours and means we can rest and Mum is much happier there.
She didn’t want to know how long she’s got left. She’s bed bound at the moment, is able to have conversations but has changed a lot. Her spark has gone (the laughter/the smile), she gets confused about these things, her eye sight has changed, she sleeps all the time but is comfortable and calm. I’m terribly worried about her coming home, the hospice only said she would be there for a week and a half.
The thought of me and my dad becoming carers is awful, and I can’t imagine going through it but don’t want her to go into a home.
So my brutal questions are; from experience do you know how long people tend to have to live? How did people cope being carers at home? And how bad does it get?
At the moment I feel lucky I can even talk to Mum and it’s very daunting that soon she won’t be able to communicate or anything..
Hello and so sorry to hear about your mum. There is another board on this site for secondary brain tumours, just in case you don't get responses on this one - there might be more people who know about your mum's situation there.
I can comment a bit on being a carer. It is hard, there's no doubt about it, but if home is where your mum wants to be she will so appreciate being there, and having you close by. Things can be made a little easier by lining up your friends and family to give support with practical things like cooking and cleaning, and by making sure everything medical/care related is set up before she gets home. You might also need to sort out respite for you and other main carers, even if just an hour or two here and there to give yourself a break.
I don't know what her needs are, but in my case (my husband was bedbound and unable to communicate sadly) we needed a hospital bed (other equipment such as wheelchair, commode, walking aids etc might be required) and round the clock care. This was arranged through the hospice before he came home, through a thing called continuing care, and was funded through the NHS. It can be set up very quickly if necessary. We had regular visits from carers for personal care, daily visits from district nurses for drugs administration (he was using two syringe drivers), occasional visits from the GP and a link with Macmillan.
It all worked pretty well with a few blips, and knowing we were doing the best that we could for my husband made it possible to cope. I spent some of our allocation on night carers - it was a real life saver as it meant I could get a bit of sleep.
Meanwhile sending you best wishes.
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