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Terminal brain tumour and NOW c.difficile infection

5 replies

doglover · 14/11/2008 21:47

My 73 year old father was diagnosed with GBM (a grade 4) brain tumour 8 weeks ago. He had the tumour partially removed over a month ago but is now back in hospital following a seizure. In the last 2 weeks he has had 2 chest, a urine and now a bowel infection. We were informed today that he has c.diff ....... where will this end? He is in an isolation room which is like a prison cell and my heart is breaking to see my Dad suffering so much. Any words of advice would be really appreciated.

OP posts:
colacubes · 14/11/2008 22:48

So sorry to hear about your dad, I hope he is comfortable and well cared for, I have never been in this situation so have no advice, but dont be afraid to ask the questions you need the answers to, I am sure all the staff will be helpful and understanding.

Try to stay strong and keep looking after yourself, All the best, and I hope someone will be along with some words of wisdom really soon.

doglover · 15/11/2008 15:59

Many thanks for your reply, Colacubes. We will be seeing the consultant again on Monday and will have a list of questions ready to ask him and his team. I have found on previous occasions that it is all too easy to become flumoxed and forget crucial questions when faced with a 'gang' of doctors around the bed! We hope that he will still be able to transfer to our chosen nursing home in the near future to experience a better quality of (remaining) life.

OP posts:
Helms · 15/11/2008 19:34

I am really sorry to hear about your dad. I was in a similar postition with my mum. She was in hospital in the critical care ward and developed MRSA (amongst other things) and was tested for C diff. I am not sure whether I have words of wisdom but what I would say is ask for a meeting with the doctors away from the bedside. It is really difficult when they appear and you feel in a rush to ask questions before they have to move on again. I am sure that the doctors will be happy to meet with you. My experience was that when someone is so poorly, they will do anything they can to make them comfortable but it maybe helpful for you to hear exactly what they are doing.

I know that the room will have to be kept sterile but you could ask if you could take one or two things to make the room less like a cell. You may not be allowed but were told we could have a couple of photos and a cd player to play my mum's favourite music very quietly. I am not sure how aware my mum was all the time but it just made things seem a bit better somehow.

I know exactly how it feels when it seems like it's one thing after another. You will get through it day by day, I promise, but it is hard. If you want to ask me anything about our experience, please feel free. Like colacubes says make sure you look after yourself.

Helms · 15/11/2008 19:34

I am really sorry to hear about your dad. I was in a similar postition with my mum. She was in hospital in the critical care ward and developed MRSA (amongst other things) and was tested for C diff. I am not sure whether I have words of wisdom but what I would say is ask for a meeting with the doctors away from the bedside. It is really difficult when they appear and you feel in a rush to ask questions before they have to move on again. I am sure that the doctors will be happy to meet with you. My experience was that when someone is so poorly, they will do anything they can to make them comfortable but it maybe helpful for you to hear exactly what they are doing.

I know that the room will have to be kept sterile but you could ask if you could take one or two things to make the room less like a cell. You may not be allowed but were told we could have a couple of photos and a cd player to play my mum's favourite music very quietly. I am not sure how aware my mum was all the time but it just made things seem a bit better somehow.

I know exactly how it feels when it seems like it's one thing after another. You will get through it day by day, I promise, but it is hard. If you want to ask me anything about our experience, please feel free. Like colacubes says make sure you look after yourself.

onlyjoking9329 · 16/11/2008 16:09

sorry to hear about your dad.
i cant help with the infection stuff but, i do know a fair bit about GBM 4.
treatment differs in different places.
my husband had a GBM 4, he was told what type of tumour in august last year, he had the debulk op and then had 6 weeks of daily radio and chemo then moved onto one week per month of chemo, chemo was tablet form.
i will try and answer any questions you may have, i found the macmillan forum useful, there is a brain tumour bit on there.

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