We Talk Brain Tumours

Guess I must be one of the old ones then - in more ways than one

But totally agree Mandy. Thoughts with Lozzy in these difficult days.
And sending strength to everyone struggling today.
CHxx

FJC,  thank you for your kind thoughts.

Lorraine,  our thoughts are with you and Peter at this difficult time.  You have been a great friend and support to Doreen and me.

Robin and Jan, as always our thoughts are with you and the children.

LDW,  I do hope Dad is getting the best and your communications with the medics have improved?

Best wishes to all.  Doreen, (who makes Rocky appear a wimp) and me. XXXX

We found out on Thursday that mym mums tumour has regrown - we were expecting this news but it's still  horrible news. The doctor that we spoke to didn't think that they would try and remove it again - it will be discussed at this weeks meeting at Frenchay, but she didn't thik that they would think it was in my mums best interests to do another debaulk. Also due to my mums intolerance of the chemo last time they probably don't want to try chemo again, although if we really wanted to they might try a course of PCV. So it seems that the tumour has regrown and there is no further treatment available, except dexamethasone to reduce the swelling. We didn't ask the question about how big the tumour is and where (will do that next week) but the doctor asked if we wanted to know timescale and she said she thought we were looking in the region of months. So thoroughly depressing news.

Sally xxxx

Sally-a truly horrible time for you. I remember it well. You really want to explore any options but inside know that quality of life for time left is main priority. My heart goes out to you. Sending you strength for difficult days and decisions ahead. x

Sally, that is very hard news indeed. Y&Y is right that quality of life is so important now. It's so hard though. Sending you a hug.
CHxx

Hi all newbie here... I've not managed 2 read all the pages but just wanted to say Hi.

My Mum was diagnosed with a brain tumour, it was very large and quite aggressive in fact they operated within days of diagnosis. They've told us they have left quite a bit there and have hinted at radiotherapy treatment. But we are all in limbo at the minute and do not know where we go or what we do. Hospital is having a meeting on Wednesday so I suppose we find out more then.

If any of you have any advice or experience of this please get in touch.

Thanks

Hi - Worried Now

Sorry to see that you have jouined us - but you have found the right thread here.

Might I suggest that you copy and paste the rest of your other messgae to this thread too, as this one is the short version !

I expect someone with some ideas and help wil be along shortly.

Best wishes - Robin

As suggested by skeete... here is my other post

Hi... I have a million and one questions floating around but can't seem to find any answers on here.

At the hospital we can't visit until 2pm and yet Drs do their rounds in the mornings so we can't even speak to a Dr. It's getting to the point where I want to write down a list of questions and leave it with Mum so that the Dr can answer them for us.

Mum was being treated for a kidney problem and while on the tablets she started getting massive headaches. On informing her GP about the side affects of the tablets he told her to stop taking them. Turns out no there is no kidney problem and she did not need those tablets. 4 weeks plus later she was still having this pain in her head. GP prescribed migraine tablets, hospital told us to give paracetamol.

Anyway, a week ago Sunday she could nothing for herself. Not even pick up a tablet, she then fell out of bed and we couldn't get her up. So we called an ambulance, she'd been in hospital the Wednesday before and A&E Dr told Dad to take her home and give her paracetamol. This time we had decided we were not taking her home. They gave her a MRI scan and decided she had a mass. Our local hospital does not have a nuerology department so they sent the scan to nearest hospital that does. They did not have a bed available but told local hospital to keep her stable until they did. She was given pain killers and and anti swelling drugs. She was diagnosed with a tumour.

On Wednesday late afternoon she was transfered to the other hospital and when we got there a hour later she tells us she is going into theatre the next morning. So on Thursday we are told they removed a large, aggressive tumour but did not take it all. They would review her situation this Wednesday but were leaning to any other care as radiotherapy if they did not operate again.

Now I've looked here and learnt a lot more on tumours and radiotherapy but I still have questions. I see people talking about their grade of tumour... I have no idea what Mum's was/is apart from it's big. Is this something we need to know.

Also we have a family holiday booked on the South coast in 4weeks time I'd be devastated if she missed it due to radiotherapy. Do you think a local hospital down there would be able to do a weeks worth of treatment if they had all the information or is that not possible.

Questions, questions, just don't know what to ask or when

Sally

Those words "no further treatment" have such a devastating impact, even when, as you say, you are expecting it. Know just how you feel. Have been living the aftermath of that for two months now ...............

Have a hug from us - Robin

Hi WorriedNow- sorry to hear the lengthy diagnosis your Mum had. A story all too familiar I fear. Dont be ruled by visiting time. It isnt as though your Mum has had a tooth out and you visit to give her a bunch of grapes. Tell the nursing staff you would like to speak to a doctor about your Mum and they should arrange for you to be on the ward when they do their rounds. If not persevere. The grade of the tumour will determine how aggressive it is. Graded from 1-4 with 4 being the more aggressive. As for the questions about radiotherapy maybe that is something you can ask the doctors when you speak to them. They should have an idea of timescales for starting radio and can discuss with you. Good luck and anything you need to know you can ask on here. There are lovely people with a wealth of knowledge and once you know the type of tumour your Mum has someone is sure to have had experience. x