We Talk Brain Tumours

To you all lovely people still struggling through such difficult times just to say I think of you all and send any spare strength I have left. x

Hello everyone, I havent posted for a very long time, I really hope everyone is coping as well as possible and even though I havent been on here you are still all in my thoughts.

The reason for my post is to lett everyone on here know about a group that has been set up on Facebook called friends For Life, its a bit like on here, where everyone can chat and support each other, it would be lovely for people on here to come and join us, if there are any problems getting onto the group you will be able to get onto it through my profile Julie A Sagar, the link is om my wall.

Love to you all

Julie xxxxxxx

AGHHHHH - My sister has just put the phone down on me. Today has been difficult - my mum has had the MRI and we don't know the full results but they have put her back on dexamethasone (I asked last week why the GP hadn't considered it, but her husband said taht he was sure the GP would have recommended it if it was needed - another AGHHHH! He just can't comprehend that his GP isn't God and that possibly isn't completely up-to-date with the best treatment for GBM). But me and my sister were on the phone talking about todays events, what the consultant may say on Thursday, what options might be open etc and then she started getting shitty with me and said "If you don't mind I don't want to talk about this anymore". I couldn't help myself and replied sarcastically "Oh, I'm sorry if it's inconveniencing you to talk about our own mothers brain tumour and ...." at which point she put the phone down. We shouldn't be falling out.

My mum refused to stay in hospital any longer so they let her come home this afternoon as she was getting herself in such a state in hospital. But then when she got home she refused to get out of the car. When I spoke to her husband earlier she had been there for nearly 3 hours, snuggled up in blankets in the sun dozing. Every time it was suggested that she'd like to come in she snapped at him and told him to stop nagging and that she was perfectly comfy. She didn't want any tea and was quite happy where she was. I don't know what has happened and it's very clear that her husband desn't want us to keep phoning, whereas | want to know what's happeningon a daily basis. And like now I want to know whether he has managed to get her in or not. It's almost comical.

Anyway I've got lots of questions about hospices, Sue Ryder, Mac nurses, district nurses, Marie Curie nurses etc etc but will write again tomorrow when I'm a bit more coherent. I'm full of rage with my sister, but also incredibly saddened. I'm full of frustration with my mums husband but full of admiration for what he's having to put up with. The Brain Hospice website is indicating that we are in the final weeks, so should I just say that I'm going to move in with them for that time. Or is the dexamethasone going to have an effect that is going to buy us a bit more time? It's just all so frustrating. (But my lovely husband even though he didn't know about the arguement with my sister has just come home from Sainsburys with some Green and Black Fruit and Nut - there must be someone looking after me!!)

Hi, you send up beat and cheerful, I have had a pretty awful day and I am not even diagnosed (see my post) hope you fight all the way.

Regards

M

We seem to be at the same place with my mother as you are with yours, awful subject but nice to know we can share discussions / frustrations and speak with each other, I am to afraid and feel that we are in the final months / weeks for my mother...

Regards

M

Dear Sallye-I really feel for you. Emotions will be running very high at such a difficult time as this. People say things they dont often mean and it all turns into a mele of confusion with all sorts of things being verbally thrown around. Although our heads tell us that we should all be pulling together and not apart our hearts often tell us different. Very difficult times for all. Also you want concrete answers to questions that no one can give you. Sorry-no magical solutions just to say I know where you are. xx

Months ago we knew something was wrong my dad, he was confused and his memory was shot. After months of dealing with different doctors telling us he has dementia, dad had what we thought was a stroke. We ran him to the hospital after some tests they sent him home and said their was nothing they could do. He slept for 2 days and he could not stand without falling to the left his face was droopy. So we took him back to the hospital. They ran more tests and told us it looked like a large ms lesion in his front right lobe, but they were not sure. They sent him to NHN in queen square they confirmed a large tumor was growing. His biopsy was last week and yesterday we were told he has stage 4 glioma tumor in his right frontal lobe. They are only offering 2 weeks radiotherapy and no chemical chemo.

I hoped for the best and we got the worst, but now what

Im lost, do i fight the doctors demand more, he wants to fight. He was a healthy 50 yr old man and now hes tired is lacking mobility. He knows his condition is terminal and wants a chance to fight.

I have no clue as to what our options are, what to expect or where to go.

Hi dshaw,

You have taken the first step to help, support, advice and friendship by posting on this thread, although we realise that you would far sooner not be here.  It sounds as though the doctors are just offering Dad a palliative course of radiotherapy due to the advanced state of the tumour, this can vary between 5 and 10 sessions. I'm afraid your post echo's many, in that an early diagnosis was not made by the medics, it takes an emergency to swing things into action!  My experience is with my wife's grade 3 astrocytoma, but the majority on the thread have much knowledge of grade 4's and I'm sure they will be chatting with you shortly.  Does Dad have a macmillan nurse yet? they can answer your questions and start many balls rolling.  You are within your rights to ask for a second opinion if you so wish, the GP should also be seeing Dad quite regularly now.  I'm sorry I can't be of any great help to you, but as I've said support and advice should be along soon.

The very best wishes to you, Dad and family. Martyn.

Hello Dshaw- my Husband too had a GBM4 the same as your Dad's but in his temporal lobe. They are the most aggressive and fast growing of the tumours so I can appreciate your frustration that it wasnt diagnosed earlier. As Martyn says it sounds as though the treatment they are offering is palliative. Sometimes if the tumour is quite advanced they will offer no surgery or chemo as they will weigh up the adverse effects of this against the benefits it may have. My Hubby too was a fit 50ish man who wanted to fight. The positive attitude and wanting to fight is beneficial. It is early in his diagnosis so it is normal for you to all be in shock and we all hope that it will turn out to be something else. I dont think there is anything to prepare us for the diagnosis we get- especially the terminal bit. In some hospitals you are assigned a specialist Nurse-one who works directly with the consultant and is able to answer any questions you have (going to the consultant if they need to). We found ours invaluable as he was always available on the same day to quell our fears. It is natural to want to explore any possibilities to help your Dad but remember his quality of life too. I know that is hard when all you want is to have him around forever. Wishing you luck. Keep posting. You will get lots of support on this lovely site., x x

Hello Everyone - another sad day - I am sure all our thoughts are with Gayle and her family today xxx