We Talk Brain Tumours

Hi Jenny

I'm sorry to hear about your Dad.  I agree that it is very hard watching someone you love deal with this nightmare.  I'm sorry to hear that the treatment has been stopped.  Gill decided to stop hers herself, and I think that makes it a bit easier to accept.

I keep looking at the Brainhospice website and going through the list of symptoms, the only problem is that Gill has symptoms from all stages and doesn't fit into just one.  That doesn't help with frustration of not knowing! 

I also agree that there should be more information and support for the families.  I know that dealing with this has driven my father mad because they will not tell him anything.  All of the information he has found, he has had to seek out himself and it's just not right.  I understand why they won't commit themselves to time scales, etc but they really should go through more of what to expect.  For example, Gill's eyesight was fading at a rapid rate and only when she mentioned it to the Consultant was she told that the steroids can cause cataracts!! 

If you ever want to chat just private message me on here, etc. 

Take care,

Charlotte

xx

Hi Jill,  I am so sorry, but I completely missed your post.  It is so nice to hear from old friends. I spoke to Jim a few weeks ago and we brought each other up to date.  I hope the break does them both a power of good, we are still to take the plunge.  Keep popping back and saying hello.

Love to you and yours. Doreen and Martyn XXXX

Hi Jenny, thank you for your wishes, today has started quite well.  Fingers crossed. XXXX

Hello Charlotte,  I hope you got all the information you asked for. I did respond to you on this thread shortly after you posted.

Best wishes to all, Martyn.

Just want to wish Doreen a Happy Birthday and hope you are well too Martyn. xxxxx

A big hugs to all that are in need xxxxx

Hi Martyn

I did get your reply, sorry I didn't respond. 

Many thanks

Charlotte

Hi all,

My Dad has a new (and very distressing) symptom of grand mal seizures. If you have any information or experience on how these can be treated in brain tumour patients (i.e., medication, dose etc) please could you let me know.

He is currently back in the hospice after a brief few days at home.

Thanks in advance.

Jox

PS I have also posted this message on Glioblastoma Why Why Why so I apologise if some of you have read it twice.

Hi Jo,  I hope by posting on here that you will receive answers to your questions.  I care for my wife who fortunately has never had a grand mal, she has only ever had the petit mals and vacancies.  Many folk who post on this thread do have the experience of coping with the grand and I hope there will be one along shortly.  I am assuming that Dad is taking anti seizure medication and maybe still dexamethasone? I am sorry I can't be of much use to you, but I didn't want your request to go unanswered for any longer.

Best wishes to you and your Dad.  Martyn

Hi Joso, You don't say what kind of 'grand mal' seizures your father has and i don't know if he is able to describe them to you but although they are very distressing to see they are not usually distressing for the patient.

Thank-you Martyn and Fitz for your replies.

I feel a bit more reassured. Yes, he is having tonic clonic seizures and his breathing suffers during the fits (he has to have an oxygen mask on afterwards).

Thank-you for telling me the medication you have to control them. The hospice doctor has put him on clobazam for now. If you know any pros and cons for the different medication let me know.

Thanks,

Jo

x

Hello all,

it has seemed very quiet on here this week - hopefully this means that everybody is ticking along not too badly.

Martyn - how is Doreen? I think of you and her often.

My mum has had a good 3 weeks since starting on the dexamethasone again, but at the weekend she started to go downhill again. Then on Wednesday she found out that a very good old friend (same age as my mum) had died unexpectedly that day which panicked her a bit I think. She's now had the most dreadful pain in her head for 2 days -has had to have the doctor called her out to her both days. She can't move her head due to the stabbing pain, can't open one eye and daren't try and move her neck. She is asleep quite alot but then feels very sick upon waking but can't move her head because of the pain. The GP is treating it as migraine (??!!??) and I do wonder if it has been brought on by the shock of finding out about her friend, or whether it's the tumour taking over.

Last night she felt a bit better for a while so phoned me, my sister and her oldest oldest friend to say Goodbye as she had been in such pain and tryuly thought that was the end. Blimey, that was a hard phonecall. But as she was feeling a bit better I didn't rush over to see her today but now find out that she's been just as bad today. I feel so bad as  I really can't go and see her this weekend ( well obviously I will if things get even worse) but am planning to go on Monday.

Does anyone else have experience of this excrutiating pain? And if so what did it mean?

Sally xxx