We Talk Brain Tumours

OOh South Coast sounds fabulous.  Teen, maybe dad feels he needs some time alone, if he sells up he may be back in no time and wherever he goes if in the UK it will be travel-able (not sure if thats a real word). I am sure those of us with suffering partners can see his point of view though not sure I could go through with it.  You won't lose him, he will be somewhere contactable but where he needs to be.  Try not to get too upset about what may happen you need your srength for what is happening

jms xxx

JMS - hope Paul is feeling better, thanks for words xx

Get that massage and ring cancer lifeline, have a well deserved break xx they may have more places to go not sure.

Teen x

Teen,

My heart goes out to you - like has already been said perhaps how your dad is feeling right now is panic and gut reaction , perhaps when it comes to it he might feel differently!

JMS - glad to hear your fab news , so pleased for you both .

Lots of love

Mandy x

Finally, an update. Sadly it's not good.

My mother is having no more chemo or scans at all. As we cannot have her at home, my dad is looking into a care home, which i'm not particularly happy about as it's not a hospice where she'll get more care as she becomes worse. We have funding for it which is good as my mother has moved up the scale. The word pallative has not been mentioned - i'm thinking the doctors might assume we're not clued up at what she has and they don't want to tell us. To be honest, it makes me angry being kept in the dark by the doctors.

My mother does not know nor comprehend how serious her condition is. My dad has made an attempt at telling her today but she cannot comprehend what she has nor how serious it is. She thinks that she's getting better. I did try getting a list of all her medication but there really is allot. She's on 4mg steroids and epilepsy medication which is surpressing the seizures at the moment.

I'm one for knowing the truth and I know nothing will prepare for the inevitable but i'd like to know how long she may have if it was at all possible to know. I hate waiting for her to get worse.

Hi JM7 and everyone. My husband  who is 52 was diagnosed with a grade 4 glioblastoma in July 2009 had surgery,radio and chemo (not the whole 6 months though cos of low platelets). He had his scan result today and it was ok no regrowth such a relief!! We have been informed that his glioblastoma would have been a grade 3 before the Who grading changed in 2007 and that it contains a large amount of oligodenglioma.

Very happy to hear of everyone else's good news and also very  very sad and sorry to hear the awful sad news on this site.

Hi Stephen,

It really isn't good enough that you are not being informed.  Is there an oncology nurse at the hospital? there is often one who's role it is, is to liase between doctor and relatives and plain speak.  I have found sometimes they are difficult to locate and often don't make you aware of their roles.  Ask if there is such, does mum have a macmillan nurse? press for information, become a nuisance if necessary, I did.  I don't care if they class me as a pest as long as Iget the relevant information,  need to know!  I wouldn't personally be asking how long,  live for the now and give each day it's very best.  4mg steroids isn't a particulary high dosage, they generally work to a maximum of 16mg if required.  Go to it my friend, get Dad's ok and respectfully get all your questions and concerns answered.  Take care.

Hi Siani,

I'm obviously out of date with regrading of tumours, could you let me have any more information please? Thank you.

Best wishes to all. Martyn XXXX

hi Siani this sounds interesting how did you find out about different grading, when you husband was diagnosed was this grade 4?  So pleased to hear no re-growth just the best news you can hear !!!  My husband has been awful since wednesday though think he may be depressed not showered or dressed for two days but sucess today managed to shower he has admitted he is worred because they said he needs an MRI in three months aswell as CT scan, told him that this was standard procedure which the drs had said but when he first became ill and had ct scan that was clear then they found tumour on the MRI which we had to beg to have and got it due to a friend working at the local hospital !!  Hi to everyone and hugs to all xx

Hi Paul, sorry to hear your news, if I can be of any help to you please just ask or pm me I have friend requested you.  I totally understand where you are coming from as I have the exact same feelings.  I have indirectly asked the question to various medics.    How old is your mum, do you have a mac nurse?  My husband was diagnosed in July 2010 and is 49.   Take care xx

Oop Oops so so sorry Paul I did mean Stephen , such a clot xxxx

Hi JM7 and Martyn. After his first surgery in July 2009 the surgeon removed part of the tumour and it was graded as a grade 2 oligodenglioma. He was due further surgery in November 2009 to try and take more of the tumour out. Unfortunately during this time a large cyst developed on the tumour  causing more problems than the tumour! He had his second surgery November 2009 and recovered extremely well. The diagnosis after this operation  came out  unfortunately as glioblastoma multiforme, but as it is a mixed grade glioma witha significant amount of oligodenglioma it would have been classified as a grade 3 before 2007. We have seen the letter recently that the oncologist sent to the GP stating this from the histology and we have recently discussed it with the oncologist himself. I should imagine that there is something somewhere on the internet about the WHO classification of some  brain tumours changing in 2007. My husband's next MRi will be in 6 months time. Sorry your husband isn't feeling too good JM7.

Thinking about everyone.