We Talk Brain Tumours

at the moment she's not undergoing treatment, Kings are doing a watch and wait policy and controlling symptoms with meds. They say the tumour is too large, infiltrating healthy brain tissue, and in too dangerous a location to treat and as its slow growing they dont want to worsen her condition which can be done apparently if they damage healthy tissue - can stop her speech and mobility or even worse.. so maybe that health visitor was looking at Rachel not ever getting better. Rachel had a conversation with another health visitor about it who said that the other one had no right to say what she did.  I was there when she said it so I know its not Rachel getting confused. I wrote it down too.

Anyway, if (when?) it comes to the worse case senario my son will step in and have the children. It's practical help NOW that she needs, and I've spoken to social services myself and they said they have NOTHING in the way of home helps for younger people, only older ones.. I've spoken to the Red Cross who say they can help once a week for 4 weeks (starting when tho?) as she went into hospital and I've contacted Crossroads.. any other ideas much appreciated :o)  XX

What support does your daughter feel she requires at the moment? Is there Homestart scheme in the area? Has the Children Centre got any family support workers? they may help. Charity organisations? grants from Macmillan? It sounds as if youve tried most channels of support. Has she got any friends who may also be willing to offer practical help? Wish there was a majic wand. Does she get DLA if not she could apply that may help so that she could pay for somechild care. Does the 4 year old attend school as they too maybe able to help- breakfast and after school clubs- school may help with the funding given the situation.Can you tell Im running out of ideas now Susie what is hard is that in another area there may be resources which is so wrong as there are inequalities.

Dianne J xx

What did Crossroads say?

well just an occasional home help would be wonderful.. homestart did call but can only offer a group for her to go to, she does go once a week to a cancer drop in centre, and they are lovely there. DLA has been applied for so when it comes through she will have to pay for a cleaner as theres no other way. We asked and arranged for 'friends' to help with cleaning when she moved but they didnt turn up. The 4 year old now goes to a nursery twice a week which is wonderful but it still leaves her with a very boisterous child the other 5 days, plus of course the one year old baby. Yes it does seem to vary from area to area, that's why she moved, it was even worse where she was! Still waiting for Crossroads to call back. XX

I should have said regular home help (not occasional) X

Hello. I am new to this thread. I was on this site for a while 2 years ago when my wife was undergoing treatment for her Grade II Astrocytoma. Since then, it has become a Grade III and the chemo no longer works. Effectively, they have given up on her and we are now waiting for her to get worse and worse. No idea how long this will take but they said 'months'. I have given up my job to be her full time carer. Jane was already in a hospice once when things were going badly last year. She improved due to a massive dose of steroids. We are trying that again now but this time it does not appear to be working, which indicates the deterioration is related to tumour progression this time.

i am a prolific blogger. Although i have not blogged on this site for 2 years, i keep a regular blog on my own site http://bouncybean.blogspot.com. I will double post my blogs on here from now in again though.

Point of my post is that I am now starting to struggle a bit with asking people for help. I feel I don't have that many close friends who live near so I need to start asking relatively new 'aquaintances' for help. This feels like a big thing to ask of people I only know superficially. So, I might need to rant here at times. Just so you know.

Rant away DutchCloggie...you will be in good company.

Cathix

Catg that is such a brilliant idea, I wonder if all chemists can/would do that.  I was on 200mg of Tegratol (carbemarzepine) twice a day for seizures - which I should point out, I've only ever had one tonic clonic seizure which got me diagnosed back in Nov 2008.

However, being a wife and busy mum of 3 kids aged 13,15 & 17 this year, I would take the morning dose with my first cuppa tea of the day....but evenings well, with homework, a karate club my husband is chief instructor of (and I do everything else bar teach!).....9 times out of 10, I forgot to take it.  My memory is really bad since surgery & radiotherapy.

I mentioned it to my oncologist who, despite me only ever having had the one seizure - so far - wasn't keen for me to come off entirely.  So I now take 400mg first thing in the morning and don't have to worry about the evening dose.

I also had what I call "old peoples pill boxes" and I call them that because my uses one for when I was on TMZ, my husband made them up as I am at home on my own between 8am and 4pm mon-fri and I would get in a right muddle.  Even with them in the separate compartments,  I used to get confused as to which was which and what to to take when......but that's just me Dorey brained Debs!

Susie, I hope your daughter's situation gets better, I wonder if one of the brain tumour charities would be able to help, someone like Samantha Dickinson Brain Tumour Trust or BT Buddies? 

Love & Strength to all on the train

Hi All

. Went for results of baseline scan this morning and had bag full of paper handkerchiefs and Diazepam.

First bit of positive news at last. Told that it does not look as though tumour has grown and that the centre looks like dead cells. Not to go back till 4th July unless there is obvious deterioration.

Am feeling bit numb......its not as though we are off the train ..only a temporary respite. We shall try to do as much as we can in next 3 months though. Mentally its a relief.

Keep well all

Cathixxx

HI ALL

great news Cathi xx enjoy the the next few months xx

We have had an early mothers day yesterday as mum going down hill, not getting out of bed now, she is supposed to start r/t tomorrow, and now today  I made stew for her lunch and she asked me to blend it into soup as she cant eat properly, as mouth is sore and finding it difficult and saying she not that hungry now, she is sleeping more and more now during the day and not getting out of bed unless necessary  or seeing anyone, my poor dad is now getting upset daily as she is more nasty towards him and a few others family members being mentioned in a nasty way by mum now too, I feel we are getting closer too that dreaded day xxx

LOVE TO ALL AND THINKING OF YOU DAILY TOO XXX