We Talk Brain Tumours

Fantastic news Cathi, I always feel I can start to properly breathe again after a scan result like that.  Even if it is just for 3 months at a time, mine has gradually got longer between each visit.  I know it will change at some point, but hey it's great while it lasts

Love & Strength to all.

cathi, I am so happy for you all, enjoy the next 3 months, course you will be exhausted for the rest of the week as you get over the mental planning and preparation for todays visit!

Teen, try crushing some ice cubes for your mum, it will numb mums mouth a little and make it feel more bearable for her.  Have you also checked to see if there is any infection ie thrush?  if so you can get treatment from the GP which will act rapidly?

Debs - most chemists can prepare the blister packs, the only issue comes when you change doses frequently but they should be able to cope with it as long as you keep them informed. 

jms

Hi Susie sue, obviously I don't know your exact position, but I work in a school nursery class and children aged 3-4 are entitled to 15 hours per week, however, certain children are entitled to more hours (used to be full-time places, but at my school that is all pretty much phasing out for all but the most severe places) you may find your daughters 4 year old might be entitled to more hours due to home circumstances (at my school we have offered them to children whose parents are ill or who are ill themselves with things like epilepsy) this will vary but it REALLY is worth asking the head/manager of the school/children's centre. This link is about Lambeth which is not where i am but thought it might be useful.  In my humble opinion schools aren't as considerate but children's centres are great as they deal with social workers etc so much that your daughter's social worker might be able to put a word in. Worth a try?

http://www.westminster.gov.uk/services/educationandlearning/childrensinformationservice/nursery-places/

love and hugs to all reading and writing.

Mother's Day this w/e, not dreading it too much a I gave mum a card to take 'with' her, but think it will be a sad day, just hope no-one at work asks me what I'm doing for it!!!

x

Hi all, cathi so pleased to hear your news and hope you manage to cram in lots of good days! So sorry to hear your news susie sue, wish i had advice for you but i think its all been said by everyone else! I'm not too familiar with the medical/ financial side of things as my dad is her main carer but i'm all to familiar with the emotional side of this hell! Zoeteen, i know how you're feeling at the minute as my mums steady decline seems to be becoming more rapid. She has been increasinly tired and quiet over the last week and sounds like its too much effort when she does talk and today has started with sickness and diarrhoea which is giving her a massive headache but morphines making her sick. I dont know wether to think this is deterioration or a stomach bug that has knocked her for six. Sorry for rambling. Love to all xxx

Am also dreading mothers day and what it will bring this year x

thank you idreamofFigi - we'll ask if they can let him have more time there (he has his 15 hours) X

Hi

Thanks for ice advice JMS, we have thrush treatment and some other mouthwash, but will try that too xx

Susie Sue sorry I cant offer any advice but keeping up with your post and wish I lived nearer to help,

Cathi, sorry to rant and spoil your good newsxx

Loulou, and all thinking of you xx

Teen x

Just on my way to my mum. Had a call off my dad to say he thinks shes gone into a coma. Feeling numb x

Loulou - oh no.  My thoughts are with you and your family today and to everyone suffering this horrible illness.

Yesterday we took my mother in law to Addenbrookes to discuss having a biopsy.  We saw a neurosurgeon who confirmed that he could do a biopsy and then a small intensive course of radiotherapy.  He could tell that Pauline has chosen to not know anything other than she has a tumour so it was really difficult to discuss anything infront of her.  She then became very distressed and emotional so my husband took her for a walk and left me and her husband to talk with the surgeon.  Basically he confirmed that it was incurable and although radiotherapy may extend her life by a month or so - because of the treatment it would take away her quality of life.  He felt that as she was doing so well on the steroids that we should continue with this and take her home with no extra treatment.  My father in law asked about prognosis and he felt 3 - 6 months was probably about right based on the size and growth of the tumour.

We had all been expecting this but god it was shocking.  You hope that may be the surgeon is going to say that he could try and cut it out.  But having seen the scan shots now I see that this is impossible.  

This thing has come along from nowhere and in such a short time it will take her away.  She is longer the woman that she was and is slowly changing in front of our eyes every day.  I always said how lucky our family was as everyone seemed to live until an old age without any serious illness - how wrong was I.

My thoughts are with you all today - I have a feeling that I will be dumping onto this site regularly over the coming weeks.

xxx

Loulou sending love & strength to you at this time.  

Frizzer, again........what does one say that will ease your pain.  All we can do is offer our cyber shoulders to lean on and lean whenever and as hard as you want.  Collectively we have the broadest shoulders here.

Love & strength to all on this journey.