We Talk Brain Tumours

Zoeteen, So sorry, I forgot to add - a holiday sounds like just what the doctor ordered. The sunshine and relaxation will do you all good. According to the lunchtime news today, the ash cloud has lifted and flights have returned to normal so fingers crossed. Hope you have a lovely time.

x

ah Naomi- some of my daughters "friends" think she's not really ill as she makes such an effort to sit and to talk if they visit-- the GP even said she's not terminally ill as she may last a few years and not months, I dont know what they think a decline of health is in a 24 yr old. She too has OCD but now we know its the tumour it does seem a little easier to cope with, as are her outbursts. She's got a thing about her floors and shoes are not allowed further than the hallway. Also does a lot of checking of switches, lights, electricity plugs at nights or when leaving the house. Her volume of speech has increased a lot which is odd-- and she thinks I'm shouting even when I speak quietly- has anyone else had this? Also she's getting worse symptoms again as they've reduced her steroids down to none-- is that the right thing to do? It seems odd to us as she seems less ill when on them. 

lots of love to all, Sue XX

Sue, It is really the best thing to be off the steroids if she can manage without. They can lower the sodium levels, affect bone density and cause muscle wasting. They do need reducing to nil very gradually, usually down half an mg at a time. This gives the bodies own steroid production time to recommence again. Like all useful drugs, they have their side affects particularly dexamethasone. Martyn.

Sue, oh my gosh - I'm so pleased you posted this! My dad keeps having a go at mum for shouting at him when she isn't?! We do know his tumour is afffecting the shape of his ear drum as he wears a hearing aid but can now no longer wear it comfortably. Dad is also obssessive about the house - we got him to the beach at Easter and he got upset about the sand on the towels going in to the house and then got distraught his washing machine might break because of it.

Dad is now down to 2mg steroids daily. At his maximum he was on 16 and they've reduced them really slowly. He's much more alert and not so drowsy when he's on the lower dose. Hope you get some answers.x

Deli, I forgot to say she cries at all sorts now too even a soppy advert.. and I think she's less sleepy now the steroids are down to nothing but her baby is teething and keeping her awake at night so that doesn't help...   x

Martyn, thank you for the info-- I was worried that to be off them might be making her worse, but hopefully she may get back some strength in the muscles in her legs then. Sue.

Dutchcloggie. Your post had me in tears. Its not an easy position you are now in but I guess you have to just make the most of the hours days you have to be able to sit with Jane and stroke her face hold her hand whatever.. I read on here that the hearing is the last thing to go so she can probably hear you and enjoy the songs that were played... Hold on in there and enjoy all your last moments with her.

Sending you love today, Sue xxx

Ah Dutch.  Such a sad situation to be in.  It's good to see that you have friends to support you through this time.  I've found that having company around helps my morale so much.

I've had Ali's parents stay overnight and they left this afternoon.  I'm feeling really low right now, I'm finding that memories of life with Ali before the cancer are almost as depressing as Ali having cancer.

When she's awake, she's been asking me when she'll be allowed to walk again.  She desparately wants to feel as though she's getting better, but it's just not happening and it's really hard to know what to tell her other than it'll take a long time.  The fatigue is even interrupting her meals.

And we have two weeks until her remaining ten RT session s start.

Feeling very low today.  Following MrSG's CT scan it's now been confirmed that his tumour has shown signs of rapid regrowth and is now measuring 4cms again (debulked in Jan).  They said it is growing at the rate of a grade 4 and his time is now limited.  Chemo, or surgery / shunts are no longer options and he now is facing palliative care only.  Can't believe this is happending so soon.  In himself he's so much better now that the 16mg of dex has kicked in, but I know really this gives a false reading as it is the steroids that are keeping him this way.

They tell me he could go at any time, or within the next month or possibly a few months but unlikely to be any longer.  Am utterly devestated, after surgery in January they gave him 1-2 years which I know is always a guesstimate and I know predictions can be wrong too.

The hospital have asked me to give some thought as to where I'd like him to be, home or hospice.  He's incontinenet (both) which they've said may continue (he wasn't when he went into hospital) so I feel it would be incredibly difficult for me to physically handle him by myself whilst also trying to care for 2 small children.

I'm also torn because I feel I need to prepare our 6 year old daughter (2 year old son won't understand) but I don't want to start her pain any sooner than necessary, but equally also don't want her to be shocked if it were to happen very quickly.  I've been giving her bits of info and she has asked me the dreaded question of 'will daddy die?' (OMG what mummy ever wants to be asked that question?) and I've gone from answering this very tough question with 'we just don't know at the moment' to 'it may happen' to 'probably but hopefully not for a little while yet'

I feel very protective of my children to the extent that I don't feel I have capacity to handle this from my own emotional perspective at the moment and can only think of how this will effect them.  Thinking more about 'daddy' than 'husband'.

Suppose this is a bit of an SOS.......

x