Glioblastoma Why Why Why <br/>

Evening all

Sorry to brag but the snow is still here!!! No hospital appointments today again - we have been rebooked for Thurs before we were due to be at Marsden, the ECHO that they need to do before we start amazingly they can email the results over to Marsden so all being well it shouldnt hold us up starting this trial on thurs.

Nothing much other than that to report here other than THANK GOD the schools have opened again for tomorrow - my 2 have done nothing but fight with one another then when hubbie comes home he gets cross very fast these days (damn BT) and shouts and makes it all worse as he cant think in advance of what his saying to them and then i have them in tears & him yelling at me too! Its been a hard couple of days to be honest and I am noticing changes with M - he is still working but coming in having a cuppa then off to bed for a couple of hours before dinner - his appetite has dropped too even though the medication is the same - small changes I know but significant ones to me.
lets hope they can get him on this trial thursday - its our only hope of buying some time since he was given 3/4 months in Dec.

Does anyone else find it really hard with the kids - I dont seem to have the head space for them at the moment and they are pressing all the right buttons these days, hubbie comes in & 9 times out of 10 they are playing up & he says god i dont need this, I cant cope - I feel like a single parent already & I'm NOT & when he utters these words it winds me up and makes me worse with the kids. its so hard finding the right balance between the kids & him, I cant seem to do right by any of them at the moment!

Anyway enough rambling from me....snow still very evident down in Surrey - made another snowman today - used a lump of coal for its nose this time Martyn!

Gayle sorry yuo've not been feeling well - I hope you feel better now

Hope everyone else is as good as can be...of to crack open the wine!

Love to all

Emma x

Hi everybody

How are you all doing today still very snowy up here in Aberdeen Carrie and Emma did you guys manage the hospital today or is there still snow??? My hubby not so good again he has not been out of bed since he started that chemo last week between sickness and tiredness I HATE THIS DISEASE its so bloody unfair will SOMEONE PLEASE FIND A CURE I am really having a bad day today feeling sorry for myself Lesley and Gayle hope you are both feeling better today Joan Diane Jampix hope your all good to I'll bid you all farewell from Aberdeen

love

Izzy X xx

Hi Lesley

Just a quickie from me too, still not 100% and heading to bed, glad you enjoyed your wee glass of wine I am on too much medication at the moment not allowed, oh well I will survive. Yeah Alister was here last week he is very nice if you see him tell him hi from Martin and I. Goodluck at hospital tomorrow Emma hope all goes well, goodnight everyone from a very snowy Ayrshire.

love Gayle xx

Hi Lesley

Just a quickie from me too, still not 100% and heading to bed, glad you enjoyed your wee glass of wine I am on too much medication at the moment not allowed, oh well I will survive. Yeah Alister was here last week he is very nice if you see him tell him hi from Martin and I. Goodluck at hospital tomorrow Emma hope all goes well, goodnight everyone from a very snowy Ayrshire.

love Gayle xx

Evening ladies

just caught up on all the posts - some difficulties that are so hard to read about but predictably echo here too

Isn't it true, as you say, Carrie, we have to learn to live in the day - ok on a good day but when the day is a bleak one, well that is a pretty crappy place to dwell... It's so hard when you feel things are going well and then really quickly, they slide - I'm afraid i haven't been posting as I've felt a bit disheartened over the last 5 days - David seems to have reacted dreadfully with the chemo (5 days one) - No nausea, just increasing confusion, word loss and horrible loss of co-ordination and balance -Of course, no one pre-warns you of this.. but rushed to find the leaflet that comes with the prescription as he deteriorated and saw 'common side-effects' included loss of speech, loss of balance, confusion and inability to hold urine etc etc - couldn't have put it better myself

Really bad last night and ended up ringing the hospital at 10.30 to be told by doc to double his steroids, so we're now back to 12 mg - I said is it oedema? is it the chemo on top of existing oedema ? and was met by the usual response - ie they don't really know ... How bleak it felt - Hardly slept, dark fearful thoughts, all my positive thinking just deserted me - Isn't it sad how quickly all your positivism can melt away...? Suddenly it feels like being back at diagnosis again - the starkness but this time I already feel older and wiser or is that wearier? I'm really starting to understand it's true , it's real, he's not immortal or different, we're not in control and that takes some getting your head round. I think it was the chemo -380mg - maybe they'll have to review the dose - his blood count etc is fine, his head isn't -

Don't think mine is either!!

Emma - your post was difficult reading - so sorry you feel you can see things changing now - I hope the trial will take you back to safer waters - I really felt for you re kids - Feeling like you're holding everything together - just as you said, like a single parent already - It's a desperate feeling - I think it's the most challenging thing of all - Increasingly our boy is getting angry with his dad - 10 year olds are too bright not to see everything thats happening but they are still too young to deal with it - He so wants his Dad back and his Dad seems to be disappearing in front of our eyes - I've decided like you to start giving him more information - not the full implications but he now knows Daddy may never 'get better' - It was awful to hear myself say the words - like i didn't want to hear them myself - and that feeling of denial and disbelief started sweeping over me again - but I've got to help him, start being honest I suppose - My daughter who's 18 was a tower of strength last night and i really didn't expect it and was so grateful for her company... I think she's done her own reading up and knows very well what we are dealing with ..

Leslie - Hope your Dad's ok -

Found your post re your Dad's office so affecting - It's like life stopped for a moment at diagnosis and then started again in a completely different pattern and we can never go back - yet the old life's still there- in memories, photos, their possessions which are still sitting in the place they were left before that fateful day, which will never now be used or needed in the same way again - All the things David valued- his tools, his car (now sold), unfinished drawings that he was working on last summer - all just left as they were on the day before we knew... What's that Abba song? the day Before you Came - something about the innocence of 'life before', not knowing what was to come - those last few days before something changed forever



Oh dear - I'm a bit bleak tonight - sorry ladies - I didn't want to do this - meant to come on for a chat ... MUST CHANGE THE TONE.... there is HOPE and some folk do carry on and I'm going to shut up 'cos I'm on a downer - forgive me...



Gayle - Hope you're feeling better - and that Martin's a little calmer - Do you think this new found energy is down to the honey and echinacea? (By the way, somebody told me you should only take echinacea daily for 8 weeks and then stop for a while ..maybe substituting it then with Aloe Vera)

Hope his good spirits continue !!!! Next trip line-dancing??? Hope you Scots haven't got icicles on your Trossachs tonight (can't spell..lol) - what's a trossach?



Izzy - Hope the nausea and tiredness have improved - Skeete's advice was very good re anti-nausea drugs and if you've got some days now before your man restarts chemo, try and get him on a supplement to help support his system - Milk thistle tablets or tincture and Astragalus capsules should help ease side-effects like nausea and they will protect his system- maybe ask your doc if it's ok - also try ginger tea - some grated root ginger in a mug of hot water and honey throughout the days he's on the nasty stuff - and LOTS OF WATER - good luck !



Carrie - you should be able to get a really good quality immune booster like Cats Claw, Astragalus or Aloe Vera gel in most health shops or buy online - the Solgar products are excellent



Karen - hope all is well as can be with you and your Mum - keep posting



got to go , knackered !

sorry if i'm a bit grim ...

thinking of yous and loved ones as ever ,

hugs all round

Joan xxxx

Hi everyone

Joan so sorry your going through such a rough time at the moment ((((((((((((bighug))))))))))) like David when Martin started the 5 day tmz thats when Martin started to feel unwell and get even more confused, he also lost his balance and falls over not all the time, but from time to time, it also made him really tired as you know, before Martin started this he was out and about all the time and had lots of energy probably due to the bigger dose of steriods also, now he never goes out the door unless he has too, saturday was an exception but I saw such a big change in my darling Martin, when he started the high dose chemo thats when it hit home just how ill he really is, although it makes our loved ones feel like this at least its blasting the evil tumour.
Re kids Martine knows her daddy is seriousley ill, and he will never be what he used to be, my personal opinion is that is enough at this stage I dont want to worry her any more than she already is, I think at times she must really worry about her daddy but she is frightened to ask because she is afraid of the answer, kids have a good intuitiotion, I go to a counciller at the ayrshire cancer support and also go to cpn and I have spoken to both re Martine I have even been given a book called the big c by winstons wishes to give to Martine to read, but it mentions that cancer may kill so I decided against it as I feel there is no need for that at this time.
Hope you feel better today Joan, its horrible when you feel so low been there so many times, and also hope David picks up a bit, Martin is still doing not to bad at the moment thank god,I think a big part of it is down to the supplements, do any of them cause diahorea, Martin has had a fair wee bit in the last few days.

Emma good luck with the hospital today hope all goes well for Mathew.

Lesley woke up to lots of lovely snow this morning looks like it might snow again sky is very white, yipee if it keeps up I will go out and build a snowman with Martine after school today, it was nice to see all the kids playing in the snow in the playground this morning.

Izzy hope your husband is well and the nausea has passed, I bet you have plenty of snow where you are.

Carrie I hope your husband is feeling a bit better today and all goes well at the RT

Karen hope your mother is well and your doing ok too.

Diane sorry to read that you are going through such a rough time too, are you still at your work? We recently got a walking frame for Martin this has made him much more independant and gave him back some confidence that he was lacking, hope things improve for you.

love Gayle xxx

Evening all
Just a quick post tonight - sorry havent the energy to reply to other posts tonight - but surfice to say I am thinking of you all -

Just a little update from my end......after a very early start this morning we made it to one hospital for an ECHO which was normal, we then went to the Marsden and he had more bloods and tests, which came back clear, we then waited 4 hours and hoooray he has been accpeted on the trial and took his first dose at 3.30pm, I am shattered as he is too, a very sleppless night and a lot of waiting around today but hopefuly it will all be worth it. We came home with 2 huge bags of drugs and a blood pressure machine! Yep now I have to take his blood pressure once a week and record it all in a book! What the hell I'm looking out for I have no idea!!! I am gasping for a few glasses of wine but dont want to incase he has some side effects so am going to behave tonight!

Looks like the schools could be closed here tomorrow again as more snow expected over night - can you hear me groaning!!!!!

hi to everyone else hope you are all as well as can be.

Thanks for all your support

x