Glioblastoma Why Why Why <br/>

Sue & Gayle thinking of you both today - got everything crossed
love & hugs to you all x

Hello all,

Gayle - fingers crossed for today, hope the hangover has subsided and you got some sleep eventually. I know you will have been ill with worry for today. Lots of love to you and Martin xxxxxx

LORS - what a horrible weekend for you and your dad...and for feck sake rant away..i think you are entitled!! I never knew either about carers being paid for. My dad had a chest infection which floored him completely and put him in hospital last month. we needed three of us to get him in and out of the shower and clean up after a few accidents. I can totally see where you are coming from, and i think you and your dad would benefit from a little help from outside..as hard as that is to accept i know that we will too. Although dad is 'back on his feet' and he recovered from the infection quite well, i think we saw a glimpse of what is to come and agreed that it cannot be left all to mum during the week- it is a physical impossibility. Its so difficult isn't it. Whatever you decide will be the right thing for you all.
In regards to work, have you thought about a leave of absence for a short spell? (Sorry if im butting my nose in) i think you could maybe do with some time off too, there is only so much you can take before you crack and your health is way too important....Anyway I hope you are doing as well as possible Love....(((big hugs)))) xxxxxxxx

Lesley - how are you love? not long to go until your back in work :( are you returning full time? Hope you had a nice weekend with your family xxxx

Lots of love to everyone else on this particularly bleak day in Glasgow

xxxxx

Hi everyone

Fantastic news for us the tumour has shrunk, very much the scan looked so much better, there is very little tumour there, that shows that the tmz has been working thank god, thanks to all my lovely friends for all your good wishes, its very much appreciated, I am off to lie down for half an hour so tired now, never slept last night at all.

love Gayle xxx

Gayle- HOW FANTASTIC!!!!!!

All our love to you - so happy things are so good

joan xxxxxx

Hi guys

Thanks so very much to you all who replied to me re care etc for Mum, means so very much to know there are so many nice gems out there - you folks to give me advice etc.

I went to work today, slept ok last nite had a really sore head (stress I think) so the painkillers that I took for that knocked me out, I contemplated whether to take leave or not but my Auntie was coming beside Dad this morning so decided just to go in, Mum has been in bed all day, Dad and Auntie managed a bed wash and she had some toast for brekkie then woke briefly to have some home-made soup for lunch she still sound as I type this, I phoned Social Work Service who we had been in touch with before re a care plan, I really think its this hospital that is putting Dad off as he would not be able to sleep in the same room beside her and he is petrified that she takes a seizure and he does not know, I even suggested baby monitors if he felt that way, sometimes its so hard as I see it as being the best all round, then carers would come in no problem as a hoist would be there for them to lift Mum, the money is no object, as they do get benefits, its the principle I feel of having to pay for something when you are under 65 years old its not as though my Mum asked for this and I just feel as she has worked hard why not, but if we can get carers I feel it would be a huge help to Dad and I think slowly he might come round to the hospital bed, think my Auntie will be down this week in the mornings then Scott and I finish work on fri for 12 days so within that time I will need to try and get something into fitting re care, OMG I never thought it would come to this but just goes to show that this awful illness does more damage to anyone than any other illness I know. Doc came in today and she on another course of anitbiotics, I know Becca you said that a chest infection floored your Dad think you mentioned it did Martin too Gayle so maybe that is why Mum is alot weaker, I am just so scared its to do with the tumour too so hard to tell as she has not had a scan since last year anyway folks as I have done since May 07 I have to have hope ...................................

Gayle - So chuffed for you and Martin and Martine, I knew by how you said Martin had been that it was gonna be a good one as he doing so well, you deserve it so much, chat soon my friend x

Lesley - Thanks pal for being there for me last nite, I phoned Mum's mac nurse today to ask advice as I could not get hold of Shanne, sometimes I have a job with her on the phone as I am so broad scotch and with her being welsh, anyway Alchay Mum's nurse gonna ring me tomorrow hopefully I can get something sorted out soon so worried for both of them at this time as all dad needs is to hurt his back and thats it, hope your Dad getting along not too bad chat soon xx

Becca - Thank you so much for your post, glad your Dad is over his chest infection, just so hard for us to see them so ill eh, I am off on leave for 12 days then will need to seriously consider my work situation was reading the policies on special leave and reduced hours etc today, even if it comes to it I am sure I would get signed off or if it means spending time with Mum I would even take unpaid leave for a few months sure Scott and I would survive even if it was beans on toast for the tea!! Love and hugs to you always xx

Carrie - Thank you so much for taking the time out and chatting to me re care, must still be so very raw for you but its much appreciated you being able to give advice to me, good luck for when you go back to work, thinking of you xx

Sally - Thanks for your message, as I said its not that we don't have the money to pay for care I just think its shocking in this situation that you have to, glad your Mum a little better.

Well guys off to see if this Mum of mine will awake to have some dinner.

Love to each and everyone of you Lorraine x

Still struggling to catch up with all thats happening on here.

Gayle text you earlier to you know that someone is watching over you - enough crap has happened this passed month so really pleased for some good news at last - long long may it continue - enjoy champers & I hope you got 2 bottles!!! xxxxx

Julie - I know your away - not sure if reading but my phone was barred and your message only came in yesterday - FOR GOD SAKE LOOK AFTER YOURSELF PLEASE - and that is an order xxx ph back on now so call me if I can help xxx love to you and Stephen x

Becca - as always lovely to have a text from you to - keep your chin up & keep doing what your doing what an amazing support you are for your mum - big hugs xxxxx

Lorraine - sounds like you are going through the mill a bit (sorry not read back just read todays) I so hope that the care at home you get up there is better than down south after 10pm at night you get the on call doc and your lucky if they turn up - even if they do they do sod all! BUT i cant promote the hospice matthew went into enough - me his mum and brother all had a reclining chair or mattress to sleep on - & yes ok it was the end for us but even those in for respite care had the same treatment - its that damn word hospice that scares us all - but I cant tell you how wonderful they are - I would choose them over hospital a millon times over....big hugs to you and I get the feeling you are feeling guilty so PLEASE stop - lots of love xxxx

Lesley - big hugs to you and all yours - hope the building work is coming on - but I bet your mum is relieved to have you there with her xxxx

Sally - glad to hear your mum is si 'slightly better' chemo can knock them so flat its untrue - but keep the hope there and dont feel bad if your mum isnt up for a visit - big hugs to you xxx

Carrie - what can I say - too many blue words to type here! its still is so surreal to me & is so hard as my eldest is in denial and my youngest keeps asking when daddys coming home - I have only been on my own today when the kids went back to school and it is still to sink in - hope you are coping - you sound like one strong lady big big big hugs to you xxxx

Jay - much love to you and the girls too - thinking about you xxx

Well for me its 3 weeks on and 10 days since the funeral and I am still in shock I think - no matter that we all know this is a terminal illness when it does happen & I have had 2 1/2 years to prepare and then the week he was ill it doesnt make it any easier at all - I didnt really appreciate everything he did around the house as well as his full time job - he was incredible - I am meant to be sitting here filling in probate forms but they want so much info I have switched off! & as for the sodding benefits agencies - more forms to fill in - they make it such hard work and such a hard time IT IS A JOKE.

Anyway no more whinging from me - you are all still fighting the fight and doing a damn good job at it - keep strong all of you and NEVER EVER GIVE UP

Much love to you all
Emma x

Please help me. My partner has been diagnosed this week with a glioblastoma multiforme (grade 4) He is only 34 and we have a 7 month old baby boy. He had a debulking operation last week and is waiting for an appointment with an oncologist to discuss radiotherapy. I feel as though life has ended and i feel so scared of what is to come. We have now booked a wedding for August this year, which was a lovely distraction for about a week but now im just worried he is not going to be well enough as I have noticed a deteration in him already but am not sure if this is down to his dose of steroids being reduced. I know this horrible thing is terminal but I just need to know how you carry on until the end arrives? my partner is such a strong person and it is breaking my heart to see him struggle with speech and reading.

:aura Lou
So sorry to hear another person diagnosed with this - Mu husband was 36 when diagnosed - he had 2 debulks -radio and chemo and trial drugs - we also got married whilst he was ill - if you read my profile it will save me boring you on here. Deterioration will happen after a debulk especially the 1st as the brain swells afterwards and it takes a while for it to reduce - my husbands reading and writting was really bad after the 1st one. Reduction of steriods also can take its toll - it is normal to look and watch for every little change - every headache they get we all think - oh no its the tumour but could just be a bog standard headache but its hard for us to tell the difference. being scared is so completley normal but sadly you will get use to it not completly but as time goes on you will find that it just becomes a way of life - and please dont think i am saying that likely but strangly somehow it does. Carrying on unitl the end arrives - kick him up the bum every single step of the way - we all have our down days but dont let him get too down in my opinion it is all about attitude too - my hubbie always said ok I've got it but I just have to get on with it - so live life and get on. Its a roller coaster and there is no getting away from that - but be strong keep posting on here - shout scream let it all out - this is an amazing place to do so - there are so many many amazing people on here who are going through exactly what you are - some are at the end of the journey and others at the start but we have all been where you are once - keep strong and please ask anything

Take care
Emma x