Glioblastoma Why Why Why <br/>

Super fast catch up post takes me half a day to read all the posts!

Dad still in hospital seen him 3 times in past two days thank goodness,things not going well:steroid induced diabetes,partial collapsed lung scaring on other lung,still on oxygen and nebuliser and think he could have TB!!!Its all really crazy this bloody illness is so hard to take,his mobility is going down fst especially as he is bed ridden in Hospital,mum and dad were due to fly off for one last hol to lanzarote on sunday,but obviously had to cancel.Hes becoming more irritable ,more forgetful and verbally aggressive,mums finding it really hard.
Anyway as I always say keep the hope alive,we will keep fighting the fight till the bitter end although that day seems to move closer and becomes more real with each passing moment!!
Sorry ladies not a good night for me.
Love and comfort to you all CARRIE & EMMA you guys are bloody amazing I dont know how you are both finding the strength to post are you superwomen ??the answer is yes ,your both fabulous love to you thinking of you and jay!!
To everyone else sorry Im so tired and emotional to do individual posts tonight try when Im in a better frame of mind
Debbie xx

hi debbie, sorry to hear about your dad, he sounds very ill, poor soul. At least you can get in to see him now, thank goodness. I hope he is comfortable tonight an will start to feel better once they get the diabetes under control.
Sallye, I've never heard of TMZ being given intravenously, I think it would probably still cause the diarrhoea anyway. PCV is different, though i've heard at least one of the components works in a similar way to TMZ - it is a combination of 3 drugs - procarbazine, lomustine and vincristine I think, and certainly they might try that if TMZ is proving too much, or maybe they'd reduce the dose of TMZ? it will really be up to the preference of her consultant. they might suggest that she has a complete break from treatment for a while to allow her system to recover and to allow her some better quality time.hope you are feeling better and were able to talk to your mum on the phone today.

diane xx

Post 15397 posted on 26 April 2009 at 18:59:15

Hi Lorraine,

Sorry to hear about your mum, it must be really distressing and your obviously having to think seriously about some major decisions here. It sounds as if your dad really is needing more help at home now...maybe it is time to get in carers? Your certainly not selfish for not giving up your job....i would very much doubt your mum and dad wouldnt want that for you...obviously you and Scott need to keep your livliehood going - is there any way you could reduce your hours a bit? I have absolutley no experience yet of carers or anything so im not the best person to help but it does sound like help is definatley needed at home (didnt realise carers had to be paid for?)...there is only so much your dad and yourself can do...you have to think about both your health as well (even though we dont really do we). It sounds so tough for you just now love - could you maybe phone Shanne tomorrow and see if she can give you any advice? I know I phone her a lot to ask lots of things. Maybe she could help get the ball rolling? lots of love
Lesley xxx

p.s. love to all my other lovely friends tonight and good luck to Gayle and Martin for tomor - fingers crossed for good scan results. xxx

Evening All.

Well mega huge hangover for me, we just got home from our caravan, we were out last night at the caravan club I had way to much wine and suffering for it today. Martin sang 4 songs in the karaoke including a duet with me, he looks so well its hard to believe he has this evil disease. Well tomorrow is results day for us I am ill with worry trying to forget about it.


Lorraine, my heart pours for you, I cant really offer you much advice on your issues not been there, like Lesley says it would be advisable to call the hospital, they would give you the right answer, it does sound like you could do with a little help though. It is bloody ridiculous that you have to pay for a care package for your mum, maybe the hospital could advise you of free care that you deserve!! Sending you and your mum dad and Scott a huge hug, hope your mum improves soon. xxx

Debbie, sorry to hear that your dad is still in hospital, at least you are able to go and visit him now, Martin too has steriod enduced diabetice, but is being controlled very well with medication. xx

Sallye, hope your mum is feeling better too, Diane gave you some excellent advice I cant add any more to that. xx

Emma, big hugs to you and the girls. xxxx

Carrie and Jay hugs to you both too. xxx

Lesley, hope all is well in the capital. xxx

Diane, hope things are a little better for you. xx

Becca, Eileen, Sue, Julie, Suzanne, Rona, Izzy and everyone else thinking of you all.

love Gayle xxx

INSOMNIA

Took 2 nitrapam 3 hours ago and still wide awake grrrrr.

love Gayle xxx

Hi everyone

Just another quickie as I’m going in to work to meet with my line manager today to discuss returning to work next Tuesday.

Gayle – hope you managed to get some sleep. I’m keeping everything crossed for you today.

Lorraine – I really wanted to talk a little about my experience with carers. In December when B was still fairly mobile we paid for one carer to come in each morning to help B have a shower and get dressed. This was arranged after B had stayed in our local hospice and the staff there introduced us to the care company (the hospice had also asked for the OT to visit and we were lent various items of equipment). By the time he came out of the hospice for the second time in March he was totally immobile. Again, through the hospice it was arranged for the care to now be paid by the local PCT as continuing care. At this point we were visited by our local Virtual Ward Manager who looks after patients in the community, but we also were in contact with the Community Nurse Specialist at the hospice. We had carers coming in four times a day, for one hour at the first visit, two lots of half and hour through the day and the three quarters of an hour in the evening. We didn’t really have much contact with the district nurses until the last few days.

I’m still unsure as to how we were originally referred to the hospice but I think it may have been either through our consultant or the Mac nurse at the Cancer Centre.

It was hard having people coming into your house so often, and you had to bear in mind things like meal times to fit around them. The equipment also took over. Having said that, it meant that B could be at home with his family, which was what he wanted. The alternative was for him to go back in the hospice and, although I’m sure they would have let me stay when he was near the end, I would have had to leave him every night which was what I hated.

I hope that is some help in explaining how things can work with carers, but if you have any questions I’ll gladly try and answer them.

Thinking of all of you and sending you hugs.

Carrie x

Gayle - Hope you got to sleep.

LORS - I too didn't know that you had to pay for carers. Is that what you get Dissability Living Allowance / Attendance Allowance for? Not that it would pay for many hours.

Christie - everytime I see that you have written something I can't believe how brave you are being, so young as well. Well, so young to someone who is now over twice your age!!

My mum didn't have diarrhoea yesterday - YEAH!!!! She has been off the chemo for 5 days. She sees the consultant tomorrow who will decide whether to restart. She didn't want to see my sister yesterady so they've had a quiet weekend not doing anything. It's very heartbeaking to be told that they don't wnat to see you. But at the same time it's good that she's feeling slightly better.

It's a cold, wet, miserable day here, so different from the beautiful weekend, but at least it means taht I don't have to walk up and down the gaden with endless watering cans watering my newly planted veggies.