Glioblastoma Why Why Why <br/>

Hi Reland

Glad you’ve decided to stick with us but sorry to hear you’re had such a c**p weekend. Sometimes everything seems to happen at once doesn’t it and you don’t know which way to turn. As you said, sadly BTs affect everyone in the family.

This site is amazing. I don’t know what I would have done without it over the last couple of months.

Luckily I don’t know anything about Kepra as the one thing that B hasn’t had so far is seizures. I’m keeping my fingers crossed that we don’t, as I think he has enough to cope with already.

Thank you for your smpathy re the district nurse. As she’s part of the community nursing team I don’t know whether there would be the option to change. The other two nurses on the team that I have met seem pleasant enough, but don’t seem to have any authority.

Sending you hugs.

Carrie x

hi all

green tree – hair growth seems to start quite soon for many. As for tiredness, it can often be worse after Rt finishes especially in the first 2 – 3 months as the effects build up, and can go on for up to 6 months or more. Sometimes the RT causes swelling in the brain which can mimic the effects of the tumour, many of us here can report a worsening of symptoms after Rt, followed by improvement. But many also have few ill effects at all, so try no to worry too much – we all have a tendency to “symptom watch” that is probably not good for us, but impossible to resist I’m afraid!

Jay, thinking of you for tomorrow.

Joan, hope you are ok – like the others I was thinking we’ve not heard from you.

Hi Reland, what an awful weekend you had! But you all survived it and hopefully things getting back to “normal”. Re the Keppra, can’t say we’ve had the same problem but its hard to tell, hubby was tired before he went on it, remains permanently tired, so no obvious change! That’s the trouble with BT, you never know if the symptoms are due to the BT itself or the treatments given – steroids, anticonvulsants, painkillers, - our house is like a chemist’s shop. If Rob is still having seizures maybe they’ll change it anyway as its not working, or maybe they’ll want to increase the dose?

Lesley, so sorry to hear things have been so tough, and that you have difficult decisions to face. I hope your dad is comfortable.

Gayle, hello to you in sunny spain! Don’t be spending all your pesetas ( or is it euros) on internet cafes!

Carrie, aaaarrrrrgggghhhh health and safety are at it again! I had to rearrange my bedroom to give more space to work in, but it is easier now I’ll admit. After a couple of weeks of carers coming on their own and me assisting them with the transfers and shower the supervisor phoned and said they wanted to come in twos, as they found it easier working together as they did it all the time, and were also concerned for their own and my safety! You can imagine how that made me feel – not good enough to care for my own husband! But when I calmed down I did realise it was all due to “health and safety” and didn’t blame them for it – after all they work together all week – and once I saw them in action together I could see it was better all round, so now I just let them get on with it and tell myself that they care for him for 20 minutes 3 times a week and I do all the rest! But anyway, what are you supposed to do to make more space – knock down a few walls?! Move the couch into the garage?!

Goodnight all

Diane xx

Hope everyone is ok today. Jay I'm thinking of you today.

Carrie - hope you and B spending some nice time together
Emma - thinking of you tomorrow and hope you get a good result. Glad Mathew seems a bit better.
Lesley - so sorry your Dad's not doing so well. Hugs to you.
Becca - hope your dad is starting to improve. Sounds like a nasty infection so hope the antibiotics & fluids make a big difference.
Gayle - glad you're having a nice time and that Martin is enjoying it. I can't believe you're on here from Spain!!!

Thanks for the answers about hair & tiredness. Dad is doing well other than sleeping a lot. His disability living allowance came through today which is great. I went with him to organsie his will yesterday. A bit horrible to hear him talking about death with the solicitor but I think he's glad it's done as it's one less thing for him to worry about. My brother and I are taking him for a little break in a cottage on the coast tomorrow and will be there until Monday so will be out of touch until then. I'm looking forward to spending some relaxing time together as our little family. I've been so impressed with how my Dad is doing - he's even still doing a cryptic crossword each day!!

Reland, Diane and everyone else hugs to you too. Hope everyone has a good rest of the week and weekend
xxx

hi green tree, enjoy your break, sounds lovely - nice and relaxing

Carrie, how'd you get on with the virtual ward manager ( what sort of a job is that anyway?)? I spoke too soon yesterday. I've been aware that Hubby's mobility is deteriorating, he's having problems changing position in bed now, so this morning I emailed our OT to ask if she could advise, as I'm finding it harder to transer him to the commode on my own - maybe there will be some more equipment that can help - a stand aid has been mentioned. she quickly replied and is coming out tomorrow. great. then half an hour before the carers arrived I got a phone call from their supervisor to say they'd only be doing a bed bath, no shower, due to increasing concerns about his balance, and they wanted to get a further OT assessment. good to know I am ahead of the game. so I was able to reply to the rather snooty lady on the phone that I had already organised it for tomorrow, thanks very much! but what upsets me is the lack of compassion in the way we are told these things - very matter of fact, also its not really up for discussion - but to us its a major thing, another step down, but they don't seem to appreciate how upsetting it is to be told and confronted with these things even when we aleady know it ourselves. She might at least have shown me a little sympathy - I don't want to argue as they will just cite health and safety again and the last thing I want is for anyone to be put at risk trying to help us. so here's hoping the OT can help as I can't bear to think of him not getting a shower! Rant over..

Gayle if you are reading - don't - get yourself in the pool instead!!! hope you have better weather than we are having today, cloudy, windy typical west of scotland March day!

love
diane xx

Hi Diane

Just typed a reply to your post on the site and lost it. I’m now back on Word!

B used a stand up hoist in the hospice, his legs are too weak to support him now, but it worked well for him then.

Doesn’t it annoy you when the people we have to deal with are so officious. I think any one who does a job like that should have had experience of what we have to deal with. Perhaps then they might have a more sympathetic attitude.

From finding out unofficially that we will be having new carers coming in from Friday morning, I have now discovered that nurses from the intermediate care team will be coming in as a short term measure three, not four, times a day and they are still looking for a new company to provide the care. If one can’t be found, B will have to go back to the hospice. I have no problems with the hospice at all, we just want B home and that is where he wants to be. All of this is being decided by the PCT and no one from there has been in touch with me about this.

I hope the OT can come up with some useful suggestions for you. I don’t think that it’s too much to ask that your hubby can have a shower.

Let me know how you get on.

Carrie x

Hi people,

Just another quickie from me (i know Carrie, im like you, I always say that!)

Jay - hope today went as well as can be - Im sure you wouldve done Jon so proud.

Gayle - Hope your having fun in the costa blanca....we miss you here BUT dont want you not to get a tan as you've spent half the week on the internet! get supping those cheeky vimto's... Hope your all enjoying it, the promenade is lovely at night to walk along..sampling the local bars en route of course!

Rona - enjoy your break...how fab getting away from it all...your dad will be delighted having you and your brother there - sounds nice, nothing like a wee holiday to recuperate!

Emma - I've posted on the other thread too but everything crossed for you all tomorrow. Will be thinking of you.

Carrie - Hope your ok...exhausted tonight? Hope you;ve not been dancing to dodgy old crooners...no not stevie Wonder....but barry Manilow!!

Joan and Izzy - like Carrie, worried about you two girls.

Well to cut a long story short, went up today and my dad was still slightly dysphasic but right arm was now working. Tonight, he knew everyone who was there, was writing the alphabet and says he knows exactly why he's there.....so slight improvement certainly from 2 days ago. We didnt manage to speak to his consultant (apparantly tomorrow) but a nurse says the plan may well still be hospice? Does anyone know if this is normal to go to a hospice? Carrie, I know B was in there.....I used to think that went people went in there they didnt really come back out again but I suppose thats not how it works now? What would be the point of a hospice if he was slighlty improving? Do they do rehab with phsyio's or anything? Sorry, but I dont know anything about them and if anyone could enlighten me id be grateful??

lots love to all xxxxx