Glioblastoma Why Why Why <br/>

Hi everyone

I hope you are all sitting comfortably ‘cause I think it’s going to be another long one. With B in the hospice and only one son at home I can stay on the PC as long as I want and so can ramble on and on and on…

Izzy – c-diff, poor both of you. At the moment you seem to be going from one thing to another, not having a chance to catch breath in between. I’ve not had any experience of c-diff, but I wondered as there’s a chance your hubby caught it while in hospital could you argue the case for him staying at home with district nurses and other carers attending to him? I hope you don’t mind me asking (and I think this may apply to all of you – although perhaps not in Scotland) but do you get Disability Living Allowance? We use part of ours to pay for carers to come in on weekdays to get B showered and dressed, but I think they can do other personal care and that may take a little pressure off you. Fingers crossed for an improvement. X

Gayle – sorry to hear you are feeling so worn out. I think most of us are tired by anyone’s standards most of the time so when we get to the exhausted stage most people would not be able to cope. It’s a shame you had to cancel the counselling when things like that help. Had a really bad evening when I got back from the hospice yesterday. I made the mistake of looking at our wedding DVD (we only got married in July 2005 and it was a brilliant day) and it really made me think of the life we have lost and how things will never be the same again. Sorry I’m getting morbid.

The hospice look at B as a whole. They check his medicines and are looking at reducing his dex and can keep an eye on him while they do this. They also have welfare assistants who, when he was in there before, sorted all sorts of things out for us like disabled badge for the car, disability living allowance and other things that I would never have known about. They also put us in touch with the OT and district nurse and gave us all sorts of information like companies that install stair lifts and places to buy/hire rise and recline chairs. They also have a community nurse who keeps in touch when you are back home and they are just appoint of contact if you have any worries. Although it is nice to have a rest and not be on call all f the time I miss him so much and hate saying goodbye when I leave him.

Lesley – do you now regret saying don’t stop the long posts? It’s a shame your mum has the view she does about hospices, but to be honest I didn’t really know what they were about until B went in the first time (December 08). He views it as a little holiday. He doesn’t have to think of anything, everything is done for him, he is comfortable and they do very nice food. they also have volunteers who give hand and feet massages. Today he met the ‘pat dogs’, dogs that are brought in for people to coo over and make a fuss of.

Karen – good job I didn’t kick the car tyre when the car wouldn’t start because today I noticed it looked a bit flat, so I think it might be punctured! I pumped it up a little and I’ll see what it’s like in the morning but I think it might be a trip to buy a new tyre. I hope your mum is improving. I found it so hard when my dad was in hospital years ago because I felt I had to become the parent when I still wanted to be the child, and being an only child it was down to me to look after mum too.

Joan – hope you are all ok and that you are not getting too worn out.

Emma – 6.00 am, yuck! I hate getting up early, but as you say “as long as it’s working…” Hope you enjoyed your bath and are feeling nice and cosy in your PJs.

Hello to everyone else – hope all is well with you.

Well, I picked up the car to try for the motobility scheme and took it to the hospice to see how it was for B to get in and out and then we went for a drive. B suggested I try all types of driving, so by the time we drove home to collect a few bits and pieces, took it for a spin up the motorway and then did a bit of town driving I think the garage probably thought I had pinched it. It was nice to drive and comfortable and his wheelchair fitted in easily but I’m not too sure how easy it will be for B to get in and out of if he gets any worse. I will try and arrange some more test drives to compare cars, but I enjoyed driving this one.

Well, as my post has now gone over one A4 sheet of paper I think I had better stop and give someone else a chance.

Carrie x

Hi everyone

Izzy so sorry to hear about your husband, like Carrie says he probably did contract it in hospital, you should ask about a homecare team and try to keep your husband at home with you and you both be much happier, hope things pick up for you both soon.

Emma, I feel exactly the same as you absolutely knackered, I have no energy to do anything, went to my hynotherapist today she told me that I am mentally exhausted, I can believe that because I never stop thinking and wondering whats next, You must be completley exhaused getting up at 6 everyday, hope Mathew is doing well and his blood pressure somes down.

Carrie, Its good that B enjoys being in the hospice and he gets his massages, and gets well look after well, it would scare Martin too much, its not for us but glad it helps you. What kind of car are you going to get through the mobility scheme, do you get to pick any kind at all?? Dont stop posting I really enjoy reading your posts.

Lesley, hope all went well with Ambers snowman, do you still have the snow?

Karen, hope all is better with your mum thinking of you both.

Joan, hope you and David are both well, thinking of you two also.

Oh well folks off to bed cant stay awake any longer goodnight all.

love Gayle xx

Hi everyone

hope all of you are okay, and your loved ones are as well as possible, Lesley hope you are having a nice night at the Hilton, dont have too many G&T's you'll regret it tomorrow hangover lol, Izzy hope your husband is improving, Emma hope your getting plenty of rest after your 6am rises. Joan, Carrie,Karen and everyone else hope your all well, I am looking forward to a lovely romantic day with Martin tomorrow.

love Gayle xx

Hi everyone

Hope you are all ok. I promise my post won’t be too long today, but then once I start you never know…

Carole – thanks for your post. I think I perhaps didn’t explain things very well. We live in Sussex, so very close to you. I think we use the DLA to pay carers (not nurses) to get B showered and dressed in the morning. Does that make sense now, or have I got things wrong? We are both lucky, because although neither of us is working we are both still being paid at the moment and I very much appreciate what a difference that makes to us, not having any money worries on top of anything else. C-diff is a bit like MRSA, but among its symptoms are diarrhoea and fever.

Lesley – Hilton? Enjoy…

Emma – hope you’re not too tired. I think sometimes when we’re in a situation like this we just go into autopilot. How long will you have to be getting up at 6.00 am for?

Gayle – I hope you and Martin enjoy your Valentine’s night dinner. I’ve got to drive my oldest son over to a girl’s house at 9.00 tomorrow morning so he can leave some red roses and a card for her. Aaahhhhh!

B very fed up today because he is losing control of his bladder so he has had a catheter fitted. Although he can see the sense of it, it’s not something he thought he would have at 45. We’re just hoping it’s the effects of the RT, chemo or medication causing it and not the BT. We received an appointment letter today for his follow up scan and consultation after the RT. 3^rd March, earlier than we thought. We’re not expecting to find out much, I just hope that what they do tell us is positive. I’m not sure how B would take it is it wasn’t.

To everyone else, thinking of you and hope you are all as well as you can be.

Carrie x

There you go, I said it would be shorter.