Glioblastoma Why Why Why <br/>

Hello all

Eileen, I remember that feeling well, its like living in a different world to everyone else, waiting and watching is how it is, and not silly at all! Good to hear your hubby's scan was good and there's a possiblity of a holiday ahead. Was Blackburn going mad last night for Britain's got talent??
Carrie, you must have had a tough weekend. I know that feeling of just needing to be on your own, I just can't get the chance due to everyone trying to look after me, and me colluding in it!

Lorraine, hope your mum is comfortable tonight, thinking of you.
Gayle, didn't Martin get paranoid at the start - I remember you telling how he seemed to turn against you at one point - is it the same thing again? Its strange it should happen when the dex has been reduced, but perfectly possible. if it gets worse I'd speak to the GP or Mairi, there might be other medicines they can give to counter the paranoia if it is bad and causing distress - but hopefully if they can stop the dex it would be better to see if that helps first I should think.

Today I went with my youngest son's scout group on a family day out up Windy Hill at Muirshiel. need less to say it wasn't very windy. We had a lovely afternoon in the sun and cooled off in the river afterwards.

love to all
diane xx

Hello everyone,

Diane, so nice to read your post. I can well imagine that just now, you really need some time to yourself but I suppose it's only natural that your friends and family feel the need to "look after" you. You've had a very difficult time during the last few months looking after P and the children and being strong for everyone else so I guess people close to you all think they are helping by cosseting you. Perhaps once the children have finished exams, you'll be able to make some time for just you and them to share some less fraught days. Hope you are getting by.

Gayle, the paranoia thing is so horrible to deal with. Paul is completely off the Dex at the moment but he still has strange moods so in my experience, it's not just the Dex that caused the mood swings, tantrums and personality changes. I think that in Paul's case it is the combination of the BT itself plus the RT and the Dex so although it's nowhere near as bad as it was when he was on higher doses of Dex, I do still have plenty of moments when I have to pause, bite my tongue or even walk away for a few moments to calm down. Just keep remembering that it's the BT and that Martin can't help it. Keep strong!

Lorraine, thinking of you. Hope your Mum is comfortable and that you managed to get a little sleep last night. Big hugs to you and to everyone else.

Susan
xxxx

Hi everyone

I hope you’re all sitting down with a huge drink and something to eat as I think this will be a long post, I have a lot of catching up to do (the last time I posted was 15^th May!!).

Dianne J – I don’t envy you going through GCSEs now, although the fact that you have a daughter may help. Both of my boys were horrible during that time and I am so glad to be past that stage now. How are the plans for the nightclub trip coming along?

Rona – sorry to hear that your dad is struggling at the moment. There is no way B would have been able to cope with taking his pills on his own. I think at the worst time he was taking 30+ a day and I struggled to keep track of them all. Not long till you’ll be back with your dad. Hope your little boy’s not wearing you out too much now he’s crawling. I remember when my two were that age, I just seemed to be constantly moving things up higher and higher. It still didn’t stop my youngest getting hold of superglue and he managed to glue his fingers together. Wow! Things are happening quickly for you now if you hope to move back at the end of July. There must be so much for you to do before then.

Julie – hope things are as ok as they can be with you at the moment. Have you received more encouraging news now you’ve had your second opinion?

Christie – you’ve been through it over the past couple of weeks haven’t you? Glad to hear the headaches have almost gone and hope you’re managing to sleep a little more now.

Becca – so sorry to hear your sad news. Your dad sounded such a lovely man, just remember he was lucky to have you as a family too. I’ve just read about his funeral and you gave him such a lovely send off. It’s so hard isn’t it as we have such a short time to plan these things and we so want to get them right. Enjoy Italy, you certainly deserve a break.

Emma – thinking of you all. Are you still working your way through all the paperwork like I am, it seems endless. I think I am starting to come down to earth now and realising that this is it from now on. I am trying to get out and do things, but there seem to be constant reminders of B all around. My next big thing is to decide what to do with B’s ashes.

Sallye – I loved the conversation you had with your 4 year old. Sometimes adults seem to make life so complicated, don’t they? It must be so hard for you seeing your mum as she is, and going round her house while she is saying what things are hers. She’s probably trying to reassure herself that she’s putting things in order. Hard for you to see though.

Susan – hope things are too bad with you. You’re really going through it at the moment too aren’t you with your dad. Do you ever manage to get time just for you?

Joan – have you had your scan results yet? Hope things are as ok as they can be with you.

Lesley – another little one crawling. As if you hadn’t got enough to do. How’s work going? Hope your dad’s backache isn’t causing him too much discomfort. B had back pain and that was the thing that caused him the most trouble towards the end. It was impossible for me to move him to get him comfortable, and I had to try and make sure I gave him his painkillers before the carers came so that when they had to hoist him it would hurt him as little as possible. It was horrible hearing him shout when it hurt. Hope your dad’s still managing to enjoy a glass of wine.

Diane – hope things are beginning to quieten down for you on the visitor front. I know just what you mean about telling people you’re ok when really you’re not. I try and stay off the subject with most people and there are just a few who I really tell how I’m feeling. Last Friday (29^th) I had three friends round as it would have been B’s birthday on Saturday. We had a curry, a few bottles of wine and ciders, watched our wedding dvd, looked through photo albums and shed a few tears. On the Thursday night a gathering was arranged for him in London with B’s friends and people he had worked with. I went along to that too, it was lovely to see everyone, but you can’t really spend the evening in tears when you’re in a pub in London!

Gayle – where does Martin get his energy from? It wears me out at the moment just reading your posts. One year on, so much has happened to you and you’ve had to deal with so much, it’s no wonder you’re so tired. You also look after all of us too and always seem to say the right thing or are able to give helpful advice. I hope you have people looking after you too.

Grantsnana – thinking of you and hope the treatment is not causing too much discomfort.

Michael – hope your dad’s doing ok with his treatment.

Ravi – sorry to hear your sad news. Thinking of you.

Laura – pleased to hear you’ve finalised your wedding plans. I hope you are able to enjoy the build up to the day as it’s such a special time.

Eileen – good to hear from you, but sorry to hear that Rob’s not been so good.

Jay – hope the trip went well and that things are starting to settle down now for you. Have you made any decisions about what you would like to do now career wise? I’m back at work, but still just doing mornings but it’s good to take my mind off things.

Lorraine – sending you a huge hug. Try and take comfort from the fact that you are doing as much for you mum as you possibly can and also try not to think too much of how she is now. I am trying to shut the last five months out of my mind now, and I try to remember B how he was. Your mum is very lucky to have a daughter like you.

Izzy – thinking of you.

I’m still trying to keep busy. Enjoying driving the car. It had a good run over the last week. First I drove to Kent to stay with some friends and from there I drove to my mums near Peterborough. Not sure whether the air conditioning is working properly though, so it might have to go back to the garage. Tomorrow night I’m off with my young friends to see the Manic Street Preachers. I’m looking forward to it, but it’s still a reminder as B and I have seen them twice together, so expect there may be a few tears during the concert.

Sending a huge hug to all of you lovely people (and to anyone else I’ve not mentioned).

Carrie x