Glioblastoma Why Why Why <br/>

Hello ladies,

Emma, it's so brave and thoughtful of you to keep posting. I can understand why some people feel they need to take a break from the site once they are on the other side but it's so good for those of us who are still caring for our loved ones to have wise words, comfort, support and friendship from people such as you and I am sure that your many friends in this and the WTBT groups will do their best to reciprocate.

Gayle, thanks for asking about the balloon trip. The next date we have for it is Friday 1st May. Let's hope it will be sixth time lucky!

Paul's MRI scan went ok yesterday, they managed to get the dye stuff injected without any problems this time, probably because the last thing I said to him before he went in for it was to remind him to ask them to put the needle in his right arm, not his left. In the past they always use his left arm for blood samples, needles etc presumably because he is right handed. His left arm is the bad one and he can't support it unaided which is why I think he had so many problems the time he refused to let them finish the scan! Last time he had a scan I told him to ask for the needle in his right arm but he forgot. His memory is terrible these days. I would go in with him while they get him ready for the scan except that he won't let me. Why? Because he has some false teeth as a result of losing numerous teeth in his rugby playing days and even though we have been together for 6 years, he will never allow me to see him without his denture! Bless him! I have tried to tell him that when I promised to love him in sickness and in health etc, I meant it but it is one of the things he is very fastidious about so of course I must respect it. Now we have to wait until 7th May for the results but I am trying to put that out of my mind for now and think nice thoughts! We have a holiday at Loch Lomond to plan! If any of you Scottish ladies know of any good B&B places that welcome well behaved dogs, please let me know.

Becca, I think diazepam is used to help with sleep problems and pain relief. I have arthritis in the spine and also get lots of pain and stiffness in my right shoulder, usually when I get tense or stressed. My GP prescribed me diazepam a couple of years ago when my shoulder was really painful and when I queried it, thinking diazepam was a sleeping tablet, he explained that its main effect is as a muscle relaxant so it can help with sleep problems (depending on the cause) if they are taken last thing at night. I had to take them in the morning and they did help with the "frozen shoulder."

Diane, sorry to hear your husband is poorly. Thinking of you and your family.

Love to everyone else too.

xxxxxxxx

Hi everyone

So much has happened since I last posted so apologies if I don’t mention everyone, or have missed out on some of your postings.

As you can imagine I’ve had busy days. Some of it has been things I’ve had to do, and others things I’ve done to keep myself busy so I’m not thinking too much. On Monday I went to B’s office (he worked up in London). I took a friend as I thought it would be too hard on my own. He worked with some lovely people, about half of his office came to his funeral. His desk had been cleared out and I had to decide what I wanted to bring home, and they are making a book of their memories of B for me. They were hoping to give it to me on Monday, but so many people wanted to contribute that they will post it on. I think I’ll choose a quiet moment to read that. On Tuesday I took B’s mum to Tesco. She doesn’t drive now, and as I couldn’t face going on my own it helped me too. Yesterday I went shopping with a friend and made up for the fact that I haven’t shopped properly anywhere since August last year. Then in the evening a friend from work and I went to the cinema and for a drink afterwards. Today I’ve got more of a lazy day to make phone calls (I hate having to tell people B has died – that’s the ting I find most difficult at the moment).

I’ve decided to try and go back to work on 5^th May. I’m going in on Monday to chat with my line manager, but she has asked for a letter from my GP stating that I am fit to return to work. Does anyone know if this is what usually happens? It’s not as though I broke my leg or something, I really don’t know how I’ll be until I get there. She’s also talking about a phased return, perhaps starting with mornings and then building up my hours over a few weeks. I don’t think that will be too bad as I work in a school, it will soon be the May half term holiday (B’s birthday would have been on 30^th May) and then it will only be 6 or 7 weeks until the summer break.

Well, I’ve managed to talk a lot about myself so sorry about that. Some of you seem to be going through really rough times at the moment. Even though I haven’t posted I have been keeping up with you all (and then forgetting most of it – not sure if that’s my age or what’s happened!)

Gayle – I can’t believe what your work have said to you. Can that they can do that with such short notice? Have you been taking time off sick until now? Do these people not understand what dumping these things on you can do when you have so much to cope with already?!! Sending you a huge hug. Hope you can get things sorted out so you are happy with the situation.

Emma – thinking of you all lots. I remember reading in one of your posts a while ago about probate. Doesn’t it seem stupid that you still have to go through that even when you have a will. I’m going back to the probate court with B’s other executor on Tuesday to have an interview. I hope we get the paperwork then as there are things that can’t be sorted out until be do and I hate it when things drag on. Like you I haven’t reacted in the way I thought I might. I’m just trying to keep busy and arranging things to look forward to. Big hugs to all of you too.

Diane – I’m not sure whether I’m going to say the right things now so I am so sorry if I upset you, but what you describe really strikes a cord with me when I think about how thing have gone for me recently. Over the last couple of months I have wanted to know what may happen with B as I wanted to be prepared. You may have heard of the Brain Hospice website. I found that so useful (you have to be in the right frame of mind to read it) but it helped me to have an idea of how things might progress. I chose my moments when I looked at the site and I then wasn’t caught out as much when I started to notice the changes in B. Not everything happened in exactly the same order as on the website thought, as I suppose everyone is different and they were only general guidelines. You’re in my thoughts and as you said just take things a day at a time.

Christie – hope you enjoyed Alton Towers. My boys were really jealous when they heard about Michael McIntyre.

To all who have loved ones in hospital, I’m sending you hugs. It’s so hard trying to be there for everyone else, make sure you look after yourselves too.

I think you’ve all had enough of my ramblings now. I think we’re all so special doing what we’re doing day to day. If some of the people who are insensitive or who criticise had to do half of what we do they would be wrecks. You are all truly special people and I really think it shows what true love means.

Carrie x

Hi Carrie,

Lovely to hear from you, going to B's office must have been a really difficult one for you, a memory book from his work colleagues what a lovely present for you, just shows what they all thought of him. Hope you are coping ok nice to see you are getting out with your friends. xxx

Just been on the phone to hr, they see no reason why I cant stay on long term sick, only got 2 more half salaries then no pay anyway, they have advised me to contact OT which I have and waiting on their response. HR have said 3 options available, sabtical which I must return in 3 months, career break of up to 2 years, in which I would come back as a new employee, not guarenteed the same job or hours and will loose the privlages that I have accrued over the years, so I am going to to fight to stay on long term sick it wont cost them any money in 2 months time.

Anyway I am not going to let them pressurise me, and my family comes before scottish gas and they need me just now.

love to all.

Gayle.xxx

Gayle - You stand your ground my pal your so right your family are alot more important than work and especially in these circumstances we are all under right now, as I said to you my work have been fantastic with me and I am different from you as I have Dad as Mum's full time carer but in saying that I am off today as I just work a 9-day fortnight and its great being able to help them even just holding Mum for Dad to wash her etc its a big help to him and makes me feel good but then again I do need my work as it gives me some sort of normality and I have Scott to think of too as I said to one of Mum's friends today I am their daughter but I am Scott's wife but so so lucky that they have a gem of a son-in-law and he does not mind at all the amount of time I spend with them and like tonight he is going to be with them so I can go and see my pal and her little girl Aimee who is just 2 and a wee darling and brings me so much joy these days, I know the now I could not have one of my own as Mum needs me so much, hope Martin is ok today and Martine too, just stay firm and strong and I am here anytime you need a chat thats a promise from the bottom of my heart :) take care won't be on tonite as going to Leah's but will be back on over the weekend, love to the 3 of you.

Lorraine x