Glioblastoma Why Why Why <br/>

Hi all

Joan, I echo your sentiments re this painful, pointless condition, it is cruel beyond words what it does to people and families. The only good that can come of it is the strength that people find that they never knew they had, the knowledge of the kindness of friends and neighbours and the closeness it can bring too. I still think sometimes my hubby is going to wake up and demand his fish and chips again, its hard to accept those times are over. But even in acceptance there can be a strength and a knowledge that all has been done that is possible, and in caring right to the end, whether at home or in hospice.

Sallye, we too had some 4 day weeks in the treatment, the sessions were made up at the end so the total should be 30 days. The break of treatment is necessary as RT is so powerful, your mum will need a break to recover, she will probably be quite tired in that period as that is when the effects can kick in. after the 30 days she won’t get more RT, just the chemo, as the dose of RT is the maximum anyone can have in a lifetime, any more and the side effects would be intolerable, or so I have read. As Gayle said , over the 6 months of 5days TMZ, the dose of tmz will be gradually increased each time to the maximum she can tolerate.

Debbie, hope you enjoyed your break at Haven, it certainly has been a sad few days on here. Good to get a break - got to look after yourself too.

Hi Eileen, good to hear Rob is ok and showing some interest in things. Would you like to bring him to clean out our fishtank? My mum is threatening to remove the fish to her pond if we don’t clean it, but I have other things to think of! How old are your boys? Mine are 12 and 17 and I also have a 15year old daughter – they have all been great, mostly! Where about in Scotland are you - I can’t recall if you said before. We are in Renfrewshire.

Hi Becca, you put us to shame with your 10ks, ( and you too Lorraine)-I could swim 100 lengths no problem but you’ll never catch me running I’m afraid! Good to hear you making plans for your dad’s birthday.

Suzanne, sorry I don’t have experience of PCV but I’m sure others here ( or maybe on the WTBT thread ) have, I hope someone is able to reply.

Hi Lorraine, we are doing ok thanks. Yes it can be hard going, but I do get some respite, went and got the grey removed at the hairdressers today! I’m sure you are a great help to your dad, immensely so – what I would give to have another adult around to help out in the way that you do – even for a few hours – it would be so welcome! So keep up the good work, your dad will be greatly helped by having you around.

Lesley, how’s the kitchen coming on?

Hi Allison, your book sounds lovely. What a lovely gift. Just before my hubby took a turn for the worse last week we had a family friend round who just happens to be a photographer – he took some lovely family pictures and now I have them on a disc, I can get as many copies as I want, and have sent some to hubby’s family who live abroad and can’t come over. We will treasure those pictures.

Gayle, I hope Martin’s chest clears soon.

Well take care everyone and goodnight

Love, diane xx

Hi everyone

I’m going to be a bit selfish with this post as I can’t believe how many there have been over the last few days and I’ve lost track of what’s going on with some of you.

Emma – hope you’re doing as well as you can. I’m amazed at how I’m feeling at the moment. I can actually read the cards that people have sent and, although there are tears, I’m smiling at the end. I just wish B was here to see and hear what people are saying about him. He was a really lovely person and so many people were very fond of him. Their love is helping me so much. I loved your image of Matthew and B meeting up for some beers. At Christmas B ordered a half barrel of his favourite beer to be delivered here. Unfortunately, his taste buds were shot and he just didn’t enjoy it as much as he thought he might. Our visitors over Christmas did though!

I’ve been doing all the horrible practical things. Registrars, with youngest son yesterday. Hard, because that’s where we go married. Followed by funeral directors with mother in law. As I had to arrange my Grandma’s funeral last May I think I found that easier. We then went to a local florist to chose our flowers. Today I’m going with a friend to court to sort out probate. I’m also waiting for all the equipment to be collected. I’m not feeling as bad as I thought I would about that as I am trying to forget B how he was with the tumour. Because it affected his mobility, and in the latter stages his mind, he was so different from how he was before the tumour. In a lot of ways he was a totally different person at the end. I’m just so pleased that I was there for him and did as much as I could. I sat down on my own and watched our wedding DVD on Monday, and I smiled a lot as well as shed a few tears.

I am thinking of all of you, and I’ve also noticed a few different names on the thread too, it never stops does it. When things quieten down I will read all the posts properly.

Until then, I’m sending you all the biggest hug possible. You are all such special people and I really appreciate you being here.

Carrie x

Morning everyone.

Carrie, your strength is amazing, B will be so proud of you, looking down at you, its nice to hear that you can manage a little smile at this sad sad time for you, memories are so precious, sending lots of love and a big hug. xxx

Emma, hope that you are coping hun, was chatting to Becky yesterday, she was telling me all about Mathews funeral arrangements you will do him so proud hun, I read your message from Ella last night on fb, it made me cry, sending you lots of love and a big hug. xxx

Jay, hope you are getting by sending you a big hug. xxx

Rona, glad you got home safely, nice to hear that you will be coming home every 3 months, bet you cant wait to come home at the end of the year. xxx

Sallye, not sure about beds, Diane would be able to help you on that one if she logs on later, we did get some bath, and toilet equipt from social services and a wheelchair, zimmer from OT, hope this helps a little. xxx

Diane, your photographs sound absolutely lovely, you should post some on fb, hope things are little better for all of you today. xxx

Becca, you certainly put me to shame, like Diane I could swim 100 lengths, but could not run lol, hope your dad is keeping better. xxx

Lorraine, you too I am so bloody unfit sine being off work, I did join the gym but Martin doesnt like me to go and leave him, so I dont go anymore, hope you have a lovely few days of work you certainly deserve it, hope your mum is a little better, will text you later. xxx

Lesley, Yip Martine is off school for nearly 3 weeks, is Amber off nursery? Does she go to school after the summer holidays? When do you go back to work now, bet your not looking forward to it, hope your dad is getting better and will be home soon. xxx

Joan, hope you and David are doing ok. xxx

Suzanne, dont have any experience with pcv either, but have heard that it is very good if your body
can tolerate it. xxx

Julie, hope you and Stephen are well, speak to you later. xxx

Debbie, hope all is well in Sheffield, when do you come back up to glasgow? xxx

Izzy, Christie, Reland, Sue, CH and everyone else thinking of you all.

Martin still got this bloody chest infection, think I might get the doc back into today, also Martine is feeling poorly grrrrr.

love

Gayle xxx

Gayle - our posts must have crossed! Amber is still at nursery two days a week as i kept her in private nursery (costs a bleedin fortune!) - my mother in law takes her one day as well. I start back in 4 weeks....the countdown is on - i have no idea how im going to be able to get up at 6.30 again - me and Joe like our long lies!!

I would get the doc in too if Martin's still not better - poor wee martine too - hope it doesnt last long, she'll be wanting to enjoy her holidays.

Diane - kitchen still a bombsite -too scared to look properly!

catch up with you all later. xxx