Glioblastoma Why Why Why <br/>

Morning everyone.

Carrie, glad you had a nice time at the bbq, sad times for you, hope your sleeping pill worked last night and you get back to work ok today. big hugs. xxxx

Emma. ((((((big hugs)))) .xxxx

Debbie sorry you are having such a rough time just now hopefully things will get better for your dad soon. xxx

Lesley, hope you enjoy your first day back at work today, it wont be long till your back in the swing of things. xxx

Diane, Becca and Lorraine hugs to you all through your difficult times at the moment. xxx

Grantsnana, sorry that you find yourself here another family having to go through this journey its so sad. Your husband sounds as if he is doing very well, this journey is like a rollercoaster so many ups and downs, stay with us here you will get so much needed support. xxx

to all my other lovely friends thinking of you one and all off now to get Martine ready for school, Martin been up since 4.30 and just went back to sleep, probably get back up soon tho.

love Gayle. xxx

Morning everyone.

Just a little post to say hello, great that I have more time on my hands with not being at work to do all these little things! My Aunties come on a Tuesday to Mum and Dad's so Scott and I are going to go out for the day maybe to Perth or Dundee and have a another pub lunch and do bit of shopping what better than that for a girl's good day eh, I have to be back for 5pm as I attend the Brain Tumour Support Action Group at our local Maggies Centre we are actually meeting the group from Edinburgh tonight - (Lesley will let you know all about it and what their group is like incase you ever want to attend in the future, good luck for today pal starting back at work x). I actually really enjoy it and get a some sort of comfort of not feeling all alone in this horrible illness just the same feeling that I get by being part of you guys, I think if you have support it helps alot.

Gayle - Hope Martine got off to school ok and your hubby managed to get a little sleep, chat to you soon my friend, bet your looking so forward to meeting Emma this weekend.

Carrie - Thinking of you today on your return to work, its so lovely that you keep in touch, shows what a sort of person you are, same goes to you Emma your hurting so much but still being around for us, have a nice time with Gayle this weekend.

Grantsnana - So sorry to read of your husband, its so hard in the initial days but I think you do get used to just learning to live with this illness, and somedays for me I can laugh and be normal then other days I breakdown, this site is amazing and I am sure it will help you.

Well folks my lovely hubby has just done all the brekkie dishes and cleaned the kitchen and now waiting for me to get ready to go out with him, where I would be if I did not have him - who knows, thats why I can't wait to renew my vows all over again to say thanks for being there for me so much, I always feel it so much for him that by marrying me this his how his life has turned out but I suppose its in sickness and in health for us too just as much as Mum and Dad, and maybe if I had brothers and sisters I would not feel the strain so much its also hard because I live in the same street as my parents, like just now I am in my house, Dad awaiting nurses to see to Mum and as I said to Scott you have to be me to know how that feels your Mum lying in bed and you are waiting on someone else to clean her etc I feel it should be me but because I work full tme I have to learn to take a back step, I hope you all understand where I am coming from that if I was to do it this week (which I would but probably nurses be better than me) next week when I return to work poor Pop is left on his own so thats why we needed to get the nurses in before a care plan is put in place as Dad just can't keep doing it, and I have thought long and hard about giving up my work, spoke to my boss before I finished on Fri past and she says Lorraine would your Mum want that and no if she was right she wouldn't plus I have a life with Scott - talk about feeling so guilty grrrrrrrrrr anyway folks I just need to try and think that in the last 2 years I have been there for her as much as I could and I will continiue thats a promise .............

Love to all of you Lorraine xx

Hi Lorraine

I hope you and Scott are enjoying your time off and have had fun today what ever you done, you both deserve it very much, bet you cant wait to renew your vows. That is fantastic that you have a bt support group up there we have nothing like that down here, I go to Ayrshire cancer support they are fantastic and have been a godsend but I would love a bt support group, who runs it?

love Gayle xxx

Hi all

Debbie, thank you for your kind words, but I don’t feel like I am any of the things you say! Sometimes I get scared, greetin’ faced ( just ask Lorraine), worry for the kids, irritable and snappy, tired despite all the help I have, guilty for feeling that way, the usual kind of stuff!

Hi Carrie, hope today at work went ok, can’t have been easy, hope everyone was gentle on you. Are you going for phased return or is it straight back into the thick of it?

Hello grantsnana, sorry to hear of your husband. Its good that he has tolerated treatment so far so well and is having a good quality of life just now. Everyone with this illness is different so it’s hard to advise you what to expect. Maybe its best to try not to worry too much about what may or may not be around the corner? Make the most of the quality time you have just now. Many people can do well for months and in some cases years so its good to hold onto the hope that your hubby could be one of those. Easier said than done I know. Stick with us here, there are many people also going through this who can share their experience with you, and someone will no doubt have an answer for any specific questions you have.

Hi Lorraine, now this is the second time I’ve told you - no guilt allowed! Please stop feeling guilty, its obvious to anyone reading your posts you are an absolutely devoted daughter doing her very best for her mum in very difficult circumstances, you couldn’t do more, you are there all your free time, and you need time for your marriage too. Hope you had a good day out today.

Love to all

Dianexx

Good to hear from you Diane. Thanks for the words of encouragement. I do understand that worrying about what hasn't happened is such a waste. I was just sitting at this machine looking out at a beautiful red cardinal sitting on a bush in my yard. We live in North Carolina in the US and today has been a rainy day, but the sun just popped out and it is so beautiful. Everything is green and the flowers are blooming. I just saw my first hummingbird eating from a feeder that I put out with my 4 year grandson a few day ago. Children are such eternal optimists. He said..."just sit quietly Nanny and the birds will come and eat." I am so thankful to have him close by to enjoy.

The nights seem to be the most difficult time. Sleep is often hard to come by and I find my mind racing and thinking how I will go on without my best friend of 40 years. I have to just stop and think of how great and special those 40 years have been and pray for 40 more. I do believe that God is still in the miracle business and why couldn't we get one. It does happen and I'm going to focus more on the time now than the time to come. Thanks again, Diane, you said just what I needed to hear.

One more thing, has anyone had experience with the gliadel wafers? Our surgeon has said that after our next chemo round, that may be the treatment. I've read some about this but I think the side effects are a little scary.

Love to all