We Talk Brain Tumours

Dear opal...dont know anything about clic Sargent...we are in Scotland so maybe its different?

I was thinking that lots of people browse this site but like me for a long time dont post...so here are the things that helped me

• Giving all the paperwork and frustrating telephone calls to a relative I trust
• Buying a baby monitor
• Getting in cleaners
• Getting Meds delivered in blister packs.......maybe its just me but I did not know for 3 weeks until someone told me. Has anyone else mistaken Dexamethasone for a sweetener in a sleep deprived haze?
• Delegate......All these people who say anything that they can do? Get them to do it.
• Get a diary
• Say no to visitors if its too much
• Take the phone off the hook
• Go to bed as early as you can
• Get firm with Oncologists...yes they have heard it all before..and yes they know you want to know about trials..and yes you also want to know about new drugs........this is you and your partner so make sure they hear you regardless of their answer.
• Internet food shopping...thank you JMS
• Cry when you take the dog out into the garden at night and rage against the moon and all the houses round about who are just getting on with their lives.
• Post on this website..........It has really helped me. "The comfort of Strangers"  People who you would never have known or spoken to who are all thrown together by a horrible common bond. It helps that you are not alone. Have a peaceful night
• Cathi x

Hi everyone, especially those of you I haven't 'spoken' to yet, but welcome to this wonderful site. Sorry to those of you who are having a particularly tough time at the moment.

My dad saw the oncologist today for his scan results and got the good news that the treatment has REMOVED all active cancer remnants that were left after his surgery and the doc thinks he is doing very well.
We are obviously elated at this news. We know it might not be the end of the story, but it is such a relief to know the tumour has not started growing again. The very best we hoped for was that the cells would have stayed at the same level at this early stage, so it is a big 'phew' from me today.
He will continue with the temozolomide tablets (five days every month), presumably in case there are any stray cancer cells kicking about, but touch wood, all is well as far as we can tell.
Might have to have some of Chris's home brew to celebrate now 
Love to all, and thank you for your continuing support - hope you are all having a good week, or at least a not-too-bad week, and extra love to anyone having a rubbish week xxxx
Deb xx

PS Apologies to anyone who also posts on BT Buddies website, where I have just posted a similar message! xx

Great news Deb .Gives us all hope.

cathix

Wonderful news Deb

Enjoy that home brew!

jms

Deb - that's wonderful news. Lovely to hear of someone kicking cancer's butt. Long may it continue.

Cathy and Opal - my daughter is 13. I thought she'd been handling the news of her grandfather's cancer (and her mother's frequent meltdowns) remarkably well and commented on her resilience. However, last week she broke down and told me she has started certain rituals (repetitive behaviour) in the hope that if she does it three times every hour it will prevent her Pappy from dying. I was devastated - how could I not have seen that? And why did she only tell me because her 10 year old sister had picked up on what she was doing? Clic Sargent provide support for siblings of children affected by cancer but I'm sure they help bereaved children affected by the death of a parent too. If you have children's hospices nearby, contact them for details of where children can go for suport.

Love to all on this site.

Naomi.x

hi Cath,

things sound so tough for you at the moment, i can empathize with you, i find it so hard watching my son go through this hell. i sometimes get weepy but gain strength in reading the posts on here from some very brave people. Couselling does help Cath more than you think, i think i would have gone insane without it when i was diagnosed. I have sought support again from out local alternative therapy odssesy centre, counselling along with reiki has kept me sane and is keeping me strong for my son. When he feels low i feel through couselling i have the strength  to pick him up give him hope to carry on and get through all this treatment. I sure you would benefit wich in turn wil benefit your daughters and your husband.

Sue xx

Hi debs

so happy you have some good news, i thank you for sharing. Enjoy your homebrew.

Suexx

Opel, do you have a children's hospice near by?  Having recently been involved with them I know that you dont have to have 'used' their services to have care from them. I'm sure this extends to counselling services. 

My son (15) sat GCSE's last year and had letters from our macmillan team to examination boards etc and this year has letters from our childrens hospice explaining our circumstances. 

I have been told that general counselling referred by GP's go along a text book route however childrens hospice teams obviously have the vocabulary to address the situation you are in. 

Worth a try, hope you can get some reassurance for her.

Best wishes to all.x

Hi All

Opal, not sure if this is a good suggestion, but maybe your daughter may get help from this site too?? or a similar one,or is this your personal space?? as we obviously all find this very helpfull and the advice supportive, sorry if I offend you by suggesting this xx

Teen

Sorry a bit more!!

Debs glad to hear good news, xx

Cathi we call the Dexamethasone - sexy dexy as mum says they have made her wrinkles go with her face swelling!!! made us and her laugh, thanks for the tips xx