Hi Minx I guess its an anivrsary of when things got bad how did your trip go. Its daunting to come back to the world of hospitals and doctors. Hugs Geoff ... View more

Hi Lillypilli Nightmares are crap, when you see your mum dying, wondering if her pain was bearable....dying is so hard on those who stay, for those who witness, who see ........you They leave with no personal connections to find, leave with rolercoastering grief; rawness it mellows, other forms move in you write with compassion and insight Hugs Geoff ... View more

Nat Special songs and music have a way of reconnecting me as well(Lorraine requested Beethoven's 9th at her funeral I am now very indulgent in it) Well I am proud that I have journeyed this gruesome way with Lorraine and also in some ways not so Ps. You swore! I am impressed and very proud for you:)-. I found that talking with people at work and ended up teary to and opening up cancerconnections site and writing Hugs Geoff ... View more

Hi Patience You have a lot of compassion; it shows so much in your story, your reflections and grief, your anniversary (4 weeks). Hugs Geoff ... View more

Hi sonyabarton You could try Al-Anon Family Group for your area in NSW - just as a starting point for you to get insights and support networks. Hugs for your journey Geoff ... View more

Maddy/Terese At times my hands have got such a grasping feeling; personally I think I have a slight bent for the throat area, within their resides a major artery, the jugular I think it is called. Yes it is a good thought,.... well for me anyway, such a loving good thought about that jugular I have. F_ck anyone else (except Lorraine and then "yous guys"). Bitches/Bastards how dare they inflict this upon us to watch and endure their demise, HOW DARE THEY! Then how dare they leave us,..... with a whopping big black hole. i dream of that jugular; now no more. Ahh the first anniversary coming up, 4 weeks tomorrow. Sh_t I rarely used to swear, and never in public. ... View more

Hi Nat Dennis's pillow sounds like a very fine item for you to travel with, totally comforting. Wow you are taking such big strides into the outside world. You sound like you are proud of yourself.... yes I am grieving and I am having my life at the same time and I am doing such things I have never done before.,,,, Wow a slightly dusted off Nat is emerging into the big world, anyway that's my reflection of where you, are you make me smile am glad for you Do you tell those people of what you are experiencing, I reply to general comments that I am up and down at any particular time, that way I mostly can say where I am without having being swamped by my feelings at inappropriate times (ie at work) The writing helps me too, brings my sadness to the surface so that I can air it out yet again. It's Ok, it hurts a bit less each time, brings Lorraine flooding back into my life, i like some of those memories well in my mind for those few moments of reflection, its nice to relate back to her. I picked up her ashes Friday, its odd her sitting there so quietly. I am off to New Zealand to see Lorraine's sister (whom has low grade re-occurred non-Hodgkin's lymphoma disease and very bad mouth ulcers for 3 months) next Sunday. I am still stuck on Lorraine’s non-intentional biggest gift to me Beethoven’s 9th and I read her GBM journey into the music and her death into the finale with the Ode to Joy. I know when my grief is close to the surface - the symphony is reverberating inside my head. Hugs Geoff ... View more

Hi Its sh_t, crap, hard & then you get to deal with the extreme anxiety each time you leave the room, and you wonder about your emotions after consistently walking on the edge of this abyss. Welcome to the world of extreme pre grief, and of what is there lurking around that corner. Get respite, look after yourself, there is no one else to take your place if you collapse unless he goes to hospital/nursing home. And this journey takes you there, to that area of exhaustion. It’s a rotten journey, but if I had to do it again I would turn to embrace Lorraine's journey. The journey of bonding, intimacy, caring, is like nothing else as Lorraine shared her looming death with me ...it makes some meaning to such a black hole. I look back in wonderment, 4 weeks on Monday at 5.43pm Hugs Geoff ... View more

hi rasie (Sandra) Lorraine's last 2 weeks were the same - crappy/terrible. Lorraine and you also have the loss of your sons in common, and that is just horrid too. My thoughts and hugs Geoff ... View more

Hi Netty Re Options - make sure you have an enduring power of attorney as soon as you can so that you able to look after some of his affairs (ie Medibank, health funds/ licence/ access his bank accounts/phone accounts etc) In NSW get a form for the enduring power of attorney (find one on the net but make sure that its for NSW -I believe each state may have different ones) read/fill it in what you can make an appointment to see the Chamber Magistrate (in your local court) he/she will assess whether your husband is capable of making a decision to allow you to do this, and sign the form. You need to do it now before his speech and cognitive powers decrease further. and you will need to see the chamber magistrate with your husband See traffic authority for disabled sticker Plan for the funeral what does he want, what do you My partner Lorraine died on the 1-10-2012 3 weeks ago..... seems soo long ago She wrote down 12 months earlier what she wanted including music. It helped me, I now play Beethoven's 9th especially the Ode to Joy for the 50th time (100th?) after the funeral, it reverberates in my mind/body I know when my grief is very close There is still a lot of organisation to be done & decisions before the funeral so if some of the basics are done it makes for soo much less stress on your when the time comes, when he dies. Simple casket, viewing, service and light food after for 80 people $7,000 maybe not much but if your budget is tight and no funeral insurance it is difficult to find Are you intending to have him at home at the final stages /or as long as you are able to physically cope (I being a male was easier for me) then have you a palliative care team? - if not talk with your oncologist get contacts phone number keep a list of emergency phone numbers People who have brain tumors have a high tendency to have seizures. Know some of the procedures to help him so he does not hurt himself till ambulance can arrive - its a scary experience when first confronted. Lorraine had multiple seizures at the start of August she lost her ability to move her right arm lost a lot of power in her right leg. She was in hospital for a week our home was then assessed for what is required to best manage Lorraine at home in a wheelchair - toilet showers dressing food - suggestion Meals on wheels it saves 2-3 hours in kitchen Its a must if you have to be with him for 24 hrs to make sure he does not have a fall and care for him(Lorraine constantly tried to move to go to toilet by herself when I was upstairs getting a drink etc for her in 5 minutes I came back down to find her flat on her back unable to move help herself concern that she breaks a bone and then ends back in hospital Hugs for your journey Geoff ... View more