Thanks Julie, The sleep comes and goes, am taking a 'natural' pill to try and help with it. I have some appointments lined up for tomorrow, so Greg will be taken to treatment by patient transfer, (which actually makes things quicker as they take him straight through to the technician and bypass the waiting room!) Hopefully I will get some more info tomorrow which will ease some of my worries. Greg is thinking a bit clearer today, still has forgetfulness and still gets confused but not as much as earlier in the week. Fingers crossed! Off to bed now, good luck with the fine needle biopsy. Jill ... View more

Hi Sammycat Due to the events of the last week, with the diagnosis of my husband's secondary tumour on the brain, we had a session with a social worker last Thursday. She was very helpful and a really lovely person, reading your entries made me think of something she said to us that one of her 'clients' had done. They made a patchwork quilt out of their loved ones clothing items. It served two purposes, one it was something they could touch and hold and smell and secondly it could be wrapped around them, giving them both warmth and comfort. I am not sure if you have any of your Mum's clothes etc still, I seem to recall that you might, I hope if you do have some, then that might be something you could do to comfort yourself. Maybe if you didn't have any/many of her things, you could take some of your own clothes that were her favourites or that she had bought you and use them. The thought of cutting into them might not appeal, I just thought the blanket was a really nice thought. Sending you strength. Jill. ... View more

Thanks Sailor and Julie, It was the social worker that told us to get him to sign it, which we did and then the oncologist told us that it wasn't ok for him to sign it. The social worker will be back at work tomorrow, so I will speak with her about it again then. ... View more

Thanks Sailor We had had the "I want to be cremated" discussion and the organ donor discussion years ago. My problem now is that without an enduring power of attorney signed by him when he is 'competent', I am currently in limbo, as he is currently not deemed competent to sign legal documents. That may change, but what if it doesn't? The current situation is hard enough emotionally without dealing with the practical and legal aspects. My understanding is that he can't even sign an authority to be medically assessed for disability payment with Centrelink. This is scary stuff. ... View more

Just to top things off, I had received an email yesterday with subject heading in capitals "SUCH GOOD THINGS HAPPENING THIS WEEK". Naturally I didn't feel that way and the fact that it came from Amway whom I have been trying to piss off for months didn't help. I sent a reply back ( I have met the people who sent it) saying, Please take me off your mailing list. Greg is in hospital with a newly diagnosed secondary tumour on the brain, his prognosis is poor and the subject heading for this email is very upsetting. After firing up the PC so I can come and seek some 'sanity' with you all, I notice an incoming reply. Subject Heading "RE: SUCH GOOD THINGS HAPPENING THIS WEEK". Hi Jill, I have been thinking of you oftenand not knowing if it was OK to call and just say Hi. Would that be OK? My response. ........ No. Nothing more, although I wanted to say, you insensitive f@#*ing B****, can't you read, I told you your subject heading is upsetting and you send it back to me AGAIN. F@%* off. ... View more

Hey reindeer, I can never be sure when I see 'who's online' that that is current. I really need someone right now, (refer to Feel like a punching bag thread). Are you online 3.20am Wa time? Jill. ... View more

Another huge blow, this one has knocked the wind out of me. I am shaking. At 1.50am this morning I am woken by a text message on my mobile phone, it is from Greg. It reads, "I have returned to room 26 - Alex doesn't know where we moved to, love you lots Gregz". I am freaking out, what is happening, I ring the ward desk immediately, no answer I get diverted to main desk and they can't get anyone on the ward. What is happening? They try another number and I get a nurse on the ward. I tell her that I have received a disturbing text from Greg and ask her to go and check Greg's room. She tells me she has been working in the room opposite his all night and he is fine. I ask her to check, she agrees to and puts the phone down but doesn't put me on hold. I wait and then I hear, CALL SECURITY, I am freaking, has he wandered off? I wait for what seems an eternity and she comes back, I can hear the fear/anxiety in her voice, Greg had his bag all packed, was dressed and was about to leave to find room 26. (He is in room 26). She tells me she is going to get security to come and 'detain' him and will call the night doctor. She will get him settled and then phone me back. What do I do? Greg rings me and tells me he was going to go to room 26 but says he has been sprung and that he has to wait there. I tell him to stay there and try to get some sleep. I know he is not understanding anything I say. I send him a text telling him I left photos of the boys for him in room 26 and that he should look at them for me and wait there. I get another text from him "I've packed the photo's, MRI and note pad. The door now has on it room 26 on it so we have to stay put and want me to go back to sleep. They appear to get this sort of thing quite regularly, so have systems in place to handle it. What room are you in?" My heart sinks..........I send him a text back (he seems to be understanding more if it is written rather than verbal), I tell him their systems are good and that he should stay there. I know where room 26 is and it is a nicer room than mine, so I will come to his room. He should have a sleep while he waits for me. I ring the ward desk again, it rings and rings. I don't want it to divert so I hang up and try again. My mobile rings and it is Greg's number showing but the nurse is speaking. I take a breath. She tells me he is calming down, they have given him a mild sedative under his tongue and she has another if she needs it later. She tells me someone is sitting in the room with him and will stay there all night with him. She has taken his mobile off him and will keep it until the morning and that I should relax. She will phone me if anything else happens. Relax? How the f@#* do they think I can relax. So here I am at 3am in the morning (WA time) posting an SOS message to you all. What am I going to find when I go to see him this morning? I have had 2 hours sleep, only 3 hours the two previous nights. I had a horrible feeling that today we were going to get more bad news, we have a friend whose birthday it is today. Each time we have had bad news, it has fallen on a 'significant' date. I am shit scared. ... View more

You're not going crazy, you are a caring human being who needs someone else to care for her. Cry, your body will be so wound up that it will need the release of the tears before it will 'relax' enough to sleep. Once the body can relax then hopefully you will get that sleep you are craving. My body is craving it right now, so I am signing off for tonight, and will be back online to touch base with all my fellow warriors tomorrow. We can all draw strength from each other. Hugz to you, Jill ... View more

Hi Samex, I have been concerned about the boys, I have tried to stick to the "be honest at an age appropriate level" advice throughout the journey but know that there are times when it all seems to big for me to handle so how the hell can they be expected to? I spoke with our eldest son (almost 😎 on Monday night, telling him that the confusion Daddy was having was being caused by swelling on the brain and that he had to stay in hospital to get medicine to try and reduce the swelling. While we were talking and I had said that I was scared and worried, I started to cry. At that point he gave me a cuddle and then I could feel his tiny body start to shake as began to cry. I told him it was ok to cry and that it can actually help our bodies if we cry because it takes away some of the tightness that we feel and allows our body to feel a bit more relaxed. I told him it was nobody's fault, that nothing can be said or done to make this happen. I had an hour long telephone conversation with the social worker today which was REALLY helpful. She will come to see Greg and I tomorrow when we get back to his room after the appointment with the radiation oncologist, so will definitely speak with her about the kids. ... View more