Operation 3 Feb 2012 radiation then continuation of chemo till Dec 2011 Jan 2012 start of Avastin trial - after 4 months of tumour reduction, tumour relarges now with a smaller secondary tumour End of the Avastin now start of stage 2 trial - she has now has Carboplatin about 6 weeks ago Lolly has been to oncologist Tuesday. She is now off Carboplatin, her lession has grown the lession & tumour have both grown from 13x34x28 to 16x40x21 (lession) and the secondary tumour from 5x4 to 6x6 mm over the last 2 months. They grow adjacent to each other Her treatment is now just pain management and steroids. Oncologist believes that operation is not feasible and the surgeon has confirmed the same. The tumour wins. There is not much time left..... believe its a few months (maybe longer) no one knows - all is best guess Lorraine's current state:- She is tired and wobbly at times feeble and shake. She can get out still, but needs someone with her to steady & ensure she is OK. She rarely answers her phone Loss of communication - she tries to talk and most of what she says I dont understand ....this part is hard, she ends giving up trying to say what she wants - & sometimes making a joke that I don’t hear - she will eventually withdraw from me into some inner world of waiting I had the first experience of feeding her tonight she picked up on the ice cream bit and fed herself with an upside down spoon...interesting - pays no attention whatsoever when I suggest that she could right it...then who am I .. she managed although in a somewhat unorthodox way....oh well I am just a male in this relationship who am I to be so upsome................bah .women I have a network of close people who I talk to I recognise that I need to talk with various people - as one person can get overwhelmed with the onsor/t intensity of grief. I am familar with how it can oscilate and turn things to blackness - I watched Lorraine go through years of it after the death of her son (due to heroine overdose) I found him the next day motlted and blue -had to tell Lorraine of his death. That experience especially the second year was so black/intense- then I did not cope shut down -our relationship dwindled for some time With Lorraine ....when a new chapter begins of her progress to death - I have an ititial intense grief for the first day or so then it eases over the next few days to some sort of normality ....this is its rhythm/ my rhythm, well at present anyway. 2 weeks ago Friday Speaking with the coordinator since -said that the chemo was still affecting Lolly's blood platens (?)(I think that is the correct spelling) so there could be some increase in energy Sunday was the day that she seemed to change... staying in bed till 11.30 washed out almost greyish Although a friend saw her on Saturday and thought she had deteriorated over the previous last week. I did not think that she would get up out of bed on Tuesday to see the oncologist - I am guessing but I think there maybe a fair amount of mental fortitude for her to energise herself. I am concerned of her pain (mainly lower back into LHS below her hip/bowel area I can not get a better description) The registrar did a physical check said it appeared to be unrelated to chemo or tumour - so may improve but if it gets worse ...then to do checking Talked with a good friend she said that Lorraine has done her grieving earlier. Funeral organised a year ago. I look at myself - feel a mess at times while Lorraine seems accepted/resigned to her death she appears to be handling it so much better than me (well at times anyway) That aspect helped me gained some insite and stability I have sent a email out to Lorraine's closest people sibblings and friends. Some will start coming Today Lorraine is basically OKish although looks bored with not been able to do things have her daughter up on Sunday and another friend Saturday I have no issues with recognising the tumour and the stuff that it causes I see Lorraine or my perception of her - its witnessing the slow decline of her (so now i am constantly re-assessing my definition of her as her mind fades away) the loss of her cognition of what is around her and the isolation she has (even though I try to include her in what is going on) We talked she concerned heard/acknowledged/recognised my feelings/grief and she smiled a soft smile......... its OK .......................its what is Went to see the chamber magistrate today (Lorraine is classified as severly impaired cognitively) He would not sign for the power of attonery and the other form to make choices for her medical issues - so now got to go through the tribunial So issues of banks and now to deal with further issues of the tribunial............. this stripped off my 'protection layer' and my undering grief has been present....now easing off Friday Night Lorraine had multiple siezure - down down her right side. Lasted 20-30 minutes..... of various intensities 2 low 2 strong (my opinion) Siezure was the first time, the first experience...... scarey to see her so vunerable to the attack, ambulance and regional hospital (we are on Mid North Coast) CV scan shows no brain bleed so not a stroke emergency ward doctor spoke of getting a MRI scan 9on reflection probably little use) She now is on strong dose Dex (steroid)- 8 mg in the morning and again at night + the anti siezure medication Saturady Most of today I was at the hosptal I am with Lorraine again tomorrow. Today she was mostly asleep with occassional short awakings to look aound and gaze. At various times I felt as though she was not aware of me/ who I was Other times she has the gentlest smiles.....its almost a spirtual experience (well for me) 6 pm tonight she appeared to have more energy - was able to feed herself with her left hand (her right hand she was able to just move to scratch her nose better than this morning her arm was 'dead') I hope to get her out of the hospital asap - however with Lorraine's physical deteriation I need to have the pallative care ready and I may need a lifter amoungst other equipment to manage her at home - to be determiend Presently I am tired from an extreme emotional day and lost sleep. Sunday Lorraine still has very limited use on RHS and speech is very gargled but better than yesterday fed her the regional supplied hospital food (so much better than the RPA food that is/was dished out after her operation Feb 2011- who ever looks after the contract should be infused wth an assortment of chemo drugs .....please note no other issues with the RPA, all staff excellent) Had Lolly's daughter, granddaughter and grand kids all on Sunday although in one big group...... if she survives for a while they can individually see her Monday (today) saw ward doctor give 2 weeks to a few months before she will die, it hard to tell recommends anyone to come to do so now. Have called her close sister to come from overseas. She is arriving Thursday. See the Occupational therapist tomorrow for equipment & new oncologist (we have ben transferred to be closer to home so need so contact) 3 nights ago the multiple siezures happened ........it feels so long ago........................................ its some disassociated memory Life has changed Geoff ... View more