A time to go.................. GBM grade 4 tumour

[storm]

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

[exhausted]

Hi Geoff Heart goes out to you, my husband is just a few paces behind. His tumour is on the move and no more can be done. The wait at times seems so awful I wish it was over but then I realise that means he will be gone. Difficult painful times. Look after yourself. Terese.

[Hammy]

In my thoughts and prayers xoxo

[Groenevelt68]

Hi Geoff, The muscular pain is due to the tumor, ask Lorraine about how bad the pain is and give pain relief accordingly. As for the brain, staff would ask if Pieter had pain in the head (brain does not have pain receptors), so I would ask Pieter if he felt pressure and give relief based on how bad the pressure was. As for movement in bed, I notices that Pieter would not move as much, so every 2-3 hours would roll Pieter to a new position to relieve the impact on the body (minimise pain and bed sores). Even of it meant that I woke him, I would explain to Pieter what I was doing and why. I also found it good to talk to Pieter all the time (waffling on) about what I am doing, why I am doing it, with all aspects of every day life. It assisted Pieter to know where I am, to know what is going on. Pieter also seemed to know that the end was nearing. I noticed a change within Pieter in regards to this knowledge. It seemed he was at peace, had sorted his mind and was ready for the next stage. I believe that it is a stage that many go through and it helps them. The decline in their health/body is awful. Watching the muscle wastage in Pieter's legs was bad, in the end his legs were only skin and bone. I would make sure Pieter was covered when ever his family (especially his mother) came to visit, so they could not see the body. It is a awful cancer, which affects so much of the person due to what the cancer does to/in the brain. Hi Terese, My thoughts are with you. I understand the journey you are on. All I can say is enjoy every precious moment you can. Take photos and videos (I took may photos and some video on our journey), at first I had trouble looking and watching but over time I find that I need to see them as a reminder of Pieter, to assist me with understanding what happened. To everyone, My thoughts and love to you all. You all have the strength for your loved ones in their journey, as well as your own. There are many who have travelled the same road, who can support you. Reach out and they will be there. Love and hugs Carolien

[peanutz]

Hi Geoff - sorry to hear you are in this situation now and there is not much I can do to help. It sounds very tough and I have no idea how I can handle all this if it is my turn. I find it is hard just to imagine what you and Lorraine have been through. It does bring me back to reality but I have to admit that I did skip reading the details as it is too painful to know what could happen. I hope you are doing OK and take care of yourself.

[storm]

Hi Terese. I am in two minds as well - a heart attack (or something similar)so it is over and done then she does not suffer over such a long time The isolation not being able to talk between us is my biggest frustration (caused by the location of her tumour over the communication /speak area of her brain so the same issues may not be for your husband) and - then I do not want her to go. Presently I am clearer now than 2 days ago the intensity and occurrence of my grief has lessened - well it has for where she is now at with this stage I have asked that she is not resuscitated (I was asked when the paper work for her admittance to hospital just in case she has further seizures it’s something we talked of before and it’s what she wants) Hi hammy Thank you for your thoughts and prayers. Hi Peanutz Lorraine has in so many ways is ahead of me. Despite what she is going through (or what I perceive) she has followed and practiced a Course in Miracles which had sustained her after the death of her son, it has given her a way for life and a foundation I have a different direction and use Vipassina Meditation and sustains me in much the same manner as Lorraine. I tend to be lazy and not practice. The last 3 days I have practiced and starting to find some foundation again. Having a spiritual direction (a spiritual direction that will work for you) can give some peace and a way of coping - it’s never easy you still have to work at it. With some further reflection what Lorraine has and is showing me will be the most valuable experience of intimacy It is a privilege she is giving to me to be with her In my life I have found it difficult to accept offers of help it’s easier to give and not be indebted to another. Lorraine's sister lectured me on seeking and asking others for help. It matters for Lorraine’s as well something I have started to allow (like meditating at a fellow mediator friends place for the last 3 nights on way home from hospital0 it also helps others to be involved in Lorraine's death and to be closer/bond Hi again Carolien (friend - almost old friend after this journey - well so it seems with our respective partners dying and thank you for your invaluable support to me and with practicable insights as death nears) Another thing to look out for - bed sores I have been initiated into wiping of her bum - after defecating (never been to good with defecation I generally gag) noticed that she had some bruising around anus area, got concerned and talked to nurse she said that it’s the cheeks rubbing together and the sweet from being in bed for long periods. This is physically a delicate area especially after her previous issues with constipation. Peace to all Geoff

[Rain_76]

Hi geoff, So sorry about Lorraine, I am at the final stages with my husband, may they go with peace, because this is hell. Stay strong it is not easy and hugs. Lorraine.

[peanutz]

I find it's hard to read this post from Geoff. Seeing I'm feeling OK while at work and finished some work and having a break, I re-read the post and find similarities with my partner's current state as described by Geoff on 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"

[Deni_55]

So sorry for your pain Geoff. My partner is still a bit behind Lorraine's footsteps (we think) Has had 2nd op on parent tumor and now there is No. 2. Has just started carboplatin and has MRI end of August and see Onc on 3Sep. I now dread these scans and getting the results. You certainly are showing great perserverance and love along with a lot of other attributes. Kevin too is wobbly and shaky and finds it hard to answer/make calls sometimes. He is just happy in his trackies and in the "Treehouse" (our back verandah). Watching the slow deterioration, bad days, followed by a good day can be an emotional rollercoaster. I know that the "wobbly" days will become more frequent. My heart and thoughts go out to you at this stage of your journey. Sometimes,I too, think a quick, painless episode of some sort would be kinder than the slow deterioration that some endure. Kevin's dad died from a GBM 4 11 months after diagnosis and was reasonalby well until his last week, so his final days of this journey were few. It is a different journey for everyone. Kevin has had some frustrating days with some display of anger (unusual) . He has seen what the future may hold for him and is processing it. As hard as it is, hang in there and hold dear the good memories and the love.

[storm]

Hi Nat and Deni Your grief Nat - these things that you know with Dennis they will pass, one day it will be a distant memory and it will be OK to turn into it - it will be OK Thank you for your support Deni and hugs for your Oncologist meeting and for both (Nat and Deni) of your journeys with your partners Lorraine is home from the hospital after having the seizures 2.6 weeks ago - the seizures now almost a forgotten memory. Her mobility to walk is gone she still has some ability to stand so I can walk her to the toilet she is vunerable when I walk her so i often take advantage of her neck- males do these types of things I also dress and change her, sometimes feed her Her sister stayed with us till yesterday She was a blessing she cooked, helped me, soothed and pampered Lorraine until I have this new day to day living running OK. She is gone now and we have enterd a next faze with "'meals on wheels' (I dont have time to spent in cooking and cleaning it up - I have to spend it with Lorraine to make sure she does not make a bolt for the toilet by herself (2 times she has tried by herself when I was out of the room 2 times she has come down with a loud crash - she has lots of bruises now - luckily they can be covered She gets frustrated with her right hand as it refuses to go to where she wants it to, each day she has verbal arguments with it. Otherwise we have moved into this new stage and her health has 'stabilised' We go for walks (she in a wheel chair) Its nice where we live near a lake and the ocean not far way. Today she is tired and in bed early and this is unusual for her - so I look and question whether is this the start of the next stage I am on leave from work, heard yesterday that a close work friend committed suicide saturday night. i am perplexed I dont understand Previously we had talked at times, each of where we were are at (he going through a difficult divorce & his father died 10 months ago) He was a kind compassionate guy with horses a 'horse whisper' Last conversation we had he said he was coming out of the difficut period with his divorce and then he said he was going to watch over me in the following months. so much death is around Now I have a memory of Lorraine smiling a soft smile..... its nice