Oh sh_t Nat your partner too many many hugs Geoff ... View more

Hi Deni Lorraine was in a trail using Avastin &/or Carboplastin (another chemo drug) Lorraine was picked for having only Avastin She was taking Avastin from January till April when her lastest MRI scan indicated that there was an increase in her tumour. Effectively Avastin allowed another 4 months for some quality of her life which is fairly average from my previous research. The side effects she experienced are milder compared to the chemo drugs she has taken todate Experienced tiredness for 5 days some nausia after taking the Avastin. With your partner repeating things, Lorraine recently developed extreme pains in what appears to be her bowel and in hospital with now morphine to give her some respite (I think it her bowels as she has lost ognitive awareness and includes her ability to talk (even say yes or no to closed questions no matter how many times I ask her) I talk to her I think she is paying attention and when I think she should answer (as in a normal conversation) she will look elsewhere and her attention is lost, difficult to regain. Its highly frustrating but it is a part of her deteriation. The contrast of then and now is made more pronounanced as Lorraine (was/is?) a highly intellegent and capable woman, now her intellengence is experienced only in very short fleeting moments. Best wishes for your journey ... View more

This morning Lorraine had serve pain in her bowels (bowel are best guess - she cant talk and has little in ways of communication) from 3am to 5.15am then ambulance to Forster hospital where is now being monitored for next few days. 10pm she got a small dose of morphine and was resting/sleeping so left knowing that pain is finally be OK for tonight. ... View more

Since Lolly's multiple seizures and resultant week long stay in hospital, she continues to deteriorate from her brain tumour. This last week her energy has been very low and her cognitive powers even less than before, so she rests/sleeps a lot. Today she has been partnered in bed all day with major pain and associated spasms located somewhere in her stomach/bowel area. A catheter has been inserted but still the pain continuous. This will not be a good night till stronger medication is got. So a new stage takes hold. ..................... another stage closer. I now have called for those who would care to come and those that care Hugs to all Geoff ... View more

Nat “I'm so impressed that you can still joke in this situation. I guess it's how we can get through this sh!t. Thanks but underneath the joking is my grief/anger as well. I use this as a way I can talk some of the surface stuff and get on with day to day stuff while Lorraine’s eventual death draws near. It helps me. Re palliative care team - start planning for the worst so that you have a system in place as his health progressively deteriorates. After Lorraine came out of hospital (from seizures) the palliative care nurses as well as occupational therapist from hospital did a home inspection gave some advice. Note that I do have the advantage of being male and taller than Lorraine so I can do some limited carrying of her, but even so, she has deteriorated to now a dead weight so she is now difficult to manoeuvre, I change my way of getting her around the bedroom as she deteriorates - presently I try to use a commode shower chair to transfer her from bed to a sitting chair in the bedroom. At worst there is a lifter that I can also use but the lifter in the bedroom as well makes for more work to manoeuvre furniture around . At one stage I thought of putting in a handgrip in the toilet for Lorraine’s use but now she not getting to the toilet at all. We are now reliant on the incontinence pants and also an extra insert in the incontinence pants to further soak up the urine for when she is in bed during the night, I still can find urine on the bed base sheet but my major concern is to protect the quilt as that is hard to clean (there is a Kylie sheet and plastic sheet provided by palliative care under the bed sheet for protection of the hospital bed mattress which has its own waterproof covering) You will need to find your system that will work for you, Denis and within your house and in that order – you must look after yourself otherwise if you mentally/physically deteriorate its respite or if not able hospital or a nursing home for Denis. Ps suggestion- the incontinence pants should help contain some of the defecation/shit occurring especially if it is watery Re shower we do not have much room to manoeuvre in the small on suite bathroom so use the main bathroom (but it is a shower /bath set up) where I use the toilet with the commode chair over the toilet and place a few bath mats around - approximately a 1 metre or more away to limit the spread of water. I got a shower hose extension from Bunnings hardware shop that attaches to the tap in the bath (if you try to get one have a close look at the end of the tap to ensure that you get one that will fit (the tap end)) Hopefully you will be able to get from palliative care (they supplied us a commode shower chair, a walker, a toilet seat with handles that sits over the toilet approximately 150 mm higher than the toilet - so that it I not such a big distance to sit down and then stand up from the toilet) From the hospital and after paying $50 hire fee I got a lifter and a hospital bed (bed that has ability to lift either end of the bed mattress) the hospital delivered the items to our house. See what is available for you, enquire if you can get the same from your local hospital or elsewhere. It’s OK to allow him to realise that you expect him to get worse, it may free up some stuff for him as well so that he will know that you will be alright with the enviable outcome and can talk with him about it. It’s scary and I have moved through it somehow each time although I have a woman who is highly self-aware and she has a belief foundation that sustains her (well, so I believe that she is using belief and is still being sustained - I can’t tell she can’t communicate for some time and her cognitive mind is mainly gone ) (Although today I thought that she has been angry with me for doing something (not answering yes/no questions and her generally not looking at me) but with her non ability to talk, and her mind wandering off it’s been frustrating. I am backing off to allow some time and space to occur from whatever it maybe is ??????) She finally said no, that she was not angry with me when she had a brief period of cognition & she indicated that she was frustrated not being able to talk......all said with 2 words - no and yes, with some facial expressions) Re your comment that “It's nice that he doesn't have bad BO hehehe” I image with you being “I'm so tiny comparing to my partner.” that your nose would be somewhere at least his arm pit level then a very lucky you for being at his ‘arm pit level’ with no BO. The “ stand and perve” I assume is remembering of your lustful days gone by………grief and loss is a horrible thing and encompasses so many aspects of our lives (the standing bit I don’t understand, but that may be personal/intimacy experience). Now just on reflection, I am having a different subtle insight into what you may be referring to…… hahaha if so - life can be warm and fun Ps There may come a stage when pills cannot be easily swallowed. Some pills can be broken into small bits and/or crushed I have been told that custard is a gone medium to mix the crushed pills into its slippery. Check with chemist which pills can be crushed though. Hugs Geoff ... View more

Sunshine I’ve lectured Lorraine getting out of the chair or bed without me as she ended falling each time (this was occurring a few weeks ago when she could still take a few steps) Then I remember that lectures general add resentment and do not work Lorraine is doing the best she can with what she has got Memories get placed in different areas of the brain and/ or the recollection of that memory might have particular pathway/s through the brain, some are disrupted by the tumour, others are not. That may help explain why she is able to put the side down and not recall your lecture one is a tactile memory the other is a verbal memory. The reason does not help you though and getting your sleep is important to be able to face the next day. A question - can you get some respite give yourself a break away Ps I to have had the many "WTF" and "How the F did that happen" times, in the morning in bed with breakfast she had a juice and spilt on the bed. That with the morning urine I had stripped the bed and washed /aired all linen, it’s a never ending story. I am glad that my story was a laugh for you Ps “arent at that #2 stage yet, although I can smell it I havent had to clean it.” Old Chinese saying Never speak of the well from which you will not drink. Children After what you have been with your mum, being a mother would be a similar but very different experience. One has death at the immediate end, the other is with new mischievous and daunting little buggers (also adding to the over population of the world but I guess that I am a touch byous -I have no kids but I am a defacto step dad? I think that is right) I am also told there is a very ugly gene found in the depths of womanhood that raises its rampaging ugly head at some stage during said pregnancy This gene often evokes some type of love and defies all that may get in the way of her and her kids. It changes all To elect to care for your mum and get to this stage (and you are dealing with it the best way you can) and being open to questioning whether to or not having kids infers to me that you are emotionally healthy and would be an excellent mum (but maybe give yourself sometime after her death to have some quality time of your own (kids are for life)) By the time they are adults history would have repeated …and the kids live with you for ever and ever (but I guess you can always love them to death… that often scares them gets them out of home) Hugs Geoff ... View more

Hi Nat, Terese and Sunshine Just big hugs to all Yeah the talking it’s a never ending story regurgitating feelings only to arrive at where you/I started. One day it will change,…one day. I do it as it takes some of the edge off but for me its also good with just knowing and connecting with others who have similar experiences ie you Nat, Terese and now Sunshine. You are all good women, the people who you care for are a high ask, it frustrating, anger inducing and a horrid experience to encounter with litttle thank from those that are dying on us. Your compassion is remarkable, you have journeyed with them to this stage of their lives and maybe will continue to do so. nat to reinforce what has been previously said Re pallative care, I am now doing 24 hour caring after her seizures and I couldnt do this alone without the pallitive care, just that they are there with emotional support (and if necessary so that you can get the time away from your partner - respite) Also get meals on wheels I initially thought that the food would be pretty horrid but its not too bad (well here at Forster and at $7.50 per meal, per person). It also allows time free from cooking/cleaning the main meal its a god send for that free time. Hey just got Lorraine off to bed after toileting her etc. I went to toilet whilst peeing happily away (I have a few hours to myself before bed)…….now …..oh what is that a dark shape across my toe - a leaf that the cat has bought into the house and somehow it has attached itself to my toe? Dark thoughts also crepe/crossed my mind, nah it can’t be, she is just toileted, into bed and clean a whistle, she had a sh_t yesterday….. it’s all cool. A closer inspection…oh sh_t ….it is a sh_t, bloody sh_t. After cleaning said toe, then found evidence on my jeans, but back to her bed thinking as it just some polyp size probably escaped after flatulence, (I recall that as I had made comment on the rather strongish aroma after the flatulence when just before getting her into bed) no stuff on floor or in other areas ….oh dear found a touch on the safety rail of the hospital bed,…..easy, it’s cool, so clean that up, check her pants ahh some residual – I am thinking a quick bed bath covering the area…. still not too bad and its confined within pants and not on bed linen. Now to attend to her pants. Get glove, wipes, position chair and think through process to lessen movements (she has started having pain issues in stomach/bowels- any movements can be pain inducing) All set. Rip incontinence disposable pants off (note anyone reading this and do not have experience that these pants are actually designed for ripping at the sides for an easier removal while patient inbed) and idol male thoughts of long forgotten passion begin to stir in the background upon said ripping, oh why was this not around when I was 17 (thoughts forgotten now as a by-product of the GBM). Oh sh_t ….it is a large messy sh_t, its everywhere within the pants, oh bloody sh_t. After the full blown realisation I have a large clean up job, my background male thoughts are once again quickly thrown back to the cold wilderness for their death by undeeded deeds,…… and then a thought sips through….. ahh that will teach me for my inappropriate comments at the time of the rather strongish aroma of her flatulence (flatulence that lead to all this)….. So now I must remember…. smart arsed remarks have the capacity to return to their maker, in so lots of different ways. Now to get her out of bed without spillage onto linen, onto shower commode and to bathroom. Night shirt saved , bed linen not so lucky – so strip bed and lucky me some more washing. Sometime later I finish. Lorraine safely in bed, snores away seemingly oblivious of issues. But its Ok I can talk about the experience, make fun of the stuff that happens (and it is stuff in hindsight, it’s just getting to the point where I can call it hindsight and then recall it as a remarkable experience – she has allowed me to be with her at this important corner of her life, it something that I often forget). Bless her for she will die and not far in time. I love her and after I will miss even this part of a crappy story that binds us together. Also a times I wish for the nightmare to be over and I can get on with my life. I get so fed up with how it is, and Lorraine's non answer to the 10 times that I have ask a closed and simple question.... as her attention was not there but in an ever expanding neverland. There is so little in quality of her life now. Geoff ... View more

Hi Nat Not been on the Cancer site …kind of lost the hope and incentive. We have a nurse come in Mon, Wed and Friday for showering, however today she had a bed bath (pain in her stomach and bowel for the last 3 days so moving her is difficult and with her energy being low for 3 days - a new stage?) Also palliative care nurses once every 2 weeks with options of coming when and if required. So I am surprised with the amount of support out there Lorraine continues to deteriorate she is now very quiet in our day to day communication she cannot form any words an occasional yes /no after significant repeated closed questions , she has lost the remaining strength of her legs so toilet is an issue Incontinent pants are used 4-5 changes during the day . Her appetite is good. Most of the day she just sits and I feel for her boredom (well my perceived sense that she is bored as the tumour and/or drugs may place her in a ‘stupor’ (I can’t think of a better word to best describe her state) We used to get out each day with me pushing her around on a wheelchair but this may not be obtainable in the future until I can get the pain management under control and her energy increases Speaking with a friend today who will conduct her funeral.... that talk reopened my awareness of where Lorraine is and again feeling of grief to the surface once again – her death/her going/leaving. The friend will come around Friday and I am feeling I do not want to go through this - this talk and recognition of a new and closer stage Ps If you are doing full/part time caring for Dennis be aware that there is a carers allowance approximately $110/ fortnight you can claim from Centerlink (as well as another carers payment - but that is related to any other monies you might have coming into your accounts I did not bother as I am on compassionate leave from my work and still getting a salary). Register as soon as you can as any payments are only applicable from the day you register as intending to claim. The form must be also signed by doctor/palliative care nurse as you being the carer of Dennis. So speak to your palliative care nurses for initial advice Hugs Geoff ... View more

Hi Nat Not been on the Cancer site …kind of lost the hope and incentive. We have a nurse come in Mon, Wed and Friday for showering, however today she had a bed bath (pain in her stomach and bowel for the last 3 days so moving her is difficult and with her energy being low for 3 days - a new stage?) Also palliative care nurses once every 2 weeks with options of coming when and if required. So I am surprised with the amount of support out there Lorraine continues to deteriorate she is now very quiet in our day to day communication, she cannot form any words except an occasional yes /no after significant repeated closed questions otherwise its a babble, she has lost the remaining strength of her legs so toilet is an issue Incontinent pants are used 4-5 changes during the day and much washing of clothes and bed linen. Her appetite is good. Most of the day she just sits and I feel for her boredom (well my perceived sense that she is bored as the tumour and/or drugs may place her in a ‘stupor’ (I can’t think of a better word to best describe her state) We used to get out each day with me pushing her around on a wheelchair but this may not be obtainable in the future unless I can get the pain management under control and her energy increases. Speaking with a friend today who will conduct her funeral that reopened my awareness of where Lorraine is grief to the surface once again – her death/her going/leaving. The friend will come around Friday and I am feeling I do not want to go through this - this talk and recognition of a new and closer stage. Ps If you are doing full/part time caring for Dennis be aware that there is a carers allowance approximately $110/ fortnight you can claim from Centerlink (as well as another carers payment - but that is related to any other monies you might have coming into your accounts I did not bother as I am on compassionate leave from my work and still getting a salary). Register as soon as you can as any payments are only applicable from the day you register as intending to claim. The form must be also signed by doctor/palliative care nurse as you being the carer of Dennis. So speak to your palliative care nurses for initial advice Hugs Geoff ... View more

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 ... View more