Palliative care team in our town has a palliative care counsellor who I have seen once and he was great.  We have not set another appointment as yet but I will request another appointment soon ... View more

I am an only child and both my parents are deceased so I have no immediate family on my side ..... I have lots of cousins but it’s not the same.  My husbands dad is still alive, I try not to lean on him too much as he is late 80’s and went through this on his own almost 6 years ago when his wife died of cancer.  I have spoken to palliative care counsellor and the chat helped that day.    Last couple of days so many different things are happening that I am struggling to cope with.   he was admitted back to hospital on Wednesday evening as he had lots of issues standing and walking.  He was placed on Lasix and his ‘weight’ decreased by 10kg within following 36 hours.  Since then he is constantly passing large quantities of fluid but there is little changes that I can see in his legs.  Yesterday morning palliative care nurse gave us offer to have him home on Tuesday provided he is cleared on medical aspects.  Around mid day he had abdominal tap inserted but it was unsuccessful regarding draining lots of fluid as he has some type of a do all blockage, this will not be able to be investigated until Tuesday or Wednesday next week as Monday is public holiday.  Due to having to stay in hospital for unknown period of time he became very angry last night and aimed most of the blame at me and told me not to come back unless I can bring him home urgently.  Last night he refused to eat anything saying he has nothing to live for and wants to die.     Today his head was in a better view but got very upset and started crying when I said the blockage has to be investigated before any other decisions can be made.  After sitting in a chair for approx 2 hours he was exhausted and his nurse suggested he go back to bed for another sleep ...... he is now spending approx 15 to 18 hours in bed each day.  I found out yesterday that his legs are getting quite weaker, weaker than I was aware they are.  He is approx 110 kg but is unable to standup from oncology chair without assistance of 2 nurses.  This afternoon when the nurses got him to his feet he grabbed me arm and said help me.  He can do  not much more than shuffle when trying to walk and on ivy nurses are not letting him walk (with their physical support) any distance more than half length of his bed.   he has begged for me to bring him home and have assistance at home from palliative care nurse for next 2 weeks (hospital bed would be supplied free) but I don’t know this is going to be able to happen now.  He tells me he would not be able to get into my car.  We have 3steps at front and back of where we live which he would not be able to climb.  His memory and comprehension is starting to fail but majority of the time his mind is quite alert.  He is terrified about going to palliative care unit in our town as he visited his mum nearly everyday in 2014 for approx 3 weeks until her body finally gave up and she passed away.  He has said if he has to go to palliative care unit he will not eat as he can’t cope any more and wants to end everything know.   i wish I could bring him home and I am in so much emotional turmoil knowing that this is getting impossible plus also knowing that my husband will probably starve himself to death within next few weeks ... View more

He was placed on Lasix last night but there is no physical sigh of reduction in fluid in his legs.  He has agreed to have drainage tube and tap inserted into his abdomen, hoping this can be done tomorrow.  Palliative care are making plans that he will come home from hospital to hospital bed and palliative care nurses attending home for first 2 weeks he is home.  Concern from oncology doctors and palliative care doctors is, due to his low strength and muscle mass plus huge amount of fluid that he is quickly approaching time where he will be unable to stay at home as i am his only carer, safety concerns for me .... also concerns if his health deteriorates much more he will become fully bedridden, I could not care for him if that happens.  My husband has said at times it feels like his body is getting very tired, too tired to be able to fight for much longer.  He is also concerned his organs are starting to fail.  I am so scared he doesn’t have much time left to live, I am struggling not to burst into tears at least twice a day ... View more

I spoke to palliative care in the community nurse today about my concerns about his health and she advised me that the things I am worried about are all possible indications that his body might be starting to shut down...... he is becoming quite confused at times, he is constantly cold,  his arms start to bleed at times when he just bumps them.  I am very concerned his liver is failing, this is due to very unhealthy colour and smell when he urinates. ... View more

My husband has been admitted to hospital again tonight due to severe fluid retention in both legs that has left him being unable to get himself out of a chair himself or even being able to stand on his own.  Other concern of doctor tonight is he appears to have Ascites.  Doctor tonight has started him on different type of fluid medication which started working within 30minutes.  He was given this medication as a one off when in hospital in January which worked really well but the one off didn’t keep the fluid away.  He will be seen by oncology doctor on the ward soon, possibly tomorrow to discuss options regarding the fluid retention in his abdominal area.  When drainage tube was mentioned tonight my husband refused to talked about, this I understand as he is terrified about it being inserted, what it means ongoing and pain involved with the tube being inserted.   ... View more

Last time I can say I have had a solid full night sleep would one or 2 night last month when my husband was in hospital (slept due to exhaustion)...... prior to that I would estimate was in early October  ... View more

We live near Melbourne, Victoria..... there does appear o be large push from parts of medical staff in local hospital for people to go to rehab and palliative care units once they have been in hospital for more than a week, are frail or aged.  Concern with my husbands health in regards to staying at home relates to he is mobility and stability on his feet is already quite limited.  I would estimate within last 2 months he has lost over half his muscle mass from all over his body.  It is almost impossible for him to get himself out of a normal recliner as he doesn’t have the strength in his legs.  He is unable to lift his legs on his own to get himself into bed ..... he is struggling to be able to fully dress himself from waist down.  Drs estimate he has approximately 10kg of fluid in his legs due to odema.  We have a self help bedstick but he doesn’t have strength in his arms to move himself up in the bed once he is in bed.  Only way he can semi sit up in bed to have his pillows adjusted is to have me quickly lift him up but even this is strenuous for him.  If his muscles deteriorate much more he will almost be bedridden and we don’t have capacity to keep him at home if that happens.  He is showing signs of Ascites, liver failure, respiratory issues and severe fatigue.  Scales yesterday showed an increase in ‘weight’ by approx 10kg in the last month but he is food intake has mainly been cup-a-soup, I know the gain is due to fluid retention  ... View more

I am devastated.  My husband and I had meeting this afternoon with group at cancer centre of local hospital which consisted on senior oncologist, nurse, physio and dietician.  Main thing that was mentioned in the meeting my husband has lost huge amount of muscle mass which is now putting his life, independence and ability to stay at home at risk.  We were told that one part of review in 6 weeks will be to assess his muscle mass at that time.  We were told that if he looses more than 3 kg in muscle mass he will no longer be able to stay at home and will hav3 to go to palliative care unit in our town.  My husband reply was if that happens he wants his life terminated immediately as he doesn’t want to go on living if he can’t be at home.  Seeing how physically weak he currently is I am terrified that he only has couple of months left to live. ... View more

Some parts of days my husband feels good within himself and interested in doing small things including going out yesterday for short drive in the car and medium walk both times but he was very tired after we got home after the second outing.  Most days until early to mid afternoon he isn’t good and has said he doesn’t feel good within himself.  He is struggling to be able to feel warm majority of the time.  Lounge room is currently 25degress, we have the heater on, he has wool jumper on and is sitting under a blanket.  Today he has said his legs are hurting and saying .... ‘when I am in hospital this next time’.  He feels that miserable within himself he is expecting to be going back into hospital as in-patient again soon. ... View more