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.
Patches, why can’t he stay at home? We live in the Boston area and my sister in-law stayed home till 4 pm August 30 and went to A Cancer center and passes at 2 a.m August 31. She wasn’t even there 10 hours before passing. Is that the rule of the state you live? Just questioning why they don’t do what the patient wants. That to me seems out of line and mean to the patient and his loved ones. I’m so sorry you are going thru this...❤️
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
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.
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.
Im so sorry you are facing these strange and unusual situations alone. I had a few days in hospital myself. I got home yesterday afternoon. Believe me, if the specialists thought they could send your husband home, they would.
Hospitals are a dangerous place to be, and should avoided if possible, given the Coronavirus. The clinicians wouldn’t jeopardise your health, as a visitor, if there were other options.
Abdominal drainage isn’t as traumatic as it sounds. I had to have it last year. It doesn’t hurt, and the relief is remarkable. I had 6 litres drained and believe it or not, my headaches disappeared. No idea about the connection, but they did. Most likely removing the anxiety. I just hope there can be a positive impact on your man.
When my wife passed away in 2016, she had had enough. Third time of relapse, she wasn’t mentally up to another fight. She refused intervention and died in my arms calmly and with no pain. We were together and the hospital staff were wonderful at managing her pain. I was with Maria the final 3 weeks of her life. The staff made me feel welcome & I think they understood our situation very well.
I think what ever you and your husband decide, the treating staff will do everything they can to make you both comfortable. Everything will be right on the day, as “they”say.
The next phase of this whole horrible situation, is you. Where to afterward? You need support. You need to unload all of those things you’ve experienced during this period. A family member, who you can talk to. Who understands? Possibly not. A close friend, who can be there when they are needed. Woman are better at making those type of friendships, then men. Still, sometimes it just isn’t appropriate.
Someone who is completely separated from your ordeal. Fresh eyes, non judgemental a good listening post. After all, you just need to unload, not necessarily get advice. These councillors are around. They can be found at the hospital, where you have been visiting for a long time. They are involved in church groups ( if your that way inclined), your GP can refer you to someone.
Finding a group of people, through Cancer Support websites, seems to be a great start. People who are empathetic and understanding, who won’t judge. These groups are mostly in the city, but are available in country areas too.
I hope you and your husband get through the next stage well. I hope whatever you both decide is healing for you. After all, you’ve been through the stages you have no control over. Being in the drivers seat now , gives you the power. I hope you get some extra help to keep you mentally strong.
I hope getting your thoughts, and concerns down on these screens lighten the load a little. This is just a small start, for you, to pick up the pieces, when they’re required.
Best of Luck....we’re here.
I am so so sorry Patches! Cancer truly sucks, not only for its victim, but for the ones that love them most. It is absolutely alright to cry. You need to, he is your love, your husband. You can cry all day if you need to. I am sending you a big hug and many prayers your way. Do you have any of your family around or your husbands to talk with? 🙏🏻❤️
Be part of this supportive community