I don’t know how I currently feel except emotionally exhausted. My husband was admitted to hospital again yesterday, 3rd time this year. Each time with cellulitis and only couple of days after chemo. He was feeling really good within himself on Friday and Saturday including coming grocery shopping with me. Sunday he woke feeling tired and by mid morning his feet and legs were swelling, red colour from infection was happening and his temperature was rising. Ed drs have suggested to focus on quality not quantity and reassess his chemo. Two weeks ago when he was in hospital he asked to have a break from chemo but got talked into having chemo 6 days after his discharge. Later this week we are having family meeting with his oncologist and my husband to discuss no more chemo and letting him enjoy the rest of his time at home with me and his elderly dad
I am scared my husband doesn’t have long to live. Nurses are doing ecg at least twice a day. Nurse last night told me there is some concerns his AF is getting worse. When she manually took his pulse she counted 100 beats but said his heart rate is very erratic. His stomach is swollen and his pain is all of a sudden getting worse.
A very stressful time for you....
Make sure that you ask many questions to the staff. I found that the nurses were more helpful and honest than the Drs....
They deal with this all the time so are really good.
Just keep up with good pain relief.
Sending positive thoughts x
He received electrolytes during the night which has brought areas of concern under control. When I saw him tonight he is much happier in himself and is looking bit better. We still have long way to come before drs will consider discharging this time due to mouth ulcers that appeared yesterday which are quite painful and preventing him from eating due to pain and talking properly . His abdomen looks better. His nurse said his legs are improving and are not concerning drs but I have verbally raised my concern about the amount of fluid in his legs knowing this can lead to chance of another infection. My husband, myself , his dad and one of his adult children are having meeting in his room tomorrow with his oncologist, my husband wants his family present as support when he tells his oncologist he refuses to have any more chemo. If conversation is successful this will be huge relief for everyone - I wasn’t happy last week when I knew he was having chemo less than a week out of hospital but my concerns were not listened to. My husband told me tonight he felt like he get talked into have chemo last week by oncologist who was filling in for his regular oncologist. I am so angry she didn’t listen to him last week, he might not have been back in hospital this week if his wishes had been listened to and acted on ie chemo cancelled last eek. His nurse tonight advised she will try to get physio to see him tomorrow with prospects of him being able to get out of his single bed room and go for walk in the ward ...... he is mentally struggling and I know that being able to get out of his room with help lift his spirits even if only by small bits
Good luck with your family meeting.
My partner made the decision to quit chemo as it made him feel so bad. I was actually relieved that he made the decision. It was terrible having him go through neutropenia and sepsis.....
I know that he felt a huge relief once he made that decision and just to enjoy what time he had.
Thinking of you both x
Family meeting went really well which is such a relief. My step son and I asked couple of questions about possible impacts of stopping chemo which were answered in common English. His oncologist said that chemo isn’t working for my husband and that he has placed note on his file that there is to no more chemo without consulting him. My husband also verbally said he doesn’t want any more chemo. His oncologist is happy to see him for ongoing appts which my husband wants to do as he is comfortable with him. Palliative care doctor also attended the family meeting which was great. She asked questions of his oncologist and senior nurse. She has taken him off some of his medications as they were giving him hallucinations and night tremors and is replacing them with others. She has also written into his chart medication that will help heal his mouth ulcers. Senior nurse advised she expects he could be in hospital for another week at this stage based on his mouth. Oncologist mentioned he is concerned about too early a discharge as he is still neutropenia, again. Within himself my husband is starting to get bit better as his humour is returning , so is his long term memory as he is remembering things from last weekend
Know I should feel happy but feel sick to base of my stomach and hardly slept last night. Part of me knows I should go to work but part of me wants to go and spend the day with my husband.
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