OK, so I have initiated palliative care for my partner who has continued to refuse support from palliative care team even during the first meeting for assessment. Well, in a way I don't blame him. He's more active (not staying in bed the whole time) in the past few days even though his speech can be good sometimes and bad sometimes. First impression with the palliative care nurse -- not good! This person was late for 45 minutes! We received a call at 8:45 a.m. asking when the appointment is and so I told her "Now, right now. 8:45 a.m.". The response I received was "oops, I'm running a bit late, will be there shortly." The meeting was .... , not sure exactly what I get out of it apart from a 24 hours number that I can call if there is any problem. The folder I receive has something to do with bowel movement record, from my poor memory. mmmmm we aren't at that stage yet, I think, even though we had a few accidents. Then, we had a meeting with the oncologist who made us wait for 1:30 hr. I asked if we could see him at another hospital where we used to see him and we could see him at 5 p.m. with very little wait time which suits me perfectly. He asked "is this appointment time inconvenient for you?". Errr.. hello... 11 a.m.!? If you are on time, it's probably alright but you keep us wait every time. I can't go to work in the morning and come back for this appointment. It doesn't make sense to go to work afterwards neither. After all the waiting which made the whole thing finished nearly 1 p.m., by the time I get to work it's nearly time to pack up and go home. What world are these people living in? One thing I note about the oncologist at this appointment. He seemed to be quite happy. I think the fact that he could see my partner in a better shape than 3 weeks ago made him happy and optimistic. But... shouldn't he be optimistic the whole time? If he's not going to be optimistic, he shouldn't he make us feel worse by looking so unhappy and pessimistic when he saw my partner wasn't well a few weeks ago. My partner wasn't happy to see his doctor all doomy and gloomy when he wasn't well. He felt everyone had written him off. It's just not right. He's fighting this disease and he needs to see that his doctor supports him in this battle. I hope he doesn't think I fail him by initiating the palliative care.
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It's often difficult with medical appointments . Sometimes they do have good reasons for being late but we can never be sure when this is the case unless they tell us . I hope palliative care works out better for your husband despite the bad start . I saw the human side of a doctor when he heard something I said about doctors . They are as different in their manner as are any group of individuals .Perhaps the doctor was really feeling for your husband when he appeared pessimistic and sad . It's good to see that your husband is having good days ,hopefully most days are good .
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Hi Peanutz Palliate simply means: Relieving or soothing the symptoms of a disease or disorder without effecting a cure. There is no sense of failure in that, but something necessary for quality of life no matter what the problem or prognosis. When we sit waiting ages for an appointment, I do hope it is for a worthwhile reason. It may be a case of too few doctors; too many patients, some of whom take longer than others to see. I know at times I have been allocated 15 minutes and take longer, so the next person is waiting because of me. That sort of thing also has a cumulative effect. It does make it hard, though. Peace, strength and comfort to you, Pamela
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Hi Peanutz, hi SILLY and Pamela It all sounds so confusing and frightening and stressful and plain overwhelming... I feel for you. There's nothing I can do or say to take anything away.. We can only hear, listen and read your posts. I think it's accurate to say too that there is a collective nod that goes on here; many of us have been through the chaotic horror and would take away the pain from another person if only we could. Counselling can really help to slow things down and provide support through the fury (the "What world are these people in?"), but, understandably, you probably cannot imagine having time or headspace to fit that in right now, your focus is on the "doing", the practical. Think it's called survival mode. Keep going, you have support here. Kind regards, Sarah
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