My husband has terminal small cell lung cancer thats spread to his bones . Diagnosed just over a yers ago .He was really well up to last week when he developed severe leg and pelvic pain. He rang acute oncology and was admitted as it was found he had dangerously low platelets. He has had transfusions but does not seem to be improving and has now low red blood cells. Yesterday i visited and he was just sleeping amd hadnt eaten. I spoke to the nurse who told me he was waiting another blood transfusion .
i have asked my husband what doctors have said and he said he doesnt know . He us isolated due to been a CPE carrier and nurses arnt telling me much. I work full time and visit every evening and weekends so I am not at the hospital when doctors do there rounds.
i am worried my husband is nearing end of life but no one is telling me anything and there has never been any palliative care .
I am told to take time for myself but how is this possible
Hi Angi66
I am sorry to hear that your husband's health has deteriorated in the last week and that he is now in hospital. I can understand that this is a worrying time and that you feel that you need an update on how he is. It can be difficult when you are working and are missing the times when the doctors are doing their rounds.
Often it can be that the nurses are focussed on the day to day care and giving the treatments eg; the transfusions and it can feel frustrating when you need answers and are not getting them.
I wonder if it is worth speaking to his nurse team and asking if one of the doctors could phone you with an update? Then this would give you a chance to write a list of questions and to go through them.
Do give the Macmillan Support Line a call if it would help to talk things through.
Jane
I am sorry you are going through this Angi66 I don’t have any direct experience to offer, but didn’t want your post to go unanswered. I was talking to a friend of mine who has just spent 10 days on a cardiac ward. He commented on how unjoined up it all seemed, how the nurses had no real knowledge of his situation and he had to wait for occasional visits from his consultant. It sounds like it’s a bit like this on your husband’s ward. I don’t know whether you know who your husband’s consultant is or if she/he would be willing to speak to you if you were to contact their secretary. I do remember managing to speak to the doctor caring for my father over the phone, when I lived 5 hours away. But that was in different times.
Caring for yourself is so difficult too, but really important. Just simple things like trying to eat properly and exercise. I hope you are able to learn more about what’s going on.
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