How long to wait for treatment?

Hello, my husband has been in hospital for 5 weeks. 5 weeks ago he was informed he had metastised spinal cord compression that had caused his paralysis. T9 and L4. He had radiotherapy in a different hospital 2 days later and was on steriods. They were doing a biopsy to locate primary cancer. Did it but the screwed up and didn't read the notes about weaning him off steriods so when results from biopsy came they said the steriods had affected it. He was then taken off steriods and now waiting for new biopsy. As he is now off steriods he is getting more pain in spine again. He is under hematology team as they think it's blood cancer so I called and asked what is the plan as there seems to be no plan. They are now going to do a PET SCAN some time. He was told by a doctor 4 weeks ago he was terminal, did he have his Will in place, cancer to aggressive and advanced  and they will not resuscitate if he goes in cardiac arrest. Buy that's it. No macmillian nurse been to see him, people on the ward he is on just want him to do physio. Some tell him you will be going home soon, others saying you will be here for a few months NOBODY HAS SAT US DOWN AND EXPLAINED HOW LONG HE HAS OR WHAT THE PLAN IS. David is getting very down as he feels like they ate just leaving him. Why has no one sat us down. Sorry about the rant but I am at my wits end worrying about david. Deep down I just have this awful feeling they are trying to get him out of the bed and home so he can die BUT he doesn't want to die at home.

  • Welcome to the forum Clairebear65 although I'm very sorry to hear what you and your husband are going through.

    This must be incredibly upsetting, and frustrating, but I really do hope that someone has now spoken to you both and explained what is going on since you made this post.

    If that isn't the case, then it may be worth getting in touch with PALS. They are a patient advice and liaison service that offer free confidential information and advice to anyone who has a concern or would like to raise a complaint about the service and care they are receiving from the NHS. You can find further information about how to make a complaint on the NHS website but hopefully some of our members who have been in this position themselves or with their loved ones will be along soon to share their experiences and advice.

    If you'd like to talk things through with one of our cancer nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m  - 5p.m. They're very insightful and will do all they can to answer your questions and help you through this very difficult time.

    We're thinking of you Clairebear65 and will have our fingers crossed you're able to get some answers soon.

    Best wishes to you both,

    Steph, Cancer Chat Moderator