Stopped palliative chemo

I am so sorry to hear about your husband.  It must be so distressing for you to see him in so much discomfort. Is your GP able to help and refer him so he can be comfortable? Hospices provide great support and care not just end of life care so perhaps contact them to ask for advice.

It’s so hard to have to advocate on behalf of someone you love as well as being their carer! Take care of your own health too. X

I put in a self referral to our local hospice and he had a short stay which he found lonely, however they have been very helpful and referred him to the specialist palliative care team who we have met. 
  My main criticism is that given our diagnosis that palliative chemo was the only option, the district nurses should have been made aware of us sooner. We had to endure delays in appointments and scans only to be told he was “overlooked”.When I was concerned that he needed an intervention , our GP asked what was plan? We had never had one I had to ask for a DN visit 12 hours before he was admitted with Sepsis. I made contact with the hospice, nobody else suggested it. Because the DN’s were not aware of us, when he couldn’t walk unsupported I bought a walking frame. When he couldn’t walk upstairs to bed and was sleeping on the sofa, and we asked the hospital if they organise a hospital bed for him on discharge, the ward sister asked if he really needed it. Then I asked for bed rails , the night before they came he fell out of bed and had to wait for 10 hours on the floor for an ambulance team to get him back into bed in spite of me saying he was a severely malnourished vulnerable terminal case.

  To say I think we have not been supported well is an under statement . A friend of mine whose previously fit 80+ husband died through stage 4 bowel cancer, had a similar experience. When he died in hospital the staff started to put together a care plan.

To anyone else with a recent diagnosis , I would say, don’t be afraid to ask for more help, don’t wait for it to offered to you.

I’m so sorry to read this, sending hugs to you both xx

Thank you. I’m sorry for the rant️. 
District Nurses and community resource team have been great. I think the Oncolgy unit are struggling with demand and it’s a bit of a conveyor belt. 

You rant away, it’s only to be expected, I think you’re probably right with demand but it shouldn’t be that way. Pleased you have the district nurse to fall back on. Take care xx