.my husband is dying!

I'm so so sorry to hear this. Our story is similar. My Dad is terminally ill&has had little/no support from anyone. I honestly feel that because he's dying the NHS/Everyone thinks there's no point. Like your poor husband he is also skin&bone, so very very frail&his mobility is very poor. 

I really thought Macmillan nurses would be involved by now as he's now registered on their palliative care register, but we've not had anyone visit him or any help or support.  Always heard how amazing Macmillan are, but sadly we've not witnessed this. 

I'm so sorry you're going through this&although I'm unable to give any advice I just want you to know you're not alone in this.....

I hope you get the help&support you desperately need.

Take care. Xxx

It breaks my heart to read that you too are having to fight for support for your husband at a time when you should both just be spending precious time together. We had the same struggle with trying to get support for my dad. We did eventually get amazing compassionate and practical support from Marie Curie service so it might be worth asking your district nurse to refer you to them or just contact Marie Curie yourself to ask for support and assistance to access their service. We learned that the palliative care is managed by our GP and the district nurse. I’ve previously posted that neither the palliative care service were very good for us and like you we had weekly phone calls with the occasional home visit. When they did visit they would often call my dad by the wrong name!!!! I honestly can’t fault the support we had from Marie Curie so try and give them a call for advice. Without their support we wouldn’t have been able to care for my dad at home which was his wish. He has sadly passed away 3 weeks ago. Keep ringing the GP because it’s ultimately their responsibility to provide the palliative care you need for your husband or ask a friend or other family member to ring for you as I appreciate how upsetting it is to keep having to chase people. Thinking of you and sending love and strength at this awful time for you x

So sorry you are being treated so badly, l took my husband Pete to the hospital on many occasions when he was in pain and every time we  were sent home. This was terrifying as we knew how he was feeling was not right. He went into a hospice for 2 weeks so that they could try and control his pain. But they could not totally control it. Then from the hospice we had palliative care nurses come out and then we had district nurse come out. Then on the 4th October 2021 we went to see Pete`s oncologist, we told him that Pete often had to go to AE. We think that because my husband was a tanned colour they thought that he was putting his pain on. But whilst we was in with the oncologist he had one of his episodes .We asked the oncologist how long Pete had left he was very reluctant to say. But l explained that Pete had a lot going on in his head, he reluctantly said between 2 months to a year:( . Pete passed away 13 days later on the 17th October 2021 in a hospice but they still could not control his pain, he had a very painful passing which was heart breaking. But the care he had in the hospice was second to none, is there anyway that either of you can get in contact with your doctors, to try and see if this can be arranged?

I really do understand what you are going through it is as if the people that are suffering are lying and they do not matter. But l did get a lot of good advice from the Macmillan help line. My thoughts are with you. xx

I kept a diary on here through my dad’s illness. I got such a lot of good help on here through that journey. If it’s not too sad, you may find some things helpful, re the palliative care. Ask for help from your doctor. And go to MacMillan and ask if they can get you more help. Please scroll back to the start of my diary entries… I hope they might help. Sorry you are going through this. community.macmillan.org.uk/.../dad-dying-of-oesophageal-cancer