Hi I’m wondering if anyone can help me, I am growing increasingly frustrated with the care my dad is receiving from the NHS and also from his Macmillan nurses. Before I start I completely understand the pressure that all NHS staff and nurses are under and I am not here to have a go at anyone I’m just hoping someone can help me. My dad has stage 4 cancer and has been told he only has months to live. He was told his cancer is rare and the type of cancer he has does not respond well to treatment unfortunately, however he decided to try the folfox chemotherapy after being advised by his consultant. After his first dose it completely knocked him for six and in his words he doesn’t want to spend the rest of his life in bed after also watching my mum his wife pass away after a long battle with cancer herself and saw the struggle she had with the various treatments. I was with him in September when we met with his consultant and she told us my dad would receive regular updates with a Macmillan nurse who would help him with any problems or questions that he had,unfortunately in his words he has said it’s been a waste of time. He has barely heard from anybody and when he does ask questions the response tends to be ring your GP. Im sure your all aware of how hard it is to speak to a GP these days. I was under the impression with the severity of his diagnosis he would be able to receive advice about any concerns he has from a Macmillan nurse or his consultant, which is also very difficult to speak to unfortunately. Does anybody out there also have any similar experiences and could possibly offer advice on how to receive better care for my dad and how to get regular contact with a Macmillan nurse.
Any help would be great.
Thank You
Hi Benny90 and welcome to the Online Community but so sorry to hear about the problems you are facing with the care of your dad but I do hope you will find lots of comfort and support from people who understand here on the Online Community.
The Community has many dedicated support groups and when it comes to the practical challenges of supporting someone you may benefit from joining our supportive Carers only and Supporting someone with incurable cancer groups where you will connect with others supporting family and friends
If you'd like to connect into this groups, you need to join the groups. First click on the Green links I have created above. Then click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."
You can then introduce yourself by putting up a new post by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so why not hit ‘Start a Discussion in New here, say hello’
You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
Always around if you need further help in navigating the community.
All the very best.
