Hi
My mum who is amazing for 78 has been incredibly brave and strong to fight breast cancer twice before and now is facing a difficult cancer diagnoses again. We all feel as a family due to failings with her hospital she is facing this again left too long in pain as she was never monitored properly. It has been left to spread from her breast to her spine, the hospital refused to scan her or investigate if it was cancer from June until sept she was in agony constantly going to her gp and a snd e and we paid private to get the scans which we know meant a very late diagnoses .
it’s a long difficult journey of failings at this hospital or years of which we are going to report it to the CQC and beyond especially how she is being treated in hospital, the pandemic is not an excuse .
My question is you are outside a consulting room waiting to go in for tests results and to walk through that door to know your diagnoses and treatment .
Can anyone tell me what happened in that room or what did you see ie scans or test results or who did you see , if it was spinal cancer was a spinal consultant present with oncology.
just feel how my mums diagnoses and treatment has been handled last week isn’t safe or best practise or do we believe them , my mum is stage 4 breast cancer spread to the spine , treatable but not sure if it’s the best treatment due to what happened at the previous diagnoses pathway .
thank you as this is so difficult , we have reported this to pals but swept under the carpet can’t speak to her consultants or no contact details.
On top of this the hospital are trying to fast track her discharge , no consultation with her family . My mum is worried as she feels being forced to move and intensive physio, we don’t know if this is right. She has limited mobility from the waist down due to where the cancer has spread and we were told weeks ago her spine isn’t stable. We can’t manage her at home as so complex and they won’t allow her to go to a community hospital or try to apply for funding for ongoing care as it’s a life changing diagnoses .
it’s a mess.
Hi and I see its your first post on the Community so welcome. I am so sorry to hear about the challenges your mum and indeed the family have been dealing with.
There will be such a wide base of experiences and obviously I can only relate to my 22 years on my incurable cancer journey.
I have been dealing with 6 or is it 7 different medical areas so 6 or 7 consultants. From day one I made it clear that I wanted copies of all information and that happened. Most people dont want this information so I do wander if the medical professionals take this as the default?
I also made it clear that my wife had to have the same availability to information especially in circumstances when I was not well. This has happened a number of times over the most recent years. So for us, I feel that we get full disclosure and am confident that the best treatment has been put in place. Yes there has been bumps in the road as this does happen with the NHS unfortunately.
So from day one we have always received copies of test results including bloods, scans and biopsies, also copies of MDT treatment recommendations. We have seen actually scans and have a number of copies of before and after scans.
We have went into appointments where another specialist has been taken in to go through my next step in the treatment process. This all depends on how well your health trust has its dots joined up.
Your mum is 78 and has been through a lot so she may not be advocating well for herself and as to the way forward.
My mum died this time last year, she was an amazing independent 91 year old....... but she recognised that she needed help so I did have power of attorney and all medical issues had to be discussed with me as well as my mum and no decisions could be signed off on without me knowing and agreeing.
As for the specifics of any treatment your mum may go through do have a look at this list for our cancer specific groups.
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
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 to chat more or help you navigating the community.
All the very best ((hugs))
