My mum was diagnosed with terminal lung cancer almost 3 years ago. Last October all treatment stopped and we were told there was nothing further they could do. Since then we have had no support or medical follow up and we are feeling quite abandoned. I work fulltime but thankfully from home, but i have now turned into daughter, carer and often doctor.
My mum became quite ill a few weeks ago, but with noone to turn too we assumed it was maybe the cancer and choose to see how it went. She then had leg pain which thankfully led to a routine blood test which diagnosed lack of iron. Since being on iron shes made a great recovery. However the symtoms of low iron are similar to her cancer, so without the blood test for her leg this would of never been discovered.
She took initiative to ask GP to go onto pallative care pathway in hope things like low iron wouldnt go unnoticed again (or her uti or chest infection), howecer she was told this wasnt appropriate at this stage. She was told her main support is her cancer nurse who has never contacted her in a year, and only works mon-fri 9 to 4 which isnt the best (also the same nurse who told her not to get hopes up about living to her daughters wedding 2 years ago!).
Is pallative care not to give bestt quality of life? With noone checking basic things, how can she then have the best quality of life? It seems once chemotherapy stops there is no support, and this leaves carersfeeling quite helpless, especially just now when you dont want to involve hospital due to covid.
Does anyone else have better support? Where did you turn too? We dont require the emotional support as such but more someone who would know mymums case notes and be able to help from there (the GP prescribed iron tablets, despite my mum having bad stomach issues).
Hi Sho3442
By reading your post it seems that Mum has not had the support that she should have over the past 6 months and it is really important that you both get the correct help and advice, and if the cancer nurse allocated to your Mum is not compatible then there should be an alternative offer available to you, (this is my opinion)
I feel that to ensure you get the right support at this time, it may be an idea to Ask A Nurse, there is a bit of a delay, maybe 3 days in catching up with posts in that section, but they are the professionals and they will know how to obtain information for your local area and how to provide the best support for Mum.
I hope you think about messaging them and hope you and Mum get the support you need
Lowe'
Hi
So sorry to read your story though hear very much that it happens. There is a huge amount of misunderstanding about what palliative care might mean and you can see in this page from Marie Curie.
Your mum's primary care is still her GP and things should not be dismissed as a side effect of cancer - it there is a issue it needs looked at because just having cancer does not suddenly make us immune from all the other things that happen in our lives.
A really key message in that Marie Curie page too is support to family and friends. My new GP is wonderful because we know that if I get ill - and it is really too damn easy for that to happen - my wife's support net collapses - three patients rather than one. He has on record that if I ring the surgery and say I NEED an appointment there will always be one for me.
I was in tears in his surgery once after my own treatment plan had come crashing down around my ears - he was very sympathetic and said he would be happy to write to the hospital on my behalf but claimed "they ignore me pretty much the same as they ignore you". That was just the message I needed to hear - and I contacted PALS. The next day the hospital was on the phone saying "what can we do" rather than telling me what they were not going to do.
Sometimes medics are their own worst enemy - but then Janice has done it to me in the past, things like "well I am never going to do this again because of my cancer".
<<hugs>>
Steve
Hi
Where the nurses able to help?
How are things?
Lowe'
