Hi All,
I posted a few weeks back regarding my mum's lung cancer but sadly I think things are taking a turn and any advice would be amazing.
Since January this year mum had been complaining of a bad cough (which when I heard it, it sounded awful!) and shortness of breath. For month is was treated with late on-set asthma with apparently clear x-ray. After 6 month and 17 GP visits, mum managed to get a private scan that showed advanced lung cancer. Within 6 weeks a diagnosis of stage 4 squamous cell carcinoma lung cancer with no METs but impacts to the lymph notes was given (T4N3M0). Mum had one round of chemo (September 2023) but that's when things took a turn. Since the chemo she has had two infections, a pleural effusion, and covid. She bounced back from all of these and was ready for chemo round number 2 when an ambulance had to be called as she had server trouble breathing and oxygen stats of 88%. After being told for 3 days it was a pleural effusion that needed draining, 'a specialist' reviewed the scans and identified no fluid was present at all and the entire lung had simply collapsed. Due to my mums tumour being so close to her heart, and with the continuous infections, they have deemed re-inflating the lung as 'unsuitable' as it would not add any meaningful time to mums life.
The advice I am looking for is:
1. After the number of things missed do we settle for this opinion or do we fight?
2. If we do accept the opinion how long may my mum have left (we have had one consultant saying days and the other saying months)? Currently her O2 is up to 94% but she is having trouble moving freely around the house now.
3. How can I look at / who do I contact to get things changed within the NHS system so no-one else has to go through the unnecessary pain my mum went though which wouldn't have been caused to the extent it had if her scan was reviewed more clearly in the first place.
Hi Em2023 I am really sorry to hear about your mum and what she is going through. Having lost my mum to ovarian cancer, I know what it is like to watch a loved one go through cancer treatment. I will try and answer your 3 questions, but remember this is only my own opinion and what I would do.
1. When it was my mum, we fought for treatments, until she said enough, she couldn’t cope with anymore.
2. Although this is the question you really want answering the most, it is an impossible one to answer. That is why you have 2 different time scale from the the professionals that really should know. It really is a how long is a piece of string question.
3. if you feel let down by the NHS there is a complaints procedure that you can carry out. You contact PALS and your local hospital will have an office for this. I will attach a link below that explains it all to you with a link to find your local office.
pals-patient-advice-and-liaison-service/
I hope this helps.
