After a traumatic few weeks of mam's decline followed by an awful 2 week stay in hospital... My mother sadly passed away on 9th April with me and my sister at her side.
I haven't got the strength to go into everything right now but I'm sure I will at some point. My sister and I were at the hospital 24/7 advocating for my mother and as hard as it was I wouldn't change anything... We loved her and supported her right to the end and I truly think that it allowed my mother to know she was at peace and she let go as the sun rose at 5:55am, we sat with her all night after the drs confirmed she was in the dieing stage.
This is the worst pain of my life... I can't comprehend it, I was so close to my mother and I feel a huge part of me has died with her.
I was her primary carer, I managed everything from appointments to medications to phonecalls with the Dr/surgery and then at the end my sister and I at the hospital advocated for her... I appreciate everything the NHS do but unfortunately and I feel I won't be alone here, the lack of communication and roo many drs involved meant that the entire hospital experience was just horrendous looking back... You don't see it at the time when you're in survival mode!
Mam had secondary breast cancer that spread to her bones. Whilst in hospital during a CT Scan they had spotted another mass which caused a gastro obstruction which was highly likely cancer... This must've been aggressive as she has a CT scan 3 weeks proper and everything looked stable as confirmed my her oncologist... She also had alot of fluid on her left lung, initially they drained 900ml and a week later a further 500ml as it had regenerated, her lung has also collapsed... The cancer was highly likely causing this and potentially in that area ... And the afternoon before she passed the nurse let slip that palliative care drs believe that it metastasised to her brain (no conversation was had with us to discuss this!).
A week before mam was admitted she just about made it to the oncologist who said she was pleased with how the cancer was looking, mam asked why she was so unwell and she said she didn't know and she needs mam to help her help her... That will haunt me forever, we thought mam wasn't trying hard enough to eat... She was so weak and so sick bless her ...so I stayed with her for a fortnight after that to make sure she was taking her meds and trying to eat.. it was at that appointment I broke down for the first time, I said I don't think mam will be physically strong enough to make it back next week for her Dinosumab injection, can she have it today? ... She wheeled her chair right up to me and looked me in the eye and said "she'll be able to make it*"... Fast forward to the following week, mam is vomitting profusely, dark liquid that got darker... The hospice came and said if she didn't go to hospital now we'd lose her... She never made the bone jab appointment and was too poorly in hospital... It was all so fast.
They couldn't perform biopsy on the mass they found due to where it was and the oncologist wrote to the drs and said mam is now to weak for chemo & biopsy isn't viable as this is really common (she was still on letrozol but was taken off the Ribociclib a month or so prior) it just all happened so fast.
My mother passed away 8 months after her diagnosis and 9 months after my step dad who also died of very aggressive liver/lung cancer which ended up being through his entire body... His ending was filled with agitation and not peaceful which will haunt me forever... 9 months later my mother passed and thankfully whilst the lead up was awful she was so strong, took everything in her stride even though she was fed upnshe went peacefully.
She was 78 but she was a young 78, otherwise fit as a fiddle and strong as an ox even when she was weak her determination to dig deep was so admirable. She always did her make up and her wig even on what would've been her last morning alive. After she passed my sister and I got her make up bag and touched up her face, took one or two cuttings of her hair for lockets for us and our little girls for when they're older and adjusted her wig so she was fabulous to meet my step dad in the afterlife
I'm completely traumatised, bereft and to be honest I can't find the words to even come close to how broken I am... When the time comes in the next year we will be writing a detailed complaint about the care received which has already been discussed with the medical examiner... We knew mam would've succumbed to the cancer, she was stage 4 incurable and developed complications however, her experience in hospital could've been better and as a family could've been better because the lack of communication and us having to (respectfully and professional) get answers and actions from the drs was exhausting!!! I'm sure we're not the only ones who experienced that.
The hospice were brilliant and they've also offered us family support which we will look at in the coming weeks
I just can't believe it.
