A year of mental turmoil

Hello, I didn't want to do this, but I feel I have nowhere else to turn. 

My mum got diagnosed with metastatic lung cancer in August last year, that spread to the breast, lymphnodes, spine and more recently, brain. She was late being diagnosed due to covid. She's had chemo and radiotherapy, and the tumours are apparently stable and not growing, however she is deteriorating in front of our eyes. 

The medical team have never once been straight with answers this whole time, and because I live in another town I never get to hear what they say, it's.always passed on so I'm never 100% sure if it's accurate. 

Mum recently got rushed back into hospital due to a very bad chest infection bordering on sepsis, and she's still there, before this she lost the ability to do things for herself, and lost control of her bladder too. It started as pain and spasms, then numbness in her extremeties, doctors put this down to low potassium and magnesium, which she's had before and supplements helped, whereas this time they haven't.

She is CONSTANTLY confused and dosy, she's suddenly starting to sleep all the time, and so deep she can't be woken, which is worrying in itself as usually she's not a great sleeper. 

She's stuck in hospital with no clear plan, her symptoms seem to have cleared up and she's had the antibiotics but still no word on being discharged. The doctors have however said that her body is now too weak for resuscitation.

Basically what I'm trying to get at here is I'm struggling with the unknown, is this the end nearing, it's so hard not knowing what the doctors think, and it also doesn't help that her family have turned against her and are saying she has Munchausen disease, clearly not!!

I just don't understand why were being told after a recent CT that her tumours haven't progressed in months (obviously brilliant news but hard to digest due to the circumstances) and yet she's not herself anymore, is the cancer beating her now? 

So much waffle I'm sorry but I just had to get it out.

  • Oh gosh - the family sound very uncaring! I am having a guess that just because the tumours are stable doesn't mean they aren't affecting your mum and unless sufferers have very regular scans - there may be other areas of cancer not detected. My sister in law's mother actually passed from complications caused by the cancer - too much calcium in her bloodstream and compression of the spinal cord so things can happen like a cascade effect in our bodies. This actually happened shen she was staying at my brother's for Christmas so had been quite well and stable. Her symptoms were got under control and she was due to come home with care in place but then deteriorated very suddenly and died in hospital. As a family member you should be able to ring the hospital and speak to the consultant to get answers directly? Are you sure the family are actually being honest with you? I know hospitals don't always get it right etc but it sounds as if the sepsis plus the other issues have knocked your mum for six and it could be that her body just isn't strong enough to recover - they usually try to discharge you as quickly as possible so there are likely concerns about discharge or them being unable to get a care plan in place yet. I can only advise you ring the hospital and demand answers. It may be that if they feel the end is near that a hospice would be more suitable? I think they usually only discuss DNR at end of life?

  • Thank you so much for your response, already you're helping things make more sense. 

    My family haven't bothered putting me down as a relative so I'm not sure if they'll speak to me, only my sister, my dad and my cousin! 

    My mum is saying she wants to die, which also makes me think the end is nearer, although my sister said if I called her more that'd stop her feeling that way apparently.... I don't know what I've done so wrong to not be fully involved in her care. They don't take my opinions into account, I want her in a hospice so she has the best care, but my sister is determined she will care for her, which she could, but she already has enough to deal with. 

    I can also remember being told she has a tumour on her spine, which my mum swears blind I'm lying, but yesterday they mentioned a tumour on the spine, which could be why she can't walk and they're going to double check all the scans, because she's definitely not scanned often!

    They are saying they're looking at getting her home next week, depending on how physio goes to get her up and about... They're going to try and get her off oxygen as the antibiotics have apparently done their job, even though her oxygen levels drop dangerously in the night! 

    I just don't know whats going on to be honest, but really appreciate your time and care, I think I'm just tired of grieving before she's even passed, tired of having to get on with life like nothings happening.

  • Hey, an update today, they will no longer offer any cancer treatment, so just palliative care from now on