Mum's poor prognosis was confirmed today at Christie's. The first question asked of her by the consultant was 'How are you feeling generally?' and she couldn't even answer that - just looked at me so lost it broke my heart ......
Told the 'curative' suggestion was absolutely out of the question .... even 'palliative' (less agressive chemo) in terms of trying to shrink the tumour was not appropriate. In fact - there was so much conflict with what had been suggested earlier on in the week at mum's own hospital I am starting to wonder have scans and results got mixed up? Then again - I am going full cycle from grieving to cynical to downright angry within any given five minutes ..... Of course, this came as no surprise ... I had thought the suggestion bizarre in the first place .... but at least we've had that confirmed by a specialist oncologist and I know I've left no stone unturned ...... small relief ......
We moved on to 'quality of life' and discussion about hospital discharge ..... I mentioned mum had had a PEG fitted ..... 'Big decision' was the response .... 'It was without consent,' was mine ... raised eyebrows ........ I conceded it was not an issue for Christie's .....
A family friend is discussing the matter with solicitors tomorrow on my behalf (not looking for compensation - nothing can compensate for what mum has gone through unecessarily this week - just making sure we take complaints forward in the most effective manner to try to prevent this happening again to anyone) ....... while I concentrate on securing the best palliative care I can for mum ......
Nursing staff back on ward this afternoon tried to get into discussion that the PEG would prolong mum's life (I sense the defence barriers are already going up!) - I can only see that it will prolong her distress and enforce a longer period of suffering from what will be a cruel and horrid end of life ....... (not that Alz wouldn't have been) .......
As far as mum is concerned, I know there is nothing more I can do ..... other than ensure best care and to spend as much time as I can with her for however long we have ......... but the last thing I owe her, when I can pick myself up off the floor and find the energy, is to make sure 'heads roll' for the unnecessary anguish and pain she has been put through .....
Thank you all for your support through this terrible time.
Karen, x
PS: I was alerted to this new GMC document which may help anyone, God forbid they are ever faced with a similar situation ......
http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance/Consent_guidance.pdf