Hi,
I’m just looking for anyone else who may have experienced similar. My mum is currently dying from recurrent ovarian cancer. It has been an absolute awful 2 weeks. A bit of background: she was diagnosed with stage 1C ovarian cancer in Jan 2018, had full hysterectomy, oophorectomy etc around Mar 2018, suffered with complications from having chemo after this such as a PE and spontaneous arterial bleed, so couldn’t complete all chemo rounds. The cancer seemed to recur in Jan 20 when her CA125 levels went up. Had a scan that March and told she had ‘slow growing recurrence’ in her abdomen. Put on chemo again, but had difficulties as it made her unwell and she had a couple of falls, so oncologist decided to stop it. She wasn’t even put on the correct chemo, should have been both carboplatin and paclitaxel but I think they didn’t give her paclitaxel due to her age, she’s 76. From June last year she was in and out of hospital due to ascites building up. Came home for a month in Nov, then into hospice in Dec, then back home Jan this year. Thoughout all of this, she seems to have done much better than doctors kept predicting. She was told she has a couple of weeks at end of Nov.
Fast forward to now, she stopped eating and drinking 2 weeks ago, not because she wanted to but because she was unable to swallow. For the first few days, she was desperately thirsty and all I could do was swab her mouth due to being told she could aspirate the liquid, which I understand. I begged them to give her a drip to help, but they wouldn't. She has been communicating with me with eye movements, and I know when she’s been in discomfort etc. She was put on a syringe driver a few days before she stopped eating due to having bad delirium, where she was shouting and lashing out at us. This seemed to help stop it. Anyway, for the past 2 weeks, I’ve lost count of the amount of times I’ve been told ‘Oh, not long now’, and ‘She’s probably going to die today’. This has been horrible. She’s been through the rattling breathing stage, which seemed to actually clear, but there were times she was waking up in great distress as she couldn't clear the mucus and was struggling for breath, fright etched on her face. It has also taken several attempts to get her pain under control as a couple of days last week she was shaking in agony. Just as an indicator, the drugs she is on now are 95mg morphine, 50mg midazolam, 120mg buscopan, and 50mg levomapromazine, as well as 75mg fentanyl patches. This isn't including 'top up' doses she was having for breakthrough pain. She is also approx 7 stone, if that. She’s literally not eaten for 2 weeks or drank. We have been keeping giving her mouth care. Throughout all of this, I know that she is ‘aware’ of what’s going on, and the distress she’s been in. It’s now 3 days that she has barely responded, but she always has one of her eyes half open. This has been traumatic for me as I never expected her to suffer like this and I’m angry how she has endured pain at end of life, when I thought it might be more peaceful, and the palliative team could stop this. Only one palliative doctor came out to see her when setting up the syringe driver originally, but no one since. Only carers and nurses, who have all said they are flabbergasted by how she is fighting, although I believe she has a high drug tolerance due to being on antidepressants for about 40+years. She wouldn’t accept the fact that she would die and wanted to live to be with me. In my mind, when you read things from specialists about how a dying person isn’t aware of certain things or in distress, this isn’t close to my experience. My mum would never have knowingly wanted to go through this when she wanted to come home, and I had no idea this is what would happen.
Apologies for the long post, but thanks for reading.
Hayley
