Feeling in limbo

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Hi everyone.
My elderly mum (79) was diagnosed with stage 4 recurrent lung cancer (adenocarcinoma) in November 2023 with liver and multiple bone metastases. She originally was diagnosed stage 3 in November 2020, had an upper right lobectomy January 2021 and completed 4 cycles of adjuvant chemotherapy.
This time we was told that she had 2 EGFR mutations (exon 18 and exon 20), the latter being very rare which the oncologist didn’t have much data on, we were told no chemotherapy as her baseline kidney function wasn’t great. She was offered osimiternib as a first line treatment. She was only on it a couple of weeks when she was admitted to hospital with a deranged kidney function, then restarted after coming home, after changes on her ECG on the 20th December they didn’t order any more. Then in the new year she had a trip to A&E as she was breathless, a chest X-ray showed changes but was given antibiotics but she was due to see the oncologist the next day. We were then told that nothing more could be done, the targeted treatment wasn’t helping, in fact it was making her worse and that she was being referred to the palliative care team. I asked the consultant for a time frame and she said she would expect 6 months. The consultant also filled in a respect form advising no cpr and no icu or hdu beds.
my mum has said she’s scared to be on her own so we’ve been trying to sort work out so that someone is with her (she lives with me and my family). But I feel in limbo, palliative care rang her today but I don’t think she was completely honest with them, saying she’s fine and not in pain, but I’ve come home tonight and she’s coughing a lot more (producing clear phlegm), she also says her stomach is bloated and seems in discomfort. She’s took 2 paras which I think has slightly helped. I dont have any numbers for palliative care, and I’m unsure who to call if she takes a turn for the worse (I would probably do 999) but I don’t think A&E is the appropriate place for her.
I work full time and I’m also my mums carer. I’m doing my best but I sometimes feel very overwhelmed. My eldest daughter (15) knows everything but my youngest (9) doesn’t know the latest news.
I just needed to get it off my chest, I take the dog for a walk and cry whilst walking round the block.

PTP 8 months ago

Hi,

Do you have specialist cancer nurses whom you can phone for initial advice? If so, please do that, discuss the overall situation with them, and see what they suggest.

More generally, you do obviously need a number to call when things go bad. I would have thought that the District Nursing team (available 24 hours a day) would be the initial escalation route - but of course you need a phone number for them in the first place!

Please post back with any progress you make. Certainly, you shouldn't be feeling like you're left on your own.

Good luck, and best wishes.

fallingleaves88 8 months ago

I'm so sorry to read about your situation. My dad has terminal cancer. Our GP has been great, she referred us to a rapid response team and palliative care, we've got their numbers and could call them when necessary. And in medical emergencies call 111 or 999. Maybe you can speak to the GP about it. Our palliative care team is great, they call me every week or fortnight to check up on my dad. My dad gave consent for doctors/nurses to call me, he's a bit fed up of handling medical calls. When he was first referred to the palliative care team, we had a discussion about end of life care eg hospice or stay home. That was an uncomfortable conversation! But at least we are prepared for any types of medical emergencies.

I remember our palliative care nurse and GP asked if we needed carers or someone to help out once in a while to give us a break. We're lucky to have all these local services, I know it varies between different councils.

I don't have children but I can relate to everything else you said. It's hard trying to keep it all together, working full time and then being a carer. Luckily my siblings help out. It's the emotional aspect that is the worse for me, seeing a loved one unwell and worrying. I don't have any advice to give, just wanted to say that you're not alone.

The MacMillian helpline are amazing, I called them several times for emotional support when my dad was first diagnosed. I know it's hard but take care of yourself, it's easy to burn yourself out with so much going on.

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