Hi all,
im so glad to have found this space and thank you so much for all that you each contribute.
I wish I could say I’m coming in with a positive story. However my mum is currently at home in a hospital bed under palliative care.
she called us in July and said she had all of the markers for bowel cancer. After months of tests and worry… we saw her instantly lose her appetite and drop stones of weight… eventually she was told it was a large tumour in her colon with lesions on her liver. Her words to us were that this was totally curable and they weren’t concerned with her liver.
treatment plan was one round of chemo to shrink the tumour and then surgery.
she has only ever managed one session of chemo due to how weak she is. She’s been on steroids for most of the past 6 months.
in early January she needed a blood transfusion. A couple of weeks later she began having excruciating pain in her groin. She was rushed to hospital where they drained an abscess and then remained in for over two weeks.
Prior to her hospital stay she wouldn’t let any of us (myself and two younger brother) ask any questions or offer any support. She went to appointments on her own and delivered snippets of information as and when so I really don’t know many of the details other than what I have shared.
her husband called me to say that her oncologist had “pulled sole strings” to arrange a hospital bed to be delivered I home and three care visits per day so that she could go home. She kept saying she couldn’t recover in hospital.
She came home a week ago. I was there to welcome her and made her room as lovely as I could. She was so happy to be home and kept saying how comfy the bed was (she’s entirely bed bound and can’t readjust her own position due to how weak she is).
Her husband asked me to look through the medicine bag that came home with her. I laid it all out and then started reading the instructions. That’s when I found her discharge summary.
DVT, fractured fibula, fractured metatarsal, metastatic bowel cancer with liver mets. Sepsis.
The note read: CT scan showed progression of cancer. Discussed with (my mum) & husband and agreed discharge to home for palliative care. No further treatment.
This was such a shock despite being able to see how unwell she clearly was. Now even a week later my brothers and I still don’t have a clear picture on her cancer situation, whether it ever actually was treatable in the first place and now the wound from her abscess drain is severely infected and the hospice nurse called me last night to prepare me that if the antibiotics don’t work they will want to discuss management of symptoms.
o asked mums husband to ask the oncology team to xall Me. He later called and said they had called him and without a signed consent (which mum isn’t fit for) they can’t speak to me. They then went on to tell him that they will bring her in in 2-3 weeks and plan for chemo to Improve her quality of life and extend it “drastically”. Which just sounds ludicrous to me when she hasn’t yet been fot enough for more than one session of chemo and that’s why we’re in this situation. It felt like they gave him false hope. They also said they will send in a physio within the next 7 days to start getting her back on her feet - she’s in bed with sepsis and can’t even hold her own head up.
This is for sure the hardest joirney of my life. And while of course she’s my mum…. It’s been made all the harder by the complete lack of information she was willing to share. Now she wants me to take the reins because her husband only hears what he wants to hear - and I can’t support her as I don’t have written consent.
Is any of what I’ve shared above remotely typical? Her chances of surviving this infection are slim. And… her and her husband are oblivious to the outcome we appear to be rapidly approaching. I know that hope is helpful and I don’t want to make it scarier or more painful, but I feel like I’m going crazy with the circles we are spinning in.
All I can do is focus on this infection and if she recovers from that then start to try to piece it together beyond that point. The nurse asked mum if she was to get any more poorly would she want to be taken back to hospital and she said “No”.
I realise this is a long long read so thank you if you got this far and I’ve place a lot of trust in auto correct as the text is so tiny I can barely see it as I type.
Hi fbd79
Don’t feel cautious about posting anything this is a place to talk freely without upsetting loved ones and it’s where you can get support from others
I read that you feel it’s surreal and that you can’t believe that you can write the words. That struck a chord in me. I was in a similar place to you years ago when my son was in a life threatening/ changing RTA. It was horrific plus I had to keep all my family updated
I was on autopilot. My friends said they couldn’t believe I was functioning the way I did
Well I had to and as long as he was around I’d be right there
Dark days, six months later I had him home and he was on a wheelchair it was getting close to his birthday and I broke down in floods of tears. I remember my hubby saying what’s the tears about but I couldn’t stop.
Sending you a hug xxxxx
Ann
Hi all.
uodate here - it’s my mums final few hours of life 
im sat with her and just in disbelief at how we got here.
so grateful for your replies here, for the local hospice and that she’s at home with us beside her xxx
