I lost my Mum to cancer on 1st Feb 2025. When she was diagnosed, she was told it was terminal (max 12 months), but given the option of chemo to try and give her an extra 6 months. She was determined that she wanted to enjoy what time she had left without the constant hospital visits. At the time, I completely agreed with her choice and said I’d feel the same way. Weirdly, she said her care team were very much trying to convince her to go with chemo. It wasn’t until after she passed that I learned that ‘terminal’ wasn’t guaranteed - there was a chance, however slim - that the doctors were wrong and she could have gone into remission. Now I’m stuck torturing myself with the thought: What if she’d chosen to fight it? Would she still be here to see her two grandchildren grow up?
Not sure what I’m really looking for… Perhaps someone with a similar experience? Maybe just putting thoughts down so I can stop torturing myself. I miss her so much.
I’m sorry about your mum, @Moonflight. Sadly, many of our members have lost their mums and will understand some of what you’re going through.
There was a recent conversation about the kind of feelings you’re describing. I just wanted to share it with you in case it gave you a little comfort to know you’re not alone.
I’m so sorry about your loss. I lost my mum yesterday and she went over a period of 6 weeks. She was told it was terminal with three months after about a week. As there were so many different doctors and not a ‘care team’ in place they were all telling her treatment is too dangerous. They dangled ‘if you get home you can get treated as an outpatient’. Then a number of doctors went in and told her no point. The way she felt (as the doctors only went on when we weren’t there) was picked apart. She resigned herself to dying and chose to die at home. She was essentially nil by mouth by choice. When we finally got her home, there was nothing in place apart from oxygen machine which we had to organise and her medication.
She wasn’t able to get off the couch so myself and auntie had to routinely be with her monitoring her and taking her the toilet. After about 5 days of struggling at home, 3 separate ‘care teams’ ‘kicked into gear’ and came at random times to my mums introducing themselves, telling her and us that they can’t stay over night. One team was for washing and cooking and observations but couldn’t stay with her without one of us; the other team said they were there to do the same in the mornings and the last one never got to say what they did as she passed the next day. Needless to say it was very confusing, stressful and unorganised and mum simply didn’t have the fight left as she was so malnourished by the end.
My big what if is simple; she went into the hospital essentially with no appetite. She and I had both asked for her to be given an IV to ‘feed and give nutrients’. They just disregarded that and settled for meal replacements which she hardly touched and ordering from a picky eater menu which she said was too disgusting to eat.
If she had of been able to have nourishment, she wouldn’t have depleted as much and been home more able.
I’m still getting calls for appointments for treatment (and she’s passed). The disorganisation she faced has dragged out her pain, created confusion and ultimately the beuracracy aided her demise. At her peak in hospital she wasn’t on oxygen and could walk around her room, why didn’t they start chemo then?
I feel your pain and frustration, I’m still finding myself looking for what if’s as every day I was researching vitamins, methods of wellness etc. Then I realise, she’s gone and I’m confused at that being reality.
I don’t think I’ll ever lose the gulf that’s opened up for me.
The what ifs are so hard. My mum had been unwell for a long time but always managed to pull through. She declined suddenly over the summer and I’m full of whys and what ifs.
She stopped eating and I also wanted her to be taken into hospital to get nourishment into her but the hospital didn’t do that and left her at home to not eat. I know she wanted to be at home but I wonder if they could have built her strength up for a while in hospital. There was no support at home for my dad to care for her and by the time it did finally come it was too late and she was too weak.
I also wonder how much was brought on by the treatment they’d started. Was it side effects from that which led to the sudden decline. Macmillan have said their nurses can help talk through some of the decisions made to put my mind at rest. The problem is, we’ll never know for sure. No one can tell me that a different outcome couldn’t have happened if something else was done.
But we are where we are and there’s nothing that can be done about that. However much we wonder what if and wish for other outcomes. It doesn’t feel like it’s happened to me but it has. I am going to have to somehow try to accept it and get used to it.
The organisation from the hospital and the logistics is what let us down. The idea of coming home was never the reality and stepping back from it, my mum was on a steep decline and should not have been discharged.
It seems that when someone is in palliative care and wants to go home, the hospital wash their hands of you. All of the nurses and ‘care package’ should have been in place before she left, not turning up a week later in different groups. I miss her so much.
Logically, I know you’re right @s.b.2025 - we’ll never know what would have happened had things been done differently. It just seems cruel that our minds have to think this way, rather than just accept it can’t be changed.
From your replies, I’m guessing your Mums were also battling cancer. I agree the hardest part was the reaction of the medical staff. The seeming ‘washing of hands’ when a patient doesn’t choose chemo. Again, logically, what is there that they can do besides make them ‘comfortable’? My Dad questioned if one of nurses had ‘accidentally’ OD’d Mum’s pain meds… I asked him if it really mattered, given how much she was suffering at the end. There was no coming back from it. She also stopped eating, and what good would giving her intravenous nourishment serve besides feeding the cancer for longer? Our minds seem to try and find some hope to cling onto even when there isn’t any.
The only thing I can say I’m thankful for is that cancer gave me a chance to spend time with my Mum and say a proper goodbye - something that so many people are cruelly denied.
Yes cancer too. My mum went through every treatment possible and she lived beyond the expected time for the illness. I don’t know what would have happened if she hadn’t put herself through all that but I am forever grateful that she did and saw her grandchildren through a lot of their childhood.
Interesting what you said about food feeding the cancer. In my mind I’d hoped it would give her strength to fight it. At the end I knew she was declining but I still didn’t feel like it was imminent so I didn’t really get a goodbye.
I read something interesting from a grief counsellor that said with in most cases, doing things differently may have changed the process but would not have prevented the death. I guess that’s true. You can’t change what inevitably will happen but just how you get there. My mum died at home peacefully and it could have been a much more traumatic death. Maybe by doing some of my what ifs it would have been. Who knows.
I think there will always be things we wish were different (aside obviously from the outcome) but we have to also look for some positives in how it wasn’t.
