Share experiences and thoughts

Hi B_eol_experiences welcome to the forum and sorry to hear about what has happened for you and how that has left you feeling.

I wonder if you might like to give the Macmillan Line a call as they have lots of different opportunities for people to help make a difference and in many different ways so it may be worth having a chat and seeing what might be available.  I also know that this is an area that Macmillan has undertaken a lot of research into so again may be able to help. 08088080000.

Hi B_eol,

Sorry to read about your dad and hope you are managing to cope although I'm sure the feeling is still so raw at this time.

I also recently lost my dad to bowel cancer back in February - There were issues in his care and treatment that sometimes did not make sense but it is hard to criticise experts in their field when I for one had little to idea what they were talking about.

I can somewhat forgive the medical mistakes that were made because his cancer was so aggressive and I think there was little they could do to change or prolong the outcome we suffered. But as he was released from hospital to us at home for end of life care there was something be desired from the help we received. Yes, it was January and Covid was rampant, and I will never criticise the nurses for all their help and more for the 15 months he battled, they were and are fantastic. But, when we had him at home we did not have much communication from palliative care as to how to help him - little things like moving him comfortably on the bed with a pulling sheet as he lost the ability to move himself - we weren't even provided with bed sheets etc. when the hospital bed arrived - a physio was not offered to us until my mum phoned them because she couldn't help him with sores and the palliative care nurse wouldn't visit us due to covid and as she was replaced with another, that person did visit us (masks etc.) so it did feel like excuses were made -- I'm sure there is more my mum would tell me but I've honestly tried to forget those few weeks he was home because it was hard to watch his decline; there was a sense between us that they did not expect my dad to last the 3 weeks he did but rather days and he was rushed home for end of life care that him and my mum desperately wanted rather than being in hospital/hospice care - so I don't think a proper and considered care plan was put in place for him specifically, or perhaps they don't have standardised care plans (as I imagine there's a lot of unique circumstances).

Like I say, I don't criticise individuals and certainly not heroic nurses who came everyday, and more when needed by us - or even specialist doctors who did all they could to help him but I always felt there was a blockage between us and middle management who slowed the process down a lot, and perhaps that's a different debate within the NHS right now, as I said I'm no expert in this so don't want to be too critical, plus at the height of the third-wave I understand there was a lot of issues within the hospitals that perhaps caused distractions to treatments of individuals.

Finally, one thing we found with my dad who had a stoma bag was mixed communications. He had to drink a lot to avoid dehydration when on chemo, but also if he drank lots it messed with his stoma causing leakages which stressed him out greatly. He was to eat whatever he could and would, and then other times it was not to eat too much again because of the stoma - Dieticians, chemo units and stoma doctors were sometimes saying three opposing things to him so he was damned if he did or didn't and it wasn't until he became frustrated by this on one stay in hospital that they communicated as a team and came up with a unified plan for his diet - small things like this which made a huge difference to him was sometimes missing unless my dad, or mum on his behalf, insisted upon it.

This makes his treatment sound awful so I would like to say, he was phoned weekly if not more by the chemotherapy unit in his hospital, and had semi-regular conversations with the doctor on his case and I could tell there was genuine care from all parties for his well-being emotionally and physically and I have no doubt that even in the mistakes that were made, some big some small, that it was all done with the intent to prolong if not save his life.

I hope this helps and sorry it is very long and a bit bumbly!

Please stay well and strong - I am struggling too with the loss of my dad but I know that for both of us that time will heal our wounds and even with the scars that we'll carry life will get better.