Hi,

I am so sorry to read your post. The strain on family is so immense. Until you go through it yourself it's unimaginable to believe this pain and stress is possible on a daily basis. The conflict between feeling such overwhelming grief for yourself and your family then the guilt because it isn't you that is dying and the feeling that it must be worse for them. Trying to be a parent to a young child too (my daughter is 5) and trying to not be angry, short tempered or preoccupied layers extra guilt on top. You are not alone. 
 

My father has had colon cancer diagnosed in June 2020 and has had two major ops and one small one and was told he was cancer free after his last op 5 weeks ago. However he remained in hospital because he kept getting infections. Today my sister and I were called to the hospital and out of the blue were told the cancer had returned and nothing can be done and he will be sent home with palliative care. Not even he has been told this yet and I am in the huge dilemma of how much to tell him.

I don't know how or where to find carers from, the hospital is struggling to find us a package of care because they are busy, it's close to Christmas, brexit, and he is in a London hospital but from Brighton.. so different postcode. I am very worried about the responsibility of all you describe above without any help. 
 

dealing with this kind of scenario is so overwhelming. I really hope there is support during and after. 
 

Thank you for sharing your post. 

Hi,

I am so sorry to hear about your dad it is so hard to have the news that there is no longer anything they can do.  My dads care plan was set up by the hospice but whether the hospital are busy or not have a duty of care to sort something out for your dad they can't just send him home with no care plan.  Do you have McMillan involved if not they can help, and they will advise all the help available.  If your dad struggles with pain management in the future it may be worth seeing if he can go into the hospice for a short time.  It was a godsend for us and gave us a bit of time to recharge our batteries knowing he was well cared for.  Our own GP has been really good too coming out each week to see my dad.  When my dad was told there was nothing more they could do (around 18 months ago). We were honest but tried to be positive but you and your family will have to discuss it.  Now my dad is at the end of life we try to carry on as normal (as best we can) and keep strong in front of him, even though inside I am a complete wreck.  
I hope I have been a bit of help for you.  Don't be fobbed off.  Stand your ground.  As getting a care plan put into place will make your dads quality of life much better.

Take care.  I wish you, your family and your dad all the best ️.

sarahg1

Just a thought regarding hospital trying to setup a care plan. I was in a similar position with my husband in early October. Hospital struggled to find carers, so they didn't want to send him home. I saw it wasn't going to get resolved, so I hired a private live-in carer through "curam" to help us.

It gave us the flexibility to get through the days as we wanted and not having to fit in with a pre-arranged schedule that regulates when to pee, when to eat, when to sleep, when to wash etc.. Not cheap at £780 per week, but worth it: we had a few more weeks at home together before his death and he didn't die alone in a hospital environment. 

Thank you for your reply. How are things with you and your family? We told my father with the consultant and although we were all clear in the room, he has chosen to forget the negatives and focus on the positive of going home.
 

thanks for the reminder about Macmillan. I will call them and the gp in the morning. 
 

I am so sorry to hear about your dad, and I understand the pain you're living through. You're definitely not alone and words can't express how horrendous this journey is. My dad is currently in ICU with liver cancer and we were told today that he won't be having any more chemotherapy as the cancer is too advanced. So the countdown begins, and like you, we have no idea how long he has left. My mum is also distraught and I'm stepping in to look after her, my brother has 2 small kids so between us we are trying the best we can but you just can't avoid the feeling of helplessness and despair. We just want to take away their suffering and at the very least give them some quality of life for their final days. 

I would say if it's too difficult to cope with his care at home, don't be afraid to reach out for help from the hospice or chase that package of care. Ultimately, you want to make sure that the time you have left together is quality time and that your mum, your sister and yourself have adequate rest and focus your energies on making the time left count. We want to be able to give them everything and take the pain away, but unfortunately there's only so much we can do so get the help if you need it. 
 

Sending so much love to you and your family and remember, you are not alone. 
 

Hi everyone

unfortunately my dad lost his battle with cancer yesterday night.  In a way it was a blessing as terminal agitation and severe secretions had set in and the last few days was torture.  It was like he was choking on the secretions, he had fluid on his stomach so it blew up like a balloon and the agitation was horrendous to watch.  Me and my mum were both with him and at the end it was peaceful.  He fought for 12 years with this horrible disease like a trooper.  I wish you and your family's all the best.  Ask questions and don't be afraid to challenge the medical professionals to get the best care/medication for your loved ones.  My dad was the bravest person I know and now he is free with no pain ️ ️ ️

I am so sorry for your loss and sending you and your family deepest condolences. This disease truly is horrendous. I'm glad you could be by his side during his final hours ️

Hi 

My goes out to you and your family. I have stumbled across your post and it sounds so similar to the situation we are currently in in some respects. My darling dad has been battling prostate cancer for eight years. It's been a shadow over our heads for the whole time and dad has been the ultimate fighter, the bravest person I know, my hero. His cancer is now metastatic and widespread in his bones. In the summer he was due to have a treatment called Radium 223 which reduces bone pain and 'cements' the cancer from spreading. In June dad had to be admitted with a problem completely unrelated to his cancer which meant he couldnt have his radium. He had a huge abscess adjacent to his bowel which would have burst and he had to have emergency surgery. We were called to ICU as they believed he wouldnt survive the op - but he fought with every ounce of strength and he pulled through-he is a miracle. Six weeks on a ward followed, he also now has a stoma bag in situ as part of his bowel had to be removed, and then he was admitted to a rehab centre to learn how to walk due to being bed bound for so long, although he never did find the strength to walk god bless him, as what followed after that were two further hospital admissions due to post op complications (he also developed sepsis and survived). To cut what is such a long painful story short, my dad is now end of life. He literally has a few days left - if that and is under palliative team. He has been readmitted with fluid on his lungs. Turns out his cancer is so advanced it has now travelled to his plural space of his lungs and he has a constant build up of fluid. His bone metastases has also fractured his leg bone and hips which by all accounts speeds up the process. He is not strong enough to endure chemo or to have the fractures fixed. he is bed bound from the op and my heart is breaking. He has during four weeks out of the whole six month period, been bedbound at home, reliant on carers coming in twice a day and  like your mum, my  mum was and still is at rock bottom. It is hard to see and I too felt helpless. It wont be long and I will have to say goodbye to my wonderful darling dad. My heart is breaking but I just feel so numb. He is on max oxygen, talking is an effort but he says he is ready. Honestly hardest time of my life right now, my heart goes out to you and your family and every other patient/families battling this awful, deadly disease xxx

Hi, when my mother was terminally ill we had Marie curie nurses cone in for over night free. The district nurse has to make the call to get them in. My brother and I nursed my mother during the Day time doing a shift pattern to ease to the strain on us as it was very tiring with work commitments etc.