TheHodCarrier 9 years ago

Hi again anu10,

All I can do, is the rather pointless 'offering of sympathy'.

You and your loved-ones are in what can only be described as 'a truly horrible situation'.

The professionals are likely to say 'try to stay positive' but while that is probably good advice, I'm loath to give it because personally I'm grumpy and not at all good at 'staying positive'.

I'm really sorry, that despite all of this expert involvement, you think your mum is still in pain - but beyond asking the senior doctors and experts, I don't see what else anybody could do, in your situation.

And I would like to thank M ark for his rapid contribution.

Mummytotwo88 8 years ago

My father has been terminally ill for a number of years now. At first it wasnt so bad but gradually he's declined. He has diabeted and is now in end stage renal failure and only recently been diagnosed with calciphylaxia. This illness is very rare. Youve got more chance of winning lottery than getting this. The only way to treat it is with dialysis, it slows it down but sometimes dialysing jus doesnt work anymore. Basically my dad is now in a hospice. Theyve given him new pain meds (a high dose patch on his arm) today at the hosp he was kicking off because he was lucid, confused and hallucinating. Long story short, this carried on for a few hours and i chose to accompany him in the bariatric ambulance to the hospice. He likes the hospice cos he gets treat better but these new pain high dose pain med has really messed with him. The doctor said they would lower it but it was truly heartbreaking to watch and to know he was confused and lost in himself. I would not wish it on my worst enemy. I'm a single mother of 2 young boys and once theyre in bed, ive jus cried constantly. I'm so alone cos i literally only have family but they deal with this in their own way. I'm so terrified of losing my dad but i jus cant bear to see him suffer anymore. I dont believe in god but i prayed tonight and begged for the suffering to stop and let him be himself again. I think i said please over a hundred times. Life truly is unfair and cruel.

anu10 8 years ago

Hi...I've haven't been on line for a long time...unfortunately in October after all my praying etc I lost my mum on 5th October. She was so brave ...even the district nurses used to say..she wanted to live till the last day..mum wanted to be home and told me she didn't want to be in a hospice..so I spent the last year living with my parents.my hubby bless really supported me. The last 2 weeks were not nice to see..they did warn me that having brain mets is hard to handle but all I could think of we mums wishes..the nurses..macmillian..careers were brillant but cancer is one horrible disease. It's not nice to see your loved one like that But I can say the hospice and docs etc are amazing and so experienced they will make sure your dad comfortable. Some things are scary and I still remember. Spend as mum time as you can with your dad and keep telling him how much you love him..it's true seeing them.like this at times you pray pls god take them..also to add to this exactly 3 weeks after mum dad passed away in hospital. He wasn't with mum the 2 weeks before her death and also couldn't make the funeral. His bowel cancer treatment left a massive open wound on his bottom..he couldn't sit walk stand..he couldn't eat..the open wound leaked.smelt.

I used to run between the hospital and my mum at home..29th Oct dad got sepsis and passed away too..he wanted to be with my beautiful mum.. Even though they are together pain free and away from this horrible disease me and my sister are all alone... Now just trying to settle bk into life but it's hard...I will pray for you all xx

Mummytotwo88 8 years ago

I am truly sorry for your losses. My heart goes out to you.

Its one of those things you can try to explain to people how it feels but you can't cos words dont come close. I've been an emotional wreck past month and a half since hes been diagnosed. Calciphylaxia makes the veins and arteries calcify and blood can no longer go thru so the skin starts to go necrotic then eventually he'll pass from sepsis. It spreaded slowly but only recently irs gotten worse. He had it in his stomach and groin area at first but now they think its gone to his bottom. He was blocked for 2wks.

Today he seems a lot better jus a bit "drunk" (hes been singing and telling people he loves them) but nowhere near as bad as last night. The doctors admitted the pain patch on his arm was too high a dose so hes back to lower ones. He says hes not going back to the hospice and is going home (hes had to stay overnight due to low blood pressure).

I dont want to lose my dad, nobody does do they but i cannot bear tl see him suffer. Its so indignifying and heartbreaking. I was truly heartbroken last night after i went to see him. My sister knew how upset i was so found me a few links to talk to people in same situation, hence why i'm on here.

It's one of those things where you question everything, like for me, my angry side says that you wouldnt put an animal thru suffering so why a human being? But then my other side says everyone deserves a chance at life. I am really sorry for your losses. I hope theyve both found peace and so have you. Thank you for replying, it means a lot.