Hi all, good afternoon
I have joined today and thought I would introduce my self and tell you a bit about why I am here. A little bit about me - I am 27 and married with my own home and have a dog, parrot, 6 bunnies and a stray cat in my shed!! (As well a 40 odd chickens at my husbands allotment!!) I'm really friendly, love meeting new people and work at a school as a PSA, Learning Mentor and Attendance Officer.
My dad has ESLC and I have recently had to voice my displeasure with the consultant at the hospital we attend to find out what support is available to my mother, father and family as we have been basically told my dad is going to die and left to get on with it.
I have spent a few days now trying to find some forums for help and discussion that would benefit not only my knowledge on this horrific illness but also provide a bit of comfort to my mother so that she is able to speak to others in the same boat.
My dads cirrhosis has been caused by hospital negligence from keeping him on methotrexate tablets for severe psoriasis when they were meant to have discharged him. So now we have gone through all avenues to see what the options are but unfortunately he is ineligible for transplant as they do not expect him to survive the operation (he is 67) and also feel that if he did survive it, it would dramatically affect his quality of life. He developed ascites from July 2013 but was only drained for the first time in February last year. Up until July this was every 3/4 week but then from July to the end of October was every week and a half. At the most they took 21 litres from him. He doesn't appear to have ascites anymore and hasn't been drained since the end of October. When we saw the consultant at the end of last month she said she didn't believe there to be fluid on his stomach but his stomach has started swelling again. This leads me to my next bit - at the same appointment the consultant said that she was going to request that no more liver scans would be offered to my dad as they could show liver cancer and if so there is nothing they can do so it seems pointless. I feel like there is something they are not telling us, like he may have it already? I know that swollen stomach is a symptom.
The same consultant requested that we come back for our next appointment in 6 month...initially they wanted to discharge him and refer him back to our local hospital but I refused and said I wasn't happy about that as they were the ones who had put him in this position in the first place. The consultant agreed to keep him where is but would only offer 3 monthly appointments. (My argument was in 6 months time - given their diagnosis - he would either be dead or on his way out so what good is that??)
I feel like they are not bothered now there is nothing they can do and they have thrown us to sea without a life jacket. It has been so hard to try and get some support and also find it ourselves.
I moved out from my parents last July (only up the road) but as I work full time I help when I can so my dad's care is solely down to my mum. On good days this is manageable on bad days I can see her struggle, she comes to mine every so often in tears out of the way and I did take her on a spa day last week to give her a break. My dad does have HE now and this is proving tiring. Not only does he get confused etc but he is angry with the world and everybody in it and I have requested that he is given some sort of psychological support to help him to process the fact he is not going to get better. When I requested support at the hospital we were informed that Macmillan nurses are available to us which was a surprise as I assumed they were only involved for patients with cancer. Anyway we have a meeting with my dad's GP next Tuesday to discuss the Macmillan support and psychological help.
I'm not really sure what I want from the forum, I think probably stories of your own personal experiences would be good. We don't expect my dad to be here in 6 months time and I just wondered how bad things are going to get. For me as I am holding every body else up I think it would be just nice to speak to others and gain strength from your stories and chat really.
My dad is a huge well know character in our town and communities we are attached to and has been the epi-centre of our family, and most importantly my mums life for a very long time (he has done everything for her). As he has gotten seriously ill I find myself taking on this 'epi-centre' role and holding every body else together. This isn't something I have a problem with, I am a very strong positive person but I also feel it worth mentioning that I have health issues of my own (Fibromyalgia if any of you have heard of it).
My primary concern is my mum's welfare as she has no outside family as they all cut ties with her when my mum and dad married (there is a 20 year age gap, they have now been married 28 years this year).
So the family she has is myself, my 2 brothers and our partners. We are very close and I know we will be enough but as we all work full time and she is retired I worry for her.
I am trying to speak honestly with my mum and try to prepare her for when the time comes as it is going to hit her hard.
I think you have read enough of my ramblings on, I maybe had a bit of a moan in there too but it feels good to write it down and put it out there to others who may be able to support us.
Hope you all had a wonderful Easter