third session with sarah and dad update

today we had our third session with sarah. we had a good session.
we told her all about getting the place on the independent living skills course. she congratulated us. said it was a great opportunity. of course she told us to mind ourselves because we are going to be so busy, dont forget to do self care things, was what she said.
we talked about when we could meet now that i’d be super busy all week every week. the only times i can meet her are either wednesday when i see dr barry or on friday afternoons. i really would prefer to see her on a different day than when I see dr. barry. the next time we meet it will be on a thursday, 3 weeks from now.
when i start the ILS course next week i’ll do one week then I’ll be off for a week bc they are on midterm.
so i’ll see her during the week I am off.
she said I sounded good today. like I am excited. and I am. She said I seemed ok. Its true I felt ok.
Update on my dad…he saw his gastroenterologist today. She didnt start him on any treatment for his bowel issue. She did however start him on injections for his brittle boan. She seemed to be worried about it, said his bones werent too good at all. she told him to continue the physio to retrain his bowel. his liver ultrasound came back ok, surprisingly. he does have fatty tissue though surrounding his liver. he came home and was disappointed that she didnt really do much. did you ask questions? i asked him. no not really was his answer. why not? i said. I couldnt be bothered. well dad, if you dont ask, you dont get answers.

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Wet Friday morning

its a wet day outside this morning. very very wet.
I woke in the middle of the night, and I stayed up for about an hour. eventually I was able to go back to sleep.
I got up at 7 and mom washed my hair. I have an apt with my cpn sarah at 10:15. was meant to go volunteering after that but I don’t think I will go. its far too wet.
we’re supposed to get the end of a tropical storm in Ireland this weekend. so there will be high winds and lots of rain.
my dad is gone to his gastroenterologist this morning. he’s hoping she’ll start him on some sort of treatment. he’s pinned all his hopes on it so I hope he wont be disappointed.
he also had physio this week to retrain his bowel. the physio gave him exercises to do and a chart to mark off each time he goes to the bathroom.
my mom went with him. she’ll go in to the doctor with him and ask questions because he never does.

Quiet saturday

I slept really well last night. I decided to go to bed at 9 PM and read for a while. I ended up reading for 2 hours. The new Cathy Glass book is amazing! I’m already 11 chapters in to it. Its really good, a page turner.
Today I got up late. I woke when my dad came in to let nitro out and I gto up and ate breakfast but then went back to bed for a while. I didn’t have any plans for today so I didn’t have any reason not to.
I’m going to my uncles birthday party tonight. He was 40 yesterday, the family are throwing him a party tonight. It will be just family at it. It will be in his house. I’m not going to drink though because I am watching my weight.
Tomorrow I have plans to visit my friend rose. I’ll go in the afternoon after dinner, we usually have dinner early on Sunday. My sister had asked me to help her get her pictures off of her phone, and I already did that yesterday. It took a while. Half of her pictures were on I cloud and the rest were on her phone. She wanted me to put all of them onto a USB key.
I forgot to mention here the other day that my dad got another letter from the hospital, he has to go in next Thursday, to get another bowel examination, the same one that they did not do the last time because of the meds he was on.
They’ve decided now that they can do it so he has to go in at 1:30 on Thursday afternoon to have it done. He’s pleased that they decided they can now do it. Hopefully it will be a success and he’ll only have about 2 weeks to wait once its done before he sees the gastro doc again to see what treatment they’ll put him on.
Also moms brothers wife has bone cancer and she is not doing well at all. They’ve decided that she needs pain management so nurses are going to come into her home to sort that out, right now her husband that’s moms brother is trying to organise it. she was having kemo but they stopped that because her platelets are low and her blood cells the white ones are abnormal also. I think things are not looking good for her at all. Its very sad as she was only diagnosed a few weeks ago.

He can be so critical

sometimes my dad is such a dick head. yes, he can be an asshole. I love him most of the time, but not tonight.

He just made me feel like shit. Not that he’s not done that 1000 times in my life already, but did he really have to do it tonight when I was already feeling bad?

I was talking to mom tonight about nitro’s trainer coming to do some route training with us. She wanted to teach me how to get to the city centre from where I now live on the bus. I was nervous about it, but willing to try it out.

She wanted my mom to be there for the first time while she did the route just as far as the local bus stop with me. Just so my mom could help me practice it and get familiar with it.

So I was telling mom this. And my dad butts in with dont bother going, she’ll never do it. Lovely, dad. Thanks for having a little bit of confidence in my abilities.

So then he continues with why would you want to get the bus when you can get a taxi to where your going? I tried to say because I need to work Nitro more. Then he keeps on with well when nitro retires you shouldnt get another dog, you will never learn this bus route, dont even try.

What a fucking idiot! And now thanks to his very critical outburst I feel like fucking crap.

I wonder if everyone thinks I’m a failure because I dont do enough work with nitro? And I cant go a lot of places by myself?

Obviously my dad does.

Update on my dad

so as you know my dad was having a scan yesterday on his bowels. Well he never had it. He went to the hospital, and they started it. They gave him the dye to drink, he drank it and they were just about to put the rest of the dye up through his bowel when a nurse asked him what meds he was on. When he told her he was on steroids she said she couldnt continue to do the scan. She said if she did it she thought it would do more damage to his bowel because of the fact he was taking steroids. So he never had it done. The thing I was confused about is this. That gastroenterologists he is seeing put him on those meds, she’s also the doc who ordered this scan. You’d think she’d know what damage could occur from the steroids right? It doesnt really make sense to me. Anyway he was pretty pissed off that he didnt get it done. I would be too if I was him. He was pinning all of his hopes on this scan to try to figure out what treatment he’d be getting. Now he has to wait again for another letter from the gastro doc to see what she will do next. He has an apt to see her in october already but I’m not sure if she’ll give him another earlier appointment now since the scan wasnt done. Either way he has to have a liver ultrasound in september. So well thats where things are at with it right now.

Prayers

i would really appreciate if my readers would send prayers and positive vibes my way. my dad is going in to have a scan of his bowels today. i am nervous for him and feeling anxious about the outcome. we wont know the outcome for a few weeks could be anything up to two months. he doesnt see the gastroenterologist again until october. this scan is to look at both his upper and lower intestines. he has to drink a dye. i know what its called but i cant spell it lol. barium or something? anyway it takes 2 hours to complete the scan. i just hope its not bad news. would really appreciate any support.

Update on My dads UC

my dad went back to see his gastroenterologist today. he has UC and he had recently had a kolonoskopy to check where things were at with it.

Unfortunately the news wasnt good. she told him his bowel is chronically inflamed. she said there is no cancer there which is a positive, but during the last two kolonoskopys he’s had polyps removed. she said the form of UC he has is very rare and very severe.

they arentsure what treatment to put him on. she said he’d have to go for another sorta scan, a sorta x-ray and scan done at the same time, to monitor his bowel motions. that wont be happening for a month though. in the meantime she gave him another laxative to try. He also has to go for a liver ultrasound in september.

she said there are injections he can go on every two weeks to reduce the inflamation but they have terrible side effects including breaking down his immune system and they can also cause skin cancer and other forms of cancer. so they are waiting to see what the scan shows before thinking about putting him on the injections.

he also has to have physio to retrain his bowel. there was talk of them operating on him to fit a stoma bag but now he thinks that isnt going to be happening, she wants to try every other form of treatment first.

Its a worrying time for all of us. My dad is a little depressed and his mood is fluctuating up and down and he is taking things out on the rest of the family. I suppose that is to be expected but its not nice and he is not pleasant to be around right now.