taking responsibilty to get me where I want to be

efes_shareholder

Kitten868 said:

Please don't think I was trying to minimise your pain or undermine you. I totally acknowledge that you are in pain and that something is wrong and that you deserve appropriate medical help. I wanted to be positive about what you have had done because I want to encourage you. I really wish you could have the answer and be well enough to not have that added difficulty. Xxxxx

no i'm grateful for your support and i know that good results are a positive thing and furhter indicate I'm probably just releasing stress in other ways.
I'm currently very annoyed with my sibling , she couldnt be here for the bioposy call as her car has died and then said she would be here later on in the day after a lunch date with her bf, I've just had a text from her daughter saying she wont be here at all as she doesnt know yet but that the bf has booked a hotel !! 
!!!!!! - couldnt make this up !! hows it a surprise when theres a 12 year old to consider !!
Just leave me to deal with the results , thats fair isnt it 

CRANKY40

Have your blood tests checked your liver enzymes and bilirubin levels? Your symptoms do sound incredibly similar to mine. Also, the gallstone that was in my bile duct couldn't be seen on ultrasound. Right until it was fished out it was still only theoretical due to scary high GGT levels (liver enzyme), raised bilirubin (only slightly raised at first) a slightly dilated bile duct and the fact that the pain came in my stomach every time I had eaten. The pain was relieved at first by lying down on my left side....

The doctor can prescribe meds for your mum to stop her from feeling sick. There's no need for her to feel worse than she already does.  

efes_shareholder

CRANKY40 said:

Have your blood tests checked your liver enzymes and bilirubin levels? Your symptoms do sound incredibly similar to mine. Also, the gallstone that was in my bile duct couldn't be seen on ultrasound. Right until it was fished out it was still only theoretical due to scary high GGT levels (liver enzyme), raised bilirubin (only slightly raised at first) a slightly dilated bile duct and the fact that the pain came in my stomach every time I had eaten. The pain was relieved at first by lying down on my left side....

The doctor can prescribe meds for your mum to stop her from feeling sick. There's no need for her to feel worse than she already does.  

thanks , the pain is pretty constant , it may go away for a few hours but it returns and radiates in to my back and hip , doc has given me 15mg co codemal but its not really touching the sides of it , they seem happy enough to give tablets out but not to see anyone.
Getting a GP appt so difficult yet you can see a dentist , a nurse for a blood test etc.
Mum takes an anti sickness tablet 3 times a day.
I've spoken to the sister and told her excatly what I think about her "surprise" trip away , it didnt go down well , she did the "I didnt know" and the people in on the surprise didnt know about the bioposy call being today ...............my point entirely perhaps I should have been given the heads up by one of them who are too selfish or inconsiderate to even consider that 
Asked her how it would sit if my bf had done the same and not consulted with her..............her reply , well he couldn't !! 
She said " I come on sundays and mondays so you can go to NM's.".............I corrected her , she has stayed once in 6 weeks because mum needed observation overnight and i'd been back and forth to the london hospital all day. her son stayed last weekend and after staying one night she said she didnt know how I settled as she had trouble listening out for every noise etc. 
She left the call saying " you dont have to take everything on yourself" to which I replied " oh but I do and I have been" 
I'm sorry if that spoilt her evening , never my intention but after a similar stunt a few years ago when she came away on holiday "as a surprise" I'm not convinced that the whole thing wasn't organised so that she could avoid being here and be with the boyfriend in case it was bad news 

efes_shareholder

im still incredibly angry at my sibling for yesterday but now accepting that we are just different people and shes happy to put everything on my shoulders 
i've escaped a bit today , had a relaxing bath and eaten properly and feel better for it
Even allowed myself a bottle of red wine as part of the tesco meal deal I treat myself too.
Maybe i'll start to feel better if I remember to take better care of myself , its difficult when i live with someone poorly who doesnt want to eat and you have no appetite yourself but I have to be stricter on myself and make myself eat and just accept i have an inconsiderate sibling 

efes_shareholder

good evening
had mums visit with the oncologist today and as suspected she isnt well enough for chemo so it just a pallative care plan with no prognosis given on what to expect , no one has really given us any indication. I guess nobody knows , the good news is the cancer hasn't spread but its the expectation of pancreatic cancer that it generally will.
Shes not had a good few days , the doctor has doubled her morphine and her anti sickness tablets but shes still in pain and shes still being sick , quite usually after the morphine so its impossible to know how much has been asorbed. Both the oncologist and macmillan suggested that she go to stay with them just for a few days to get her symptons better managed as its very hit and miss as to what works one day to the next , it seems like a great idea as half of my sister and I's stress is basically juggling through the day , asking her if she is in pain etc and keeping her hair out of her face whilst she throws up.
She is point blank refusing , shes saying she had 12 days in hospital and that was enough and doesn't seem to grasp that this would be for her benefit to get symptons managed as well as possible by being observed by the leading proffessionals in that field , shes been incredibly stubborn and although she says she will think about it , i can't see her mind changing.
Currently I'm thinking , you told me the last thing you wanted to be was a burden but if you want to struggle on with pain and sickness then so be it !! 
my symptons are still ongoing with little release , I have a scan on monday which was organised by my gastro referral so i'm going to have that and then I'm going to make a private appt at the same clinic if it comes up normal.
It will cost me around 250 for the referral but I need to find out whats going on , as although my mum is refusing the macmillan help and saying she knows its unfair on us , my health is also important and I do not have a terminal cancer diagnosis so I have to make sure I get this checked out. I'm important too.
Money wise , I still have 380 left to payday so I know I can afford the consultation and the house contracts are due to exchange any day and I have my EF so i'm just gonna do it.
I spoke to a friend who is a nurse at a private hospital as NM has an abnormally high sugar reading yesterday and was concerned so she saw him in her clinic and she recommended I do it just because of the difference in the level of care and investigation. She also gave him a pep talk as it seems he has been looking after himself as well as he knows he should , I told her that I cooked for him before I left etc but I couldn't look after him too !! 

Kitten868

I don't think I'm getting all the emails about your updates or I'd have been on sooner. 
Your sister and her "surprise" trip is infuriating. You are totally right on that and I do agree with what you suspect. You alone dealing with your mums reaction to it all and sorting it all out. She's just worrying about herself as are all the people around her. Who does she think will take it all on if you don't? As you say like you've got any energy left to deal with her and being angry at her. Silly woman. 
Speaking of silly women I am sorry your mum won't go in when it is being advised by all the professionals. Maybe you need to sell her the fact she could go in now and come home again with it manageable or she'll be forced to go in and be in a while. I really wish your sister had your back with this. You need someone to talk things through with and to support you in encouraging your mum. 
I'm glad you've spoken to your friend and have an answer with how you're going to go forward. I think you're doing the right thing. 

Overall I think you're right in what you're saying. I wish you had more support and I wish you so much strength to deal with all this. I think you are wonderful. I hope you do get a sense of liberation out of the house sale. I'm sure it'll get lost as there's just too much going on but please breathe it in for a second. The other thing is it does buy you the opportunity to start buying back your mums house sooner rather than later. (Not saying now but whenever you feel like you want to its there for you). Keep going. I think you're amazing xxxx

efes_shareholder

Kitten868 said:

I don't think I'm getting all the emails about your updates or I'd have been on sooner. 
Your sister and her "surprise" trip is infuriating. You are totally right on that and I do agree with what you suspect. You alone dealing with your mums reaction to it all and sorting it all out. She's just worrying about herself as are all the people around her. Who does she think will take it all on if you don't? As you say like you've got any energy left to deal with her and being angry at her. Silly woman. 
Speaking of silly women I am sorry your mum won't go in when it is being advised by all the professionals. Maybe you need to sell her the fact she could go in now and come home again with it manageable or she'll be forced to go in and be in a while. I really wish your sister had your back with this. You need someone to talk things through with and to support you in encouraging your mum. 
I'm glad you've spoken to your friend and have an answer with how you're going to go forward. I think you're doing the right thing. 

Overall I think you're right in what you're saying. I wish you had more support and I wish you so much strength to deal with all this. I think you are wonderful. I hope you do get a sense of liberation out of the house sale. I'm sure it'll get lost as there's just too much going on but please breathe it in for a second. The other thing is it does buy you the opportunity to start buying back your mums house sooner rather than later. (Not saying now but whenever you feel like you want to its there for you). Keep going. I think you're amazing xxxx

Thank you , to be honest since surprise gate the sister has stepped up a bit more , i think it took a pep talk from her best mate , who suggested that we both be with the oncologist today. she stayed sunday and monday night ( couldnt wait to get away but i get it  as i wasnt in a rush to get back as i wanted a rest) mum took a tumble in the night on sunday going to the toilet and fortunately it woke my sister ( i would have slept through it ) , she also vomited all morning and all sorts of people had to be called and part of me it was her that dealt with it and had the stress and worry and a little taste of what life is like
i'm hoping mum changes her mind on going to the hospice to have her pain management assessed , it would be better for everyone but she has it in her mind that if she goes in she won't come home , she said she had enough in hospital so had to explain that in the hospice she can have visitors , she has TV and she has her own room - her big complaint about the hospital was the noise from other patients. Our GP , the oncologist and the hospice team have all suggested it to her but shes not having any of it , said she will think about it but at the moment , no. There is a waiting list so it wouldn't be instant and my concern is that when she decides she will , there will be a big wait where as if she went on the list now she doesnt have to accept when it comes up but they can't put her on it without her permission. Its so frustrating as both my sister and I have said throughout that the most difficult part has been assessing mums pain and symptons and trying to naviagate our way through it and the general lack of help , and now the help is there and she is refusing. She keeps saying to me she doesn't want to be a burden but the biggest burden is the medical side and help has been offered but shes refusing to accept it. She actually acknowledged in the call that it would be helpful for me and my sister but no she wasn't interested right now and she didnt want her name on the list. 
I've left the subject tonight and will revisit possibly tomorrow , I didn't realise how stubborn she was and wish she could see that its for ALL of our benefit but most importantly hers.

lucielle

Hope your mum decides to get help
L

efes_shareholder

lucielle said:

Hope your mum decides to get help
L

me too
i've mentioned it this morning as she said she doesnt feel well at all and i've told her the help we have screaming for is now here but she just keeps saying its a lot to process and she will think about it 

lucielle

Could you ask her to put her name down on the hospice list in view of the length of time it takes and she can make a decision when they call?
L