taking responsibilty to get me where I want to be

efes_shareholder

enthusiasticsaver said:

So sorry about your mums diagnosis and would just reiterate what others have said that you need to take time for yourself too and let carers and your sister help out too. At least you have a temporary escape at NMs.  Your poor mum though.  Macmillan are brilliant so take advantage of whatever help you can get. 

Thank you , its been a tough few days.
I've suspected a while we had something sinister afoot but theres been some days better then others , Today now some medication is streaming through she seems a bit brighter and thats encouraging to see.
My sister has been coming in each day around her work hours  , shes trying to do as much as she can - Its actually a blessing I'm working from home and can over see things but I will be taking the oppurtunity to take time out when I can , I need this. NM's move is perfect timing as I can be back and forth in 20 minutes rather then 45 odd , he's told me not to lose my sparkle so I'm trying my best to do everything with a smile and positivity and take each day as it comes.
We have already received so much more help in the last few days then we have in the last few months , Friends and family have reached out offering both support and pratical advice , The pandemic has affected assessments but finally mum got to see the district matron etc.
We dont feel the help is really needed at this stage but i'm going to implicate as soon as possible as I don't want to end up in crisis trying to organise when we do need it.
I've also got people telling me to apply for PIP so I need to organise that at some point but I wouldn't know where to start as I've never claimed any benefits in my life.

efes_shareholder

yesterday was a better day.
The medication is starting to work , mums not so weak and although she certainly wont be running any marathons she was able to walk etc without help.
I cooked some salmon pasta using philidelphia cheese and full fat milk as a base for a sauce with some brocolli and cauliflower and although she only ate a toddler portion , it was still eaten and kept down and hopefully she retained some goodness. she only managed a slice of peanut butter on toast and some ensure drinks and lucozade other then that.
The phone has been off the hook and its been a bit of a whirlwind sorting some stuff out , still lots to do but a day at a time. 
Money for now , the mins will be kept going , the spends will be considered and any excess wage will be squirrelled away with its destination to be decided at a later date. We do not know what tomorrow will bring or what will be needed when , I do not know if I will have to take some unpaid leave from work at some point so in to the emergancy fund it will go

efes_shareholder

Todays been manic off sorts and spendy
bed delivered and installed this morning , feel better that its now in place
consultation with the doctor over the phone , mum wants to explore treatment but the only treatment would be chemotherapy which will mean the trip to london , we will go there and then meet with the oncologist at our local hospital to discuss options . Chemo will only buy time as the cancer is not curable. The chemotherapy will also pretty much depend on her state of health at the time and ultimately the oncologist will decide if we take that path as  we all know chemo can make you sicker then your symptons. I've been as honest I can with her about the prognosis without saying "basically your dying" and said it has to be her choice if she wants the chemo but not to feel as though she has too. No one will think she is throwing the towel in , I guess we will get a better idea of the time it buys but at least all options are being explored and it will be a considered choice.
Also had isobel hospice on the phone and we have a consultation with them next week. just the words Isobel make you think your days are numbered. the lady asked if we had a life expectancy/prognosis  which we haven't and said that any DLA application would be better made when known , same as the care plan and we can't know these without the scan which as it stands could be another week before we know when it will be.
We are already a week on from diagnosis so god knows how long that will take to sort out or if she will even be well enough to go although the last few days she has managed to eat a bit more and the pain relief is in place so who knows. 
My sister seemed to again fall apart when I told her all of this but it was nothing I hadnt already said , I guess when an "official" says it it becomes more real. She got off of work early and came round but by then I had covered most things and it was a bit pointless. 
I'd have liked her to offer to stay a night etc but shes off to the boyfriends on her day off  tomorrow and then again on sunday evening , I'd like to be able to pop in on NM for a few hours here and there and go about my own business too so it looks like at some point I'm going to have to lie it on the line that I shouldn't need to have to find a "sitter" to take time out. Its not like that really I just guess I am a bit envious of her situation in comparision to mine. Ultimately it doesn't matter mum needs looking after and I will do it. Now she is downstairs I can go to NM's for the evening as long as one of us is here in the morning.
He came to me for an hour or so today , he doesn't know what to say or do for the best so I've just told him just to provide the cuddles when needed.
I've had to buy some new bedding as we don't have any single bedding in the house , some additional electrical sockets and a telephone extension lead so I can get the phone set up near the bed and night lights etc. Also some storage for all the medication and nutritional supplements , its all my every day spends card at the moment , I will asorb some of the costs myself and deduct some from my housekeep as at the moment , money is the last thing I am bothering myself with,

lucielle

So sorry you're having to deal with this.  I hope sister pulls her finger out
L

enthusiasticsaver

Sounds like you have been really busy sorting things out.  Is the bathroom downstairs and now your DM also sleeping down there? Can your sister do at least one night during the  week to allow you some respite or does that make it difficult with her work? 

efes_shareholder

enthusiasticsaver said:

Sounds like you have been really busy sorting things out.  Is the bathroom downstairs and now your DM also sleeping down there? Can your sister do at least one night during the  week to allow you some respite or does that make it difficult with her work? 

Mum will sleep downstairs now , its safer as she can get around with her trolley and due to her dizzy spells and weakness, not having to navigate the stairs is one less thing to worry about.
we have a downstairs WC but no bath downstairs and now we have a chair for the bath upstairs courtesy of occupational health  and she did manage a wash and hair wash yesterday with the help of my sister - my sister works in care so this is better as her vocation and i'm more of the sorter outer and diet planner.  Today I'm pleased mum has managed a slice peanut butter on toast , some warm banana and  custard and salmon and mushroom carbonara , thats the most she has had in several weeks , its still not enough but I will push my luck and try and get some ensure down her before she goes to bed.
I will talk to my sister about staying a night a week , to be honest once mum settles she sleeps for quite some time so at the moment it doesn't need to be overnight as long as one of us is here to help her settle for the night with her medication and one of us is here when she wakes up in the morning , plus im such a heavy sleeper nothing wakes me so not sure what difference it makes  - If I didn't live here we would have get by.
My sister did today actually ask how I was ! I just get the impression that she is struggling with the diagnosis etc and doesn't like being confronted by it. 

Kitten868

You've achieved so much so fast. You've got all the infrastructure all laid out. You've even stood up for yourself with your sister. I think you're amazing. 
As you say as the days go on you'll know more about your mums situation. I think it won't seem real until you've got a life expectancy for your mum. I don't know how you process that so fair enough. As you say no pressure at all with whether or not to proceed with chemo. You'll be better able to make a decision when you know more. 

Playing to you and your sisters strengths is definitely a brilliant plan. You are doing amazing with the food - healthy varied and staying down! 
Could you start sorting out your mums room now she's not in it. Once you have a spare time to get round to it. 

As you say forget about money for right now. It all moves faster and you can't agonise over buying bedding for your mums new bed. Especially when there's something new to sort out every day. 

You are doing fantastically xxxx

efes_shareholder

Another spendy day !!
We had a slightly unstable and leaky downstairs WC that I have meant to sort out but keep putting off because of everything else , finally got that sorted £85 , needed new pipes and bends and resecuring to the floor but its more important then ever that we arent mopping up mini floods amongst over things
Also some more bedding as just bought one set and mums already had a spillage so i have that to pick up from argos call and collect at some point.
Mums telling me to keep a note as I shouldn;t be paying it but I wont be passing on all expenses as some things are things that I wanted , like the medication storage , multi usb tower and the phone  , oh and a digital thermonator after she had temp a few days ago and we couldn't gauge it so i'll soak those up.
Sister had a day off today , she came in mid morning and helped mum get changed and washed and then went off for a coffee with the BF , she did come back later in the day but its the mornings that are most manic as mums generally not good when she wakes up and by the time she came back she was just sat here chatting and keeping mum awake really so as much as her intentions were good I've sent her home to chill out in the hope that when I need to chill out she will return the favour , and stay for more then an hour or so - time will tell.
I forgot to ask her to collect a perscription so i will pop out and do that and maybe pick up some tonic for my gin
I really need to tidy up and sort my room out so that is tonights job but I'm tired so it may wait until the morning
Did get some me time when I popped out for a blood test , not sure if that counts. and i've already told sister she needs to come by tomorrow afternoon as i want to spend some time at NM's and just take a little step back after a busy busy week.
My sons birthday tomorrow so will send him some money over , its been such a week that for the first time ever i've had to send him an "internet" card.

efes_shareholder

The only news i really have is mum news
I managed a few hours out on saturday - my mum literally insisted that I went out ( sister popped in for an hour or so) then I went over to NM's for a few hours in the afternoon , came back about 5.30  during which his son visited with his children and partner , I then came home and sorted out mums dinner and evening meds and got back over there for 8.30 so we could have a valentines dinner which we werent actually that hungry for as we had cooked through the day for his visitors
I asked my sister to come in first thing this morning so i didnt have to dash home to start work , mornings are the real struggle as mum isnt a morning person , wakes a bit grumpy and doesn't want to eat for a while. Although I wasn't at home until 12 , I did take calls from the district matron , the occupational health and the dietician so a bit of a bus mans holiday. Sister texted me about an hour after she arrived saying mum didnt want to eat so she was gonna shoot off..................its so typical !!! I had to reply saying mum was groggy at first in the day and would probably want something once the morphine kicked in and could she please hang around as the nurse was due and if she left there was no one to let her in , she did eventually hang around until I got home at 12 but its so typical that she tries to get out the door at the earliest chance.
The hospital have basically said that they wont do the bioposy until she has another blood test for bloo clots ................they didnt tell us last week !! i've had a bit of a rant at the nurse and basically told her it seems like the hospital are just delaying things and i've picked up a reluctance when talking to them of them wanting to offer any life prolonging treatment , I get that there are factors that influence what she can have but they seem happy to just let us sit in the background dying and hoping we wont make a fuss.
The nurse came in today and mum asked her how long she has got , the nurse said that pancreatic cancer is one of the most aggressive which I already knew and it could be a matter of weeks or a few months , i guess its the question no one knows the answer too.
This evening I'm back over to NM's as this is my only oppurtunity as he is working evenings so  pointless going to just get up and come home before work etc , hes off tonight so i've told my sister to come and do the evening shift and give mum her meds before bed etc and i'll be back first thing. Hopefully she will stay until she is dosing off.
min spend this weekend with the exception of sons birthday cash and the toilet fix , did £14 in sainsburys on valentines rubbish , i'd left this late so the only suitable card was a fiver ............rip off !! Got a lovely bunch of roses but no card as NM had left it too late too , he lost his dad this week so he has also had a bit of a rough week so I've let him off for not being organised 
the internet card i ordered my son via the internet arrived but it had cut off nm's name , we all found it very funny but i may send a karen email complaining as it cost me over a fiver !!

efes_shareholder

Another day in this mad world.
mums had her covid jab today , the nurse came out to us. Hoping its the least she has to worry about at the moment and we dont have many symptons etc.
Shes very constipated which is the complete opposite to the problems we were having , i've given her duclolax and sennakot and my own powder that I get on perscription ( checked with the nurse first) shes uncomfortable and doesn't want to eat , if we dont get any joy then i have to get on to the gp tomorrow.
Gonna put prune juice on the shopping list too.
With the problems we are having getting the scan and the reputation of this particular type of cancer I have contacted my two kids who live away today.
I don't know what the future holds but I am encouraging them to visit whilst she is well enough , I don't want them to leave it until a time when it may distress them to see her condition ( although the impact of this cancer is very visual) and there is also a chance we may need hospital treatment which would mean that they can't visit , 
I don't feel its a knee jerk reaction , I just feel they should get a visit in whilst she is still functional with her wits about her as we don't know what speed this will escalate etc , hopefully it wont but its just in case.
My son is getting the train down friday evening and returning saturday evening , i helped him out with his fare as he is not getting many hours at work and due to start a new job on monday so thats £40 out of my account. 
The eldest is going to come over on sunday , she is having her jab tomorrow.
I'm not going to over pay anything this month when I get paid ( 10 days and counting) I don't know what expenses are coming up and what I may need in terms of cash over the coming weeks , what I mean by this is i'm not going to overpay what I have already budgeted to pay however this does include over paying the tesco card but I won't make any additional payments as I had been intending - I think that makes sense