taking responsibilty to get me where I want to be

efes_shareholder

lucielle said:

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

Unfortunately not without her agreement , we have got somewhere today , both my sister and I had an indepth talk to her and I asked her what she would like to happen and she said she wanted to feel better so I have laid it on the line and said in our current circumstances that isn't going to happen and for that to happen she would need to accept the help being offered and that i'm sorry its not at home etc , shes agreed to go and visit the place to see what she thinks and to go on the waiting list but i've been told we can't visit beforehand so i'll have to work round that one and go with the fact that she is free to come home if she wants too and its not like the hospital !! 

efes_shareholder

Today has been challenging as most days seem to be , my stomach is pretty settled although I still have back pain , I have bitten the bullet and I have booked a private consultation at the same hospital I am having my NHS scan on Tuesday evening.
Its costing me £195 but I'm in excess this month and to be honest , I'll happily pay it for some reassurance or 1 to 1 on what could be wrong, its booked for 6.30 which is the time mums carers come in so I'll have a bit of give with being away and can move her morphine round 10 minutes each dose so that it can wait until I get home if no one else can be here.
Other then that I'm just counting the days until payday and the new set of bills paid and hoping there will be soon be news that the house fund is heading my way.

efes_shareholder

Today saw a nice little bonus on the cash front
Cheque arrived for £340 from Marks and spencer bank , something to do with previous charges , not sure why but I'll take it considering this is the credit card I defaulted on and ending up paying a full and final settlement figure of a third of the owing amount.
Need to try and find the time to get it paid in but should be able to do it one morning next week. I'm looking at it as its my initial consultation with the gastro doctor covered plus £150 left in the bin.

enthusiasticsaver

I hope you get some answers on your health issues soon and your mum sees sense on going into the hospice to get her pain and medication properly managed.  You have a lot going on.  On the plus side if the house is exchanging contracts soon at least that is one thing sorted. 

efes_shareholder

so 2nd ultrasound today from the doctors referall to a GI , carried out at a private hospital.
firstly what a difference , took many more images and carried out by a doctor , secondly completely the same as the first , I don't gallstones or kidney stones.
hospital called me later in the day to check my appt tomorrow as its with a different gastro doctor to who requested the tests and they wanted to make sure it wasn't an error - part of me did think maybe I should see him for continuation purposes but I found him so dismissive and generally unhelpful in the telephone consultation I really didn't want to pay him £200 and risk getting the same bedside manner. Not sure if I made the right call as potentially I can see him privately and be referred back on to NHS as he works for both but we shall find out.
Stomach had been calm for a couple of days but today its troublesome again , Prob not helped by my lady visitor. I'm playing it down so not to concern people with everything thats happening at home but I'll be honest when its at its worse I would rather go through childbirth.
NM has taken my cheque to bank for me as he has a couple of days off, i get paid on weds and have £314 at the moment left in my current account along with the cheque for £344 which minus the £200 for the appointment isn't a bad place to be
sister stayed last night and is staying tomorrow too , she has forwarned me she has another night away on Friday ................who knew you could go to hotels for naughty nights away during lockdown. Shes back to work next week so it will all be my shoulders again and she hasnt sorted herself a new car yet so am sure there will be problems there and panic stations. She doesn't have a huge budget or much of  a budget at all and seemed happy to have been accepted for car finance , when I told her to get the finer details on it  , it was 32% apr and paying back 1700 more then you borrowed on a relatively small amount. Shes insisting she can afford the repayment which i told her is fine when we are locked down but she needed to take in to account that any car was going to have upkeep costs and just because she spent slightly more she wouldn't gaurentee exemption from these , my advice to her was to spend what she has and put the money she says she could afford for monthly repayments in to savings so she has a car fund...............as my mum pointed out , she won't though , she doesn't even service her cars.
Mums had a better few days , ,macmillan called today and theres no news on when she may get a bed in the sympton unit but shes now more then happy to give it a go .we know it won't be before wednesday , a big part of me hopes its in time for the easter break so that I can make the most of the "down" time but it feels rather selfish to think that way.

efes_shareholder

So i saw the GI , he gave me a balanced objective and said he is quite happy to see me on the NHS  or privately but he has to assess it through a ethical point of view , he is off the opinion that all my tests so far do not indicate any cause for concern and that understandably there could be a certain amount of health anxiety going on , I'm already on the waiting list for a camera down my throat and thanks to the appt I am now on the list for the lower end camera too.He also sent a message to the original consultant for any possibility to expediate my wait -  If I pay privately to have both procedures done it will be £2600 so i have to decide whether I sit it out or I pay for peace of mind. To be brutally honest I don't want either test done but I do know that it is essential if there is a root cause of the problem so I'll have to pray for lots of sedative !! 
Mums had a few good days and now we are back to some darker ones , unable to keep anything down again and lots of breathlessness and racing heart , community nurse and GP have both called in today , currently waiting on a hospice call but no movement on that at the moment and probably right now more needed then ever.
Managed to broach the conversation of mums wishes , not medically but as and when the time comes what sort of goodbye she would like , I felt it was important that we knew but did not want to be insensitive bringing it up - Funny enough my sister and I pretty much already knew the song choice but it was nice to confirm we were right. Also now know where all essential paperwork is and where insurance policies are held etc.
Community team organised what they call "just in case" medication which is for when things take a turn  , I don't know if thats because they anticipate that or because of the bank holiday weekend it is best we have it as the name suggests "just in case"
Had to be quite assertive with the sister earlier as I usually get 2 nights at NM's , I know already that she is away again with the BF tomorrow ( personally i wouldnt be going far in the circumstances) , She had already said Saturday was fine , which is just aswell NM is actually off on a saturday night for a change and I asked for either Sunday or monday too as its pointless going anywhere if NM is on an evening shift. Today when she arrived she started citing potential problems of sunday , saying she would bring my nephew with her on saturday but sunday both her daughters were staying at their BF's and she didn't want them complaining that she had already been away several nights ( including her own with her BF) , I said in no uncertain terms that how she organised it wasn't my problem but as I would then be here for the next 7 days I needed 2 nights away - she got on the phone and its now organised , i'm not sure it would have been had I not insisted.
Money is all good , I had a healthy sum from last month left over and the unexpected cheque , I've inadvertantly paid my mum housekeep twice this month as I thought I had cancelled the direct debit but I had only done so for one month so I'm going to get it out of the cashpoint and use that as my spending fund or get it back in the bank one or the other
Need to give some thought to the private procedure , without mum in for sympton care its going to be enough of a job sorting out enough time to get it done as i need watching 24 hours after the sedation

efes_shareholder

Not much change here , thursday was another bad day in terms of mums sickness , Macmillan changed her perscription around quite a lot and it didn't work but now its been switched back and shes a bit more settled. Found out over easter that she really can't tolerate chocolate anymore which is sad for her as its one of her favourite things. 
Sister stayed sat and sun evening ,  I returned home for a few hours on sunday so not a clean break but a break none the less. Sister found out on saturday night that her bf of 4 years has during that time had a bit of the side for a year , shes holding up better then expected but its still a big big shock as really did not see that he could be that kind of man and does nothing but present himself as a man of integrity - was late to bed on saturday night as spent an hour or so letting her get it all off her chest and talking her down.
Work have sent an email regarding returning to the office , looks like we will be gradually re introduced with rota's in place going foward , i don't know how that affects me but i don't expect to be called in under the circumstances considering I can do everything remotely , if they do insist that everyone is included then I will have to think hard about either reducing my hours or giving up completely for the time being.
Still pondering the costs of the tests i need privately , Don't really want to pay but will if it flares up to its worse again..............I'm also thinking if they find no cause I'm then going to be shouting for CT or MRI scan to see if its linked to my endimistrosis which won't show up on the tests they are doing so will i then start wanting to pay for those.
Money this month looks more then comfortable , probably because I had the bonus cheque for £344 and £200 left over last month , I've moved that along with the £750 I had in my esavers in to my current account as NM has been passing me money for when his bills come in which I've put in to my esavers , it just seems easier to seperate it and if I have it all of my surplus in the current account I have a really clear picture on what I have.
I need to have a clearer picture of what I will do with my house sale money , it seems such a large amount to find a home for , I currently have 6.6k in prem bonds so I was going to up this to the max of 50k for ease and accessibility but it i'll still need to home around 80k , have no idea where best to put that amount of money.
It is imperative that I don't go dipping in to it and keep the focus that its for investment and not for holidays or new cars.

efes_shareholder

Today my belly has decided to play up but its presented in more a side and  back ache , im also feeling a bit breathless and didnt eat much dinner as I felt full pretty quickly. 
I'm going to call the private clinic tomorrow and enquire about their booking procedure etc , and how long it takes to organise as I really just need to get it sorted. Its further complicated by needing someone to look after mum but we are just going to have to work around it , I had hoped she may get a hospice stay and I would be able to have it done without the worry of getting her catered for.
Its a lot of money but I'm hoping I'm buying peace of mind and solutions.
i absolutely acknowledge that I have a certain amount of health anxiety going on but its not without ongoing symptons , although tonight when feeling breathless I started to get stressed thinking maybe I had a blood clot somewhere from my covid jab - thats the stuff I need to cut out.

Had a spend today of £10 on a jar of manuka honey , I regularly have herbal tea with a spoon of honey in it ,haven't drunk normal tea for about 6 weeks. I've read manuka honey is very good for inflammation and digestion issues and since I've tried pretty much everything else I may aswell give it a shot.
No further spends planned for this week so fingers crossed the rest of the month remains similar. 
I have already had an invitation out to dinner now from my group of girlfriends now places are opening back up but I can't commit to making plans like that with the situation at home. 

I'm hoping I get a better night sleep tonight , i couldnt sleep last night and when I did it was extremely weird , as if I was watching myself sleep with all sorts of weird things going on around me , did consider for a moment that potentially I'm cracking up as it felt very surreal!! 

efes_shareholder

afternoon

have called private clinic to make the appointment for the procedures and the lady I need to speak too is no longer in the office so have had to leave a message.
going to try and get a steer on the NHS wait , I was told approx 10 weeks by the initial consultant but according to the clinic website unless NHS patients have the trigger symptons to be seen within 14 days it could be up to 18 weeks for those whose symptons don't meet the criteria.
I can't wait that long , it feels like forever already so I'm gonna find out how long I wait if I go private and just get it done , the thought terrifies me and I'm not overly happy about having to part with 2.5k but I'm more unhappy not knowing why I have such pain and discomfort. I won't be invoiced until after the procedure so I will put aside what I can which at the moment is around £1100 in my current account which doesn't need to be spent and take the rest from my EF replacing when the house sale completes (which i have been meaning to chase up) If I use my everyday spend c/c I'll have two more paydays before I need to clear the balance during which I can minimise what I need to take from the EF by putting aside EVERYTHING spare.

Kitten868

It never stops for you does it. I'm sorry you're struggling so much with your own health through this. I would think about the private route for the shorter wait but also so you can arrange for better pain relief while you have it done. I had severe endo but was refused pain relief when I had the camera up. They couldn't look very far as I was in agony. Then if you need a laproscopy you can go NHS but you'll be on the list sooner. Have you found any pain killers work? My favourite was always diclofenac and water bottles. Now I settle for cocodamol. It takes the edge of the pain off enough to function. 
Hope your mum gets a space soon and some respite from the pain. 

With the money most savings accounts can accommodate that much money but I can't see you getting much interest wherever it goes. Have you had the information about the equity release repayment yet? Might save the most money clearing that first? 

I wish I was more helpful to you. You are managing this like a pro. I certainly think it would be reasonable for your job to continue at home. I can't see how they could insist you go in xxxxx