taking responsibilty to get me where I want to be

kayannie

I know that hospitals are pretty over stretched at the moment, but the mix up over your mum's biopsy seems to be a case of one hand not knowing what the other one's doing! I expect it is one of the larger hospitals? We were fortunate that when my mum had to go into hospital, it was into our small cottage hospital, only about 20 patients at the most. Several of the nurses already knew mum & myself which made things easier for us both.
It's good that you have your NM to escape to for a bit of normality.
Take care x

efes_shareholder

its absolutely a case of one hand doesn't know what the other hand is doing. 
I dropped mums old phone to her last night and some clean nightwear and the nurse walked her to the ward door so that we could have a chat , feel so much better for this and she looks so much better in herself - she should be home by the weekend once care plan is in place and just the darn scan appt to sort , hindsight tells me I should have just booked it on the phone but too late now. 
I'm trying to chill out as much as possible and yesterday gave myself a day off the phone , only taking calls from those who called me as its so dammed frustrating at times , it gets you down.
Everybody within my friendship circle , family and community are being exceptionally kind and offering help but there isn't much they can do , I will need to make sure though there is someone to sit with mum when I have my own appt next week , bit worried about that one but trying not to be.

Humdinger1

@efes_shareholder not wanting to belittle your own health worries, but it could be that stress is making the symptoms worse? You're doing fantastically and we are all here rooting for you.   Good idea to stay at NMs.  Love Humdinger x 

efes_shareholder

Humdinger1 said:

@efes_shareholder not wanting to belittle your own health worries, but it could be that stress is making the symptoms worse? You're doing fantastically and we are all here rooting for you.   Good idea to stay at NMs.  Love Humdinger x 

hi
stress has always gone straight to my stomach so im really hopeful that this is one of those things where my body reacts differently to my head. I have a history of IBS but these symptons are slightly different and have gone on much longer hence I wanted to get them investigated

Kitten868

Have you managed to get your sister to cover your appointment? She should be able to request that from her job. 
I'm so happy your mum looks so much better. And I am glad you had a day of fewer calls. Hope it starts falling into place more now. Definitely should be more manageable with a care plan in place xxx

efes_shareholder

Kitten868 said:

Have you managed to get your sister to cover your appointment? She should be able to request that from her job. 
I'm so happy your mum looks so much better. And I am glad you had a day of fewer calls. Hope it starts falling into place more now. Definitely should be more manageable with a care plan in place xxx

ive had the hospital on the phone to book the bioposy not realising mum is in another hospital despite being told by her cancer nurse , I tried in vain to do it today but no joy  - discharge papers not with the discharge team at hospital but you know what , tomorrow is another day
Now know my appt is a phone appt , I'm concerned as I seem to be dropping a few pounds and have a constant dull ache but i'll stop looking at google until I speak to them , I was even checking costs of private scans today which is a route im prepared to do to try and bypass some covid delay just for peace of mind

efes_shareholder

Thought i'd grab a moment to update since its been a while
Front door step fixed , locks changed , mum home , care plan in place , bioposy booked 
Its not all been as straight foward as that but thats the long and short of it , i've lost all faith in NHS systems and our assigned cancer nurse , mum spent 12 days in hospital where they were unable to organise a transfer over to the royal free hospital for her bioposy despite my relentless phone calls to various departments however the said hospital were able to call and book as an out patient the day she was discharged before she was even at the door with hospital transport
They said we had to take her to the hospital for a covid test which she had done on discharge tomorrow which would be a 3 hour round trip and probably even longer if we used hospital transport which we should considering mum isnt very mobile. Community team managed to arrange to get this done at home where i failed !!
We have booked hospital transport but for some reason unbeknown to anyone mum has dementia on her records so they are insisting she is chaperoned - this is such a head ache for the actual bioposy as is booked in for 8.30am so will be collected at 6.30am  , the procedure takes an hour or so and she is sedated so thats another 2 hours in recovery before assessment as to whether she can come home and then a further wait for transport home which will go all around the houses too - if i go with her on the transfer then i'm waiting around all of that time as its too far to come home and if they keep her in after all those hours i have to get home. with the covid restrictions i cant go and wait it out in a cafe or such like - really dont fancy the prospect of that and so frustrated that no one could go the extra mile to make this happen whilst she was in hospital !! the community nurse is the only person i have any respect left for and she has made moves to get the dementia removed from her records so that she can travel without chaperone but dont know when that will be confirmed.
I think mum forgets I have to work , my sister was here during the nurse assessment of her general health and when i voiced the waiting times etc , she said " do you want me to go by myself then" I obviously dont but she looked over to my sister and said " you cant take me because you are working"  - what on earth does she think I am doing ????????
Anyway currently toying over logistical solutions in my mind ................I'll get there.
Generally she seems much better and has had a complete change in medication and now has meds for the racing heart , I'm still very reluctant to leave her alone for long and am on tenderhooks at any noise but i've taken myself upstairs as the house is now void of visits and she wants a sleep. I managed to avert a falling episode on the first night home as I was upstairs talking to my ex about the house and amazon were knocking on the door and she tried to answer it , i've issued strict instructions that anyone who needs to access the house has the keystore number and she must not attempt to answer the door and must use the commode during the night time just in case she gets wobbly 
shes sleeping quite a bit and drinking quite a lot but also eating again - she says she has missed my cooking and fresh fruit and the hospital food wasn't up to much.
House sale still on but hit a stumble further down the chain which the rest of the chain has rallied round to fix in order to keep it intact , it means a 2.5k drop on the price of our house but for all the faffing about its not worth getting agitated over , there will be no further drops though as far as we are concerned. The sale is expected to complete mid april , the chancellor obviously helped the chain out extending the stamp duty holiday. 
my phone consultation is tomorrow , i'm still having problems with aches so i'll be pushing for investigations. I've been in bed by 9 since mum came home and feel very tired but it may be down to stress , workloads and managing everything including the loss of my freedom.
money wise , its all quiet and on target , i'm reluctant to overpay incase i need emergancy money for anything 

Kitten868

Oh my life. You've had a right time of it then! Poor you. Sounds like a total nightmare. And all on your plate still. 
Struggling to comprehend why they can't manually override the chaperone thing. Are you supposed to sit in the car park for 5 hours? And as you say - she was in a hospital!!! 

Very sweet that your mum missed your cooking. You are a star. Keeping her strong with brilliant nutrition. 

Also glad to hear the house sale is getting there so hopefully you will have to deal with ex and his bizarre partner a lot less going forward. 

I hope your appointment goes well and they listen to you on everything xxxx

efes_shareholder

Kitten868 said:

Oh my life. You've had a right time of it then! Poor you. Sounds like a total nightmare. And all on your plate still. 
Struggling to comprehend why they can't manually override the chaperone thing. Are you supposed to sit in the car park for 5 hours? And as you say - she was in a hospital!!! 

Very sweet that your mum missed your cooking. You are a star. Keeping her strong with brilliant nutrition. 

Also glad to hear the house sale is getting there so hopefully you will have to deal with ex and his bizarre partner a lot less going forward. 

I hope your appointment goes well and they listen to you on everything xxxx

I couldn't possibly put in to words the amount of frutile phone calls i had whilst mum was in hospital and how overwhelmingly frustrated I was .................I've actually asked the nurse today if we are able to change clinical nurses as the one we have is all lip service and quite frankly I have no desire to converse with her.
My sister has now reduced her hours at work as she was doing around 50 ! She struggles with money etc but something has to give at the moment so I told her to work out the minimum she needs to cover everything , from next week she only has around 30. I'm also going to take my self out of the equation when she comes in in future and get my work done out of the way as she can talk rubbish and is quite distracting, she means well but sometimes its more of a hinderence 
mum is adamant on wanting the bioposy , she said she will accept if there was no treatment but she just wants to know .............I have to go with her wishes but we are a month after diagnosis now and the bioposy will take 2 weeks to cultivate so theres some apphrension on my part but it will make things clearer , maybe I'm thinking she lose the battle before it really begins but i'm just trying to be realistic

efes_shareholder

Thank god its the weekend
my phone consultation didnt produce much , apparantly my calprotein levels are only slightly elevated ( around 40 over normal but some people are in their 1000's) and my FIT blood test is fine so they dont see me as a cause for concern and have despite me trying to convince them otherwise referred me for an ultrasound and a camera in the stomach investigation , personally I think I need the other end checking out ( although this feels me with fear) but I guess I'm no expert.  Due to covid back logs this could take 10 weeks so I'm expected to put up with my symptons until then.
The belly gripe has eased a bit but i've got a lot of back discomfort , Have resorted to trying to eat softer food so basically having porridge , and then salmon and mashed potato to try and ease my digestion a bit and give my stomach less to do.
Vented my frustration at my doctors at the consultant I was referred too , not much they can do.
Asked the consultant about going private to speed the process up , he said it would cost me thousands although I know from a conversation I had with a private clinic that a ultrasound would be around 300 pounds and a virtual CT colonospy so no need for a camera up my bum is about 800, its something I will bear in mind but not really very "money saving" friendly , but what cost do you put on peace of mind.
My daughter bought 3 boxes of forgotten possessions from the house today , so much old football memorbilia , mostly programmes , some signed but probably worth nothing and i've survived 11 years without them so not sure what I am going to do with these as all charity shops are shut and I don't really have the time or the inclination to ebay them , i think after i kicked up a stink that the ex gave some signed pics away to the crazy GF's family he is making sure everything comes back to me even if it is tutt.
Money is looking promising this month , I have one more direct debit to cover and a birthday for my middle child that i should be making more effort to organise something nice for - shes actually bought her own present and I need to reimburse her which is pretty terrible really. I've bought my mum a pandora bracelet for mothers day , she has always bought the grandaughters pandora jewellery and a few times has said she would like one herself so I've got one as it feels like she should have one , I bought one with the family tree charm which replicates the earrings she recently bought me for my birthday and i'll put it on the opposite wrist to her panic alarm