The road is long

My dads life journey is almost at an end.   There is no treatment available to him.  His tumor is a right lobe butterfly shaped tumor.  Looking at it on the scan you can see hes screwed.  Along with his butterfly tumor he has another 6 smaller ones and fluid & swelling of the brain.  Its a wonder he functioned for so long.  The Southern General had a look at his scan this morning and they cant offer him anything.  His consultant tells a good story and she makes soothing noises but thats all they are.  He has wks left.

The steriods they started made little difference to the clarity.  His mobility is slightly better but since radiotherapy isnt an option little point in giving him the steriods.  All meds but his essentials have been withdrawn or hes being weaned off them. 

So in no time at all my Dad is going to die.  I’ve passed denial, passed the idea that they’ve made a mistake & I dont feel any anger.  I just feel sad that my Dad is no longer going to be here.  Not just for me but for my Mum & my sister.  I’m going to miss so very may things about him.  I already do.  He’s not really with it.  Hes seeeing things, people who arent there.  Its funny in a tragic way.  I’ve started to just agree with him.

My Mum left to speak to his care nurse.  I lean in and ask, Dad where are you going.  It was a bigger question than maybe I realised.  He looked ahead and said “I’m going to that big school in the sky”.  I looked away.  I could feel the tears welling up & it was all I could do to not cry.  Maybe he realises what going on?  In his moments of clarity he realises something is seriously wrong?  It was such a quick moment.  I squeezed his hand and he looked at me as if to say what lol.

Ok for this place only I feel like my world is caving in.  I feel as if my world is collapsing and I cant stop it.  I know my dad will see my daughter.  Wherever Heaven is he’s on his way & my daughter is already there.  I so want to tell him to tell her I love her & I dont have long before I whisper that in his ear as my final goodbye.  I’ve no idea how to stop the ache that I feel.  Its like a big hole is starting to appear and I cant stop it.  I dont want my Dad to leave me and yet I know, he cant hold on.

jacqui

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Dont say it

My Dad’s consultant telephoned me this morning.  In the middle of a busy shop she’s telling me she had spoken to my Dad.  He didnt want to here his scan results and told her to telephone me.  Im holding my breathe as she tells me she has the ct results.  I ask is it a stroke to which she replied.  No, its more serious than that.  You know when your head is pounding, you feel your heart aching and you know you cant run, no matter how much you want to.  Your Dad has multiple tumors and I feel the light going out.  He has a 6cm tumor on his frontal lobe which explains his symptoms.  Shes not had any neurological experience so sent his scans over to The southern general, the closest neuro hospital.  There are at least 4 or 5 others that are visible but she cant tell whether they are malighnant or benign.  There is swelling in his brain and this is causing pressure thats pressing on his large tumor.

I know in the months to come I will be able to read this entry and remember this time.  I feel like its the beginning of my Dads last journey.  I hope and pray its not.  Until we find out tomorrow I have a lot of tears to cry.  I dont feel grown-up enough to deal with this.  I dont think I will ever be ready to let go but I guess there may not be a choice.

jacqui

Its okay

Its funy when you parents are elderly.  They’re directed into a geri ward and its okay for them to sleep there days away, they just leave them.  It doesnt matter to the nursing staff that a fortnight ago they slept for 7hrs, always at night & never during the day.  They’ve changed my Dads meds.  They’re going to be doing more ct scans tomorrow and since hes on a fluffy white cloud who’s caring.  When we visited yesterday he was wearing hospital pj’s.  They hadnt been buttoned up, they shouldnt have bothered putting the top on.  He had obviously had an accident,  his trousers had the obvious tell tale stain on them.  Its maybe a good thing that they had dried.  Seriously, this is how we care for the elderly??

If it wasnt my own parent I would weep.  The nurse in charge of his care had tried to get him to lie down during the day rather than sleep in the chair but he wont so hes just left.  Its actually sad seeing him clueless.  Its frustrating when his urse is trying to give information and my mother butts in with her own medication story.   I’ve read every article written about delerium.  My heads spinning with what they can do and it all comes down to finding and treating the cause.  Doesnt help that there are only junior drs attached to his ward at the weekend so his nurse is just ticking time.  Thats the best we’ve got.  He’s no longer having longish period of clarity and I dont see the point in visiting when all he wants to do is sleep so I’m taking a day off.

Back to work tomorrow and a bit of normality for me.  Kids are now on there summer break so they’re going to be here, always lol.  I’m finding it difficult to consentrate on house stuff.  I havent put my washing machine on for 2 days now and I should be using today to catch up on stuff butI dont seem able to motivate myself.  I keep reaching for my phone and its not here lol.  I’m so annoyed with myself.

  Isn’t it funny how we tick along then something happens that encompasses our thoughts almost every moment of our waking day?  Makes me wonder what I worried about before.  At least I’ve managed to do an online shop so at least the kids will be fed next week.

Track of today is If I could by Seal.  Its on my ipod but dont listen to it often.  That was the first track today so its in my head.

jacqui

Teletubbies

Random name but heh.  What a quick week its been.  Another one of my daughters is leaving primary school today. I dont think my middle daughter has ever went to school on the last day of term before.  Shirt signing for her today and she’ll be done.  Eldest daughter came back from Italy this morning at 1am.  No sign of any tan just burnt skin everywhere.  We did stay up until 3am when I fell asleep on the sofa.  Lots of stories still to be heard no doubt.

Got a phone call from my mother yesterday afternoon.  Could you come round, your dads fallen and we cant get him up.  He hadnt fallen, he had slipped off his chair after his lunch and was sitting up waiting to be put back on his feet.  When I got in with Mr B Dad was up in 3 sec.  My mother and there warden from the complex where they live had decided not to attempt to move him.  The logic being since my Dad is over 6ft and both of them just over 5ft they wouldnt be able to manage it.  Females, whatever.  My mother tells us my Dad is fine and waves her hand in her dismissive fashion.  I tell her to phone the Dr anyway.  She goes into her bedroom and comes out passing the phone to my Dad.  He answers the questions telling the Dr that he can stand and walk unaided.  I say no you cant and Dr tells my Dad to give the phone to me.  Thank god its my gall bladder doctor who now knows me well.  He says I can come out or get him taken to Monklands which is the nearest general hospital.  I say the hospital is a better idea, he would get assessed and we would know what was going on in his head.  A while later ambulance arrives.

3hrs later my mother phones to say they have done some tests.  The Doctor he seen confirmed he is suffering from delerium no shock there and he has a weakness caused by who knows what.  His bloods have been done and the hospital think he has an infection caused by who knows what.  The sudden weakness could be caused by a number of things including a stroke, tumour, brain haemorrage.  I’d hold out for a stroke I think.  My dads still on his fluffy white cloud and yesterday was Sunday in his world but he at least knew who I was.

Turns out that the fall he had or slip wasnt mentioned to the hospital.  A short male nurse I asked a question of got defensive and went to aggression.  He didnt like me pointing this out and terminated the conversation with Whatever.  Ok, I walked away calling him an ineffectual prick & if he didnt hear me half the visitors did but I think just because your patients are elderly doesnt mean they should have any less care or attention.  I didnt bite back because he has my Dad in his care.  My Dad thinks he’s 47yrs old. We worked together at that time and told the nurse I took him up to the ward and got quite annoyed when she told him he was wrong.  I also made his dinner, own the place where he’s staying and he expects a discount when he leaves.  I should get better staff o and get the toilet door fixed!!  Its quite funny in a sad way.  My Dad however is not in distress.  I say hes on a fluffy white cloud and he seems to have very brief moments of clarity.  I say he’s back in the room briefly indicating that hes in the present and out of the room when hes on his cloud.  Sadly the cloud is winning.

25/06

So discovered last night that when I left the hospital last night I had left my telephone on the small wall I was sitting on.  I tried phoning it and call wasnt picked up.  Its an old phone, 10yrs and Ive never changed my number.  My entire contact list is in my phone.  I would cry but there is no point.  The hospitals lost property dept has got a place were items can be deposited over the weekend but that cant be checked.  I had put my phone down to clean the wall for a patient who was still there when I left so I’m hoping she handed it in and its in the box.  If not well, shit happens.  My fingers are crossed.  There are still some decent people in the world and I’m holding onto my hope whilst trying to be realistic.  My sim has a stop on it so it cant be used but if it turns up I can activate it again.  In the meantime I’m using a very scary sony ericcsson which doesnt have predictive text. WTF is abc about?  You cant double letter without waiting an age. The ringtones are not the same as my LG.  I’m old and I like familiar. I want my phoneback.

Not sure what going to happen with myDad.  I did express my concerns about my mother so I am down as his next of kin.  My mother doesnt need to know this and I hope she never will but right now my concern is about my Dad and my Mother just doesnt remember what shes told.  I dont actually think it would be safe for my Dad to be placed in my Mothers care and I’m sure she couldnt look after him without outside support.  My Mother is considering moving him to a private hospital & that would be her call.  I certainly wouldnt have the funds to support a move like that.  Its a sad reflection when you dont trust medical professionals to make sure that the very basic of needs are being met.

Ok music for today is the sound of silence.  I havent had music in my ears for however long and my head is silent.

jacqui

So you’ve had a bad day

Today has not been the best of days.  Work seen two of my little people having a squabble about a bag of doughnuts.  One brought them in for our team, one was accused of eating them and I get caught in the middle.  One is a 50yr old woman, the other a 20yr old bloke.  And she tells him to grow up.  Its a fkn zoo not a workplace.  We have another who has given up smoking who having given up cigs has changed to an electronic one with no nicotine.  She spends have her shift with her arse in the air bent other to check its charging.  Not a great look when your supposed to be serving the bloody customers.

I’m really hacked off.  House is tidy enough but my children including the eldest seem hell bent on breaking one another.  I’m trying to cook dinner, I have the washing machine on, the tumble drier on, I’m trying to iron clothes for them and all I can hear from upstairs is screaming & shouting.  I’m quite irked by it all.  Mr Bean thinks its a breeze.  O fkn course it is when all you have to do is feed your own face.  Dont think about anyone else, just see to yourself.

Wish I had a night out last night.  My problem is I am always here.  I never get away from them.  Okay, moan over.  Mr Bean is somewhere, I dont actually care where but I know hes here so I’m off for a bubble bath & a very early night.  My little people can k8ill each other cos I’ll have my earphones in and I wont hear a thing. O todays track is Nickelback, Burn it to the ground.

jacqui

 

morning shower & too much information..

I dont like showering in the morning.  A bath I can cope with but wet, soggy hair I dont like.  Anyway it was smear day today so had a shower.  Went to get new hairdryer & suddently remembered my new hairdryer is in Italy along with my eldest daughter.  A quick sod it and my hair is on top of my head.

I guess no woman likes these things.  I get the how many children have you had? 8.  I get a look above her glasses and moving onto when was your last period.  O fk, I know I still have them but can I remember, my brain has went into panic mode.  Ah but I put it in my phone.  How silly must I have looked but heh she got her info.  The indignity went on with the need for a longer speculum & I always get that followed by a o you have a tilted cervix; yep, knew that one too.  The new one was could you just move up and put your head over the top, your rather tall and that makes it awkward.  Awkward?  For her?  Bless the nurses of this world haha.  Smear done and all I have to do is wait 6wks for the results. 

So I had work, above thingy, a quick visit to my Dad and the girls beds to change, other washing, dinner.  I know I should be able to drop at least one of those things but heh, I couldnt.  I also had a mountain of footie stuff, jeans and jackets used yesterday that managed to bring most of the rugby fields muck home.  That little lot is still outside on the washing thingy and if it rains then its tumble drier I guess, hang the expense.

So washing is taken care of.  Work done although I’m acting like a cat on a ho9t tin roof whatever that is?  Im sarcastic and I’m sharp.  Those are my better qualities I told them.  I went to see my Dad who despite it being after 1pm he was still sitting in his pj’s and had just fallen asleep.  He did waken up when I went in but I didnt stay long.  He looked ok, still confused but at least he had had lunch.

Girls beds and a bad mood looms over me.  The floor is a mess and I’m not cleaning it.  I step on top of everything and just get on with it.  No conversation despite the girls having a look.  Think I must shout usually but whats the point.  I have still the bathroom to clean.  Foolishly I had assumed someone would have taken yesterdays towels downstairs.  Silly me, my name is somebody so this morning the floor is awash of dirty towels whilst half empty shower gel, bubble bath bottles, shaving foam, doedorant is taking up pretty much every available surface.   I just get my own shower stuff and see to myself, much the same as everyone else.

 

 If I hadnt seen it I wouldnt have believed it and I’ve still to tidy it cos somebody has to do it,.  I could hang out in the toilet where I keep a spare toothbrush but it’ll still be there waiting on me.

I’m supposed to be going out tonight.  I cant remember the last time I looked at my bed never mind slept in it so not sure I can be bothered and since I’m not much into drinking perhaps its a night for a bubble bath and a cup of peppermint tea.  Fk someone stole my enthusiasm or was it all a dream of youth.

Todays track is a weird one Chris Daughtry the ghost of me.  I sometimes sing this track when I’m asleep.  I did it when I was in hospital and one of the nurses sang a bit cos she thought it was funny.  If I have a dream about someone I sing it.  I thought I just did it in my head but I do it out loud.  Its a track about seeing someone from your past & not worrying about it.  Cool track.  It was either that or New York, New York.  Thank you very much to the guy who was singing it this morning, nearly got stuck in my head.

I’m now off to try and remove a little virus thats infected my pc.  Blooming kids are fantastic at logging into Facebook, what they’re not good at is virus scanning before they turn it off.  Thank goodness for Panda Cloud, just hope it works..

jacqui

 

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Under pressure

Pressure, its a weird thing.  I had work yesterday.  I also had to buy my euro’s, go to a Primary 7 graduation & interview 3 potential staff.  I still have a house to run, washing to do and a child off to Italy tomorrow who hasn’t finished packing.  It was a very long day.  I had hoped to visit my Dad.  I had seen my Mother in the morning who doesnt paint a very positive picture of how my Dad is coping.

Anyway pushing that to the back of my mind I managed to buy my youngest daughters balloons for her birthday.  10 balloons it seemed to take forever for the guy to fill & add the weights to.  I looked silly crossing the mall with them, all pink and princessy lol.  At least I managed to remember to buy them.

So birthday was moved to today since boys have a footy thing tomorrow.  They were told Thurs they have one today as well but at least eldest daughter is here to share the day with her.  I have my school washing to do.  Someone helpful loaded my washing machine yesterday and instead of dealing with it just left it in machine and so its still there.

Today is a quieter day for me.  I get to stay home, tidy up and do washing.  Nothing stressing and only 3 girls home.  Much as I love my 4 sons they make oodles of mess, noise and smells, a day without them now and again is pretty good.

So yesterdays music track was Maybe Tomorrow by the Stereophonics.  Its a bit of just hold on and find home for me.  Its a soothe the ears track.  Todays track is Nickelback If today was your last day.

jacqui