I need a hug

Nefertari

Hi everyone, I thought I was coping pretty well considering the sucky state of my family's health at the moment.  But today I've been thrown yet another curve ball.

My surgery is on Friday 24 th and I was scheduled for the lymphoscintogram and needle localisation procedures to be done on the same day - pre my afternoon surgery.

Today I get a text reminding me of my appointment in radiology for 23/5/19 - what,  that is news to me??
I believed it may have been sent to me in error as it usually has my name on it and this one does not.  So I rang and no it's for my lymphoscintogram! 

I have neuropathy and my feet are dodgy at best and the numbness has spread to my right thigh both front and back.  Hubby is taking me on Friday as my car is manual and I have been stalling it haha. I cannot gauge how hard Im pressing down on the clutch, safer not to drive at this point.

I went into a complete meltdown on the phone, I could not talk.  I finally stammered out it's not fair to change it so late in the game and also it means I would have to rope someone in to taking me and wait around till I'm done. I have two family members in hospital at the moment and hubby and I were doing a final visit before my surgery. 

She is going to "try" to get my original appointments back as she cancelled that one, what should I do? Stick to my guns?

Just when I I thought all the frigging me around was over.

arpie

  I am so sorry you are going thru such a bad patch @Nefertari - wishing you all the best for your surgery!
  
Gosh - that was rude just changing your appointment without discussing it with you first!   Definitely stick to your guns! I reckon.  You had it all organised efficiently - and THEY stuffed it up.  So THEY can 'fix it up'!   They don't always realise the emotional damage they do to us when they muck around with appointments & things!   

Take care & BIG HUGS coming your way xx

Blossom1961

@Nefertari Absolutely. Big snugglehugs on way. Make sure you catch them. If you miss, I will send another lot. I have heaps to give away and I love to do so. Stick to your original plans. Tell them you cannot change as you have no one to take you.

kezmusc

Hi @Neferari,

That just stinks.  Do they realise they normally do this the day of surgery for a reason? Jump up and down for sure.  There is a two day protocol but depending on the surgeon some prefer day of some don't mind teither way.   I would be contacting your surgical team or breast care nurse and see if they are happy with the change. They may have a bit more pull with getting things changed back if that's what everyone prefers. What if you didn't get the text?   They should have phoned you as soon as they wanted to change it.  Grrrrr  assholes.
 
Hugs lovely.  
xoxoxoxo

AllyJay

Big hugs @Nefertari. Mention dollars and they'll start hopping. Tell them than you don't have medical clearance to drive yourself, and that you had set arrangements for a driver for the date and time as arranged. Advise them that as you no longer have an available driver because of their stuff up, you'll need them to pay a cab voucher both there and back home if they are unable to honour their original arrangements. Watch them very quickly fix their problem. You have enough of your own problems, without having to help them rectify theirs. Ally.

Nefertari

Thanks for the hugs and yes I did feel them and I will take as many as you can give.
 
I cannot believe how low I feel now, it is just another stuff up in a long line of them and this one has pushed me to the edge.  Of course she has not called back, how ironic?

So I am left in limbo overnight to have a sleepless night and find out tomorrow if I'm lucky enough to have my original appointment back. 

As if BC and all the treatments, scans and side effects aren't enough to cope with you have to have incompetent unnecessary stuff ups.  I can't get any one to take me on the Thursday, so I will stick to my guns. I feel worse as I have frightened the cat, she was sleeping on the bed and I did scream out loud and use a few expletives!!!!! Had a good cry and now am angry.

lrb_03

More hugs coming your way 

That's just wrong!!!! Stick to your guns, tell them that you can't get there, don't bother too much with the why, it'll go over their heads. 
And again, get in touch with the complains / consumer feedback / engagement or whetever they call it and get them on side. They're there to help you

Take care xo

Riki_BCNA

Hello @Nefertari please don't hesitate to ring the BCNA Helpline to speak to a cancer nurse for support too on 1800 500 258. Take care of you.

~Millie~

Hugs 💕💕💕💕

Scaredycat

Hugs 🤗. I’m so sorry that this is happening to you. I hope they sort it out ...... just tell them that you can’t get there at such short notice as you have everything planned for the day of surgery. It was very thoughtless on their behalf.
please speak to your cancer nurse. Mine has been great with sorting things out when necessary.

Sister

So, they are messing you around again?  I'm really sorry that you have had to deal with this - I don't know which hospital you are dealing with but they are showing a complete disregard for patients.  Advise your doctor about what is going on.  If you are unable to get the appointment changed back (and it is possible that they may not be able to do that, now), insist on access transport there and back.  I'm sure they can find a couple of cabcharge vouchers for this purpose to alleviate the problem caused by their error.  You made arrangements around the original appointment and you were not consulted about the change and you have no way of getting in.

Big hugs coming.

jennyss

Dear @Nefertari

Nefertari

Thanks for all the hugs and wise words, this forum has been a lifeline in that way.  Still waiting on an answer, on the phone now waiting......will let you know 

Nefertari

Well, good news my original appointment has been honoured. All my procedures and surgery are back on Friday 24th.

Get this, when I rang Radiology this morning at the Public Hospital they said I was NEVER booked for the Lymphoscintogram at the Public Hospital!!  I just got through explaining to the dude that I have Neuropathy and can't drive, he suggested I go for a nice walk and wait for her call.  Are you stupid?  I can barely walk to the toilet without stumbling.

Finally in a roundabout way I got put on to the Surgical Services girl who I spoke to yesterday and she nonchalantly told me it's all sorted, I'm back to the original plan. 
I said why didn't you call me to let me know? she denied that she told me that she would.  Then goes on to say she was there till 6.30pm last night and possibly didn't get around to it? So when / how would I find out?

I rang the Breast Care Co-ordinater, she is  still away till mid June,  I got on to another breast care nurse (funded by Mc Grath Foundation) and she was wonderful.  She gave me the number of a breast care nurse near me and they both encouraged me to write down my account of my BC journey and the stuff ups.  She is going to visit me in hospital. 

But for now I'm taking today and tomorrow off from the BC nightmare until Friday.

Once again thank you everyone, you will never know how much peace you have given me during this terrible time.  Hopefully things will improve after the surgery. 

JannyB

Darling, we Sister Warriors are here for you always.  I’ve just this minute said a prayer for you for Friday x Jan

Scaredycat

Yay, awesome news. Enjoy your two days of peace. I’m wishing you all the best for Friday.