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.

Hi Irb_03, it was a very long day and my boob was most uncooperative,probably from anxiety ;) I was so scared of the lymposcintogram procedure that I barely slept the night before. It was not helped by someone ringing the night before my op and passing along her friends comments that it was the most "excrutiating" thing she has ever experienced. >:) IT WAS NOT.By the time I got into the room, I had verbal diahorea about how anxious I was and could I have a valium PLEASE!!The technician (is that the right word?) was beyond brilliant, she explained everything and gradually I started to calm down. She also said everybody is different, some have said it was okay, some a bit uncomfortable but bearable and others said 9 out of 10 pain. She bought in another brilliant girl who held my hand, chatting away and I barely felt the injections, for me just a short sting like a local before biopsy.My boobs however were very uncooperative and they had to put me back in three times as the stuff was not moving, despite massaging, walking laps and lots of time!! So they sent me in for the needle localisation by ultrasound, by this stage I was relaxed and forgot about the valium hahahaThey couldn't find the tumour or the marker by ultrasound, again my stubborn boob. Three had a go and nobody could see either, not even the doctor.So back I went in for image of lymphoscintogram, yay finally it moved and they found my sentinel node etc!Because the ultrasound was a fizzer they did the needle localisation by mammogram, which took longer but was okay. Three girls and me trying to position my uncooperative boob. Not painful just uncomfortable as a mammogram is anyway.The worst thing was having to raise my arms above my head for the three attempted images, sore shoulders.Anyway, I survived and 4 hours later I was transported back for surgery. One good thing about the length of time, I had no time to worry about the operation.They booted me out of hospital less than 24 hours afterwards, I was happy about that because my roomies kept me awake all night.I told you I had verbal diahorea, anyway Im a bit sore mostly under the arm but today Im better than yesterday xx

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.

Hi @Nefertari, just thought I'd pop my head in and ask how Friday went, and how you're feeling?Hope it went smoothly

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

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.

I need a hug | BCNA Online Network

Riki_BCNA
Member
6 years ago
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.
lrb_03
Member
6 years ago
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
Nefertari
Member
6 years ago
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.
AllyJay
Member
6 years ago
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.
kezmusc
Member
6 years ago
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
Blossom1961
Member
6 years ago
@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.
arpie
Member
6 years ago
:( 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

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