Here Goes
Comments
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You should put that in writing and send it to them.1
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ok. 3/4 x AC down. Given up on port working. Friday night I noticed my neck was hurting when I moved around in my sleep. 7pm Sat night, I called the Onc Emergency number and she says pop into the ER. Sent home pretty swiftly being told by the DR he cant feel anything swollen and if something was going on my arm would be swollen and hanging down. So I left with my tail between my legs. (quite happily cos I am so over hospitals). Came home, went to bed. Woke up 7am. Next still very sore and swollen still but this time my arm is swollen too!!! So wanted to just go back to bed and forget it all but decided to call Onc Emergency again and she said to get back to the ER. She said if I couldn't get anyone to react, I should go to her at the Cancer Hospital (Same hospital but difference entrance). Rang the ER before heading over. They were ready for me when I got there. well as ready as any ER can be. As it was there weren't any people in the waiting room.
This time got new shift of Dr's. One was about to end his shift when he looked at my file and jumped too. Called Radiographer to come in and handed me over with strict instructions to new Dr on shift. As he left he said he suspected a blood clot and couldn't understand why I had been sent home the night before. No stress. Cant change that. I just needed to be reassured that coming back was the right thing to do. Most Definitely he said. He shook my hand and said he hoped he was wrong.
He wasn't wrong. I finally got a dx of DVT in the jugular vein. 7 hours later. in that time had ultrasound and the usuals obs.
After speaking with an on duty Onc, they have sent me home to self inject every 12 hours, Clexane (blood thinner).
Before leaving the ER I asked what I should be watching out for. More pain they say. They are hoping the blood thinner will help the clot break down.
I have to admit I am a bit worried. Blood Clot near the brain and heart??
On the good front, only 1 AC left on the 4th of September. I have my first appointment with Rad Onc this Tuesday, to get the ball rolling once Chemo is over.
Hope you all had a lovely weekend. The sun was shining here! Unfortunately didn't see much of it.
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Shit bags Jen! That's a bit scary, being sent home when you know something isn't right is really off putting. As you say, what's done is done, but it's small wonder that some of us turn into right battle axes after a couple of episodes like that. The clexane is a bugger, I hate injecting myself. Absolutely hate it. I hope everything settles down. Keep riding them about the clot, Ive had a couple (thankfully not in my neck) and the tendency seems to be to leave you on the thinners indefinitely or until you crack it and ask for a review. Mxx0
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Thanks everyone. I'm hoping I'll be ok injecting myself. I actually did feel it as it was happening (thanks to a rotund belly). I hope they don't keep me on this forever?? I have to get blood tests one day this week, 4 hours after am injection. This bloody port in my arm has been nothing but a nightmare.0
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@TabooGal , Bruising...18 months of clexane twice a day makes 1080 jabs in the tummy. One bruise on top of the other despite alternating sides as best I could. I had a frozen right shoulder at the time, and couldn't reach the other side, so did some left handed which gave me the heebie jeebies. Off the clexane noe, and back on the warfarin which I've been on for over twenty years.
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Bugger! @taboogal It doesn't leave you feeling very positive, does it? @zoffiel is right - you have to be your own advocate but it's bloody hard to do. I've been lucky to have my husband by my side at most things, watching everything ever since my port played up at the first try. If they can't use the port, when is it coming out?0
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OMG! @TabooGal - you've been thru the mill, that is for sure. Glad that Dr just finishing his shift stayed on to check you over & give strict instructions to the followup Dr!!
@AllyJay - OMG .... poor you!! How come you have to be on it for that long? Did you have a history of blood clots before this?
All the best ladies xxxx
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Hi there @arpie , yes I have. One of my autoimmune diseases is called antiphospholipid antigen syndrome which causes me to form clots. Have had four DVTs and also one massive pulmonary embolism in the past. Came off of the warfarin for the duration of chemo then for the surgery and for almost a year thereafter. During that time I was on the clexane, but now back on the warfarin, which I will be on for life.
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