*update.
Been in A&E since 10.20 and have just seen by v. laid back, half asleep uninterested doctor who didnt seem very bothered. Said my bloods are ok, white cells ok. I eventually said that my oncology team had said I’d need a dopler scan for blood clot and he perked up a bit and asked me for their number to speak to them.
He came back, said he’d spoken to my oncology team and his consultant here, who have decided to send me home with blood thinners and have me back in later in the week for a scan to check for blood clot. Seems a bit arse about face to me.
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Eh? They’re giving you blood thinners without checking for a clot? Agreed, seems backward way of doing things 
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What did he say about the swelling?
Just that it didnt look that bad, but could be an upper arm thrombosis, the treatment would be blood thinners anyway, so get them in me now and back monday for doppler and pos another scan
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I hope they’ve set your mind at rest so you can be relaxed about it till Monday. They must know what they’re doing. In an ideal world we wouldn’t have a health service that is only fully functioning Mon-Fri 9-5.
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Off to buy compression socks on the way home! Someone suggested them
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Not sure if they will help much as swelling in my arm / neck but i suppose it can’t hurt. Should i sleep in them?
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lucky duck sorry to here the doctor was quite dismissive did you get the name? You should have been scanned for a blood clot, when I had a suspected blood clot they scanned me to try and locate it then I had to do daily injections for 3 months this was just after finishing chemo. Sorry your trust hasn’t been more thorough with you. Don’t be afraid to ring your rapid response team again if you don’t feel quite right keep safe 
Shi xx
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Thanks Shi, i was suprised that they didnt just scan me today, but maybe no-one available at the weekend. I dont know what to make of it. But when I got home I rang the 24 hr team again and updated them. They said not to use compression stockings as they should be prescribed so I’ll return them. . Just to carry on as normal at home. Hoping monday comes around fast and i can get some answers to fully reassure.
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Have they sent you home with daily injection to do? If you don’t feel right at all at any point do get to a&E and get your rapid response card out you are supposed to be seen within an hour sending hugs Shi xx
No i’ve Apixaban tablets. No alert card for this although it says i should have one in the paperwork. And they didn’t have enough so i pick up the rest when i go back on monday. Bit of a shambles really.
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Lucky duck don’t be afraid to push for all you’d feel more comfortable with don’t get fobbed off you can go to your trusts pals office too and have it noted so they can investigate Shi xx
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Thanks Shi, the swelling has gone down a little although still sore around neck, collar bone. I measured my arms this morning, 2cm diff in left to right wrist. I’ll just monitor the situation accordingly. Feel 104yrs old today and look it too! Sick of this sore throat and manky chemo mouth. I did wonder if the Difflam they gave me could have caused the swelling. You read these leaflets and everything they give you can give you something else. Constant fighting of fires, but they didnt even ask me what I was taking, so hopefully they could see it on my records.
A&E was a sad reflection of the state of our NHS. At least 4 beds in the corridor with people waiting hours. Staff on long shifts, tired and uninterested. It’s a shame and makes you have to be so on it and self advocate.
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Oh my goodness how much happens in 5 days. Just read through and caught up.
@rosa1 wowzer having a baby and all this going on, what a rollercoaster for you and yours. Enjoy those cuddles and that lovely baby smell. A September baby, she’ll be the oldest in her year like my kiddo.
@sharlou I’m sorry to hear the cold capping was awful and you’ve had to stop but like you said at least you got some under your belt.
@luckyduck1 bloody hell, what a weekend I hope things have calmed down and you get some more answers tomorrow. 11hrs in A&E horrid I’m so sorry to read that.
Who ever said about the cult and being indoctrinated my husband’s said the same. Although he said the groovy gang or he’ll say ask the groovy gang. Did make me laugh.
And someone mentioned Christmas trees I have to confess I do have trees up. They are my happy place, it’s my birthday at Christmas so I’ve always been a Christmas nutter. They make me smile and make me happy and when I feel alright usually wk 3 I get a tree and decs up.
Flight back from Spain was better than the flight out. The Spanish airport staff were so much more understanding and compassionate. Didn’t make me take my cap off and padded me down rather than send me through the scanner.
Happy Sunday everyone x
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I’ve got round 3 of EC tomorrow my bloods came back as OK but my calcium was low has anyone had that? I’ve got to take calcium tablets for 3 weeks.
I know someone said about being nervous of the Docetaxel I think it was @luckyduck1 I am too. The EC has been better than I thought it would be strange symptoms but managable from most aspects. It’s the unknown again isn’t it? I did ask the the oncologist about symptoms of D and she said pins and needles and aching joints were the main ones. I think in hindsight I wish I didn’t know. I cannot believe round 3 is tomorrow and I’m half way through, expecting another slow, steady week and like others mentioned my kiddo off for half term. One of her friends is having a sleepover Halloween thing so at least she’ll have some Halloween shinanigans to look forward too.
I’m still having issues with my arms and shoulders. I’ve had two lots of surgery on the right side and picc in the left. My right scapula is popping out (looks dislocated) when I raise my arm and the my left arm I can hardly lift above elbow height. I’m booked in to see a physio and my surgeon has booked me in for an MRI (waiting for date). I’m trying to keep my head in check but it’s hard even when they say it’s nothing to worry about. Does anyone else feel like it’s a domino effect of things?
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Fighting fires, as soon as you put one out another pops up! 
hope they can help with your shoulder. Im hypermobile and have had so many shoulder surgeries so I feel for you on top of everything else. Sending gentle hugs x
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Hope you had a lovely holiday @nicnac17 and glad to hear the return leg was a bit better!
@luckyduck1 I feel this about fighting fires! I called my line last night as I’ve had the heaviest period of my life the past 3 days, (after thinking chemo had stopped my periods!) was worried about the excessive bleeding & wanted some insight from an oncology doctor as to whether I should continue taking the blood thinners which are obviously having an effect. They wouldn’t / couldn’t say anything other than to go to a&e (on a Saturday night!) & I just didn’t see the good it would do (my local hospital has no oncology unit & I know from previous experience I would have sat for 5 hours plus & gained very little answers and inevitably come out feeling worse). I feel like I made the right call for me, just annoyed that there is no scope to have telephone input from an oncology doctor it seems. (I’ve still only had very little contact when with my own oncologist so not sure why I’m surprised).
@nicnac17 round 3 for me on Tuesday. Trying to stay positive counting them down but I feel like I’ve been doing this a whole lifetime now! X
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I knew someone was same stage as me but I couldn’t remember who and 1333 messages later wasn’t going to scroll through. Completely agree with not wanting to go to A&E and I’m surprised an oncologist didn’t call you, I thought that was the whole purpose of the helpline? I cannot get over how different these trusts are my helpline when I called spoke to a nurse then an oncologist did call me back, why is it so different? Do we not all have the same number? How does it work?
Do you have an email for your breast cancer nurses I’ve found them helpful too and respond really quickly or give you a number for someone who can help.
Good luck for Tuesday, I’m just hoping it’s all the same symptoms as the other two rounds although the difference has been longer for feeling right. The first round I felt human by the Saturday, second round human by the Monday so it seems to be taking me longer to feel right. Are you on Docetaxel for your next 3 rounds?
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Me too, my GP had to refer me said I’d be waiting 7 months so organised a physio at a wellbeing clinic here for cancer patients (I get 8 free hours a month of wellbeing treatments). So in next Monday then hospital called me Friday and I’ve got an appointment with the NHS physio the following week so now I don’t know what to do? Go to both and decide I suppose. I’m managing the pain but the inability to carry, hold, move anything is so debilitating and frustrating.
Thats tough, all this extra worry. More questions than answers for most of us.
I’ve just had a well meaning friend telling me I need to eat Kimchi and Kombucha but im still confused by it all. Hospital said no to probiotics but I’ve read they can be good so none the wiser.
Sounds like a lot if us are struggling with this halfway point but we are all doing so well really under the circumstances through all the uncertainties and we need to remember that. We need to be kind to ourselves and just ride it. Sending love and thanks out into the universe to you all for your kindness, compassion and humour on this wild ride of a journey that we’ve all been thrown together on. I appreciate you all. X
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