Hi, I'm Shirley and I've been diagnosed with a cancer of unknown primary.  Tests so far have been unable to determine the primary - I've had ultrasound, fine needle biopsy, CT scan, MRI of breasts, and a PET scan.  On Friday I had the lymph node clearance from my left armpit - not fun.  Currently at home (with a broken boiler - brrrr) recovering.  Doing ok for the main part I think but have a lot of swelling at side of breast but they did say it was more complex than they thought.  Not yet sure of the details of that one but hope to find out more when I see doc. 

Surgery was Friday and one of the doc's team saw me later that afternoon and said drain out and home.  I noticed nurse's face and she came back few minutes later and said no, better keep drain in as was longer op than thought and stay overnight as I would likely be in too much pain to manage at home.  I agreed.  I can't swallow tablets so was on soluble paracetamol and liquid codeine, then morphine.  Overnight they couldn't give me liquid codeine as apparently the ward doesn't stock it (the night nurses didn't know what it was despite me asking them to check my records) so I was just on paracetamol as my tongue had blistered after the oromorph (turned out blister due to anaesthetic tube) so they didn't want to give me more of that.  Sat nurse came in in the morning and said was likely to have been the tube so gave me more oromorph and we gradually got pain under control again.  Then drain was taken out and because of dressing placement the nurse had to take my dressing off too and replace it after the drains came out.  Anyway, got my meds and it was hometime.  Nurse said she was pretty sure that the dressing came off after 48 hours and said there'd be steristrips underneath and I could take those off too.  I expressed surprised at that and she said she'd check but never did. 

I decided not to remove dressing until I'd spoken with the breast care nurse, which I did this morning, and she said yes, remove dressing but leave steristrips in place! I'm seeing them on Thursday and hoping all is well.  Didn't see physio because by the time I'd got back to the ward they'd done their rounds and they don't work Saturday so have been moving as best I can and referring to a printout that I got from the ward, along with looking at videos on internet.  Arm pain not too bad, though it does feel a bit heavy and the pain is mostly in the swelling in the side of my breast. 

Has anyone else had this done?  I'm already climbing the walls as I don't really do 'resting' but am trying my best not to overdo things.

Looking forward to chatting with you and getting to know you as we try to beat this disease.

Shirley