After Lumpectomy on 4th January

Regarding the change from what the doctor said at the beginning, this is quite common. They formulate a plan, but they keep monitoring and changing based on how things progress and new information coming in.

Regarding the fluid, ask for it to be removed. I had fluid build up removed after a mastectomy four times before it settled, and at some point I had to work through a nurse's resistence to get it done, she was surprised at how much came out when she did it.

Thank you for your reply GreyCats. If the fluid shows no sign of going I will ask them to aspirate it. It’s very off putting hearing the fluid moving around every time I move. 

Yeah. I didn't mind that so much, but there was pain every time I tried to put that arm next to my body, and that was an issue. Sometimes you have to insist on what you know you need.

Hi , I had lumpectomy in September ,on both breasts, so no mastectomy however similar story to you in the fact I had a build up of fluid on my left side which also had infection . 
Had a near on argument with my BCN who insisted my pain needed to be “ talked about with a pain counsellor “ rather than it being an infection and treated appropriately. 

Thank god I found the strength to oppose her and got an appointment with my surgeon . They diagnosed infection and drained 3 bottles of fluid !

Please insist on fluid removal if that’s what you feel . No one knows your situation better than you .

I do feel angry sometimes that we have to be at our strongest when at our most vulnerable .

Hope all goes well moving forward 

Penelope xxx

These Breast Cancer Nurses are something else aren't they ? None of mine noticed my haematoma despite several visits.They all said all was healing well, so I thought it was. I not only had an infection, but was fainting as a blood vessel was slowly leaking. Also, when Radiologist finally saw it, once it had become an emergency situation, it was the biggest haematoma she'd ever seen. One of them didn't believe clinically that I needed Physio, but the Radiotherapists giving radiotherapy disagreed with her thank God. It is difficult when feeling ill to insist on things being done properly. I wish these BCN's could understand how difficult it can be for people unable to even remove their clothes without difficulty - sometimes it was like talking to a brick wall.

That's exactly the point. I have had experience with both ends of the excellence scale, the very top and the very bottom. At some point they tried to team me up with an awful nurse. I had a blazing argument about it with the woman in charge of the nurses, to the point I told her I was refusing to work with that assigned nurse regardless of anything she might try and tell me. They had no choice, they moved me to someone else, and that someone else is one of the best people I have worked with in over a year of dealing with constant treatment.

Additionally, I found a great Macmillan nurse, separate from my usual oncology team, who is a magician when it comes to solving issues that I find tricky by my own powers. She is definitely not the, "let me hold your hand," type, rather slightly cold and very effective, which is exactly what I need. 

I have at times threatened to contact their Chief Exec and I may still make good on those promises, because while some aspects of their care are excellent, there is a common thread to their failures that I have recognised and which is a systemic failure. 

I fully agree with you, it shouldn't be this way, and people who, "always know best," even when they are just making unfounded assumptions should not be in those roles. But, things as they are, we must keep advocating for ourselves, and when we don't feel we can, I would advise to have a friend or family member on the phone with you during the appointment to lend support and perhaps speak on your behalf.

I’m not in any pain, so that’s why I am waiting to see if the fluid starts going on it’s own first. The small amount of infection in the scar seems to be responding to the antibiotics. 
if anything causes me concern I will go to see the BCN straight away 

I am waiting to see if the fluid starts to go on its own first. I am concerned if I ask them to remove the fluid by aspiration, that it could well come back again. I have heard some ladies having to have the fluid removed several times over a period of months. So as long as there is no pain and the infection is going with the antibiotics will see what happens.