Port Defunct

Blossom1961Blossom1961 Geelong, VicMember Posts: 168
edited September 24 in General discussion
Well the decision was made today by the oncology nurses that they would no longer use my port. Their reasoning makes total sense to me. Instead of having to return after the herceptin to have it removed, it will now be taken out at the same time as my mastectomy in about ten weeks. We have had seven successful infusions and three failures plus ongoing pain due to possible nerve damage from the initial installation. Some nights the only way I can get to sleep is to place my arm above my head to relieve the pain. I don't think I would have been able to do that straight after the mastectomy so just as well the port will be coming out at the same time. My veins are very visible and easy to find due to the fact I drink a lot  o:) of water! Plus the fact I walk directly before and after chemo so the chemicals do not pool in the one spot. I think the Port is good for normal people but I don't think I fit into that category. 
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  • Blossom1961Blossom1961 Geelong, VicMember Posts: 168
    My Oncologist decided to rescind the port decision. So today I went for my treatment where the nurses once again attemted to draw blood from the port without success. They then put in the 'drano' (not sure of its proper name) sent me for a walk, had me wait and then tried again. Zilch. So down I go to have it dyed and X-rayed but before that happens the xray nurse wants to give it a go. First attempt, blood! Xray doctor cancelled and back up for my chemo treatment I go. 
  • lrb_03lrb_03 Member Posts: 882
    So how are you feeling about keeping it,  having been quite happy to get rid of it? 
    I'm the opposite to most, clinging to my safety net 3 years after my last chemo  :p
  • Blossom1961Blossom1961 Geelong, VicMember Posts: 168
    To be quite honest, I don't know. One nurse hurts me so much when putting in a cannula that it is worth having the port just for her. The other nurses are great. As a public patient they allocate a nurse to you for the day and you are stuck with them so when I get her I know I am in for a tear filled 30+ minutes. Ten minutes for her to dig around with the cannula and twenty for the pain to subside, I only have ten minutes worth of pain with the port. My onco had me look at the pain versus the pain in the worse case scenario of each and the pain with the port was much less than the pain with the cannula when this one particular nurses administers it. Yet I had two nurses that put in a cannula without any pain at all. My Onco said this way I can choose which way I want the chemo administered so if I have a good nurse for the day and if the port is tender that day (probably from me sleeping on it) then I can choose the cannula. As I said, not sure how I feel. I am going to my local GP to see what she can do about the pain under my arm leftover from when they put it in. Thank you
  • AfraserAfraser MelbourneMember Posts: 1,772
    It's hard isn't it about nurses - or pathology staff. I had a couple of blood tests, at a time when I was having them about three time a week, with a staffer who just just couldn't do it. Multiple goes, a lot of discomfort. So I just politely said I couldn't have her again. But of course there was an option, I could have someone else and the pathology centre was entirely understanding. As you say, the port gives you a degree of choice. Best wishes with the GP.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,167
    edited October 8
    My port was moody too. I had mine repositioned because the Muppet who installed it made a critical error but the second try left a slight kink in the tube which showed up when they did a die test. I found that if I positioned myself with a pillow in the centre of my back and my shoulder pulled down it worked. Massive contortions but what ever it takes... It was slow to draw bloods but functioned well enough for infusions. When I had it removed we found that I'd grown very attached to it and there was sheathing on the tube which can form a bit of a plug at the end. When I say I was attached to it, you can read that as I'd completely surrounded it with scar tissue which probably explains why it used to be so sore. Painful or not, it was much better than the alternative.

    The stabby nurse thing is difficult, isn't it? I let them have one go then politely ask for someone else. Don't feel bad about doing that, this is not about them and some people may be assessed as competent but have no talent for finding veins. If you know one of them is no good, have a quiet word when you arrive and say you don't want to be assigned to her. You do have a choice--you wouldn't let a hairdresser who had already given you a crappy cut have another go would you?

     The nurses in our chemo unit are excellent and go to great trouble to get it right. If I have to have bloods taken--i finished chemo in March 2017-- I give them a call and pop in at a time that suits them. I won't go to either of the pathology services because there is no way of knowing who you will get and they are in too much of a hurry.
  • Blossom1961Blossom1961 Geelong, VicMember Posts: 168
    I actually get my bloods done at my local pathology from my arm. They are not too bad.

     The only reason they do bloods at oncology from the port is just a test to see if it is working properly as the taxol can be moody if not pumped exactly where it needs to go. The incompetent nurse is in the oncology treatment area where I get my chemo.

    Sorry, sometimes my posts lack proper explanations. The thoughts are in my head but fotunately no-one can read my head or I would be whisked off to the padded cell!
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,167
    Yeah, best not with the head reading thing. There are not enough loony bins to accommodate us all...both the readers and the readees. :) 
  • Blossom1961Blossom1961 Geelong, VicMember Posts: 168
    That is it! The blasted port is coming out. I am tired of waking up in pain with it. I get little enough sleep as it is. Every morning I have to do a lymph node massage to stop the pain in and under my arm as the port somehow keeps blocking the flow. My osteo was the only one who could work out where the pain was coming from and he relieved it instantly but I now have to continue with manipulating the port out of the way and a lymph node massage. On top of that, the port itself keeps pinching me. When I get the lymph nodes out in three weeks it would be a bigger issue so OUT it goes when they remove the nodes and my poor battered boob. Sorry for the rant. I know a lot of you ladies are dealing with much bigger issues. I am afraid I don't deal with pain well. 
  • kmakmkmakm MelbourneMember Posts: 5,150
    @Blossom1961 Never apologise for a rant about pain! Pain is pain and it is not fun and totally rantable! K xox
  • SisterSister Adelaide Hills, SAMember Posts: 2,849
    Never apologise for it.  Ports are great when they're great - I was very glad to see the back of mine when I was finished with it.
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,167
    This is not a competition @Blossom1961; if it's making you miserable, it's making you miserable. You've given it a go and if it doesn't work then getting rid of it means one less irritation in your life. Mxx
  • Blossom1961Blossom1961 Geelong, VicMember Posts: 168
    @Zoffiel That is a pity. If it was a competition we could all decide not to play. If only it were that easy hey!? Mind you for those people who have to win it would be a tragedy. Sorry, that is my dark side. I don't let it out very often because it always misbehaves but sometimes it just escapes. 

  • ZoffielZoffiel Regional VictoriaMember Posts: 2,167
    Dark sides should be given as much consideration as bright sides, in my grumpy opinion :)
  • Patti JPatti J Member Posts: 161
    edited November 8
    @Blossom1961. The idea of having a port made me more upset even than finding out I have mets. I thought about having to go to hospital, being in a hospital bed, not being able to go to the pool, having more stuff inside me (I already have implants). I also didn't  want another scar. 
    Because I  was so upset, I  tried to talk to a McGrath breast care nurse, who fobbed me off. I then tried to talk to the hospital social worker, who also fobbed me off and told me to talk to my G.P.
    At the moment, I  am having weekly blood tests straight into my veins. I think I  am now completely over being a pincushion. Unfortunately, this will probably go on indefinitely. However, I  am still pleased that I didn't  get a port.
  • Blossom1961Blossom1961 Geelong, VicMember Posts: 168
    @Patti J I wasn't told I had a choice, they just made the appointment for me and I just did what I was told, like a lamb to the slaughter! The thing is, they still have to insert a needle through you each time to get to the port so it isn't as if you get to avoid being pincushioned each time. Most people are okay with the port but mine has been an ongoing nightmare from the time they were putting it in. I amso looking forward to it going even if they do need to canula me every three weeks for the herceptin.
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