the other thing you could try, is to ask if you can have filgrastim/neupogen, to increase your immunity, which might mean you dont get admitted as often?
you would have to self inject into your tummy tho...I manage it, they dont hurt.
let us know how things goxx
Spudgirl, I'm upset that the hospital that you are admitted to can't handle your port. I'm even more appalled at the hospital that gives you your chemo is not properly equipped to access your port correctly. This is just not acceptable. There are lots of patients who need a port. Why was a port placed if they weren't going to use it correctly. You need to contact the correct people and get this fixed. You should not have to have this removed bc of their inadequacies. A picc line is only good for 6 to 12 months. My port has been in for 7 years now! Good luck! FF
Thank you for your lovel words xxx
I saw my Onc yesterday and told him again about the whole problem with the cannulas, and he is suggesting I have my port taken out in order to have a PICC. I want a PICC but I'm really not happy about taking the port out. What if I have a problem with the PICC ? I have heard of people having to have them taken out due to clots or infections etc, Then I have nothing to fall back on 😞
My Onc has said he will contact the team who does them, see if there is anything that can be done to try to adapt my port so more people can use it. He is lovely, I believe he really does want the best for me, but I'm not that keen on how the hospital itself is run.
I've emailed one of the potential hospitals for when I move in the summer to see if they use portacath and not just for chemo. I'll email the other potential hospital too. If they say no, I'll give up on the idea of keeping it 😞
My future is cr@ppy enough without the added stress of something that I shouldn't even have to think about.
I start Eribulin on Monday, if my bloods are good enough. All I can think of is what if I end up getting admitted after? I hate that I'm just worrying about cannulas !
Sorry, I really am not usually this fed up, I'm even annoying myself!
Thanks for listening. xxx
Hi Spudgirl It sounds like you have got more than enough to cope with without getting poor treatment and having to battle a broken and fragmented system as well. At times like this you must feel very much on your own and wish you had a well informed advocate to take your side and speak up alongside you. Do such people exist? Does anyone know? I hope you find a new hospital that will give you better care. Many hugs B xx
Spudgirl, I was going to say exactly what Moijan has said! Any entry to the body is posing the same risk! If they are playing seek and find with your veins they are entering numerous times. Each one creating the chance for infection. There is no excuse for someone on staff not to be trained in accessing your port! I would look for another hospital. You truly have reason to feel down. I'm sorry this has been such a tough time for you! Big Hugs!! Be good to yourself! FF
Hi Spudgirl, I agree the service you are getting sounds just not acceptable.
in your place, i think I would have a. Heart to heart with my onc and ask him if he is able to recommend a different hospital if you needed to be admitted again, ....one where the nurses are trained to use a port a cath at least for any chemo. There should be staff at your oncs hosp who are able to use it.
All entries to a vein, be it picc, portacath or cannula are infection risks, but the nurses giving chemo should have the training to use them safely...(if they havent been trained, then they shouldnt use those).
So sorry you are going thru these traumas..it isnt fair and it isnt acceptable practice.
Sending hugs, Spudgirl - you have had a hard time of it! As Janette says, it's disgraceful that they are not using your Portacath - they are so much easier, and obviously your veins aren't up to all the abuse any more! They need some serious training there!
Thinking of you. Let us know how you get on, and come here for support whenever you need to.
Hi Spudgirl, it's no wonder your feeling down love! You've had it pretty tough, I think it's a disgrace that no one is trained to use your portacath at the hospital!
I think Carolyn could have a point about a "second set of eyes"
Sending you a huge cyber hug ((((()))))
I'm only on here sporadically, usually when I'm a bit more upbeat. However at the moment I feel so low and just not myself and I can't seem to get out of it.
I started chemo last June/July. I had 3 rounds of Docetaxel, with which I ended up in hospital after every one, then they found it wasn't working on my lung mets, but was working on my breastbone and neck.
so they changed me to Carboplatin. I managed to stay out of hospital for the first two, though I did get a bad chest nfection on the second one, treated with antibiotics.
Then after my 3rd round I was admitted to hospital a week later. I was better after a few days but they insisted I needed a chest drain as fluid had been buildImg up since last June. I agreed but ended up with nerve damage when it was put in so was in agony while they sorted out pain relief, the morphine was making me sick so it took two days to get the pain and sickness under control.
The pain was being treated okay after two days but I was still being sick even on anti nausea.
Unfortunately it meant that any water I was taking in I was bringing back up and I became severely dehydrated and no one noticed, so my kidneys nearly packed up. My Onc told me it was extremely serious. It was a horrible time, although they did manage to get enough fluids in me for my kidneys to recover, but then I needed a blood transfusion.
i had a horrendous time every time I needed a new cannula, each one worse than the last. The fourth one, I just could not do it, it was so painful.
i eventually came out 3weeks later.
a CT scan showed the Carboplatin is also not working and all my mets are progressing.
now I absolutely dread having to go back in to hospital. I am still in pain and feel sick most of the time, and the other day I was running a temp but I'm terrified now of having to go back and they'll try to force a cannula in a teeny vein. It's just barbaric. So instead of going to hospital I took some paracetamol and went to bed instead.
I kept asking about a PICC but they talk of it being another possible inlet for infection. I've actually got a portacath, but no one is trained to use them at the hospital (!)
My Onc is now looking at another chemo when I've recovered enough.
i really do try to find the positives in things but at the moment I just don't want to move off the sofa 😞
I am not even sure why I'm writing this, probably just for ideas how to get a bit of happiness back.